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Dementia

The following resources examine caring for people with dementia.

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Towards a middle-range theory of ‘Stability of home-based care arrangements for people living with dementia’ (SoCA-Dem): findings from a meta-study on mixed research

Background: Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability? Methods: Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis. Results: 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs, the carer role, the dyadic relationship and resources; and (3) the context, which is determined by society and culture and the respective healthcare system. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer. Discussion: This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice. This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).

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The Tele‐STELLA protocol: Telehealth‐based support for families living with later‐stage Alzheimer's disease

Aims: We aim to establish the feasibility and acceptability of the Tele‐STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Design: This is a multi‐component, quasi‐experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. Methods: Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8‐week videoconferencing components that address behavioural symptoms—in both the persons with Alzheimer's disease and their Care Partners. In the first component ('Nova'), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component ('Constellation'), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. Discussion: Tele‐STELLA fills a gap in current videoconference‐based psychoeducational interventions in that it offers real‐time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele‐STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. Impact: Tele‐STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele‐STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. Trial Registration: This trial is registered with ClinicalTrials.gov (#NCT04627662).

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Telehealth Interventions for Family Caregivers of Persons with Chronic Health Conditions: A Systematic Review of Randomized Controlled Trials

Objective: The purpose of this study was to provide an in-depth analysis of the components and outcomes of telehealth interventions for family caregivers of individuals with chronic health conditions. Methods: A systematic review of 17 databases was conducted for randomized controlled trials published between January 2002 and January 2017. Interventions were analyzed based on type of telecommunication modality, caregiver and care recipient characteristics, intervention components, and caregiver outcomes. Results: A total of 57 articles met criteria for inclusion. Telephone was the most frequently used mode of telehealth delivery and focused primarily on caregivers of older adults with dementia and stroke. Skills training was the most prevalent treatment strategy across telephone, web, and combined telephone and web modalities. Improved psychological functioning was reported most frequently across telehealth modalities. Conclusion: Telehealth is an effective tool in delivering caregiver interventions and leads to significant improvement in caregiver outcomes. Telephone was used most often to deliver cognitive-behavioral and psychoeducational strategies as compared to web and combined telephone and web modalities. Further research is needed to examine the effects of telehealth interventions on caregiving skills and self-efficacy, as well as health outcomes.

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Technology intervention to support caregiving for Alzheimer’s disease (I-CARE): study protocol for a randomized controlled pilot trial

Background: Informal caregivers of patients with Alzheimer’s disease and related dementias (ADRD) manage a complex spectrum of patient behavioral and psychological symptoms of dementia (BPSD). Mobile health information technologies have quickly become sources for modern social support and chronic disease management. These technologies can improve our understanding of how to care for patients with ADRD and their informal caregivers. A mobile telehealth intervention could help reduce caregiver burden and BPSD. Methods: This is a pilot randomized controlled trial of 60 dyads of patients living with ADRD and their caregivers, to test the feasibility and estimate the potential effect of the Brain CareNotes (BCN) mobile telehealth system. Participants will be recruited from two health systems. Participants will be randomly assigned to either the BCN intervention arm or usual care comparator. Data will be collected at baseline, 3- and 6-month follow-up. The primary objectives of this trial are to assess feasibility outcomes: (a) recruitment rate, (b) data completion, (c) BCN usability, (d) BCN acceptance, and (e) BCN use and assessed either on an ongoing basis or at 3- and 6-month post-intervention. A secondary objective was to estimate the intervention’s effects on caregiver burden and patient BPSD outcomes at 3 and 6 months, assessed by the Neuropsychiatric Inventory. Discussion: The study will assess the intervention feasibility and potential effect size of the BCN telehealth system as a potentially scalable and lower-cost solution for addressing the ADRD public health crisis. Trial registration Clinical Trials. NCT03119259. Registered on April 18, 2017.

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Supporting self-care of long-term conditions in people with dementia: A systematic review

Background: Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses. Objectives: To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy. Design: Systematic review. Data Sources We systematically searched MEDLINE, PsychINFO, Embase and Allied and Complementary Medicine databases up to November 2018. Review methods We identified the long-term conditions most prevalent in people with dementia that require an element of self-management. We then developed our inclusion criteria to identify qualitative and quantitative studies describing the self-management (or self-management assisted by family carers) of long-term conditions in people with dementia. Two authors independently rated study validity using a standardised checklist. We synthesised qualitative and quantitative findings using a data driven convergent synthesis approach. Results: We included 12 articles meeting predetermined inclusion criteria: seven qualitative, two case studies, two quantitative and one mixed methods study. We identified four main themes across these studies: (1) dementia symptoms impeding treatment regimens (forgetfulness, decreased understanding, ability to communicate symptoms and behavioural and psychological symptoms); (2) adapting routines to be simpler, (using memory aids and accommodating physical limitations); (3) negotiating self-management support (carer availability and knowledge; balancing needs for safety and empowerment); and (4) interface with professionals, (Routine simplification, condition specific education, and acknowledging carer role). Conclusions: People living with dementia can be supported to manage their own health for as long as possible, through simplifying routines and reminding, but where this can no longer be negotiated, carers take over responsibility for self-management, often due to safety concerns. Empowerment of people with dementia to remain involved in their care reduces the loss experienced by this transition. Communication and partnership between clinicians and carers is critical when supporting people living with a long-term condition and dementia. Care planning for people living with dementia and a long-term condition should include explicit discussion of how these partnerships will work and guidance on strategies carers can use to support people to self-manage long-term conditions.

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Supporting family carers of people with dementia: A discrete choice experiment of public preferences

Background: Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision. Support for family carers is, therefore, an important policy topic across many countries. Objectives: The focus of this paper is on the propensity of citizens to support enhanced care for family carers in Ireland, as demonstrated by their willingness-to-pay additional taxation to fund different combinations of carer support measures, developed through careful and sustained dialogue with multiple stakeholders, especially family carers themselves. Methods: We carried out a discrete choice experiment (DCE) with 509 members of the general public in Ireland between January and February 2021. Results: Using mixed logit models, our findings show that citizens value four key attributes: regular caring breaks for family carers (day-care and long-break respite); financial compensation (carer's allowance); and emotional support (carer peer support groups). We also estimated the welfare impact of moving from current provision to enhanced support packages for family carers of people with dementia. The welfare gains accumulate to €1035.80 for the most complete levels of provision across the four support attributes. Conclusions: Overall, respondents in this paper showed empathy and understanding towards family carers of people with dementia through their willingness to contribute to funding additional services and supports. 

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Support groups for family caregivers of persons with dementia in India

Background: A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. Objective: The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. Findings: The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. Conclusion: The study found that support groups fulfil an important need for caregivers by providing information and peer support.

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Structuring unequal relations: role trajectories in informal dementia care

Background: Transitions into informal care roles are associated with various characteristics, for example gender and geographic proximity, but such associations are insufficient to explain role delegation, overlooking the interpersonal structure–agency nexuses that constitute role trajectories. Methods: This paper explores unequal role delegation within 7 families affected by dementia, presenting data from interviews with 7 people with dementia and 26 carers living in the community in the United Kingdom. Findings: Two key care roles are identified: the relatively un‐involved role of peripheral actors and the lynchpin role of main carers who take on most of the care tasks. These roles emerge from negotiations around a range of extraneous factors that collectively comprise cumulative baggage, including historic conflicts and childcare commitments. The unequal distribution of care reflects widely noted demographic associations with role delegation, but is enacted and justified through the interpersonal negotiation of personalised meanings regarding individual circumstances and suitability. Conclusions: Though deeply personal when taken at face value, these meanings imbibe sociocultural norms and political economies of care to structurally position family members in relation to each other and signpost appropriate candidates for caring roles, even before such care is required.

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Stakeholders’ perspectives on adapting the World Health Organization iSupport for Dementia in Australia

Background: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. Aim: The aim of the study was to identify stakeholders’ perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. Methods: An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May–July 2018. A thematic analysis was utilised to analyse data and identify findings. Results: In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. Conclusion: Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers. 

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Spouse and Adult-Child Dementia Caregivers in Chinese American Families: Who Are More Stressed Out?

Background: Though many studies have explored differences between spouses and adult children in dementia care, empirical evidence is lacking on racial- and ethnic-minority populations. Methods: To fill this research gap, this study examined care tasks, caregiver burden, and depressive symptoms of Chinese spouse and adult-child caregivers in dementia care. Guided by the stress process model, this study asked 3 questions: Do spouse and adult-child caregivers take up different care tasks and experience different levels of caregiver burden and depressive symptoms? Does gender moderate the differences between spouse and adult-child caregivers? Whether care tasks and burden mediate the association between being a spouse/adult-child caregiver and depressive symptoms? Data were collected from a questionnaire-based survey of Chinese Americans who provided care for their family members with dementia in New York City. The analytical sample included 126 Chinese spouse or adult-child caregivers. Care tasks was indicated by intensity of 8 types of care tasks. Caregiver burden and depressive symptoms were measured by Zarit's Burden Interview and the 10-item Center for Epidemiologic Studies Depression Scale. Linear regression, interaction term (spouse/adult-child caregiver by gender), and path analysis were conducted to address the 3 questions. Results: The results of linear regression show no significant difference in care tasks between the 2 groups, but spouse caregivers had significantly higher levels of caregiver burden and depressive symptoms than adult children. Wives had higher levels of caregiver burden and depressive symptoms than husbands, daughters, and sons. Caregiver burden mediated the association between being a spouse caregiver and higher depressive symptoms, whereas care tasks did not shape such association. Conclusions: This study highlighted the emotional stress of Chinese American older adults in providing care for their spouses. The findings indicate the necessity of developing culturally meaningful activities to support Chinese American spouse caregivers.

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Solution to support informal caregivers of patients with dementia

Background: The dementia is a degenerative uncurable disease. Giving its high prevalence worldwide, it is considered a major global public health concern. Patients with dementia need long-term care and support at home. Current evidence demonstrates that their informal caregivers are prone to psychiatric and cardiovascular diseases and lack formal support that can help them in their exhausting daily routine. We intend to report the creation of an ICT solution to support informal caregivers of patients with dementia, addressing identified needs. Methods: The academic engineering project launched was divided in two phases: 1) requirements analysis and software design and 2) software development and deployment. The user-friendly and smooth functioning application developed, called OneCare, has a set of functionalities that allows the free access to information about the disease, useful resources, medication, outpatient consultation management and communication with peers. Discussion: We consider that this application may improve effectiveness in care provided by informal caregivers of patients with dementia, while having a positive impact in their health outcomes and quality of life. We advocate that future policies in this area should consider the use of this kind of technology as a way to reduce disease burden, institutionalization needs and increase the chances of living well at home.

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Sociodemographic aspects and health care-related outcomes: a latent class analysis of informal dementia care dyads

Background: Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes. Methods: We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements. Results: Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p < 0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as “adult child parent relationship & younger informal caregiver”, “adult child parent relationship & middle aged informal caregiver”, “non family relationship & younger informal caregiver”, “couple & male informal caregiver of older age”, “couple & female informal caregiver of older age”, “couple & younger informal caregiver”. The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes. Conclusion: Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.

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Sociocultural Influences on the Feeling of Loneliness of Family Caregivers of People with Dementia: The Role of Kinship

Background: The extent to which familism, dysfunctional thoughts, and coping variables contribute to explaining feelings of loneliness in caregivers, controlling for kinship, is analyzed. Methods: Participants were 273 family caregivers of people with dementia. Sociodemographic variables, familism, dysfunctional thoughts, coping strategies for requesting and receiving help, perceived social support, and leisure activities were assessed. The fit of a theoretical model for explaining the effect of cultural and psychological variables on feelings of loneliness in each kinship group was tested. Results: No significant differences in the distribution of loneliness by kinship were found. Higher levels of familism are associated with more dysfunctional thoughts, that are linked to more maladaptive strategies for coping with caring (e.g., less social support and fewer leisure activities). This in turn is associated with higher scores in the feeling of loneliness. The model bore particular relevance to the group of daughters, husbands, and sons, yet not in the case of wives. Conclusions: Sociocultural and coping factors associated with the caring process seem to play an important role in explaining feelings of loneliness in caregivers. Sociocultural factors associated with the care process seem to play an important role in explaining feelings of loneliness in caregivers.

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Social Interactions between Family and Community-Based Service Providers in Dementia Caregiving

Objectives: This study aimed to evaluate the psychosocial experiences in community-based dementia caregiving by assessing the characteristics of social interactions between family caregivers and community-based service providers and associated psychological responses. Methods: Two independent groups of participants (family caregivers and community-based service providers) completed a one-time survey to report their social interactions and psychological states. A linear regression model was fit for each outcome (satisfaction, 10-item CES-D) while controlling for significant relevant covariates. Results: Higher perceived levels of collaboration were associated with higher job satisfaction and lower depression score among service providers, and higher satisfaction with providers among family caregivers. Higher perceived social support from the provider was associated with higher satisfaction among family caregivers. Conclusions: Participants reported varying levels of provider-family collaboration. The extent of collaborations and support exchange may have implications on the psychological well-being of those providing care to individuals with dementia including families and providers. Clinical implications: It may be beneficial to identify providers and families who perceive low levels of collaboration and implement intervention to facilitate positive social interactions. Developing organizational culture and payment systems that value high-quality social interactions may help enhance the psychological well-being of service providers and satisfaction among families who receive their services. 

 

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Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers

Aim: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in‐home dementia patient care that focuses on caregiver–patient relationships. Design: This descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Methods: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1‐month observation phase for collecting baseline mood states and a 2‐month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study‐provided smartphone. Caregivers will provide daily, self‐reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. Discussion: This study will develop and test novel in‐home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver.ImpactThe Smarthealth technology discussed will provide in‐home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. Trial Registration: This study was registered with Clinical Trials.gov (Identifier NCT04536701).

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Self-Management of Dementia by Family Carers: A Scoping Review

Background: Family carers increasingly take on the responsibility of self-management of dementia as the condition progresses. However, research on this topic is scarce. Objectives: This scoping review aimed to identify the key characteristics related to self-management of dementia by carers including its components, theoretical/conceptual frameworks that underpinned these components and measurements. Methods: A scoping review was conducted in 8 databases and 16 publications met the inclusion criteria. Results: Twenty-two components were identified and grouped into two categories: activities and carer characteristics and skills. The identified theoretical/conceptual frameworks were numerous and varied as were the measures. There was a little consistency of the key characteristics of self-management of dementia by carers. Conclusions: The findings assist carers and healthcare providers to understand the components involved in self-managing dementia which will guide the development and delivery of self-management support interventions for carers. Further research is required to validate these findings and to develop specialized conceptual frameworks and measures. 

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Self‐efficacy of family caregivers of older adults with cognitive impairment: A concept analysis

Background: Research demonstrates that increased self‐efficacy can help family caregivers of older adults with Alzheimer's and other types of cognitive impairment experience lower burden and depressive symptom severity. Aims: The purpose of this concept analysis is to address fundamental gaps in the understanding of self‐efficacy in family caregivers of older adults with cognitive impairment, including updating the 26‐year‐old concept analysis with a contemporary definition. Methods: This study utilizes Walker and Avant's (2019) concept analysis method, an eight‐step iterative process that helps to clarify ambiguous concepts. A literature review was conducted from July 1993 through March 2019 using PubMed/MEDLINE, Scopus, CINAHL, and Embase. Inclusion criteria encompassed peer‐reviewed research articles and review articles that included family caregivers of older adults with cognitive impairment. Results: Eight defining attributes of this concept are identified. The revised definition of self‐efficacy in this population is a family caregiver's confidence in their ability to: manage behaviors and other caregiving stresses, control upsetting thoughts, acquire medical information, manage medical issues, obtain self‐care, access community supports, assist with activities of daily living and other care, and maintain a good relationship with a relative, friend, or neighbor of an older adult with cognitive impairment. Conclusion: This paper utilizes over a quarter‐century of research to build on the original analysis by Mowat and Spence Laschinger (1994) and update the concept's definition. This analysis should provide researchers with a clearer understanding of this concept and a renewed emphasis on the importance of targeting interventions to improve self‐efficacy in this vulnerable caregiving population.

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The scope of carer effects and their inclusion in decision-making: a UK-based Delphi study

Background and objective: Health and social care may affect unpaid (family) carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify: (i) how different categories of healthcare and social care were perceived to impact on unpaid carers; and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. Methods: A two round, online Delphi study was conducted with 65 UK-based participants (unpaid carers, care professionals, and researchers) with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of these on unpaid carers and whether impacts should be considered in decision-making. Results: Participants predicted interventions and organisational changes would impact on multiple domains of unpaid carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80–81 %) for considering carer effects in research studies, funding decisions, and patient decision-making. Conclusions: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to unpaid carers when introducing interventions and making organisational changes.

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Resilience, Emotional Intelligence, and Occupational Performance in Family Members Who Are the Caretakers of Patients with Dementia in Spain: A Cross-Sectional, Analytical, and Descriptive Study

Background: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. Methods: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. Results: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). Conclusions: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease.

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Relationship-centred CogniCare: an academic–digital–dementia care experts interface

Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.

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Relational counselling as a psychosocial intervention for dementia: Qualitative evidence from people living with dementia and family members

Background: Counselling and other psychotherapeutic interventions can be offered to people with dementia and their caregivers, to treat specific conditions or symptoms (e.g. affective disorders such as depression). Psychotherapeutic interventions also offer the opportunity for individuals with dementia and their families/caregivers to engage in psychological support for a wide range of presentations. However, little is known about how those within this demographic who receive these interventions perceive the experience. Objectives: This study aimed to understand the experiences of individuals with dementia or caring for someone with dementia, before and after a 12-week relational counselling intervention delivered through a third sector organisation within England. Methods: Semi-structured interviews were completed with participants (29 pre-intervention and 25 post-intervention). Framework analysis was conducted, with four main themes identified; expectations and outcomes of counselling, emotional impact of life with dementia, appraisals of identity and importance of therapeutic relationship. Results: Participants reported that counselling interventions addressed a range of needs and concerns that they had, enabling them to reassess and reconsider these. Specific training is needed before therapists deliver therapeutic interventions with people with dementia, to ensure that appropriate support is provided for those with more severe cognitive impairment or who may have fluctuating capacity. Conclusions: Future research should explore the experiences of people with dementia and their caregivers, across different counselling modalities, to establish the appropriateness and effectiveness of relational counselling.

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Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Background: Dementia produces a loss of independence to carry out the activities of daily life. The great demand for care that these people need usually falls on the family through informal care. Objectives: This study aims to analyse the burden showed by the informal caregiver of a person with dementia. Methods: In addition, we analyse whether this burden present in informal caregivers could be related to abusive behaviour. We also study the relationship between the stage of the disease, the appearance of behavioural disorders and the level of burden in the caregiver using the Scales of Zarit, CASE and FAST. Results: The data showed that 45.50 per cent of caregivers have light burden or burden. After the research, it was identified that the presence of behavioural disorders in patients with dementia showed a correlation with the increase in both the main caregiver burden and abuse. An increase in the level of burden is followed by an increase in the level of abuse (r = 0.844; p = 0.000). Furthermore, we analysed several conditions that could have a correlation with this burden and abuse. It was found that burden in the caregiver could be linked with the presence of behavioural disorders, like aggression (r = 0.577; p = 0.008) and irritability (r = 0.600; p = 0.005) at the moderate stage of the disease. On the other hand, there is a positive correlation between the probability that people with dementia suffer abuse in the moderate stage of the disease and the presence of aggression (r = 0.732; p = 0.000), lack of inhibition (r = 0.571; p = 0.009) and irritability (r = 0.827; p = 0.000). Conclusions: Taking this data into account, burden and abuse seem to be linked to the presence of behavioural disorders in patients with dementia in the moderate stage.

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Rapid development of a decision-aid for people with dementia and their families during COVID-19

Introduction: COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis. Objectives: To develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Results: Output from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making. Conclusions: Combining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.

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Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results: Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions: This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

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A qualitative exploration of family carer's understandings of people with dementia's expectations for the future

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care. Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory. Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

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Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review

Background: Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia. Objectives: The objective of this study is to conduct a systematic review of intervention content, effectiveness and subgroup differentiation of mental health interventions for informal caregivers of persons with dementia living at home. Method: We searched four electronic databases (PubMed, PsychINFO, Scopus and CINAHL) and included only methodically high-quality randomized controlled trials (RCTs), published in English or German language between 2009 and 2018. The intervention programmes focused on mental health of family caregivers. A narrative synthesis of the included studies is given. Results: Forty-eight publications relating to 46 intervention programmes met the inclusion criteria. Burden, depression and quality of life (QoL) are the predominant parameters that were investigated. Twenty-five of forty-six interventions (54.3%) show positive effects on at least one of the outcomes examined. Most often, positive effects are reported for the outcome subjective burden (46.2%). Only six studies explicitly target on a certain subgroup of informal dementia caregivers (13%), whereas all other interventions (87%) target the group as a whole without differentiation. Conclusion: The most beneficial results were found for cognitive behavioural approaches, especially concerning the reduction of depressive symptoms. Besides this, leisure and physical activity interventions show some good results in reducing subjective caregiver burden. In order to improve effectiveness, research and practice may focus on developing more targeted interventions for special dementia informal caregiver subgroups.

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Psychometric properties of the turkish version of the revised scale for caregiving self-efficacy

Background: The self-efficacy of caregivers is an important matter that merits investigation, and this requires that the concept of self-efficacy be measured with a valid, reliable instrument. Materials and Methods: This research examined the psychometric properties of the Turkish version of the Revised Scale for Caregiving Self-Efficacy. A sociodemographic form and the Revised Scale for Caregiving Self-Efficacy were employed to collect data from April through December 2019. A total of 250 family caregivers were included in the study, which assessed the content validity, construct validity and reliability of the Revised Scale for Caregiving Self-Efficacy. Results: All 18 items had significant item-to-total correlations (p <0.05). The Cronbach’s alpha coefficient was 0.82 for the total scale, 0.76 for the self-efficacy in obtaining respite subscale, 0.82 for the self-efficacy in responding to disruptive patient behaviours subscale and 0.96 for the self-efficacy in controlling upsetting thoughts about caregiving subscale. Conclusion: The results of this study indicate that the Revised Scale for Caregiving Self-Efficacy is a valid, reliable measurement tool and suitable to the Turkish culture. 

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Psychoeducational Program for the Family Member Caregivers of People with Dementia to Reduce Perceived Burden and Increase Patient's Quality of Life: A Randomized Controlled Trial

Background: Dementia is one of the world's greatest public health issues. Most people with dementia receive home care, and family members are vulnerable to feeling burdened and depressed that reinforces the need for caregiver-driven services to mitigate these negative effects. Objective: The purpose of this research was to evaluate the effect of the psychoeducational program on burden and quality of life of family caregivers for people with dementia. Methods: This randomized controlled trial (RCT) was conducted on 60 family caregivers. Participants were randomly assigned to receive either the 8-session psychoeducational program (study group) or routine care only (control group). The demographic data of the caregivers and their patients, the burden of caregivers using Zarit Burden Interview (ZBI), and the quality of life of the patients using Quality of Life in Alzheimer Disease (QoL-AD) questionnaire were measured before and after the psychoeducational program and compared between the study group and the control group. Results: The results revealed that 80% of the family caregivers were female and 42% were daughters. The mean ± SD of the baseline burden was 61 ± 13.7 and 60.9 ± 10 in the study and the control group, respectively. ZBI burden score in the study group demonstrated a significant drop after the psychoeducational program compared to the control group. Logistic regression analysis showed that caregivers who received the psychoeducational program have OR (95% CI) of 14 (3.1-67.8) compared to those who did not receive the psychoeducational program. Conclusions: Psychoeducational program is effective in reducing the family caregivers' perceived burden. These findings need to be considered in developing comprehensive dementia care programs to well increase the strategies that help caregivers to deal with their patients.

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Providing cancer treatment and care to people living with cancer and dementia: challenges and research-based recommendations

A growing number of people live with cancer and dementia. Dementia creates a particular set of challenges in all aspects of cancer treatment and care, including diagnosis, decision-making, access to appointments, monitoring of signs and symptoms of cancer and side effects of cancer treatment, and management of self-care tasks. People with cancer and dementia often require extensive support from family carers, and those without family support face additional challenges. This article uses the emerging UK evidence base on cancer and dementia to discuss the challenges that arise when providing cancer treatment and care to people with dementia and their families, and to make research-based recommendations on how to improve service provision for that population.

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Preparedness for the death of an elderly family member: A possible protective factor for pre-loss grief in informal caregivers

Background: Pre-loss grief (PLG) has been identified as a robust risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. Therefore, identifying treatment targets to reduce PLG is warranted. "Preparedness" has been found to strongly predict PLG. The work is nascent and a consensus has not been reached about how best to assess for preparedness, and no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The purpose of this study was to develop a preliminary theoretical framework of preparedness for the loss. Methods: This was achieved through prospective semi-structured interviews with family members of Stage 4 Cancer (N = 16) and Advanced Dementia (N = 24) patients. Findings: The overarching theme related to preparedness for the loss was the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Factors associated with the need to establish certainty in the present included, religiosity and spirituality, good relationship quality with the person with the life limiting illness, having access to support, good communication with person with life limiting illness, and acceptance of the impending death. Certainty for the future included, knowing what to expect due to past experience of loss, having plans for life without the person, and social support. Conclusions: This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness.

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Predictors of the one-year-change in depressiveness in informal caregivers of community-dwelling people with dementia

Background: The care of people with dementia is usually carried out by their family members, which can cause objective und subjective burden and raise their risk of depressiveness. Thus, the aim of this study is to identify predictors of the change in depressiveness of informal caregivers over 1 year in order to be able to derive hypotheses for interventions that promise success. Methods: The Bavarian Dementia Survey (BayDem) is a multi-center, longitudinal study conducted at three different sites in Bavaria, Germany. Participants were people with dementia and their informal caregivers. Data was collected at baseline and after 12 months by standardized face-to-face interviews in cooperation with local players. The informal caregivers’ depressiveness was assessed with the WHO-5. Data was also collected on the people with dementia’s cognition (MMSE), behavioral symptoms (NPI) and comorbidities (Charlson Comorbidity Index) as well as caregivers’ social inclusion (LSNS), time spent on care and care contribution (RUD). For statistical analysis, a multiple regression model was used. Results: The data of 166 people with dementia and their informal caregivers was analyzed. Of the latter, 46% were categorized as “likely depressed”. The change in depressiveness over a year was significantly predicted by baseline depressiveness as well as an increase in the time informal caregivers spent supervising the person with dementia. Conclusions: Informal caregivers of people with dementia are at high risk of depression. The time spent supervising the person with dementia has a significant impact on increasing depressiveness. This highlights the importance of support services to provide the informal caregiver with relief and possibly reduce depressiveness.

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Predictors of Depressive Symptoms among Family Caregivers of Patients with Dementia in Java, Indonesia

Objective: Depressive symptoms are common mental health problems among the family caregivers of patients with dementia. However, little is known about the prevalence of depressive symptoms among the family caregivers of patients with dementia in Indonesia. This study aimed to examine: 1) the factors predicting depressive symptoms, 2) the mediating role of social support in the relationship between burden and depressive symptoms, and 3) the association between depressive symptoms and healthcare utilization among family caregivers. Methods: This was a cross-sectional study involving 250 family caregivers of patients with dementia recruited from four hospitals in Java, Indonesia. Data were collected by Zarit Burden Interview (ZBI); the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Mastery scale, the Multidimensional Scale of Perceived Social Support, and the Center for Epidemiologic Studies Depression (CES-D) Scale. Descriptive statistics, chi-square test, hierarchical multiple linear regression, and Baron and Kenny’s regression method were used to analyze the data. Results: The results revealed that about a quarter of the participants (24.8%) experienced depressive symptoms. Caregiver burden, mastery, behavioral and psychological symptoms of dementia, and social support explained 45.5% of the variance in the prevalence of depressive symptoms among family caregivers (R2=0.455). Social support also partially mediated the association between caregiver burden and depressive symptoms. There was no association between depressive symptoms and the use of healthcare services among the family caregivers. Conclusion: The findings revealed that social support is a mediating factor affecting the relationship between caregiver burden and depressive symptoms. Interventions targeting social support to help alleviate caregiver burden would be effective in helping reduce depressive symptoms in the family caregivers of patients with dementia. 

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Predictors of caregiver burden in aged caregivers of demented older patients

Background: Dementia in the oldest-old is projected to increase exponentially as is the burden of their caregivers who may experience unique challenges and suffering. Thus, we aim to investigate which factors are associated with older caregivers’ burden in caring demented outpatients in a multicenter cohort. Methods: Patients and their caregivers, both aged ≧65 years, in the National Dementia Registry Study in Taiwan (T-NDRS) were included in this study. Caregiver burden was measured with the short version of the Zarit Burden Interview (ZBI). The correlations between the ZBI scores and characteristics of caregivers and patients, including severity of dementia, physical comorbidities, instrumental activities of daily living (IADL), neuropsychiatric symptoms assessed by the Neuropsychiatric Inventory (NPI), and family monthly income, were analyzed. Results: We recruited 328 aged informal caregiver-patient dyads. The mean age of caregivers was 73.7 ± 7.0 years, with female predominance (66.8%), and the mean age of patients was 78.8 ± 6.9 years, with male predominance (61.0%). Multivariable linear regression showed that IADLs (β = 0.83, p < 0.001) and NPI subscores of apathy (β = 3.83, p < 0.001)and irritability (β = 4.25, p < 0.001) were positively associated with ZBI scores. The highest family monthly income (β = − 10.92, p = 0.001) and caregiver age (β = − 0.41, p = 0.001) were negatively correlated with ZBI scores. Conclusions: Older caregivers of older demented patients experience a higher care burden when patients had greater impaired functional autonomy and the presence of NPI symptoms of apathy and irritability. Our findings provide the direction to identify risky older caregivers, and we should pay more attention to and provide support for these exhausted caregivers.

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Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

Background: Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving—PAC). Methods: This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Findings: Three primary themes were identified: (1) The Importance and Impact of Family Traditions/Celebrations, (2) Use of Humor in Living and the Difficult Experiences at End-of-Life, and (3) "The Gift of Caregiving." Conclusions: These findings are explored and reviewed in light of other research looking at the positive aspects of caregiving for caregivers taking care of persons living with dementia, finding concurrence and some uniqueness across the results. Implications of the findings for families and social work professionals are reviewed.

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Policy Opportunities to Support Family Caregivers Managing Pain in People with Dementia

The inherent challenges of an aging population and increased frailty include physical, social, psychological, and cognitive issues and associated complexities. With the growing population of persons living with dementia (PLWD), the need for continued support of family caregivers for these individuals also grows. Chronic pain is a common problem among older adults. The 2016 Global Burden of Disease Study reported pain as the leading cause of disability and disease burden globally (Vos et al., 2017). Pain management is a key aspect of the family caregiver role, but many family caregivers need education, support, and training to ensure that their loved ones' pain-related needs are addressed. As the demand for family caregiving increases, policymakers must acknowledge the expanding surrogacy role that caregivers play with PLWD and develop policies to address this need. This paper reviews the problem of pain in PLWD and the family caregiver's role. Two pieces of legislation—the Older Americans Act and the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act—are reviewed as opportunities for pain management nursing policy advocacy.

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Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers

Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically. Data were analysed deductively with reference to these a priori principles. Results: 11 consented persons with dementia and 36 family/carers participated. A total of eight core VIPS concepts were derived from the data. While many occasions of person-centred care occurred, there was variability in staff expertise, interest and aptitude for dementia care work. Neglect of person-centred principles more frequently occurred for the usual care group, where staff failed to place the person and their family/carer at the centre of service. Conclusions: person-centred services for persons with dementia requires that hospital executive equip staff with the relevant knowledge, skills and support to adhere to person-centred care guidelines. Hospitals must address workplace cultures and procedures that favour organisational systems over person-centred services.

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Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Background: Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. Objectives: This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. Methods: We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Results: Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = 0.56). Conclusion: Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

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Perceived health, caregiver overload and perceived social support in family caregivers of patients with Alzheimer’s: Gender differences

Background: Perceived health in caregivers is related to caregiver burden, psychological well‐being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. Objectives: The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers’ gender. Methods: A cross‐sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers’ mean age was 55.35 years (SD = 12.35), with 85.5% (n = 218) being women and 14.5% (n = 37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire‐28; the Caregiver Strain Index, measuring caregiver overload; and the Duke‐UNC‐11 functional social support questionnaire. Results: Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. Conclusion: This study suggests that perceived social support influences the emotional well‐being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in‐depth understanding of the variables determining these differences in family caregivers.

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Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff?

Background: Partnerships between family and nursing staff in nursing homes are essential to address residents' needs and wishes. Collaboration is needed to create partnerships; nonetheless, challenges exist. Aim: This study aimed to gain insights into the experiences of families collaborating with staff. Method: Semi-structured interviews were held with 30 family caregivers of nursing home residents with dementia. Findings: Data reflected three themes, which shaped collaboration with staff from families' perspective, 'communication', 'trust and dependency' and 'involvement'. Discussion: Good communication appeared to be a requisite condition for having trust in staff and quality of involvement in residents' life. Good communication was described as having informal contact with staff, which enabled family and staff to build a personal connection. Consequently, this seemed to increase trust and satisfaction regarding involvement. Conclusion: Findings suggest that increasing informal contact and building a personal connection should be a priority for staff in order to improve collaboration and to create partnerships with families.

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Parkinson’s symptoms and caregiver affiliate stigma: A multinational study

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson’s disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer’s disease are discussed. Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demo-graphic information. Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US. Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD re-main a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues. 

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Pain in persons with dementia and the direct and indirect impacts on caregiver burden

Background: Unresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship. Methods: We examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM). Results: Model fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden. Caregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.

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The place of family caregivers for older adults with Alzheimer’s disease: a literature review in Brazil and the United States

Background: This is a review of the literature on family caregivers of patients with Alzheimer’s disease from 2013 to 2017 available in the BVS, Scopus, and PubMed databases. Methods: The descriptors used (translated from Portuguese) were Alzheimer’s disease, caregivers, elderly health, by combination. Findings: Of the 163 papers analyzed, after applying the relevance test, we selected 26 papers presented from five thematic units: 1- Literature reviews; 2- Prevalence profiles of AD caregivers; 3- Qualitative research that analyzes the feelings and sufferings of caregivers; 4- Comparative studies and objective tests; 5- Evaluation studies of intervention programs. The comprehensive and comparative analysis of the investigations highlighted differences and similarities, advantages, and disadvantages of the samples and methodologies adopted in Brazil and the US. The articles analyzed factors that influence family caregivers’ impact with Alzheimer’s disease, identifying the affective bonds involved, the expected reciprocity, the physical, emotional, and social costs associated with a prolonged chronic illness and requiring increasingly complex care. Conclusions: Family caregivers and older adults with AD require a broad, accessible, or articulated support network inside and outside the family.

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Outcomes valued by people living with dementia and their carers: A qualitative systematic review with a qualitative synthesis

Background: Growing numbers of interventions are being developed to support families living with dementia, but the extent to which they address the issues of most importance to people living with dementia and their carers is unclear. The aim of this review is to synthesise the best available qualitative evidence on the outcomes valued by (a) people living with dementia and (b) their carers, both for themselves and each other. This review is a part of a wider project aiming to improve post diagnostic support for people living with dementia and their carers. Method: We will use thematic synthesis methodology. Studies from 1990 onwards will be eligible if they include qualitative data on the views of people living with dementia or their carers on valued outcomes or the lived experience of dementia. Databases to be searched include MEDLINE, CINAHL, PsycInfo and Social Sciences Premium Collection, in addition to systematically gathered grey literature. Rayyan QCRI software will be used to manage the screening processes and NVivo software will be used to manage data extraction and analysis. The review will also critically evaluate the extent to which international recommendations address the areas of importance to people living with dementia and their families. Results: The results of this review will be presented at the conference. Conclusion: The findings will be of relevance to researchers, policy makers, and providers and commissioners of dementia services.

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The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers

Background: This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. Objectives: The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. Methods: A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention “Online Life Story Book”; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8–10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Results: Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. Conclusions: In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.

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Non-use of community health-care services - An exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

Background: Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. Objectives: The aim of this study was to examine family care-givers' knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Methods: Multinomial logistic regression analysis was used to identify predictors of family care-givers' knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Findings: Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers' knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Conclusions: Strategies aimed at addressing the non-use of services should emphasise individuals' and families' needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care. 

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Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience. Methods: This is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers’ Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together. Results: The mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver’s attitude towards memory decline, their perception of community health services and of the family medicine practice. Conclusions: Our study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.

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Needs of Dementia Family Caregivers in Spain during the COVID-19 Pandemic

Background: We explored the experience from caregivers of people with dementia (PwD) during mandatory confinement due to the COVID-19 pandemic in Spain. Methods: An online survey, which studied the perceptions of the main problems and consequences experienced during confinement, was answered by 106 family caregivers of PwD. Results: Results showed that family caregivers of PwD experienced psychological problems, like anxiety, mood, sleep, or eating disorders during confinement and felt less supported when they had to handle challenging behaviors or offer meaningful activities. Conclusions: An innovative multi-Tiered supportive approach is needed which considers a post-pandemic reality and ensures the continuity of quality care for PwD and their family careers. 

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Namaste care delivered by caregivers of community‐dwelling older adults with moderate to advanced dementia: A mixed methods study protocol

Aim: The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community‐dwelling older adults with moderate to advanced dementia. Design: A multiphase mixed methods design combining quantitative and qualitative methods will be used. Methods: This study is composed of two phases. Phase 1 is guided by a qualitative description approach. Small group workshop sessions with 8–10 caregivers of community‐dwelling older adults with moderate to advanced dementia will be conducted to adapt Namaste Care. In Phase 2, 10–20 caregivers will receive training and implement the adapted Namaste Care approach at home. A one group, before‐after design will be used to evaluate feasibility, acceptability and preliminary effectiveness of the approach over 3 months. Feasibility will be assessed using quantitative measures and acceptability will be explored using qualitative methods. Outcomes to evaluate preliminary effectiveness include quality of life (QoL), positive perceptions of caregiving, self‐efficacy, and caregiver burden. Discussion: There are currently few skill‐building interventions that can be delivered by caregivers of people with moderate to advanced dementia at home. Caregivers should be involved in developing programs to enhance program relevance. This research will be the first to explore the feasibility of implementing the Namaste Care approach at home by caregivers. Impact: Study results will provide important information about the feasibility and preliminary effects of an adapted form of Namaste Care. This program has the potential to improve the QoL of caregivers and may prevent hospitalization or long‐term care placement of older persons with moderate to advanced dementia. The revised Namaste Care program supports building the skills of caregivers so that their needs and the needs of older persons with dementia living at home are being addressed.

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"My quiet times": Themes of sleep health among people caring for a family member with dementia

Background: This research explores and represents the sleep of people caring for a family member with cognitive impairment or dementia. Methods: A thematic analysis was applied to the open-ended comments from 526 carers from a postal survey concerning sleep, health and caregiving. Themes are presented within a framework of five dimensions of sleep health. Findings: Themes of sleep duration included striking a balance between 'achieving the hours' whilst also sacrificing sleep to manage responsibilities. Themes of sleep efficiency included symptoms of insomnia ('losing sleep over the situation') and 'sleeping on guard' in case night-time support was required. Timing of sleep was themed as either restricted to 'when the one I care for sleeps' or salvaged as a luxury 'quiet time'. Levels of alertness were represented within themes of being 'tired all of the time' whilst also in a state of 'high alert'. Finally, overall sleep satisfaction ranged from themes concerning 'sleeping fine at the moment' to sleep being 'a big problem'. Conclusion: The sleep experience of family carers is unique and often includes tensions between roles and responsibilities and their own need for sleep and well-being. Findings have implications for community support and healthcare interventions for families affected by dementia.

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"My backpack is so heavy": Experiences of Latino caregivers of family with early‐onset Alzheimer's

Background/Objectives: While it is well‐known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early‐onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Methods: Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. Results: The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co‐morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how‐to videos on caring for a loved one but also topics related to self‐care for caregivers. Conclusions: Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self‐efficacy. Better access to dual‐language information and support could encourage early help‐seeking but also improve caregivers' quality of life as they manage long‐term caregiving responsibilities.

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Modifiable factors associated with behavioural and psychological symptoms of dementia among patients residing at home: The impacts of patient, caregiver and environmental variables

Objectives: The present study aimed to explore the modifiable factors of behavioural and psychological symptoms of dementia (BPSD) among patients residing at home in terms of patient, caregiver and environmental factors. Methods: A cross-sectional survey of 193 patients with dementia residing at home and their caregivers who visited the memory clinic of the Department of Neurology in a tertiary (the highest level) hospital in China from November 2018 to May 2019 was performed. Results: Exacerbated BPSD were associated with patient (old age, high education level, increased dementia severity, and the use of psychotropic drugs), caregiver (low positive aspects and high expressed emotion) and environmental (poor home environment) factors. The use of psychotropic drugs by the patient, positive aspects and expressed emotions of the caregiver, and home environment were modifiable factors that provided evidence for the direction of intervention for BPSD among patients residing at home.

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Mobile Apps to Support Family Caregivers of People With Alzheimer Disease and Related Dementias in Managing Disruptive Behaviors: Qualitative Study With Users Embedded in a Scoping Review

Background: People with Alzheimer disease and related dementias often display disruptive behaviors (eg, aggression, wandering, and restlessness), which increase family caregivers’ burden of care. However, there are few tools currently available to help these caregivers manage disruptive behaviors. Mobile apps could meet this need, but to date little is known about them. Objective: The aims of our study were to identify existing mobile apps designed to support family caregivers of people with Alzheimer disease and related dementias in managing disruptive behaviors; explore whether family caregivers view these mobile apps as relevant to meeting their needs and as useful in managing disruptive behaviors; and document the types of mobile apps that are of interest and appeal to most family caregivers (with regard to format, ergonomics, and clarity). Methods: A review of mobile apps initially conducted in February 2018 was updated in March 2019 with 2 platforms (App Store [Apple Inc.] and Google Play [Google]). The selected apps were first analyzed independently by 3 raters (2 students and 1 researcher) for each of the platforms. A focus group discussion was then held with 4 family caregivers to explore their perceptions of the apps according to their needs and interests. The content of the discussion was analyzed. Results: Initially, 7 of 118 apps identified met the inclusion criteria. An eighth app, recommended by one of the knowledge users, was added later. Four family caregivers (women aged between 58 and 78 years) participated in the discussion. Participants expressed a preference for easy-to-understand apps that provide concrete intervention strategies. They reported being most inclined to use two apps, Dementia Advisor and DTA Behaviours. Conclusions: Few mobile apps on the market meet the needs of family caregivers in terms of content and usability. Our results could help to address this gap by identifying what family caregivers deem relevant in a mobile app to help them manage disruptive behaviors.

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A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family

Objectives: To examine the feasibility and acceptability of NIDUS-Family, a 6–8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention. Methods: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. Results: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. Conclusions: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

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A mixed methods systematic review of informal caregivers' experiences of fall risk among community‐dwelling elders with dementia

Background: Evidence on effective fall prevention strategies for community‐dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. Objectives: This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses. Methods: A mixed methods systematic review of 10 databases (PubMed, PsycINFO, CINAHL, Social Service Abstracts, Social Work Abstracts, EMBASE, Web of Science, Scopus, Cochrane Library and TRIP Medical Database) was conducted. We searched English language, peer‐review articles (January 1, 1985–March 20, 2020) that met the predefined inclusion/exclusion criteria. Study quality was assessed using the Mixed Methods Appraisal Tool. Data were analysed using thematic synthesis techniques. Findings: Twenty‐nine studies were included. Six analytic themes were generated concerning caregivers' perceptual, emotional and behavioural responses: (a) fear of the negative health consequences of falls; (b) limited insights into factors contributing to falls; (c) varying expectations of managing fall risk; (d) multi‐level efforts; (e) struggling with responsibilities; and (f) inaction and withdrawal. The findings about the outcomes and effects of caregivers' behaviours were synthesised into three analytic themes: (a) multi‐faceted outcomes; (b) uncertain and inconsistent evidence; and (c) unclear associations. Conclusions: The study generated new insights in understanding caregivers' responses of fall risk among community‐dwelling elders with dementia and identified significant gaps in examining the impact of caregivers' responses and what shapes these responses. Investment in understanding caregivers' perspectives will inform future interventions and policies to reduce negative outcomes for elders, caregivers and care systems.

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The meaning of autonomy when living with dementia: A Q-method investigation

Background and Aims: Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice. Methods: Twenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked. Results: Three factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active. Conclusions: This study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care.

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Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

The dyadic perspective is important to understand the mutual influence and interdependence of both the person living with dementia and their care partner. This perspective is routinely adopted in social research programs for dementia and many dyadic interventions have been developed. However, economic evaluation and modelling to date has often failed to incorporate caregivers’ perspectives, and their respective costs and outcomes while giving care for the person with dementia. On the occasions that this has been done, caregivers were represented as “informal costs” associated with dementia. This limited perspective cannot incorporate two-way interactions of the dyad in economic evaluations of dementia programs. This paper provides an overview of the possible interactions between people living with dementia and care partners as discovered in social science literature in the past 20 years. We demonstrate the strength of the relationships and discuss strategies for incorporating the dyadic perspective in economic evaluations of dementia programs in the future.

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Making Qualitative Interviews in Music Therapy Research More Accessible for Participants Living With Dementia – Reflections on Development and Implementation of Interview Guidelines

Purpose: This paper reports findings from a project that sought to develop accessible guidelines for including people with dementia in qualitative interviews in a music therapy study, based on experience from people previously involved in qualitative music therapy research. Method: People with previous experience of qualitative music therapy research were invited to participate in semi-structured interviews about how the interview process could be made more accessible. Participants included four family-caregivers and three music therapy-researchers. Interview data were analysed using thematic analysis. Findings were used to develop guidelines for a subsequent study; reflections on the implementation of these guidelines are provided. Results: Five themes were identified: (a) motivators and barriers to participating in interviews; (b) pragmatic elements that impact interview participation; (c) relationship dynamics may impact the interview; (d) familiarity fosters comfort, enables preparation and support and (e) broader considerations for accessible research design. Conclusions: Themes identified align with reports from the extant literature. Reflections on implementation of the guidelines reveal the need for more clarity around the ethics of building rapport in qualitative research. Implications about future uses of the guidelines, including the use of music as a research tool are discussed. 

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Long-term effects of telephone-based cognitive-behavioral intervention for family caregivers of people with dementia: Findings at 3-year follow-up

Background: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. Objective: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support). Methods: Caregivers of PwD were randomly assigned to receive Tele.TAnDem consisting of 12 sessions over 6 months (intervention group [IG]) or usual care (control group [CG]). At 3-year follow-up (i.e., 2.5 years postintervention), 29 caregivers in the IG and 22 caregivers in the CG were still caring at home for a PwD. Results: Caregivers in the IG reported significantly lower caregiver burden and higher quality of life regarding social relationships. Conclusions: Tele.TAnDem is successful in buffering detrimental effects of caregiving on caregiver burden and social relationships in the long term. The small- to medium-sized effects lie in the range of effect sizes reported in the few previous investigations. The findings add to the scant evidence that interventions yielding long-term outcomes have to date mostly been multicomponent interventions based on CBT principles with structured techniques and at least seven sessions over more than 2 months. 

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Live hospice discharge: Experiences of families, and hospice staff

Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed. 

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"A Little Bit of Their Souls": Investigating the Concept of Dignity for People Living With Dementia Using Caregivers' Blogs

Background: Dignity is an important component of quality of life and a core value of family nursing care. Few studies have explored dignity in community-dwelling adults with dementia. Methods: This study used blogs written by caregivers to explore the concept of dignity in dementia caregiving. A template analysis of blogs written by family caregivers of people with dementia was conducted. Findings: Four themes were defined a priori in relation to Jacelon's model of dignity: perceived value from others, self in relation to others, behavioral respect, and self-value. Caregivers wrote about experiences that related to each of the four a priori themes from Jacelon's model. In addition, the theme of dignity by proxy was derived from the analysis. Conclusions: By understanding the concept of dignity in the context of dementia family caregiving, interventions and services can be developed to improve family quality of life through dignifying, family-focused care.

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Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

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Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim. A thematic analysis was performed to determine the themes and subthemes in the results. Findings: The results revealed that participation in programmes and activities was not the single factor leading to transformative outcomes; family support, self-adjustment, the ability to cope, and coordinated intervention in accordance with individual preferences and needs also facilitated transformative outcomes for nonparticipants. Conclusions: Further studies should focus on interventions modifying factors of perceived caregiver burden, for instance, by providing psychological support to informal caregivers, offering programmes and activities targeting the management of neuropsychiatric symptoms in patients with dementia, and supporting quality of life. 

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The Latino Family Caregiving Experience Along the Trajectory of Dementia

Background: The number of people affected by dementia continues to increase. Dementia is progressive and affects the ability of the person to care for themselves with time. The persons living with dementia have cognitive changes that worsen over time and affect their physical function. Latino families are known for being a collectivist culture who value family. There are studies that describe the experience of caregivers caring for someone with dementia; however, vi few are focused on multiple family members. There is also a need for further research, specifically on Latino families going through this experience. Methods: Qualitative descriptive design with grounded theory strategies was used for this study. The Chronic Illness Trajectory Framework was used as a sensitizing framework. Bilingual and monolingual (Spanish/English) Latino/Hispanic dementia caregivers were recruited. A total of 11 families were interviewed. Constant comparative analysis was used. Initial codes were created and then grouped into categories which were further broken into themes. Results: Five categories emerged from the data analysis. These categories included: (a) culture in caregiving, (b) learning about dementia, (c) relationships, (d) emotional responses, and (e) challenges and strengths. Each category had an impact on family caregivers throughout the trajectory of dementia. Culture was shown to have a large impact on the overall experience. Conclusions: This study contributes to the body of knowledge surrounding Latino family dementia caregivers. These findings facilitate a better understanding of the experiences of these families. One of the more significant findings was that of conflict within these families and how it affects the caregiving experience. In time, this information can enable the creation of interventions for this population and improve their experiences. These interventions, in turn, can promote better outcomes for caregivers and their loved ones. 

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"It Wasn't Like We Expected": Analyzing (Non-)Participation of Family Caregivers of People With Dementia in Sports Activities From Different Perspectives

Background: Family caregivers of people with dementia represent a physically and psychologically burdened target group, which can benefit from offers of health promotion, but rarely use existing services. This article deals with the motives and conditions that induce this target group to be (not) active in sports. Methods: For this purpose, the perspectives of family caregivers and local sports clubs in Germany are compared to uncover similarities and discrepancies with the aim of developing target group-specific health promotion services. Results: Results were classified into three dimensions for (non-)participation in sports activities. People who participated in sports club programs generally confirmed its positive effects. Among other things, the sports clubs and family caregivers surveyed emphasized the compatibility of the care situation with possible leisure activities as very important components for (non-)participation. Conclusions: The results show that the subjective health attitudes must be taken into account in the design of health promotion offers.

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Involvement in self‐care and psychological well‐being of Spanish family caregivers of relatives with dementia

Background: The provision of continuous care to a dependent person can lead to a lack of self‐care by the caregiver themselves with corresponding low levels of well‐being. This well‐being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked. Objectives: This study aims to increase the understanding of the connection between this type of psychological well‐being and involvement in self‐care activities, and to be a starting point for the determination of categories that may serve in the screening of potential participants in social‐health interventions where it is being promoted. Methods: Taking the hypothesis of a probable positive connection between psychological well‐being and involvement in self‐care, an observational study was carried out on 45 caregivers of relatives with dementia. Results: In those caregivers showing greater dedication to self‐care, a higher score was obtained on the well‐being scales connected to personal significance and positive emotions and experiences. These findings were further reinforced by the identification of other positive connections, the involvement in self‐care and the six dimensions of wellness contemplated by Ryff. It is possible to envisage the existence of a virtuous circle in respect of the caregiver, whereby a greater involvement in self‐care is related to a higher psychological well‐being, which in turn is related to greater self‐care, and so on.

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Investigation of the effects of interventions made according to the Progressively Lowered Stress Threshold Model on the care outcomes of Alzheimer patients and their families: a randomized clinical trial

Background: One of the non‐pharmacological methods used to reduce behavioural problems of Alzheimer's patients and the negative emotions accordingly experienced by caregivers consists of interventions performed according to the Progressively Lowered Stress Threshold (PLST) model. Methods: This randomized controlled study aimed to determine the effect of interventions performed according to PLST on the care burden, care satisfaction, and life satisfaction of caregivers of middle and advanced stage Alzheimer's disease patients, and on the neuropsychiatric symptoms and agitation levels of these patients. The research was conducted with a total of 29 caregivers divided into intervention (15) and control (14) groups. Data were collected using an Introductory Information Form, plus the Standardised Mini‐Mental State Examination, Neuropsychiatric Inventory, Cohen‐Mansfield Agitation Inventory, Carer's Assessment of Satisfaction Index, and Life Satisfaction Scale. Three home visits were made to the caregivers by the researchers in the first, second, and twelfth weeks of the intervention. During the home visits, face‐to‐face training was given as necessary to the individual caring for problems identified in the nursing care plan according to PLST. Results: As a result of the PLST training, there was a decrease in the behavioural problems of Alzheimer's patients, along with a decrease in the care burden of the caregivers and an increase in their care satisfaction. When the scale total scores of the individuals in the intervention and control groups were compared, it was found that only caregivers' care satisfaction increased at a statistically significant level (P < 0.05). Conclusion: At the end of the training given according to PLST, it was found that behavioural problems of Alzheimer's patients and the care burden of caregivers had decreased, and the care satisfaction of caregivers increased. It is recommended that Alzheimer's patients and their caregivers be given training and interventions according to PLST.

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Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Objectives: The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. Methods: A search of published articles in eight databases was performed. Results: In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Conclusions: Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. 

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Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

Background: Neuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. Objectives: The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home. Design: A longitudinal cohort study with 2 years of follow-up. Setting: PwD and their informal caregivers living at home in the south of the Netherlands. Participants: 112 dyads of PwD and their caregivers from the MAAstricht Study of BEhavior in Dementia. Main outcome measures: EE was measured at baseline with the Five-Minute Speech Sample and was used to classify caregivers in a low-EE or high-EE group. Associations between EE and neuropsychiatric subsyndromes (hyperactivity, mood and psychosis) measured with the Neuropsychiatric Inventory (NPI) were analysed over time. Results: Seventy-six (67.9%) caregivers were classified in the low-EE group and 36 (32.1%) in the high-EE group. There was no difference between the EE groups in mean NPI scores over time. In the high-EE group, hyperactivity occurred more frequently than in the low-EE group at baseline (p=0.013) and at the other time points, but the mean difference was not always significant. There were no differences for the mood and psychosis subsyndromes. PwD with caregivers scoring high on the EE subcategory critical comments had an increased risk of institutionalisation (OR 6.07 (95% CI 1.14 to 32.14, p=0.034)) in comparison with caregivers scoring low on critical comments. Conclusions: High EE in informal caregivers is associated with hyperactivity symptoms in PwD. This association is likely to be bidirectional. Future studies investigating this association and possible interventions to reduce EE are needed.

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Institutionalization of older French adults with dementia: Role of the informal carer's degree of kinship

Background: The institutionalization of a patient with Alzheimer's disease or other dementia (ADOD) is the last resort for the latter's family and/or caregivers. We hypothesized that the degree of kinship between the patient and his/her caregiver would influence the likelihood of institutionalization. Objective: To assess the association between institutionalization of patients with ADOD and the degree of kinship with the family caregiver. Methods: A cross‐sectional study of patients with ADOD aged 75 or over attending a memory center in France for the first time between 2011 and 2014, as recorded in the French National Alzheimer Database. Multivariable logistic regression was used to assess factors associated with institutionalization after adjustment for age, sex, the Mini‐Mental State Examination score, educational level, and type of dementia. Results: A total of 52,874 patients were included. The primary caregiver was most often a child (54.8%) or the spouse (36.7%). Compared with the "spouse" reference category, all the other caregiver categories were associated with a significantly greater likelihood of institutionalization; the odds ratio [95% confidence interval] was 4.68 [3.67–5.92] when the carer was a grandchild, 5.48 [4.93–6.09] for a child, 4.93 [4.11–5.91] for a daughter‐/son‐in‐law, 8.76 [7.15–10.70] for a sibling, and 8.93 [7.48–10.65] for a niece/nephew. Conclusion: The likelihood of institutionalization of older patients with ADOD varied with the degree of kinship. Compared with the "spouse" reference category, the likelihood was higher for all other types of caregivers but was especially high when the caregiver was not a direct descendant of the patient.

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Innovative methods for involving people with dementia and carers in the policymaking process

Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method: A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution: People with dementia and carers were involved in study design, data analysis and presentation.

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Informal carers' support needs when caring for a person with dementia – A scoping literature review

Background: Informal carers of people with dementia report having unmet needs for support and few supportive interventions have been shown to be effective. There is a need to develop needs assessment instruments and supportive interventions with a holistic and person‐centred approach to meet the various and complex needs of carers. Objectives: The aim of this study was to provide an overview of carers' support needs when caring for people with dementia with the objectives to map and synthesise knowledge on key concepts of carers' support needs. Methods: A scoping review methodology was used. A literature search was conducted in PsycINFO, CINAHL, PubMed and EMBASE between January 2007 and October 2019. Three authors independently selected articles meeting the inclusion criteria, and data were extracted using a matrix developed for that purpose. Inductive content analysis was used to synthesise key concepts of carers' support needs. Results: The search identified 2748 articles after removing duplicates, and 122 articles were included in the mapping of carers' support needs. Synthesising carers' support needs indicated that the full extent of support needs emerges in the interaction between the carer and the person cared for and that it is possible to categorise support needs into four key concepts related to: 1) the carer as a person, 2) managing being a carer, 3) providing care, and 4) knowledge of dementia. Conclusion: The findings of this study help to map a framework describing carers' support needs that may guide the development of future needs assessment instruments and supportive interventions.

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Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. Results: Across indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. Conclusion: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. Trial registration This article does not report the results of a health care intervention on human participants.

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Informal caregivers and persons with dementia’s everyday life coping

This qualitative study explores informal caregivers’ experiences of supporting persons with dementia’s everyday life coping. In the future, there will be fewer health personnel, increased dementia prevalence and limited nursing home availability. Accordingly, close relatives may be compelled to assume greater care responsibilities. Knowledge concerning persons with dementia’s everyday coping from the perspective of informal caregivers remains insufficient, despite these people’s importance for those with dementia. This investigation analyses informal caregivers’ perceived challenges and pleasures in providing care, how home health care affects everyday life coping and the factors that are most important to informal caregivers in supporting care receivers.

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The Influence of Confucianism on the Perceptions and Process of Caring Among Family Caregivers of Persons With Dementia: A Qualitative Study

Background: Scant evidence reveals the influences of Confucianism on family caregiving in dementia. The purpose of this study was to explore the influence of Confucianism on the perceptions and process of caring among the Chinese family caregivers. Method: A qualitative study was conducted using semistructured interviews with 15 Chinese family caregivers of persons with dementia in three elderly care centers in Hong Kong. The interviews were audiotaped and transcribed, while a thematic analysis was performed to analyze the transcript at the latent level. Results: Three themes emerged from the interviews: (a) setting family as a top priority, (b) growth and development in families, and (c) enhancing family relationships. Discussion: Our findings provided insights into how Confucianism influences the experience of family caregivers in caring persons with dementia in Chinese communities. These findings help develop culturally adapted interventions to improve the support for family caregivers of persons with dementia.

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An Individual Cognitive Stimulation Therapy App for People With Dementia and Their Carers: Protocol for a Feasibility Randomized Controlled Trial

Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer’s life. Objective: The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. Methods: We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. Results: This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. Conclusions: This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. Trial Registration: ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 International Registered Report Identifier (IRRID): DERR1-10.2196/24628

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Improving the Quality of Life of Family Caregivers of People with Alzheimer’s Disease through Virtual Communities of Practice: A Quasiexperimental Study

Background: Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. Objectives: This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results: Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Conclusions: Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.

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Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self‐help group for relatives of people living with dementia

Background: Public involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases. Objective: This article reports on an attempt to involve members of a self‐help group for relatives of people living with dementia as co‐researchers in the data analysis in a short‐term format. Methods: One researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co‐researchers independently assigned pre‐defined values to these statements. Subsequently, we compared the values of the researchers and co‐researchers. Results: The members of the self‐help group identified four original values not considered by the researchers: consent, inclusion, participation and respect. Discussion: The involvement of co‐researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co‐researchers and interview participants impeded the data analysis. Conclusion: The challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group‐specific research involvement. Our recommendations relate to the recruitment of co‐researchers, requirements for conducting a participatory data analysis and the participation degree of people involved. Patient or Public Contribution: The group of co‐researchers participating in the data analysis consisted of relatives of people living with dementia.

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Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study

Background and Objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). Discussion and Implications: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

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Importance of Day-Care Centers in Dementia Care: A case Study From India

The caregivers of persons living with dementia (PLwD) have to provide full-time caregiving to the individual, in addition to other responsibilities in their own life. Providing care to a PLwD affects their quality of life and mental health. In such a context, clinicians have to guide caregivers in decreasing caregiver's burden through appropriate referrals. Day-care centers can be one such service, which is illustrated with the support of a case here.

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Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience? Results: Results show that about one-quarter of both subsamples experienced a deterioration in their financial status. A decline in both general and mental health was also reported. Due to “lockdown”, family carers’ burden increased substantially. Utilization of care-related help decreased, and the share of those left with no help increased in both countries. Cross-country differences emerged in terms of dementia care system, severity of the first pandemic wave, and measures put in place by governments. Findings outline the weaknesses of support structures and their country-specific vulnerabilities to a worldwide pandemic. Conclusions: To better protect people with dementia in the future, it is essential to strengthen their family carers, and support structures need to be re-evaluated and re-designed. 

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Impact of Social Isolation on People with Dementia and Their Family Caregivers

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries. 

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The Impact of COVID-19 Quarantine on Patients With Dementia and Family Caregivers: A Nation-Wide Survey

Background: Previous studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer’s disease and other dementias, and evaluated caregivers’ distress during COVID-19 quarantine. Methods: The study involved 87 Italian Dementia Centers. Patients with Alzheimer’s Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients’ changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers’ psychological features. Results: 4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [0.65-0.85]; and 0.72 [0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress. Conclusions: Our study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers’ burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.

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The Impact of Dementia Daycare Service Cessation Due To COVID-19 Pandemic

Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers’ stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. Results: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. Conclusions: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.

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Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic. 

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Impact of COVID-19 on Dementia Caregivers and Factors Associated With their Anxiety Symptoms

Background: Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. Objectives: The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Methods: Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Results: Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Conclusions: Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being during this unprecedented pandemic.

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Impact of Alzheimer’s Dementia on Caregivers and Quality Improvement through Art and Music Therapy

Background: Dementia is a general term for a series of medical conditions that affect the brain and evolve progressively. According to the literature, there are over 200 subtypes and causes of dementia, with Alzheimer’s disease (AD) being the most common in elderly people. AD is an irreversible progressive neurodegenerative condition that leads to a decline in mental function, enough to disrupt daily life. Thinking skills slowly deteriorate, which, in advanced stages, makes it impossible to perform simple tasks. Besides the change in the quality of life of AD patients and their families, there is a considerable alteration in the quality of life of their caregivers, whose health can be negatively affected by the development of mental and somatic disorders. Methods: This article reviews the literature in order to reveal the benefits of applying non-pharmacological interventions such as music and art therapy to improve quality of life. This article also aims to shed light on the impact of this disease on the caregiver’s life. Findings: Music and art therapy have produced reliable results in the treatment of patients with AD, and the best effects are related to increased socialization and the maintenance of social status.

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I Was Not Expecting That! Ethical Dilemmas in Alzheimer’s disease and Alzheimer’s Disease Related Dementia Caregiving Research

Background: Alzheimer’s disease and Alzheimer’s disease Related Dementias (AD/ADRD) affect all aspects of life and relationships for those involved. Female family caregivers constitute an informal (unpaid) and critical workforce who provide 83% of the care for persons living with AD/ADRD in the community settings (Alzheimer’s Association, 2021). In 2020, U.S. informal caregivers provided an additional 400 million hours of unpaid care valued at $244 billion (18.6 billion hours) in comparison with 2017 (Alzheimer’s Association, 2021). Consequently, family caregivers of persons with AD/ADRD report a loss of mental, emotional, physical health 50% more often than other caregivers (Alzheimer’s Association, 2021). Family caregiving of a loved one with AD/ADRD is often counterintuitive and based on trial and error. Caregivers cannot subjectively understand their family members’ challenges with AD/ADRD. Thus, either partner of the AD/ADRD caregiving dyad may be at risk for injury or harm. Family dementia caregiving is often challenging due to the neurocognitive deficits associated with dementia, especially in later stages. The typical slow progressive nature of AD/ADRD often obscures a family dementia caregiver’s ability to identify important functional neurocognitive changes.

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'I want to make myself useful': the value of nature-based adult day services in urban areas for people with dementia and their family carers

Background: Nature-based adult day services (ADSs) in urban areas are relatively new services in the Netherlands. Since knowledge about these services is still scarce, this study aimed to elucidate their value for people with dementia and their family carers in terms of health and wellbeing. Methods: We interviewed 39 people with dementia attending nature-based ADSs in urban areas and their family carers, and 17 providers of these services. Results: Respondents indicated that nature-based ADSs in urban areas positively affected the health and wellbeing of people with dementia. According to them, these services support contact with nature and animals, activity engagement, physical activity, structure, social interactions, healthy eating, a sense of meaning in life and a focus on normal daily life. Respondents further indicated that these services stimulate respite, reassurance and maintenance of family carers' own activities and social contacts. Conclusions: We conclude that nature-based ADSs in urban areas have a wide range of benefits that might affect the health and wellbeing of people with dementia and their family carers. Worldwide, demand is growing for innovative practices in dementia care. It is therefore worthwhile monitoring the development of dementia care innovations, such as nature-based ADSs, and for countries to exchange lessons learned from these services.

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'I try my best ... I try to relieve the burden of my mum': a narrative analysis of the everyday care-giving experiences for five intergenerational Singapore-Chinese families where one member has dementia

Background: Singapore is experiencing a rapid growth in its ageing population with most of the islands' inhabitants living in high-rise apartments due to the scarcity of land. The Chinese community living in Singapore comprises the largest ethnic group and they are more likely to live together under one roof in an intergenerational family grouping. Currently, there are gaps in understanding intergenerational Singapore-Chinese families and their approach to caring at home for a family member with dementia. Objectives: The aim of this longitudinal qualitative study was to understand better this everyday care-giving experience. Methods: Using semi-structured biographical interviews and digital photographs to elicit family stories, five intergenerational Singapore-Chinese families were visited at home for a period of between six and 15 months. Each recruited intergenerational family was treated as a 'case'. Narrative analysis of the data was applied within and between cases and resulted in the emergence of three themes that represented various dynamics in the data. Findings: The three themes were identified as: (1) family values, which is about the cultural context in which everyday care takes place, the religious beliefs and practices of the intergenerational Singapore-Chinese families, and the practice of filial piety; (2) family support, which is about everyday access to family and service networks, including the contribution of the live-in maid in caring for the family member with dementia; and (3) family bonds, which is about the maintenance of intergenerational family relations in the Chinese family kinship system.

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How Transitions in Dementia Care Trajectories Affect Health Problems in Partners: A Longitudinal Analysis With Linked Health and Administrative Data

Objectives: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results: About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Conclusions: Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health.

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Home-based occupational therapy for adults with dementia and their informal caregivers: A systematic review

Background: People with dementia require tailored interventions to support participation and performance in their desired occupations, and informal caregivers need interventions that reduce caregiving burden to enable them to continue with their roles. Objective: This systematic review investigated whether home-based occupational therapy interventions for adults with dementia and their informal caregivers optimized care recipients’ performance of daily occupations and reduced caregiving burden and improved caregivers’ sense of competence. Methods: Eight databases were searched from 1946 to November 2019 using MeSH terms, keywords, and subject headings as appropriate for each database. Inclusion criteria were quantitative studies investigating the effects of home-based therapy provided by a qualified occupational therapist for adults with dementia and their informal caregivers. Study selection, data collection, and methodological quality assessments using the Critical Appraisal Skills Programme criteria tool were performed independently by two reviewers. Data analysis involved a two-stage process. Findings: From 1,229 articles identified through searches, 970 titles and abstracts were screened for eligibility after removal of duplicates. Twenty studies reported in 22 articles were included. Moderate evidence supported interventions provided jointly for adults with dementia and their informal caregivers using a combination of intervention strategies. Included studies demonstrated high risk of bias, particularly in blinding of outcome assessments. Conclusions and Relevance: Combining individualized interventions framed in client-centeredness can enhance occupational performance for adults with dementia, reduce caregiving burden, and improve informal caregivers’ sense of competence. Further research on leisure and home management occupations is warranted. What This Article Adds: The findings provide evidence supporting the effectiveness of home-based occupational therapy for people with dementia and their informal caregivers for consideration by funders of services. 

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Home Visit Based Mindfulness Intervention for Vietnamese American Dementia Family Caregivers: A Pilot Feasibility Study

Background: Healthcare disparities continue to exist among the Vietnamese American (VA) community and many factors (e.g., fear of social stigma) deter family caregivers of persons with dementia (PWD) from seeking assistance. Purpose: To pilot-test a language-specific and culturally appropriate mindfulness intervention to improve dementia VA family caregiver well-being. Methods: Bilingual, trained research assistants administered a mindfulness exercise (i.e., deep breathing) to family caregivers and provided continuous support and care resources through weekly home visits for a month. Weekly surveys measured changes in emotion, feelings of connectedness to the PWD, and mood (i.e., happiness) before and after the intervention. Results: A total of nine VA family caregivers of PWD participated in this pilot study. Positive affect showed an increasing trend (Mpre = 16.0 (SD = 3.48), Mpost = 17.1 (SD = 3.06)) and negative affect showed a decreasing trend (Mpre = 6.44 (SD = 3.31), Mpost = 5.22 (SD = 0.359)). Happiness showed an increasing trend (Mpre = 4.30 (SD = 0.767), Mpost = 4.44 (SD = 0.873)). Conclusions: These findings suggest that a home-based dementia family caregiver intervention with mindfulness exercises may potentially increase positive affect and decrease negative affect in Vietnamese American family caregivers of PWD. Similar interventions may help reduce caregiver burden in dementia family caregivers of other cultures.

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Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

Background: People adopt health promotion behaviors to promote their health as they interact within the environment. Objective: The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. Methods: For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Results: Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. Conclusion: A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

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Gender Differences in Caregiver Burden Among Family Caregivers of Persons With Dementia

Objectives: The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. Methods: We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. Results: The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Conclusions: Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers. 

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The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care.

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Finding a balance in family caregiving for people with dementia: A correlational longitudinal study

Aims: The “Finding a Balance Point” framework was used to explore the caregiving process over time for family caregivers of people with dementia in Taiwan. This study aimed to: (a) identify Taiwanese caregivers’ different balance trajectories; (b) explore predictors of trajectory group membership; and (c) examine associations of different balance trajectories with caregiving outcomes. Design: A correlational longitudinal design was used. Methods: Data were collected from 200 family caregivers’ self‐completed questionnaires and they were followed over 2 years (June 2015–May 2017). Discrete balance trajectories were identified by group‐based trajectory modelling. Predictors of trajectory group membership were identified from potential predictors of caregiving characteristics and caregiving factors using multivariate logistic regression. Associations of trajectory groups with caregiving outcomes (depressive symptoms and health‐related quality of life) were explored using the generalized estimating equation. Results: Balance trajectories best fit a two‐group trajectory model (poor and good). Caregivers with a poor sense of balance between competing needs were more likely to have more depressive symptoms (b = 11.71, 95% CI [9.04, 14.38], p < .001), worse physical health (b = −6.22, 95% CI [−8.71, −3.74], p < .001), and worse mental health (b = −11.1, 95% CI [−13.58, −8.63], p < .001) than caregivers with a good sense of balance. Caregivers experiencing lower role strain (b = −1.45, SE = 0.48, p = .003) or higher predictability (b = 2.83, SE = 0.76, p < .001) were more likely to belong to the good‐balance group. Conclusions: Caregivers with poor balance between competing needs are more likely to have worse caregiving outcomes. Role strain and predictability significantly predicted balance trajectory groups. Family caregivers with lower caregiving task difficulty and/or better knowledge of the care receiver were more likely to be in the good balance trajectory group. Impact: Our findings support the framework, “Finding a Balance Point,” and clarify the family caregiving process for people with dementia. This framework could be used to tailor interventions for home care nurses to improve family caregivers’ caregiving outcomes.

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Features of primary care practice influence emergency care-seeking behaviors by caregivers of persons with dementia: A multiple-perspective qualitative study

Background: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. Methods: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. Findings: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features—including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems—including establishing goals of care, preparing for the future, developing provider–patient/provider–caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia—including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. Conclusions: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.

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Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers

Background: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it. Objective: To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation. Methods: exploratory qualitative design using semi-structured interviews. Ten nursing homes in the Netherlands. Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program. Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program. Results: In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement. Conclusions: To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).

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Family experiences of caregiving to patients with Alzheimer

Purpose: This paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family's caregiver well-being. Design/methodology/approach: The study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews. Findings: Four themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses. Originality/value: The family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer's disease were poor.

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Family Dynamics and the Alzheimer’s Disease Experience

Objectives: Using constructivist grounded theory, this study explored how family groups respond to Alzheimer’s disease in its early stages. Methods: Seven family units (N = 22) participated in a series of 26 longitudinal interviews and 14 other family caregivers took part in three focus groups at a later stage for refinement and verification of the findings. Results: Data analysis revealed four types of family dynamics: close dynamics at the start that were maintained throughout the experience, close dynamics at the start which became conflicting, conflicting dynamics at the start which remained problematic, and conflicting dynamic at the start which became closer over time. Factors such as prior relationships and family history, motivation to care, family organization, communication, and the family vision for future shaped the development of these dynamics. Conclusions: This theory of family dynamics in Alzheimer’s disease has the potential to inform the development of more adequate early interventions for families living with the illness.

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Family caregivers’ liability for damage inflicted by persons with dementia under their care: a study of the 2016 Japanese Supreme Court ruling

By analysing the 2016 Japanese Supreme Court case concerning family caregivers’ liability for damages caused by a person with dementia who was killed by a train while wandering, this article suggests how to address similar cases in the future, considering the rights of persons with dementia to live in the community. The Court absolved the deceased’s wife and son from liability and defined four criteria to find a person liable for damages: (a) the caregiver’s living, mental, and physical conditions; (b) the conditions of the caregiver’s involvement with a person with a mental disability; (c) the nature and incidence of the problematic behaviours of the person with a mental disability; and (d) the circumstances surrounding their supervision and care. This was the Supreme Court’s first presentation of the criteria for establishing liability for a ‘Person Equivalent to a Supervisor’. To guarantee the rights of a person with dementia to live in the community, the burden on family caregivers must be reduced, and the range of caregivers broadened to include non-family providers. The Court sought to reduce the caregivers’ burden, and if these criteria are applied appropriately, the human rights of dementia patients and caregivers will be protected. 

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Family caregivers of patients with Alzheimer's disease during the COVID‐19 journey

As is the whole world, we are also fighting the coronavirus (COVID‐19) pandemic in Turkey, which complicates and affects all aspects of life. The pandemic can negatively psychosocially affect every segment of society. To successfully get through this pandemic, it is important to consider all individuals in society, including ourselves. Patients with Alzheimer's disease are considered vulnerable, more helpless; they do not have the capacity to make the right decisions and they need the care and help of someone else. The needs of relatives who provide care for these patients may have been forgotten during this pandemic.

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Family caregivers' experiences of interaction with people with mild‐to‐moderate dementia in China: A qualitative study

Aim: This study aimed to explore the experiences of family caregivers interacting with people with dementia. Background: A majority of people with mild‐to‐moderate dementia live at home with family caregivers. This interaction creates positive experiences and challenges for these caregivers. Design: Descriptive phenomenological qualitative inquiry guided this study. Methods: This qualitative study involved semi‐structured interviews with the caregivers of people with mild‐to‐moderate dementia (n = 10). Data were collected from June to September 2018, and then data were thematically analysed. Results: Six categories of themes were identified from the interviews: (1) unexpected things often happen; (2) positive coping strategies; (3) sense of accomplishment because people with dementia actively participate in activities; (4) sense of frustration because of the reluctance of people with dementia to participate in activities; (5) hope for the happiness of people with dementia; and (6) want to have their own life. Conclusions: This study reveals that caregivers could positively interact with people with dementia through creating opportunities and arranging meaningful activities. Future research should focus on family management and training on how to help caregivers interact effectively with people with dementia. 

 

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Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

Background: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

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A family care model for older persons with hip-fracture and cognitive impairment: A randomized controlled trial

Background: Dementia and hip fracture are both associated with substantial disability and mortality. However, few studies have explored the effects of intervention programs on post-operative recovery of older persons with hip fracture and cognitive impairment. To examine the effects of a family-centered care model for older persons with hip fracture and cognitive impairment and their family caregivers. Methods: Single-blinded clinical trial. A 3000-bed medical center in Taiwan. Older persons hip fracture and cognitive impairment (N = 152); 76 in the intervention group, and 76 in the usual-care control group. A family-centered care model consisting of geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care. Outcomes were assessed 1-, 3-, 6- and 12-months following hospital discharge for older persons with hip fracture and cognitive impairment. Assessed outcomes were self-care ability (performance of activities of daily living and instrumental activities of daily living), nutritional status, self-rated health, health-related quality of life and self-efficacy, and competence of the family caregivers. Results: Relative to patients who received usual care, those who received the family-centered care intervention had a greater rate of improvement in self-rated health (β = 1.68, p <.05) and nutritional status (β = 0.23, p <.05), especially during the first 6 months following hospital discharge. Relative to family caregivers who received usual care, those who received family-centered care had a higher level of competence (β = 7.97, p <.01), a greater rate of improvement in competence (β = 0.57, p <.01), and a greater rate of improvement in self-efficacy (β = 0.74, p <.05) 3 months following hospital discharge. Conclusions: A family-centered care model enhanced family caregivers' self-efficacy and competence but did not improve the physical recovery of the participants with hip fracture and dementia. We suggest adding an educational component to include geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care and assessing family caregiver outcomes in interventions for older persons with hip fracture and cognitive impairment. Trial registration: Registered with www.clinicaltrials.gov (NCT03894709) 

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Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US

Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.

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Factors predicting quality of life in family carers of people with dementia: The role of psychological inflexibility

Aims: The current study aimed to investigate the impact of carer-related modifiable factors (i.e., knowledge about dementia, psychological inflexibility, self-compassion and hours of support from other family members) on quality of life (QoL) among family carers. Methods: A multiple regression analysis was conducted with QoL as a dependent variable. All factors were entered into the model simultaneously as independent variables. Ninety-one family carers with a mean age of 69.5 years old were assessed. Results: Participants were primarily female family members looking after a person with severe Alzheimer's disease. The model's R2 was 24%. The results demonstrated that psychological inflexibility was the only significant independent variable predicting QoL (β = −0.46, p = 0.00, 95% CI: −0.71 to −0.20), and higher psychological inflexibility was associated with worse QoL. Conclusions: These findings suggest that targeting carer's psychological inflexibility through psychological interventions such as Acceptance and Commitment Therapy may be particularly important in promoting QoL among family carers of people with dementia.  

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Factors influencing decisions to admit family members with dementia to long‐term care facilities

Background: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.

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Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study

Background: In the United States, nearly 80% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. Objective: The purpose of this study is to explore factors associated with dementia caregivers’ intention to adopt mHealth apps for chronic disease self-management. Methods: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. Results: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6%) and minorities (63/117, 53.8%), experienced some to extreme income difficulties (64/117, 54.7%), and were the child or child-in-law (53/117, 45.3%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95% CI 5.6-97; P<.001) and the interaction term for caregivers’ education and burden of chronic disease and treatment (OR 31, 95% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. Conclusions: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers’ perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers’ intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers’ self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management.

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Factors Associated with Health Check-up and Cancer Screening Participation among Family Caregivers of Patients with Dementia: A Cross-Sectional Study

Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels. 

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Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore

Background: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. Methods: Two hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. Results: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. Conclusion: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.

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Exploring resilience in adult daughter and spousal carers of people living with dementia in North West England: an ecological approach

Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources. 

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Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient–Caregiver Dyads—A Mixed-Methods Study

Methods: A parallel mixed-methods study on 20 patient–caregiver dyads in an Asian population was conducted to explore the differential perceptions and barriers to ACP in dementia. We recruited English-speaking patients with mild dementia and their caregivers. A trained ACP facilitator conducted ACP counseling. Patient–caregiver dyads completed pre–post surveys and participated in post-counseling qualitative interviews. We used mixed-methods analysis to corroborate the quantitative and qualitative data. Differential perceptions of ACP were reported among dyads, with caregivers less inclined for further ACP discussions. Post-ACP counseling, caregivers were significantly more likely to acknowledge barriers to ACP discussions than patients (57.9% versus 10.5%, p = 0.005). Results: Thematic analysis of the interview transcripts revealed four themes around barriers to ACP: patient-related factors (transference of decision making, poor cognition and lack of understanding, and dis-inclination to plan for the future), caregiver-related factors (perceived negative impact on the patient, caregiver discomfort, and confidence in congruent decision making), socio-cultural factors (taboos, superstitions, and religious beliefs), and the inappropriate timing of discussions. Conclusions: In a collectivist Asian culture, socio-cultural factors pose important barriers, and a family-centric approach to initiation of ACP may be the first step towards engagement in the ACP process. For ACP in dementia to be effective for patients and caregivers, these discussions should be culturally tailored and address patient, caregiver, socio-cultural, and timing barriers.

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Exploring dementia family carers’ self-initiated strategies in managing behavioural and psychological symptoms in dementia: a qualitative study

Objectives: Carer’s self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers’ BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers. Design: Qualitative study using thematic framework method. Setting: Community setting in Hong Kong. Participants: 16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement. Results: Six overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers’ distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers’ self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Conclusions: Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.

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An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation

Objectives: The aim of this study was to explore the experiences of family carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation (TESA). The paper explores the informal carers (ICs) roles, the factors prompting the move to TESA, alongside their perceptions of their relatives' experience of the move and of life in a technology-enriched environment. Methods: Within a qualitative study 25 semi-structured interviews were conducted with ICs and data were analysed following a thematic approach. Results: Four themes were identified, reflecting the shift in roles and identity of both ICs and persons living with dementia. The move to TESA was linked to a perceived reduction in care-giving pressures, with positive outcomes reported for both the ICs and the people living with dementia. Smart home technologies in the facilities did not appear to impact on the decision-making during transition, however, they were valued as part of the lived experience for the people living with dementia within the TESA facilities. Conclusions: These findings are relevant to policy makers, commissioners and providers of services to highlight the engagement of all stakeholders in the provision of care for people living with dementia and their families early from diagnosis in order to facilitate person-centred practices in community settings.

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Experiences of Daughters Caring for a Parent With Alzheimer's Disease Living at Home

Methods: The current study used purposeful and snowball sampling to interview 12 daughters who were care-givers to their parents with Alzheimer's disease. Data were collected through in-depth, semi-structured interviews and were analyzed using Colaizzi's descriptive phenomenological approach. Caregiving years ranged from 1 to 10 years, with a mean of 5 years. Findings: Six themes were uncovered: (a) Where Are You When I Need You?; (b) Safety First; (c) I Don't Know What to Say or How to Say It; (d) They Are Beautiful People, but They Aren't Trained; (e) Letting Go of Who They Were; and (f) It Affects Every Area of My Life. Conclusions: Findings suggest that caregiver daughters of parents with AD living at home are struggling and indicate a need for better support of caregivers. Implications for nursing practice, research, and education are significant and require a greater focus on the support of informal caregivers of persons with AD. 

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Experiences of Communicating with Older Adults with Alzheimer's Disease: A Phenomenological Study of Family Caregivers

Background: Communication allows people to make sense of the world, for people to connect, establish, maintain and change relationships. The declining communicative abilities of older adults with Alzheimer's disease, however, may affect the quality of life of both caregivers and older adults. This study aimed to explore and better understand the lived experiences of family caregivers in communicating with older adults with this disease. Design: An interpretative phenomenological approach was conducted in the province of Songkhla, Thailand between November 2018 to June 2019. Ten family caregivers were selected by purposeful sampling. Open-ended, semi-structured interviews were conducted. Interviews were audiotaped, transcribed verbatim and analyzed using thematic analysis. Findings: Two main themes were identified that represented areas of communication: engaging in troublesome communication; and inability to relate to each other. Effective communication strategies and techniques to improve communication problems were identified such as showing respect, compliance, distraction and therapeutic lies. After understanding the findings of this study, nurse practitioners and nurses need to understand the importance of assessing and analyzing the communication issues between caregivers and their older relatives. Conclusions: Our findings can be a basis for planning and developing appropriate supports to enhance communication skill of the family caregivers within the context of daily communication with older adults with Alzheimer's disease.

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The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

Background: This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Methods: Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers (N = 19). Participants in this study were the 10 active family caregivers (nF = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Findings: Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers. 

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Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

Background: The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. Methods: A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Results: Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Conclusions: Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.

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Evaluation of AID-COM, a communication-focused program for family carers of people with early-stage Alzheimer's disease: A pilot study (innovative practice)

Background: Families providing care to relatives with Alzheimer's disease are quickly destabilized by changes that disrupt communication. Methods: This pilot mixed-design study aimed to provide a quantitative and qualitative evaluation of a communication-based training program for carers of people with early-stage Alzheimer's disease. Five participants received three training sessions. The use of communication strategies by participants and their effectiveness were evaluated before and after the training, and a focus group was conducted to gather participants' impressions about the impacts of the training on communication with the person they cared for. Conclusions: The AID-COM (AID for COMmunication) program appears to have met expectations.

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Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability. 

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Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

Background: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. Review Question: What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? Methods: A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. Results: Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. Conclusion: Decision‐making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision‐making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision‐specific interventions are unlikely to produce benefit in other decision contexts. Patient Involvement: Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

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Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial

Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. 

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Effects of a Modified Mindfulness-Based Cognitive Therapy for Family Caregivers of People With Dementia: A Randomized Clinical Trial

Background and Objectives: Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods: 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results: At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers' distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers' level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications: The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers' stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving.

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Effectiveness of a telephone intervention based on motivational health coaching for improving the mental health of caregivers of people with dementia: A randomised controlled trial

Objectives: Caring for a family member with dementia is considered one of the activities with the greatest negative impact on a person's mental health. Developing long‐lasting and effective strategies is a challenge for caregivers. This study sought to evaluate the impact of an intervention based on a programme of motivational coaching delivered by telephone in a group of caregivers of patients with dementia compared to a control group. Methods: A randomised controlled trial with a control group and an intervention group. (CONSORT guidelines were used). Telephone calls were made during six weeks, involving a process of coaching and motivational interviews. The following variables were measured in caregivers: self‐efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were conducted at three time points: baseline, post‐intervention and three months’ post‐intervention. Results: In total, 106 caregivers participated (53 subjects in the control group and 53 in the intervention group). Statistically significant differences (ANCOVA) were found between both groups for the self‐efficacy and stress variables, with improved results in the intervention group (p < .01). Furthermore, statistically significant differences were found in the intervention group between the baseline and post‐intervention assessments, with improvements in self‐efficacy, decreased stress and decreased dysfunctional thoughts (p < .05). The results were maintained over time for both groups. Conclusions: An intervention based on telephone calls using a health coaching approach with motivational interviewing appears to be effective for the improvement of self‐efficacy and mental health of caregivers of people with moderate dementia. Furthermore, these effects appear to be maintained over time.

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Effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia: study protocol for a cluster randomised controlled trial (GAIN)

Background: Up to two-thirds of dementia care is provided by family caregivers who often experience high burden, little support and adverse health outcomes. Enabling and supporting family caregivers to provide care at home prevents early institutionalisation of the person with dementia and alleviates the economic burden of dementia in the long term. General practitioners (GPs), as the first point of contact, have a key role in identifying and managing burden and care needs of family caregivers. However, in routine care, this opportunity is often limited by time constraints and even if caregiver needs are recognised, detailed information about regionally available support and advice on healthcare services is often lacking.

Methods: This is a cluster randomised, controlled trial investigating the clinical use and cost-effectiveness of a digitally supported care management programme for caregivers of people with dementia (PwD). Five hundred family caregivers will be randomised at GP offices, specialist practices and memory clinics, with about n=250 participants per arm. Participants are eligible if they are the primary family caregiver of a PwD, are at least 18 years of age and provide informed consent. Participants in the intervention group will receive an individualised care management plan, which will be carried out by qualified study nurses in collaboration with the treating GP. All participants will receive a baseline assessment and a 6-months follow-up assessment. Participants in the wait-list control group will receive usual care. Starting at the 6 months’ follow-up, the former controls will also receive an individualised management plan. Primary outcomes are the number of unmet needs (incl. the Camberwell Assessment of Need for the Elderly, CANE) and health-related quality of life (EQ-5D-5L) at 6 months. Secondary outcomes include caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non-medical services (Questionnaire for the Use of Medical and Non-Medical Services, FIMA) and resource utilisation (Resource Utilisation in Dementia, RUD). The primary analysis will be based on intention-to-treat. Between- and within-group analyses and a cost-effectiveness analysis will be conducted to estimate the effect of the tablet PC-based care management programme. This trial is funded by the German Federal Joint Committee (G-BA) Innovation Fund. Discussion: The findings of this trial will be useful in informing and improving current healthcare system structures and processes to support family dementia caregivers within routine care practices.

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The effect of a multimodal comprehensive care methodology for family caregivers of people with dementia

Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer’s Disease (Behave-AD) (secondary outcome). Results: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). Conclusions: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245. 

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The DWQ-EMR Embedded Tool to Enhance the Family Physician-Caregiver Connection: A Pilot Case Study

Background: The number of family caregivers to individuals with dementia is increasing. Family physicians are often the first point of access to the health care system for individuals with dementia and their caregivers. Caregivers are at an increased risk of developing negative physical, cognitive and affective health problems themselves. Caregivers also describe having unmet needs to help them sustain care in the community. Family physicians are in a unique position to help support caregivers and individuals with dementia, but often struggle with keeping up with best practice dementia service knowledge. Methods: The Dementia Wellness Questionnaire was designed to serve as a starting point for discussions between caregivers and family physicians by empowering caregivers to communicate their needs and concerns and to enhance family physicians’ access to specific dementia support information. The DWQ aims to alert physicians of caregiver and patient needs. This pilot study aimed to explore the experiences of physicians and caregivers of people using the Questionnaire in two family medicine clinics in Ontario, Canada. Interviews with physicians and caregivers collected data on their experiences using the DWQ following a 10-month data gathering period. Data was analyzed using content analysis. Results: Results indicated that family physicians may have an improved efficacy in managing dementia by having dementia care case specific guidelines integrated within electronic medical records. By having time-efficient access to tailored supports, family physicians can better address the needs of the caregiver–patient dyad and help support family caregivers in their caregiving role. Caregivers expressed that the Questionnaire helped them remember concerns to bring up with physicians, in order to receive help in a more efficient manner.

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Domains of quality of life in Alzheimer’s disease vary according to caregiver kinship

Introduction: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer’s disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers’ quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. Methods: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6). The PwAD and their caregivers completed questionnaires about their QoL, awareness of disease, cognition, severity of dementia, depression, and burden of caring. Results: The comparison between caregiver types showed that spouse-caregivers were older, with higher levels of burden and lower scores for cognition. Caregivers’ total QoL scores were not significantly different according to type of kinship. However, there were significant differences in the domains physical health (p = 0.04, Cohen’s d [d] = -0.42), marriage (p = 0.01, d = 1.31), and friends (p = 0.04, d = -0.41), and life as a whole showed a trend to difference (p = 0.08, d = -0.33). When QoL domains were analyzed within dyads, there were significant differences between members of spouse dyads in the domains energy (p = 0.01, d = -0.49), ability to do things for fun (p = 0.01, d = -0.48), and memory (p = 0.000, d = -1.07). For non-spouse dyads, there were significant differences between caregivers and PwAD for the QoL domains memory (p = 0.004, d = -0.63), marriage (p = 0.001, d = -0.72), friends (p = 0.001, d = -0.65), and ability to do chores (p = 0.000, d = -0.76). Conclusions: Differences were only detected between spouse/non-spouse-caregivers when QoL was analyzed by domains. We speculate that spouse and non-spouse caregivers have distinct assessments and perceptions of what is important to their QoL.

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Does the advice requested by carers of people who live with dementia reflect the level of commissioned post-diagnostic support? A retrospective evaluation of calls to the Me2U dementia day centre 24-hour advice line

Aims: The aim was to examine the reasons for advice requests by carers of people who live with dementia (PLWD) that attend the Me2u dementia day centre in order to identify key explanatory themes. We hypothesised that requests were related mainly to coordinating care and clinical issues due to limited post-diagnostic support (PDS) in our area. Background: The Me2u dementia day centre (Merseyside) cares for PLWD and also supports carers. As part of the service, a 24-hour advice line is included for PLWD and their carers who attend the centre. Locally, there is limited PDS and most carers navigate the health and social care system alone mirroring the findings by the National Collaborating Centre for Mental Health (NCCMH). Method: We undertook a retrospective evaluation of 244 advice calls, from 64 carers, between 01/06/2019 and 31/12/2019. We analysed time of call, type of advice, type of dementia, age and whether the advice was for the PLWD or for the carer. Results: Of the 244 calls, the most common time to call was between 09.00 - 14.00 (n = 168; (68.8%) peak 09.00 - 10.00 (n = 38). Average age of the person about whom the advice was sought was 79.08 years. 91.4% of the advice calls related to PLWD (most common dementia Alzheimer's) and 8.6% to the carer only. The mean number of calls per person was 3.8 (range 1–24).Advice data were grouped into 9 broad themes namely, related to symptoms/behaviour (32.79%, n = 80), request for Me2u to coordinate care (20.08%, n = 49), general advice (14.75%, n = 36), personal care (9.42%, n = 23), carer only advice (8.60%, n = 21), social issues (6.14%, n = 15), social care (4.50%, n = 11), safeguarding (2.46%, n = 6), non-health and social care issue (1.23%, n = 3).ConclusionReasons for limited/poor PDS given by the NCCMH are; absence of named coordinators of care, over-reliance on families and carers to manage and facilitate appointments, poor recognition and management of comorbidities. This data show that 52.87% of calls were for clinical advice and coordination of care reflecting NCCMH findings. The interventions post-call reduced the impact on providers of urgent care. Conclusions: These findings provide support for the provision of a [24-hour] advice line as a routine part of post-diagnostic support services, especially in areas that have limited or poor PDS. Commissioners of PDS services in areas that have limited or poor PDS should make this a priority to prevent unplanned admissions to hospital and carer breakdown.

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Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

Background: Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context: The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods: Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results: Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results: Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

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Differences in Burden Severity in Adult-Child Family Caregivers and Spousal Caregivers of Persons with Dementia

Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.

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Differences among Caregivers on Coping Resources and Mental Health

Background: Given the growing number of family members who provide care to adults with a disability or illness, this study examined differences in coping resources and mental health among family caregivers of persons with various health conditions. Methods: Within the context of Ensel and Lin’s stress paradigm, 234 family caregivers participated in an online study by completing validated measures of resourcefulness, spiritual practices, caregiver burden, anxiety, and depression. Caregivers were categorized into nine groups according to their care recipient’s condition. Results: The groups differed significantly on burden and resourcefulness. Greatest burden and lowest resourcefulness were found in caregivers of persons with traumatic brain injury, stroke, and dementia. Caregivers across all groups were found to be at a similarly high risk for anxiety and depression. Conclusions: These results provide insights for tailoring interventions for caregivers, particularly those whose care recipients have traumatic brain injury, stroke, or dementia, who may benefit from resourcefulness training.

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Development and Validation of the Family Quality of Life in Dementia Scale

Background and Objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. Research Design and Methods: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). Results: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. Discussion and Implications: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.

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Developing and testing of an integrative theoretical model to predict positive aspects of caregiving among family caregivers of persons with dementia: A study protocol

Aims: The aim is to develop and test an integrative model based on the stress and coping paradigm and the existential paradigm, to explain positive aspects of caregiving among family caregivers of persons with dementia. Design: A mixed method research, comprises a longitudinal exploratory study and a descriptive qualitative study. Methods: A total of 370 family caregivers will be recruited from community elderly centres. Questionnaires on positive aspects of caregiving and its predictors (including active dementia management strategies, meaning‐focused coping, and self‐efficacy) and contextual factors (including social support, religiosity, continuous good dyadic relationship quality, and intrinsic motivation towards caregiving) will be administered. Positive aspects of caregiving will be reassessed six months later. Path analysis will be used to test the hypothesized model. A subsample of 30 family caregivers will be interviewed individually to explore how positive aspects of caregiving develop from the caregiving experience. Inductive thematic analysis will be used to for the qualitative data analysis. The funding was approved in January 2018. Discussion: Positive aspects of caregiving represents the extent to which the caregiving experience is seen as enriching an individual's life space and resulted in health protective effects. With the increasing evidence to indicate its associating factors, it is imperative to identify the theoretical model to comprehensively elucidate the process for its development. Impact: Theoretically, this study will advance the knowledge of dementia caregiving by generating a comprehensive theory‐driven predictive model to explain how positive aspects of caregiving is developed among the family caregivers. In terms of nursing practice, the findings can inform the development of intervention to improve positive aspects of caregiving and thereby acts as a catalyst to promote the paradigm shift from 'reducing limitations' to 'optimizing strengths' in family caregivers support services.

 

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The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care. (Edited publisher abstract)

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Depressive and Anxious Comorbidity and Treatment Response in Family Caregivers of People with Dementia

Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100% recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36% of caregivers in CBT and 30.9 % in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45% in the control group. Similar results were obtained regarding those caregivers who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity. 

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Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

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Dementia Caregivers' Experiences and Reactions to Remote Activity Monitoring System Alerts

Background: Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. Methods: We used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes. Quantitative analyses showed a modest positive association between the number of alerts during the first month and system review score. In addition, qualitative results illustrated the importance of alert context, including utility, accuracy, and type of alert delivery. Conclusions: These findings highlight the relevance of early alerts to engagement with and perceived benefit from the RAM system. 

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Dementia Caregivers and Cognitive Behavioral Therapy: A Systematic Review

Background: Caregivers are generally family members of the person and may experience psychological difficulties and may need psychological help. [...]the aim of this study is to investigate the effectiveness of Cognitive Behavioral Therapy (CBT) based interventions applied to family caregivers of people with dementia. [...]in this study, it is aimed to make a systematic review of the effects of CBT-based interventions on family caregivers of people with dementia. Methods: The current study carried out a systematic review of literature in accodance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guideliness which used in reporting systematic reviews (Moher et al. 2009). Since a national study in this context could not be reached, searches were made in English and were conducted during March 2020 using the following search terms: "cognitive behavioral therapy" and "caregivers of people with dementia", "cognitive behavioral therapy" and "dementia caregivers" "cognitive behavioral therapy" and "caregivers of Alzheimer patients", and "cognitive behavioral therapy" and "Alzheimer's caregiver". Findings: In Table 2, interface mode (face-to-face, telephone and Internet), treatment paradigm (individual and group), schedule of sessions (number, frequency and duration), CBT techniques and interventions applied, evaluation time points, measurement methods and benefits of CBT is given.

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Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Objectives: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. Methods: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35–80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. Results: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. Discussion: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

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Dementia and revivalist Islam: New perspectives to understanding dementia and tackling stigma

Background: The notion of stigma and its influence on the understanding of dementia has commonly been recognized as a great challenge to seeking healthcare services for South Asians in England. Aim: The aim of this commentary is to examine how Muslims view, understand and tackle dementia stigma in the context of revivalist Islam, especially among Bangladeshi Muslims within their British communities. This article reflects on the interrelationship between dementia and revivalist Islam among Bangladeshi family caregivers and addresses the question of how revivalist Islam is a significant source of understanding dementia and tackling stigma. Bangladeshi caregivers show a practical attitude toward dementia which is generally acknowledged as a medical symptom, and for which family caregivers voluntarily seek healthcare support. This piece highlights underlying principles of caregivers religious beliefs in the acceptance of dementia as a disease, and in help‐seeking which is influenced by Qur'anic verses and Prophetic traditions. Bangladeshi caregivers' religious beliefs intertwine with their knowledge, perception, and attitudes toward caregiving for their relatives with dementia. Conclusions: Revivalist Islam offers family caregivers an opportunity to explore their inner wisdom through the challenging journey of caregiving for their family members with dementia.

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A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections

Background: Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods: Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results: The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion: This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops. 

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Daughters' experiences of shared caregiving to a parent with dementia

Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings.

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The Cultural Diversity of Dementia Patients and Caregivers in Primary Care Case Management: a Pilot Mixed Methods Study

Background: The Canadian reality of dementia care may be complicated by the cultural diversity of patients and their informal caregivers. Objectives: To what extent do needs differ between Canadian- and foreign-born patients and caregivers? What are their experiences with the illness in primary care case management? Methods: Mixed methods, sequential explanatory design (a cross-sectional study, followed by a qualitative descriptive study), involving 15 pairs of patients and caregivers. Results: Foreign-born patients had more needs compared to their Canadian-born counterparts. Foreign-born caregivers reported more stress, more problems, and increased need for services. However, the reported experiences of Canadian- vs. foreign-born individuals were similar. Conclusion: The results remain hypothesis-generating. The present pilot illustrated the suitability of mixed methods to this area of study, which deserves further investigation to better serve all members of a population already vulnerable by age and disease.

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COVID-19 and Long-Term Care: the Essential Role of Family Caregivers

Background: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. Method: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. Results: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. Conclusion: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.

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Cost‐effectiveness of a telehealth intervention for in‐home dementia care support: Findings from the FamTechCare clinical trial

Background: Determining the cost‐effectiveness of technological interventions is a crucial aspect in assuring these interventions can be adopted. The FamTechCare intervention is an innovative telehealth support that links family caregivers of persons living with dementia to tailored feedback from dementia care experts based on caregiver‐initiated video recordings of challenging care situations. The FamTechCare intervention has demonstrated significant reductions in caregiver depression and increases in caregiver competence when compared to standard telephone support. The purpose of this article is to report on the cost‐effectiveness of the FamTechCare telehealth intervention. Methods: Process‐based costing and a cost‐effectiveness analysis using the incremental cost‐effectiveness ratio (ICER) was completed with 68 caregiver and person living dementia with dyads. Results: The cost of the 12‐week FamTechCare telehealth intervention was found to be greater ($48.43 per dyad per week) due to the telehealth equipment, recording application, and expert panel time compared with the telephone support intervention ($6.96 per dyad per week). The ICER was $18.51 for caregiver depression and $36.31 for caregiver competence indicating that it cost no more than $36.38 per dyad per week over 12 weeks to achieve significant improvement in depression and competence in the FamTechCare caregivers compared to the telephone support caregivers. Conclusion: The FamTechCare intervention appears to be cost‐effective when compared to the telephone support intervention and remains near the willingness‐to‐pay threshold for caregivers providing in‐home dementia care support.

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Correlates of Formal Support Service Use among Dementia Caregivers

Background: Informal caregivers for persons with dementia frequently report needing assistance, yet formal support service use has been low. Methods: To better understand factors associated with service use, correlates of self-reported service use (e.g., support groups, family mediation, family leave, classes/trainings, and respite care) among dementia caregivers were assessed. The National Poll on Healthy Aging conducted a nationally representative web-based survey of adults aged 50–80 (N = 2,131) using Ispos' KnowledgePanel®. Results: 148 reported caregiving for an adult with memory loss [61.5% female; 25% nonwhite, 54.1% aged 50–64]. Multivariable logistic regression analyzes assessed caregiver and care recipient characteristics associated with service use within the prior year. Nearly 25% of caregivers used at least one service. Caregiver characteristics associated with greater likelihood of service use included not working [7.5 OR; 2.73, 20.62 CI]; income <$30,000/year [5.9 OR; 1.27, 27.17 CI]; and residing in Western US [7.5 OR; 2.73, 20.62 CI]. Ability of care recipient to be left alone safely for only three hours or less [5.1 OR; 1.66, 15.46 CI] was associated with greater likelihood of use. Support service use remains low. Conclusions: Findings suggest need to consider caregivers' employment status, income, and geographical location in service design and implementation.

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Coping strategies mediate the association between family functioning and posttraumatic growth in family caregivers of people with dementia

Objectives: This study aimed to examine the mediating effect of coping strategies on the relationship between family functioning and posttraumatic growth in family caregivers of people with dementia (PwD). Methods: A total of 124 family caregivers of PwD from a memory clinic were investigated from July to October 2017. Family functioning, coping strategies, and posttraumatic growth of family caregivers of PwD were measured. Data were processed using descriptive statistics, correlation analysis, regression analysis, and structural equation modelling. Posttraumatic growth was observed in family caregivers of PwD. Results: The caregiver's gender, relationship with the patient, and difficulty balancing financial income and expenditures in the past month, as well as disease severity of PwD, are significant predictors of posttraumatic growth. There were significantly positive correlations among posttraumatic growth, family functioning and positive coping strategies (P<0.01). Positive coping strategies exert a complete mediating effect between family functioning and posttraumatic growth (β = 0.49, P < 0.05). Conclusions: A model of the posttraumatic growth of family caregivers of PwD can be established, and the relevant mechanisms can be explored. Healthcare providers should pay attention to the family functioning of caregivers and take effective measures to provide them with positive coping strategies to promote their posttraumatic growth.

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Coping Patterns Among Primary Informal Dementia Caregivers in Singapore and Its Impact on Caregivers-Implications of a Latent Class Analysis

Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.

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Contributors and Moderators of Quality of Life in Caregivers of Alzheimer´s Disease Patients

Aim and objective: This study aimed to identify the variables that contributed to Quality of Life (QoL) of Alzheimer's Disease (AD) caregivers, taking into consideration the caregiving context, stressors, role strains, and resources. Methods: The sample included 102 caregivers of AD patients who answered the following instruments: Depression, Anxiety and Stress Scale-21; Satisfaction with Social Support Scale; Revised Memory and Behavioral Problems Checklist; Family Communication and Satisfaction Scales; Spiritual and Religious Attitudes in Dealing with Illness; and Quality of Life in Alzheimer's Disease – Caregiver Version. Results: Caregivers who were employed, chose the caregiving role, and received help in caring showed better QoL. Also, being younger, less caregiving daily hours, caring for patients with less memory and behavior problems, lower distress, and family satisfaction predicted better QoL. Finally, spirituality was a moderator between family communication and QoL but not between family satisfaction and QoL. Conclusion: Caregiving-context variables (age, professional status, choosing to care, receiving help in the caregiving role and duration of daily care); role strains (family dissatisfaction); stressors (caregivers' distress and patients' memory and behavioral problems); and resources (spirituality) had an impact on caregivers' QoL emphasizing the adequacy of the Stress Process Model. Intervention should also focus on spirituality given its moderating role.

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Contextual Therapy for Couples who are Primary Caregivers for a Parent(s) with Alzheimer's Disease

Background: The number of individuals experiencing Alzheimer's disease is increasing as the population ages. The majority of individuals experiencing Alzheimer's disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. Methods: This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. Conclusions: In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer's disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.

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A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach. 

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The comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in the community of South Korea

Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education. 

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Components of Empowerment Among Family Caregivers of Community-Dwelling People With Dementia in Japan: A Qualitative Research Study

Background: Family caregivers of people with dementia (PWDs) experience significant physical, psychological, and social burdens. Empowerment, which refers to the process of gaining power in society through behavioral change, is important to coping successfully with care-related burdens. The high burden of care faced by family caregivers in Japan often makes accepting social support difficult for caregivers of PWDs, resulting in feelings of isolation. Clarifying what components constitute empowering experiences for family caregivers of PWDs is necessary to gain a better understanding of their empowerment experiences and to develop relevant support schemes. Purpose: This study was developed to describe the components of empowerment experienced by family caregivers of community-dwelling PWDs in Japan. Methods: This qualitative descriptive study used semistructured in-depth interviews to explore components of empowerment experienced by family caregivers of adults/older adults with dementia. Purposive sampling was used to recruit 20 family caregivers (age range: 50–87 years) from four self-help groups. A qualitative content analysis method was used to analyze the data. The components derived from the interviews were reviewed by three nursing researchers not directly involved in this study who are specialists in qualitative research and geriatric nursing. Results: Four categories and 12 subcategories were derived to illuminate the components of empowerment among family caregivers of PWDs. Specifically, these categories were as follows: (a) proactive aspects of dementia care that were acquired through the caregiving experience, (b) creating a relationship that respects PWDs, (c) Building relationships based on mutual understanding of one's surroundings, and (d) understanding the social aspects of dementia care. Conclusions/Implications for Practice: The findings of this study provide additional understanding of the components of the empowerment experiences of family caregivers of PWDs in Japan and in other East Asian countries experiencing increasing dementia diagnoses and population aging. In addition, the structural components of empowerment offer a useful perspective for health professionals on assessment and intervention that is framed on the cultural characteristics of East Asia. Ultimately, the results suggest that healthcare professionals should develop intervention programs that are tailored to the needs of caregivers at different levels of empowerment.

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A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.

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Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia‐Specific Advance Care Planning

Background/Objectives: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia‐specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia‐specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting: Memory disorder clinics. Participants: Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results: No participants had engaged in any written form of dementia‐specific planning. Barriers to dementia‐specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions: Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia‐specific advance directive documents.

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Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

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Chatbots to Support People With Dementia and Their Caregivers: Systematic Review of Functions and Quality

Background: Over the past decade, there has been an increase in the use of information technologies to educate and support people with dementia and their family caregivers. At the same time, chatbot technologies have become increasingly popular for use by the public and have been identified as having benefits for health care delivery. However, little is known about how chatbot technologies may benefit people with dementia and their caregivers. Objective: This study aims to identify the types of current commercially available chatbots that are designed for use by people with dementia and their caregivers and to assess their quality in terms of features and content. Methods: Chatbots were identified through a systematic search on Google Play Store, Apple App Store, Alexa Skills, and the internet. An evidence-based assessment tool was used to evaluate the features and content of the identified apps. The assessment was conducted through interrater agreement among 4 separate reviewers. Results: Of the 505 initial chatbots identified, 6 were included in the review. The chatbots assessed varied significantly in terms of content and scope. Although the chatbots were generally found to be easy to use, some limitations were noted regarding their performance and programmed content for dialog. Conclusions: Although chatbot technologies are well established and commonly used by the public, their development for people with dementia and their caregivers is in its infancy. Given the successful use of chatbots in other health care settings and for other applications, there are opportunities to integrate this technology into dementia care. However, more evidence-based chatbots that have undergone end user evaluation are needed to evaluate their potential to adequately educate and support these populations.

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Characterizing Dementia Caregivers’ Information Exchange on Social Media: Exploring an Expert-Machine Co-development Process

Background: Social media platforms have introduced new opportunities for supporting family caregivers of persons with Alzheimer’s disease and related dementias (ADRD). Existing methods for exploring online information seeking and sharing (i.e., information exchange) involve examining online posts via manual analysis by human experts or fully automated data-driven exploration through text classification. Both methods have limitations. Design: In this paper, we propose an innovative expert–machine co-development (EMC) process that enables rich interactions and co-learning between human experts and automatic algorithms. Results: By applying the EMC in analyzing ADRD caregivers’ online behaviors, we illustrate steps required by the EMC, and demonstrate its effectiveness in enhancing human experts’ representations of ADRD caregivers’ online information exchange and developing more accurate automatic classification models for ADRD caregivers’ information exchange.

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Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and methods: Thirty-five caregivers of RwD attending formal healthcare services before the lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.

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Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

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Carers' experiences of timely access to and use of dementia care services in eight European countries

Background: Timely access to care services is crucial to support people with dementia and their family carers to live well. Methods: Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Results: Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. Conclusions: To achieve timely support, simplified pathways to use of formal care services are needed.

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Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

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Caregivers' Experience at an Integrated Memory Care Clinic

Background: The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. Methods: We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Results: Caregivers described the Clinic as “the only place you should go to for dementia [care].” Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that “we're all out here swimming on our own.” They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Conclusions: Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. 

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Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform

Background: Web-based educational interventions are emerging as a potential solution to improve caregiver dementia knowledge and overall well-being. Objective: To assess the feasibility of delivering a web-based intervention for dementia caregivers by examining: 1) engagement with the online platform, 2) skill implementation, and 3) changes on outcome metrics over the 30-day study period. Methods: Enrolled participants were onboarded by a trained research coordinator and provided 24/7 access to the platform over 30 days. At study onset and completion, caregivers completed assessments of care recipient dementia severity and neuropsychiatric symptoms along with instruments which measured dementia knowledge, caregiver burden, and carer experience. Results: Of 84 referrals, 60 caregivers met study inclusion criteria and 55 completed pre and post study measures. Caregivers completed an average of 8 hours of learning over the 30-day web-based intervention, with 84.4%of participants reporting using at least one skill they learned from the online platform. Eighty-nine percent of participants reported high satisfaction with the web-based educational intervention. There were small effect sizes for decreases in NPIQ neuropsychiatric symptom severity and caregiver distress scores from pre- to post-intervention. Small effect sizes were observed for changes in caregiver burden from pre- to post-intervention among caregivers who perceived their care recipient as having high global deterioration. Conclusion: Findings show online educational programs are feasible for informal family caregivers of dementia and have perceived value. Future studies should address caregiver response to online education in less severe versus more severe care recipients, and explore the value of caregiver online platforms in diverse caregiver samples. 

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Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults

Background: Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. Method: In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Results: Characteristics associated with high level of care include Hispanic or “other” race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. Conclusions: These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. 

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Caregiver Burden with Alzheimer’s and Dementia Patients: A Systematic Literature Review

Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed. 

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Adapting a guided low-intensity behavioural activation intervention for people with dementia and depression in the Swedish healthcare context (INVOLVERA): a study protocol using codesign and participatory action research

Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context. Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings. Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.

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Business Models of eHealth Interventions to Support Informal Caregivers of People With Dementia in the Netherlands: Analysis of Case Studies

Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice.

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Bibliotherapy for improving caregiving appraisal of informal caregivers of people with dementia: A pilot randomized controlled trial

Background: Caregiving appraisal is a key driver to moderating caregiving outcomes. The caregiving appraisal of informal caregivers of people with dementia requires increased attention. This study aimed to explore the feasibility and acceptability of an evidence‐based bibliotherapy protocol, and test the efficacy on improving caregiving appraisal. Design: A two‐arm pilot randomized controlled trial was adopted. Sixty informal caregivers were randomized to either the intervention group, receiving eight weekly professional‐guided bibliotherapy sessions in addition to usual care; or the usual care group. The professional‐guided bibliotherapy sessions were weekly sessions in which caregivers self‐read the designated chapter and then received telephone coaching. Caregiving appraisal, coping, psychological well‐being, positive aspects of caregiving, knowledge of dementia, and attitude toward dementia were assessed both at baseline and immediately after the intervention. Assessors were blinded to group allocation. Individual interviews among 10 participants from the intervention group were conducted to explorecaregivers' acceptance of the intervention. Descriptive statistics, χ2 test, Mann–Whitney U test, independent t test, generalized estimating equation, and content analysis were used for data analysis. This study pioneered the use of bibliotherapy among informal caregivers of people with dementia. Results: The participant recruitment rate was 69.8%. The attrition rate of the intervention group was 20%. Bibliotherapy had a significant time‐by‐group interaction effect on caregiving appraisal (p < 0.001), coping (p = 0.003), positive aspects of caregiving (p = 0.001), knowledge of dementia (p = 0.017), and attitude toward dementia (p < 0.001). The effect on psychological well‐being, however, was only significant on the personal growth subscale (p = 0.025). The acceptability was also confirmed. No adverse event was documented.

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Being the Family Caregiver of a Patient With Dementia During the Coronavirus Disease 2019 Lockdown

Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.

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Being 'alone' striving for belonging and adaption in a new reality – The experiences of spouse carers of persons with dementia

Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country ; (2) Longing for a place for me and us ; (3) Being a carer first and a person second ; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.

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Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis

Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.

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Becoming a Family Caregiver to a Person With Dementia: A Literature Review on the Needs of Family Caregivers

Introduction: The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results: Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed. 

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Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community

Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.

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"At the End We Feel Forgotten": Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.

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Association between Living with Patients with Dementia and Family Caregivers’ Depressive Symptoms—Living with Dementia Patients and Family Caregivers’ Depressive Symptoms

Background: Depression among family caregivers is becoming an increasingly important issue due to a growing elderly population. This study aimed to examine the association of living with a patient with dementia and family caregivers’ depressive symptoms, among Korean adults. Methods: This study used the data of 371,287 participants after excluding those who indicated having dementia themselves from the Korea Community Health Survey of 2018–2019. Depressive symptoms were measured using the Patient Health Questionnaire-9. Data were analyzed using multiple logistic regression. Results: The rates of spouse caregivers having depressive symptoms were 9.4% and 10.8% among men and women, respectively. The odds ratio for risk of depressive symptoms among male and female spouse caregivers in comparison to non-caregivers was 2.65 and 2.28, respectively. In the subgroup analysis, the highest income group was associated with risk of depressive symptoms, with an odds ratio of 4.28 for men, and 3.02 for women. Conclusion: Having a patient with dementia in the family was significantly associated with family caregivers’ depressive symptoms. In particular, when the patient with dementia was a spouse, both women and men were likely to have depressive symptoms. To reduce the burden of caregivers, we need management policies and interventions for family caregivers.

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Assessment of the Psychological Burden among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview

Background: In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden. 

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Assessment of the burden among family caregivers of patients with Alzheimer’s disease

Introduction: The objective of this study was to examine the caregiving burden and identify the predictors of burden among family caregivers of patients with Alzheimer’s disease. Materials and Method: The sample consisted of 154 family caregivers of community-dwelling Alzheimer patients. Zarit Burden Inventory was used to measure caregiver burden. Depending on the total score, the level of burden is classified as absent to little burden (0 to ≤20), mild to moderate burden (21 to 40), moderate to severe burden (41 to 60), and very severe burden (≥61). The cutoff point for the clinical depression was taken as 24. Results: The caregivers were mainly women (78.6%), the patient’s daughters (56.5%), living with the patient (79.1%), and they were not receiving any support from other family members for patient care (54.5%). The average time spent on caregiving tasks was 4.8 hours a day. The mean Zarit Burden Inventory score was 22.4. The burden scores of 39.6% of the caregivers were significant for clinical depression. The most pronounced predictors of higher burden were the absence of someone supporting the care, social isolation, the length of time spent daily for caregiving, and the patient’s age, comorbidities, and functional impairment in daily activities. Receiving psychological counselling was a protective factor against the development of burden. Conclusion: The results suggest that burden is high among the caregivers of patients with Alzheimer’s disease. Strategies should be developed to support family members in countries such as Turkey, where the care is undertaken by informal caregivers. 

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Antecedents and Outcomes of Enrichment Among Working Family Caregivers of People With Dementia: A Longitudinal Analysis

Objectives: Despite evidence of negative aspects of the work–caregiving interface (e.g. work–family conflict) among family caregivers of people with dementia (PWD), little is known about the positive aspects (e.g. enrichment). We examined antecedents and outcomes of family-to-work enrichment (FWE) and work-to-family enrichment (WFE) among working family caregivers of PWD. In terms of antecedents, we investigated whether factors that alleviated work–family conflict increased enrichment. Method: We conducted a 3-wave 6-month-interval longitudinal online survey of Japanese working family caregivers of PWD (N = 747). We examined the mediational effects of WFE and FWE on associations between participants' work resources (job control, supervisor support, co-worker support, and organizational support) and caregiving support and their well-being (psychological distress and quality of life). We also examined the moderating effect of caregiving self-efficacy on the relationships between caregiving support/caregiving demands and FWE. Results: Our longitudinal analysis confirmed supervisor support had a positive effect on WFE. FWE had no significant longitudinal mediating effect on the association between caregiving support and well-being, and self-efficacy had no longitudinal moderating effect on FWE. Discussion: Supervisor support is important for WFE, but greater enrichment does not necessarily improve family caregiver well-being. Caregiving experience (i.e. caregiving demands and caregiving support) has little effect on the work–caregiving interface. Policy makers should focus on supporting companies to create family-friendly work environments. More research is needed on factors that increase FWE and moderate the relationship between enrichment and working family caregivers' well-being.

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Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief

Background: In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. Methods: A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. Results: The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. Conclusion: These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.

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Advance Care Planning for African American Caregivers of Relatives With Dementias: Cluster Randomized Controlled Trial

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.

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Acceptability and feasibility of a Japanese version of STrAtegies for RelaTives (START-J): A manualized coping strategy program for family caregivers of relatives living with dementia

Background: The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. Method: We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before–after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. Results: The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. Conclusion: The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.

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Accentuate the Positive: The Association Between Informal and Formal Supports and Caregiving Gains

Background: To promote resilience among caregivers for persons living with dementia (PLWDs), we examine how formal and informal supports are linked to caregiving gains, and whether gender moderates the association between supports and gains. Method: Using the National Health and Aging Trends Study and associated National Study of Caregiving, sources of informal (emotional support, practical support, and help with the PLWD) and formal support (respite care, training program, support group) are considered as predictors of caregiving gains, with gender as a moderator of these associations. The sample included 707 caregivers for 502 PLWDs. Results: Greater caregiving gains were significantly associated with emotional support from friends/family (β = 0.14, SE = 0.09, p =.03). Furthermore, attending a caregiver training program was only associated with increased caregiving gains among men (β = 0.11, SE = 0.08, p =.02). Conclusion: Emotional support from family/friends appears particularly consequential for caregiving gains, and male caregivers may benefit most from programs that emphasize skill building.

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The impact of the Covid 19 Pandemic on people with dementia and their carers (Findings from studies and key messages)

The COVID-19 pandemic and subsequent local, regional, and national lockdowns have led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic. People with dementia rely upon timely and responsive services to live well. The abrupt closure and reduction of many health and community support services arising from the pandemic is of concern. Our two studies explored the impact of COVID-19 on the life quality of people with dementia and their carers. The purpose of this document is to share these findings and provide key messages for services and commissioners. The key messages have been developed in conjunction with people with dementia, their carers and researchers. The Time for Dementia (TfD) study followed a group of 245 family carers during COVID lockdown who provided information on their quality of life and other factors affecting wellbeing before and during the pandemic. In-depth interviews about the impact of the pandemic on their quality of life were also undertaken with 16 carers. The DETERMIND-C19 study compared information collected from 93 people newly diagnosed with dementia and 113 carers before the pandemic to that gathered during the pandemic. Changes in people’s mental, physical and social well-being were explored as well as their use of services over this time period. In-depth interviews with 21 people with dementia and 42 carers were undertaken in order to better understand experiences and quality of life during the pandemic.

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A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries

Purpose: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia.; Methods: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries.; Results: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect.; Conclusion: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

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Quality of Life and Well-being of Carers of People With Dementia: Are There Differences Between Working and Nonworking Carers? Results From the IDEAL Program

The aim of this study was to identify the differences in quality of life (QoL) and well-being between working and nonworking dementia carers and the relative contribution of psychological characteristics, caregiving experience, and social support. Multiple regressions modeled the contribution of working status, caregiver experiences, and psychological and social resources to carer QoL (EQ-5D) and well-being (WHO-5). After controlling for age, gender, carer–dyad relationship, and severity of dementia, working status contributed significant variance to EQ-5D (2%) but not to WHO-5 scores. Independent of working status, higher self-esteem and reduced stress contributed to variance in both models. Self-efficacy, social support, and positive perceptions of caregiving additionally contributed to higher WHO-5 scores. Working status associated with higher EQ-5D QoL; this may reflect the sustained sense of independence associated with supported work opportunities for carers. Outside of working status, the findings support the importance of psychological and social factors as targets to improved mental health for dementia carers.

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Effective interventions for depressive symptoms among caregivers of people with dementia: A systematic review and meta-analysis

Background Caring for a family member with dementia puts caregivers at risk for depressive symptoms. Yet, interventions with promising effects on caregiver depressive symptoms are not well documented. Aims This review aimed to examine the quality and effectiveness of interventions to reduce depressive symptoms reported by caregivers of people with dementia. Design A systematic review and meta-analysis of nonpharmacological intervention trials was conducted. Methods The electronic databases searched included MEDLINE, CINAHL, and PsycINFO to find randomized controlled trials published between 2007 and 2017. A total of 31 randomized controlled trials were included in the meta-analysis. Results Cognitive-behavioral therapy (838 participants) showed a large, significant effect (standardized mean difference = -0.905; 95% CI = (-1.622, -0.187); p = 0.013) and mindfulness interventions (186 participants) showed moderate, significant effects (standardized mean difference = -0.578; 95% CI = (-0.881, -0.275); p < 0.001) on decreasing caregiver depressive symptoms, while psychoeducational interventions demonstrated small but significant effects (standardized mean difference = -0.244; 95% CI = (-0.395, -0.092); p = 0.002). Emotional support, cognitive rehabilitation, and multicomponent interventions showed less than small or nonsignificant effects related to depressive symptoms among caregivers. Conclusion Cognitive-behavioral therapy interventions, which focus on diminishing negative thoughts and increasing positive activities, can effectively decrease depressive symptoms for caregivers of individuals with dementia. Future research is recommended to assess the long-term effectiveness of cognitive-behavioral therapy in this population.

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Women's Caregiving Experience of Older Persons Living With Alzheimer Disease and Related Dementias and Multiple Chronic Conditions: Using Wuest's Theory

Introduction Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. Objective The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. Methods Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. Findings Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. Conclusion Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.

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A validation of the Croatian version of Zarit Burden Interview and clinical predictors of caregiver burden in informal caregivers of patients with dementia: a cross-sectional study

Aim: To validate the Croatian version of the Zarit Burden Interview (ZBI) and to investigate the predictors of perceived burden.; Methods: This cross-sectional study involved 131 dyads of one informal caregiver family member and one patient with dementia visiting primary care practices (Health Care Center Zagreb-West; 10/2017-9/2018). Patient-related data were collected with the Mini-Mental-State-Examination, Barthel-index, and Neuropsychiatric-Inventory-Questionnaire (NPI-Q); caregiver-related data with the ZBI, and general information on caregivers and patients with a structured questionnaire. Principal-axis-factoring with varimax-rotation was used for factor analysis.; Results: The caregivers' mean age was 62.1±13 years. They were mostly women (67.9%) and patients' children (51.1%). Four dimensions of ZBI corresponding to personal strain, frustration, embarrassment, and guilt were assessed and explained 56% variance of burden. Internal consistency of ZBI (α=0.87) and its dimensions (α1=0.88, α2=0.83, α3=0.72, α4=0.75) was good. Stronger cognitive and functional impairment of patients was associated only with personal strain, whereas more pronounced neuropsychiatric symptoms and the need for daily care were associated with more dimensions. Longer caregiver education suppressed embarrassment and promoted guilt. Guilt was higher in younger caregivers, caregivers of female patients, patients' children, and non-retired caregivers. In multivariate analysis significant predictors of higher overall burden were male sex of the patient, higher NPI-Q, the need for daily-care services, shorter duration of caregiving, non-spouse relationship, higher number of hours caring per-week, and anxious-depressive symptoms in a caregiver.; Conclusion: The Croatian version of ZBI is reliable and valid. Our data confirm that ZBI is a multidimensional construct. Caregivers may benefit from individually tailored interventions.

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The Use of Modified Mindfulness-Based Stress Reduction and Mindfulness-Based Cognitive Therapy Program for Family Caregivers of People Living with Dementia: A Feasibility Study

Purpose: The aim of this study was to investigate the feasibility and preliminary efficacy of a modified mindfulness-based stress reduction (MBSR) program and mindfulness-based cognitive therapy (MBCT) program for reducing the stress, depressive symptoms, and subjective burden of family caregivers of people with dementia (PWD). Methods: A prospective, parallel-group, randomized controlled trial design was adopted. Fifty-seven participants were recruited from the community and randomized into either the modified MBSR group (n = 27) or modified MBCT group (n = 26), receiving seven face-to-face intervention sessions for more than 16 weeks. Various psychological outcomes were measured at baseline (T0), immediately after intervention (T1), and at the 3-month follow-up (T2). Results: Both interventions were found to be feasible in view of the high attendance (more than 70.0%) and low attrition (3.8%) rates. The mixed analysis of variance (ANOVA) results showed positive within-group effects on perceived stress (p =.030, Cohen's d = 0.54), depressive symptoms (p =.002, Cohen's d = 0.77), and subjective caregiver burden (p <.001, Cohen's d = 1.12) in both interventions across the time points, whereas the modified MBCT had a larger effect on stress reduction, compared with the modified MBSR (p =.019). Conclusion: Both the modified MBSR and MBCT are acceptable to family caregivers of PWD. Their preliminary effects were improvements in stress, depressive symptoms, and subjective burden. The modified MBCT may be more suitable for caregivers of PWD than the MBSR. A future clinical trial is needed to confirm their effectiveness in improving the psychological well-being of caregivers of PWD. 

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Understanding Resilience Factors Among Caregivers of People with Alzheimer's Disease in Spain

Introduction: Alzheimer's disease (AD) caregivers resilience involves the interaction between different risk and protective factors. Context of care, objective stressors, perceived stressors caregiver assessment, mediators factors and consequences of care were associated with resilience. We have developed a more integrated and operational conceptual model of resilience and care than previous models in our sociocultural environment. Purpose: To assess the resilience of caregivers of people with AD and the related factors grouped according to an established operational conceptual model of Alzheimer's caregivers stress. Patients and Methods: A total of 120 primary informal caregivers of AD persons in Badajoz (Spain) were included in a cross-sectional design. The following variables have been measured on AD persons and caregivers: socio-demographic data, dependency level, cognitive decline, neuropsychiatric and behavioral symptoms, anxiety, depression, severity of somatic symptoms, level of burden, self-esteem, coping, social support, health-related quality of life (HRQOL) and resilience. Results: Most of the caregivers reported symptoms of anxiety (63.3%) and depression (62.5%). We found out higher levels of resilience in caregivers with lower dependence caring (p=0.004). Higher resilience levels of caregivers were related to minor depressive (p=0.006) and anxiety symptoms (p=0.000), and higher HRQOL (p=0.000). Coping dimension mostly used was problem-based strategies such as active coping, positive reinterpretation and acceptance (p= 0.000). Conclusion: Those caregivers reporting higher levels of resilience exhibited moderate to intense indicators of burden, fewer symptoms of depression and anxiety and fewer somatic symptoms. They also used adequate problem-focused coping strategies, showed higher levels of HRQOL and demonstrated an appropriate perception of social support. Despite the fact that the characteristics relating to the care context and to social support exert an undeniable influence on caregiver resilience, it would appear that the caregiver's own intra-psychic resources reveal stronger correlations. Relevance for Clinical Practice: The early and accurate identification of caregivers with lower levels of resilience could enable the implementation of vital psychological and educative support interventions to help caregivers to improve their well-being.

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A systematic review of the provision and efficacy of patient and carer information and support (PCIS) interventions for patients with dementia and their informal carers

Background: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions.; Aims: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings.; Methods: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used.; Results: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention.; Conclusions: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital.

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Stress as a challenge in promoting mental health among dementia caregivers

BACKGROUND: Caregiver stress is harmful to the health of both caregivers and people living with Alzheimer's disease or other dementias. The present study was conducted to assess stress and its predictors of people living with Alzheimer's disease or other dementias' caregivers. METHODS: The present descriptive, analytical, cross-sectional study was conducted in December 2017-June 2018 in Isfahan, Iran. Data were collected by interviewing 99 caregivers had at least 6 months of experience caring for a patient diagnosed with Alzheimer's disease, through questionnaires developed by the researcher. A convenience sample (easy access) of caregivers was recruited from calling the home of formally diagnosed with Alzheimer's patient, that have registered in educational hospitals affiliated to Isfahan University of Medical Sciences and psychiatrists' office both paid caregivers (formal) and unpaid caregivers (family). All caregivers provided informed consent. The type and severity of the relationship between the dependent (stress) and independent variable were assessed using Pearson's and Spearman's correlation coefficients, the independent t-test, and the multivariate regression analysis. RESULTS: The caregivers' mean stress score was 25.4 +/- 10.9 (range: 4-54). About 80% of the caregivers were female. Age and stress score was correlated (P = 0.004), the mean stress score was significantly higher in female caregivers (P = 0.04), informal caregivers (P < 0.001), and significantly lower in the caregivers with previous experience of caring for Alzheimer's patients (P = 0.02) or those introduced by service companies (P = 0.005). Variables including the family relationship with the patient (P = 0.01), kind of caregiving (P = 0.03), and previous experience of caring for Alzheimer's patients (P = 0.04) were stronger predictors of the stress score. CONCLUSION: Stress is a challenge in promoting mental health among dementia caregivers. Providing social support with an emphasis on physical, mental, and social health is mandatory, especially for female and family caregivers, to promote stress management, mental health in this group, and enable optimal and purposeful care.

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Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy

Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (beta = - 1.205; p = 0.029), being 40-54 years-old with depression symptoms (beta = - 1.739; p = 0.003), and being female with symptoms of both depression (beta = - 1.793; p < 0.001) and anxiety (beta = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (beta = 0.286; p < 0.000; beta = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (beta = 0.164; p = 0.010; beta = - 1.133; p = 0.033; beta = - 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.

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A second chance: Experiences and outcomes of people with dementia and their families participating in a dementia reablement program

Rationale: Evidence-based reablement programs for people with dementia and their caregivers are not routinely implemented in practice. These programs have been shown to be effective in delaying functional decline and improving caregiver wellbeing. Yet, little is known about the experiences of those participating in such programs. Aim: To describe experiences and outcomes of participating in a dementia reablement program, the Care of Persons with dementia in their Environments (COPE), in Australia. Methods: Purposeful sampling was used and semi-structured interviews were completed with people with dementia and their caregivers who received the COPE program in two different states in Australia. The interviews explored the participants' experiences with the program as well as how they are managing after program completion. Thematic analysis was used to identify themes from the interviews. A Likert scale was used to rate the value of the program. Results: Ten dyads (person with dementia and/or their caregiver) were interviewed. Participation in the program was rated (mostly) very valuable. The ongoing collaboration between the therapist and caregiver was considered empowering. The program promoted participation in everyday activities for the person with dementia and appeared to give a 'second chance' to remain in their own homes and communities. Conclusion: Participation in reablement programs (such as the COPE program) has the potential to re-engage people with dementia in meaningful roles and activities in their chosen environments. A therapeutic relationship and individualized intervention approaches tailored to the participants' needs and readiness foster positive experiences and confidence. 

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The Relationship Between Spiritual Well-Being and Care Burden in Unofficial Caregivers of Elderly Patients With Dementia

Objectives Dementia is a common disease in the elderly and imposes a heavy care burden on family members. Many factors can be associated with care burden. One of these factors can be the caregivers' Spiritual Well-Being (SWB). This study aimed to examine the relationship between SWB and care burden in caregivers of dementia patients. Methods This correlational study was conducted on 60 caregivers (75% female and 25% male with a mean age of 47 years) of patients with dementia referred to Rasoul-e-Akram Hospital and Brain & Cognitive Clinics in Tehran, Iran in 2019. Samples were selected using purposive and convenience sampling methods. The caregivers were evaluated by using the Caregiver Burden Questionnaire and SWB Scale and a socio-demographic checklist. Data were analyzed by using Pearson's correlation coefficient and multiple linear regression analysis in SPSS software at the significance level of P<0.05. Results About 16.7% of caregivers had little care burden, 35% had moderate to severe burden, 25% moderate burden and 23.3% severe burden. Moreover, 1.7% had poor SWB, 66.7% moderate SWB and 31.7% high SWB. The care burden had a negative and non-significant relationship with religious dimension of SWB (r=-0.089, P=0.505), and a negative and significant relationship with existential dimension of SWB (r=-0.283, P=0.032). Linear regression model revealed that existential dimension had a relationship with care burden (beta=-0.298, P=0.023) and explained 9% of variation in care burden. Conclusion SWB plays an important role in improving the overall health of caregivers. in addition to being one of determinant of care burden, it acts as a factor in enhancing other aspects of health. Overall, caregiving is a stressful job; being aware of positive topics such as spirituality helps therapists provide strategies for caregivers to reduce their stress and care burden.

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Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

Objectives: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. Methods: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. Findings: Two themes with related sub-themes were identified: (1) Protectiveness - protecting the person with dementia, themselves as carers and their current lifestyle; (2) 'It's not for us' - the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. Conclusion: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial.

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Racial Differences in Respite Use among Black and White Caregivers for People Living with Dementia

Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers (n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee.Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.

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Quality of life and the associated factors among family caregivers of older people with dementia in Thailand

Long-term care for older people with dementia can adversely impact a family caregiver's life. A decrease in their quality of life may compromise the quality of care they provide to older people and their own quality of life. The samples include 76 family caregivers of older people with dementia in Thailand. Six questionnaires and the EuroQoL Five Dimensions Questionnaire were used in data collection. Descriptive and inferential statistics were used in data analysis. The findings revealed that quality of life of family caregivers was at a high level. Experiences of close relationships between care dyads and perceived social support were positively related to family caregiver's quality of life, whereas perceived stress and burden were negatively related. Perceived social support and experiences of close relationships might be predictors of family caregiver's quality of life. High quality of life levels among Thai family caregivers of older people with dementia were influenced by high perceived social support and high experiences of close relationships. An intervention focusing on modifying such predicting factors may effectively help maintain quality of life of these family caregivers. 

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Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer's and Related Dementia

No studies have included the experiences and needs of informal caregivers who are deaf, use American Sign Language (ASL), and care for a loved one with Alzheimer's disease or related dementias (ADRD). The CDC's BRFSS Caregiver Module and PROMIS-Deaf Profile measures were administered via an online bilingual English/ASL platform between October 2019 and March 2020. Out of 194 deaf adult signers who completed an online survey, 42 respondents (mean age = 66; SD = 12; 74% White) endorsed informally caring for someone with a medical condition. In this survey subsample of informal caregivers, more years of education was significantly associated with higher generic quality of life and higher deaf-specific quality of life. A smaller subset of informal deaf informal caregivers who were currently taking care of loved ones with ADRD were then invited to participate in a semi-structured interview. Among the 22 informal caregivers who were interviewed, there was a strong agreement among the participants who felt that their quality of life as informal caregivers was worse than hearing informal caregivers who took care of loved ones with ADRD. Findings highlight the importance of a call to action to address the needs of deaf informal ADRD caregivers.

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A qualitative study of family caregivers' coping strategies of looking after people with dementia in China

Background and aims: Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers' coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers' coping strategies in China. The aim of this study was to explore the family caregivers' coping strategies when caring for people with dementia in one city in the province of Shandong, China. Methods: Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. Results: Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. Conclusion: The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population.

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Psychoeducational intervention on burden and emotional well-being addressed to informal caregivers of people with dementia

Background In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months. Method We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona. Results At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P< 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls. Conclusions Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home.

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Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

Background: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods: This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion: Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers' general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO.

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Prevalence of dementia and quality of life of caregivers of people living with dementia in Malaysia

Aim: Dementia is the major cause of disability among older persons and leading physical and psychological sequelae for both the person living with dementia (PLwD) and their caregivers. The aim of this study was to determine the prevalence of dementia in Malaysia and identify the factors influencing quality of life (QoL) of caregivers of PLwD.; Methods: A nationwide survey was conducted among individuals aged ≥60 years. Cognition was assessed with the Identification and Intervention for Dementia in Elderly Africans (IDEA) tool. QoL of older caregivers was assessed using the Control, Autonomy, Self-Realization and Pleasure (CASP-19) questionnaire.; Results: The prevalence of dementia among older adults aged ≥60 years in Malaysia was found to be 8.5%. The prevalence was found to be higher among females, those with no formal education and those in rural areas in Malaysia. The mean QoL of family caregivers of PLwD was significantly lower than the caregivers of older adults without dementia were (P < 0.001). Multivariable linear regression analysis on the subpopulation of PLwD showed that inability to carry out activities of daily living among PLwD (P = 0.014) and low to fair social support for the caregivers (P < 0.001) were negatively associated with QoL of caregivers of PLwD.; Conclusions: The high prevalence of dementia among older adults in Malaysia emphasizes the need for affirmative action in Malaysia. The functional capacity of the PLwD and social support determines the QoL of caregivers of PLwD in Malaysia. Thus, the community as a whole needs to provide support to PLwD and their caregivers. 

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Patient and caregiver outcomes at the integrated memory care clinic

• Caregivers' distress relative to their persons' delusions decreased significantly. • Caregivers' distress relative to their persons' anxiety decreased significantly. • Severity of persons' living with dementia delusions decreased significantly. • Severity of persons' living with dementia depression decreased significantly. • Total symptom severity for persons living with dementia decreased significantly.

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers' psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs' quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers' distress regarding their PLWDs' delusions and anxiety, and PLWDs' severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.

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A Novel Educational Prescription Web-Based Application to Support Education for Caregivers of People Living With Dementia: Development and Usability Study With Clinicians

Background: It is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition. Web-based family/friend caregiver interventions may be helpful, but little is known about how best to implement them.; Objective: The objectives of this study were to 1) design and develop a novel education prescription application to help scale and spread web-based dementia education to family/friend caregivers, 2) conduct user testing, and 3) conduct a larger-scale field trial.; Methods: A novel education prescription web-based application was designed and developed. Initial user testing used task completion and the "think aloud" technique with a small sample of representative clinicians who work with people living with dementia and family/friend caregivers. Following iterative incorporation of feedback, a larger field trial was conducted with a convenience sample of clinicians. Account invitations were sent to 55 clinicians and, following a 2-month trial period, surveys were administered to participants including the System Usability Scale and the Net Promoter Score.; Results: During the initial user testing phase, participants (N=7) from representative disciplines easily completed associated tasks, and had very positive feedback with respect to the usability of the application. The System Usability Scale score during this phase was 91.4. Suggestions from feedback were incorporated into the application. During the larger field trial phase, participants (total N=55; activated account n=17; did not activate account n=38) were given access to the iGeriCare education prescription application. During this period, 2 participants created educational prescriptions; a total of 3 educational prescriptions were sent. Survey completers who did not activate their account (n=5) identified that their lack of use was due to time constraints, competing priorities, or forgetting to use the application. Survey completers who activated their account (n=5) identified their lower use was due to lack of time, lack of eligible family/friend caregivers during trial period, and competing priorities due to the COVID-19 pandemic. The System Usability Scale score during this phase was 78.75, and the Net Promoter Score was 50.; Conclusions: Study findings indicate a generally positive response for the usability of a web-based application for clinicians to prescribe dementia education to family/friend caregivers. The dissonance between the promising data and widespread enthusiasm for the design and purpose of the education prescription application found in the initial user testing phase and subsequent lack of significant adoption in the field trial represents both an important lesson for other novel health technologies and a potential area for further investigation. Further research is required to better understand factors associated with implementation of this type of intervention and impact on dissemination of education to family/friend caregivers. 

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Nonpharmacological Forms of Therapy to Reduce the Burden on Caregivers of Patients with Dementia-A Pilot Intervention Study

The aim of this pilot intervention study was to assess the effectiveness of selected forms of therapy (massage and relaxation) in reducing the perceived burden and improving the emotional status of caregivers of people with dementia and to determine which form of physical intervention is most effective. The study group was made up of 45 informal caregivers, who were divided into three subgroups (the massage group, relaxation group and control group). The Caregiver Burden Scale (CBS), Beck Depression Inventory (BDI), Berlin Social Support Scale (BSSS) and the Satisfaction with Life Scale (SWLS) were used. In the study group of caregivers, an average level of perceived burden, satisfactory life satisfaction and moderate severity of depressive symptoms were found. Massage led to a reduction in perceived burden and an improvement in mood and well-being of the examined group of caregivers. Group relaxation activities had no effect on the level of burden experienced by the caregivers, but significantly improved their mood. Both massage and relaxation were equally effective in improving the well-being of caregivers. Due to the lower cost of group activities, relaxation activities seem to be more effective and easier to organize, but further studies are necessary.

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The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

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Moving Evidence-Informed Assessment and Management of Behavioral and Psychological Symptoms of Dementia into the Real World: Training Family and Staff Caregivers in the DICE Approach

Objective: To investigate the impact of a one-day training program on care-givers' confidence and knowledge in managing aspects of dementia care. Design: One-day caregiver training program featuring: 1) an interactive, multi-media format; 2) a companion manual; and 3) a "brain-storming" session at the end of the day that utilized attendees' real-world cases where the use of the DICE (Describe, Investigate, Create, and Evaluate) approach was illustrated "live." Setting: Three different geographical sites in Michigan. Participants: Family (n = 40) and professional (paid; n = 140) caregivers (total n = 180) for people with dementia. Measures: Preand post self-ratings related to confidence in aspects of dementia care management before and directly after the training. Results: Comparing self-ratings pre and post-training, more than 50% of family caregivers showed improvement in confidence post-training on 11 of 12 items with significant improvement in 4 items. Among professionals, more than 50% of caregivers showed improved confidence on 3 of 12 items, with 4 items showing significant improvement. Family caregivers were significantly more likely than professionals to show improved confidence on 6 of 12 items. Conclusions: The number of people with dementia and their family caregivers is large and growing every day with the aging of the population. Living well with dementia is the goal. Current care systems are inadequate and lead to multiple poor outcomes. Innovative solutions like the DICE Approach with delivery methods including a manual and interactive training can put the key components of good dementia care at the fingertips of the people who need it most.

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Missing the Mark: The Complexity of African American Dementia Family Caregiving

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families. 

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Mining Social Media Data to Study the Consequences of Dementia Diagnosis on Caregivers and Relatives

Introduction: Caregivers for people with dementia face a number of challenges such as changing family relationships, social isolation, or financial difficulties. Internet usage and social media are increasingly being recognised as resources to increase support and general public health. Objective: Using automated analysis, the aim of this study was to explore (i) the age and sex of people who post to the social media forum Reddit about dementia diagnoses, (ii) the affected person and their diagnosis, (iii) which subreddits authors are posting to, (iv) the types of messages posted, and (v) the content of these posts. Methods: We analysed Reddit posts concerning dementia diagnoses and used a previously developed text analysis pipeline to determine attributes of the posts and their authors. The posts were further examined through manual annotation of the diagnosis provided and the person affected. Lastly, we investigated the communities posters engage with and assessed the contents of the posts with an automated topic gathering/clustering technique. Results: Five hundred and thirty-five Reddit posts were identified as relevant and further processed. The majority of posters in our dataset are females and predominantly close relatives, such as parents and grandparents, are mentioned. The communities frequented and topics gathered reflect not only the person's diagnosis but also potential outcomes, for example hardships experienced by the caregiver or the requirement for legal support. Conclusions: This work demonstrates the value of social media data as a resource for in-depth examination of caregivers' experience after a dementia diagnosis. It is important to study groups actively posting online, both in topic-specific and general communities, as they are most likely to benefit from novel internet-based support systems or interventions.

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Loneliness and Burden Perceived by Family Caregivers of Patients With Alzheimer Disease

Background: The present study aimed at investigating loneliness and burden experienced by family members caring for relatives diagnosed with Alzheimer disease. Methods: Participants were 40 caregivers of inpatients with Alzheimer disease. Correlation and multiple regression analyses were conducted to investigate whether caregivers' loneliness (uni- and multidimensional) and burden are associated with and predicted by (1) specific caregiver characteristics and/or (2) patients' dementia severity and neuropsychiatric symptoms. Results: Loneliness was significantly correlated with caregivers' sex, age, and living circumstances, while burden was significantly correlated with caregivers' education solely. Regression analyses revealed that caregivers' sex and living circumstances contributed significantly to variance explanation of loneliness (but not burden), while the additional consideration of patient variables did not improve model fit. Conclusions: Loneliness reported by caregivers of relatives diagnosed with dementia is significantly modulated by caregiver (but not patient) characteristics. Notably, both uni- and multidimensional loneliness scales seem to be sensitive diagnostic tools.

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Living with dementia: increased level of caregiver stress in times of COVID-19

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 +/- 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

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Life‐space mobility in dementia patients and family caregivers: A dyadic approach

Background and objective: Given that most dementia care is provided at home by family caregivers, caregivers' health and outdoor activities may influence persons with dementia (PWDs)' mobility. At the same time, PWDs' functional deterioration and mobility changes might affect mobility behaviours in their caregivers. The aims of this pilot study were to examine the relationship of PWD's life‐space mobility (LSM) with their caregiver's LSM and to investigate the role of caregiver and PWD characteristics in determining the level of LSM in both PWDs and caregivers. Design and method: A cross‐sectional survey was conducted with 26 caregivers providing dementia care at home. Caregivers were used as proxy for assessing sociodemographic, clinical and physical function in PWDs. Caregivers' sociodemographic characteristics, LSM, social support, depressive symptoms, caregiving burden and preparedness for caregiving were measured. Results: The level of LSM in caregivers was correlated with the PWD's LSM level. Caregivers who perceived high levels of social support and readiness for caregiving tended to report high levels of LSM. PWDs' age and independence in instrumental activities of daily living were correlated with caregivers' LSM. Conclusions: The study findings suggest that the caregiver's LSM influenced and was affected by the PWD's LSM. This underscores the need for additional research that examines the role of caregivers' psychosocial and physical health on PWDs' mobility and the context of dementia care and its influences on how dementia care dyads decide and participate in mobility behaviours. Implications for practice: The findings of this pilot study will be helpful in identifying a target for interventions designed to delay the onset of mobility disability and maintain and improve social participation in PWDs. To minimise the effects of mobility limitations in PWDs, it is critical to examine their mobility issues from multilevel perspectives, including their caregiver's LSM levels and characteristics that have implications for both research and clinical practice.

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Latina/o and non-latina/o brain injury and dementia patients' and caregivers' health: An actor/partner interdependence model

Background: The interdependence between patient and caregivers' health, which is when the patients' and informal caregivers' emotion, cognition and/or behavior affects that of the other person is well documented among dyads experiencing cancer and heart disease, but scant research has assessed interdependence among those with brain injuries or dementia and Latina/o populations. This study aimed to assess the interdependence of patient and caregiver depression, patient functional independence and caregiver burden among non-Latina/o and Latina/o and patients with brain injuries and dementia and their caregivers. Methods: Patients and caregiver dyads (n = 96) were recruited from a trauma hospital. Participants completed measures on patient and caregiver depression, patient functional independence and caregiver burden. Participants provided written informed consent. Patient inclusion criteria included: (1) diagnosis with a brain injury or dementia, (2) minimum age of 12, (3) community dwelling and (4) ability to verbally communicate and complete study measures. Caregivers were only included if they were informal, unpaid, family or a friend. Nonparametric Spearman's Rho correlations were conducted to test the study hypotheses. Discussion: There was consistently a statistically significant positive relationship between caregiver depression and caregiver burden for all groups. For non-Latina/o patient and caregiver dementia dyads, there were associations between patient depression and caregiver depression. For non-Latina/o dementia dyads, functional ability was only associated with patient depression. For Latina/o patient and caregiver brain injury and dementia dyads, the only statistically significant relationship was between caregiver depression and caregiver burden. Health services should embrace family-focused mental health and respite interventions.

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Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.

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International Development of the Alzheimer's Patient Partners Life Impact Questionnaire (APPLIQue)

Aim: Informal caregivers play a vital role in the care of people with Alzheimer's Disease (AD), yet caregiving is associated with caregivers' burden. The initial objective of the study was to develop a new outcome measure to assess quality of life (QoL) in AD caregivers. Methods: Informal (non-professional) caregivers providing 75% or more of the care activities for, and living in the same household as, a person with AD were invited to take part in the study. Qualitative interviews (N = 40) were conducted with AD caregivers in the UK and thematic analyses were applied to generate a pool of potential items. A draft questionnaire was produced and adapted for use in Italy, Spain, Germany and the US. In each of the 5 countries, cognitive debriefing interviews (N = 76) were conducted to determine the questionnaire's face and content validity, followed by a postal validation survey (N = 268). The data from these surveys were combined to reduce the number of items and assess the new questionnaire's psychometric properties. Results: Thematic analysis of the UK interview transcripts generated a draft questionnaire, which was successfully translated into each additional language. The items were well accepted and easy to complete. However, reanalysis of the qualitative interview data revealed that spousal and non-spousal caregivers identified different experiences of caregiving. A review of the item pool indicated that items were primarily targeted at spousal caregivers. Therefore, further analyses of the postal survey data included spousal caregivers only (n = 116). The results supported scaling assumptions (e.g., corrected item-total correlations >= 0.32), targeting (e.g., floor/ceiling effects <2.5%), internal consistency (alpha >= 0.93) and test-retest reliability (r(s) = 0.88) of the new questionnaire, according to classical test theory. Assessment of external construct validity yielded results in accordance with a priori expectations. QoL scores were most strongly related to scores on the emotional reactions sections of the Nottingham Health Profile and the General Well-Being Index. The new questionnaire was found to be capable of detecting meaningful differences between respondents; spousal caregivers had worse QoL when the person with AD was confused (p < .001), could not be left alone (p < .001), did not recognize the caregiver (p < .001), was incontinent (p < .05), and wandered around the house (p = .01). Conclusions: The Alzheimer's Disease Patient Partners Life Impact Questionnaire (APPLIQue) is a questionnaire specific to spousal caregivers of people with AD. Data support its scaling assumptions and it exhibits excellent psychometric properties according to classical test theory. The questionnaire is recommended for use in intervention studies where the QoL of spousal caregivers is of interest.

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Information support system for Alzheimer's disease patients' caregivers in Croatia: a phenomenological approach

Introduction. The paper presents findings from a study that investigated information needs of caregivers of Alzheimer's disease patients' in Croatia, a country in which health and social care systems for such persons are insufficiently developed. Special emphasis is put on the barriers caregivers face in obtaining required information or services. Methods. Interviews with 11 Alzheimer's disease patients' caregivers from the area of Eastern Croatia were conducted. Interpretative phenomenological analysis was chosen as the best method to interpret the caregivers' experience of information support received from the Croatian system. Analysis. Topics were defined for each interview and then superordinate topics were defined for the whole sample. Results. Results show that Alzheimer's disease patients' caregivers in Croatia are faced with numerous obstacles. No organised information support system was detected. Conclusions. A more holistic approach to information support is needed. Authors suggest an Alzheimer's disease information package to be distributed through the family doctors' practices.

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Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers

Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. Design Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. Results Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

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How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis

Background and Objectives: Caring for a person with dementia places a significant burden upon informal caregivers and leads to decreased psychological and physical health, which is why dementia caregiver interventions have been developed. However, empirical evidence for the efficacy of those interventions is inconclusive and the last comprehensive meta-analysis (Pinquart & Sorensen. Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics. 2006;18(4), 577-595.) was published more than 10 years ago. Research Design and Method: This meta-analysis aims to update the meta-analysis conducted by Pinquart and Sorensen. Based on a systematic search in electronic data bases, effects of 282 controlled studies were integrated. The effectiveness of different intervention types and influences of study characteristics were evaluated. Results: Interventions had, on average, a significant, small-to-moderate effect on the improvement of ability/knowledge, subjective well-being, burden, depression, and the caregiver's anxiety as well as symptoms of the care recipient. No mean effect was found in regard to reducing the risk of institutionalization. Most intervention types had an effect on the reduction of burden as well as on other outcomes. Psychoeducation and multicomponent interventions affected most outcomes, whereas the efficacy of other intervention types was domain-specific. Discussion and Implications: There is evidence for the efficacy of dementia caregiver interventions, though due to having predominantly small effect sizes, there is still room for improvement. Interventions should be tailored to the desired outcome. More research on long-term effects, effects on anxiety and institutionalization, efficacy of respite and support interventions, care recipient training, and the intervention process is needed.

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Health literacy, social support, and care ability for caregivers of dementia patients: Structural equation modeling

At present, the level of health literacy, social support, and care ability of dementia caregivers is not very high. Therefore, the purpose of this study was to construct a structural equation model to explore the relationship between health literacy, social support, and the care ability of dementia caregivers. It is hoped that the study will provide a theoretical basis for future intervention. We recruited 225 dementia patients and their caregivers from August 2018 to June 2019 at the Department of Geriatrics and Neurology. We issued a health literacy questionnaire, social support scale, and a care ability questionnaire. Statistical analyses were performed using SPSS 19.0 and SPSS Amos 23.0. The mean scores for health literacy, social support, and care ability were 13.93 +/- 4.18, 34.64 +/- 6.42, and 44.44 +/- 9.31, respectively. Health literacy was directly related to social support (path coefficient = 0.454). Social support was directly related to care ability (path coefficient = 0.293). Furthermore, health literacy was directly related to care ability (path coefficient = 0.561), while health literacy had indirect associations with care ability via social support (path coefficient = 0.133). This study showed that improving the health literacy of caregivers effectively improved their care ability, and that social support was important for the link between health literacy and care ability. Medical staff and family members can provide appropriate health education and social support according to the characteristics of caregivers to improve the care ability of caregivers, improve the quality of life of patients, and delay the disease process. 

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Group cognitive behavioural therapy for family caregivers of people with dementia: A single-arm pilot study

No abstract. Discusses a  trial in Japan to demonstrate feasibility and efficacy of a multi‐component intervention for caregivers of people with dementia comprising CBT and positive psychology.

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Geriatrics workforce enhancement program: educational outcomes of community-based dementia caregiver conferences

Providing educational interventions to informal dementia caregivers has been shown to have numerous positive outcomes including improving general well-being and quality of life as well as reducing depression, anxiety, and caregiver stress. The purpose of this study is the development, delivery, and evaluation of caregiver conferences to educate informal dementia caregivers about dementia and caregiving. We provided eight half-day conferences for informal caregivers to educate them about Alzheimer's disease and related dementias (ADRD) and make them aware of community and state resources. Demographic and program evaluation surveys including an assessment of Alzheimer's disease knowledge were administered to participants. A total of 563 community-based caregivers attended the conferences. Participants tended to be female, White, and well-educated. Evaluation surveys showed high levels of satisfaction with the training. Paired t-tests showed no significant differences in AD knowledge prior to and following the training. Although there were no statistically significant improvements in participant ADRD knowledge, participant reported satisfaction levels with the conferences were high with the agreement that their educational needs were met and that the information that they learned will help improve the care they provide to the individual(s) with ADRD.

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Factors associated with the perception of services by dementia informal caregivers in Greece: the role of familism

Aim: To investigate perceptions of informal caregivers of community-dwelling persons with dementia (PwD) regarding health and social care services and their correlates using the Behavioral Model of Healthcare Utilization as the theoretical framework.; Methods: This was a cross-sectional study using a purposive sampling technique to identify, through community-based health and social care services, caregivers of PwD. Face-to-face interviews were conducted with 118 informal caregivers (78.8% female, mean age = 58.9 years) via a structured questionnaire.; Results: Three 'Perceptions of Services' subscales were identified: 'Availability and Adequacy of Services' (AAS), 'Physicians' Competence' (COMP), and 'Professionals' Behavior' (PB). Predisposing factors (gender, employment, familism) and enabling/impeding factors (caregiving impedes work, quality of life aspects - environment and social relationships, information about dementia) were significant correlates of the AAS and COMP subscales. Familism was negatively associated with the AAS subscale. PwD's perceived declined physical and behavioral functioning was related to worse perceptions regarding professionals' behavior (PB) toward the PwD.; Conclusion: Understanding the factors associated with caregivers' perceptions of health and social care community services may guide the development of interventions that facilitate the appropriate use of those services, provide increased support to PwD and their caregivers, and delay potential institutionalization.

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Exploring interface design to support caregivers' needs and feelings of trust in online content

Introduction: Family caregivers of people living with dementia require a range of accurate, current, and reliable information throughout the care trajectory. Much of this information is available online, however it can be difficult for caregivers to identify and decide what content is relevant to them. Little is known about how online design cues impact family caregivers' decision to assess how trustworthy information is and whether to engage with it.; Methods: Our exploratory research focused on the interface design of CARE-RATE, an online search tool intended to support more effective information searches for family caregivers seeking dementia care-related resources. Data from focus groups were coupled with design literature to inform the development of three mockups that were evaluated by seven dementia caregiver experts.; Results: Participants preferred a search bar design because of its simplicity, familiarity, and functionality. Design elements that impact trust included logos from reputable organizations, transparency of content author, and ratings from other caregivers.; Conclusion: Feelings of trust regarding information, including the ability to ascertain trustworthiness, is a major aspect of caregivers' willingness to engage with online content. Transparency and familiarity appear to be key elements that impact caregivers' trust in online information, which agrees with current web design research. 

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Exploring dementia family caregivers' everyday use and appraisal of technological supports

• Family dementia caregivers described use of several everyday technologies. • In this sample, common technology use patterns were shaped by the caregiving need. • Perceived utility, existing familiarity, and social resources promoted technology use. • Caregiver perspectives must be harnessed in the design and delivery of technology.

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

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The Effects of COVID-19 Home Confinement in Dementia Care: Physical and Cognitive Decline, Severe Neuropsychiatric Symptoms and Increased Caregiving Burden

Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 +/- 13.54 years, 41.7% female) of individuals with NCD (74.28 +/- 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). Discussion: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.

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Effectiveness of online dementia caregivers training programs: A systematic review

• Online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive. • Results are encouraging that the training programs included in this systematic review improved caregiver knowledge, self-efficacy, anxiety, depression, caregiver burden and satisfaction. • Results, however, were less consistent when evaluating competency, stress, and care recipient status.

Over the next thirty years, Alzheimer's disease rates will increase alongside global aging. With the anticipated increase in demand, knowledgeable and skilled dementia caregivers will be in need across the long-term care spectrum. This study is a systematic review of online dementia-based training programs for formal and informal caregivers conducted to analyze evidence for using online training programs. We used the Preferred Reporting Items for Systematic Reviews (PRISMA) method. Methodological quality was assessed by the Cochrane Collaboration Back Review Group criteria. No previously published systematic review has analyzed online dementia training programs among both formal and informal caregivers. A systematic search of Web of Science, PsychInfo, and PubMed resulted in a final sample of (N = 19) studies. Results suggest that online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive.

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Dyadic Group Exercises for Persons with Memory Deficits and Care Partners: Mixed-Method Findings from the Paired Preventing Loss of Independence through Exercise (PLIÉ) Randomized Trial

Background: Non-pharmacological therapies for persons with dementia (PWD) are needed. Objective: To develop and test the Paired Preventing Loss of Independence through Exercise (PLIÉ) program, an integrative group movement program for PWD and care partners (CPs). Methods: Participants were randomized to immediate or delayed start to Paired PLIÉ in community-based classes (1 hour, 2 days/week, 12 weeks, 3 home visits). Co-primary outcomes included standard measures of cognition, physical function,and quality of life (PWD) and caregiver burden (CPs) assessed by blinded assessors, analyzed using linear mixed models to calculate effect sizes for outcome changes during Paired PLIÉ, controlling for randomization group. Anonymous satisfaction surveys included satisfaction ratings and thematic analysis of open-ended responses. Results: Thirty dyads enrolled, 24 (80%) completed. PWD (mean age 80; 55% female) experienced significant improvement in self-rated quality of life (Effect Size+0.23; p = 0.016) when participating in Paired PLIÉ, while CPs experienced a non-significant increase in burden (-0.23, p = 0.079). Changes in physical and cognitive function in PWD were not significant. All CPs returning the satisfaction survey (n = 20) reported being moderately-to-highly satisfied with the program. Thematic analyses identified physical (e.g., sit-to-stand, more energy), emotional (enjoyment), and social benefits (peer-to-peer interaction) for PWD and CPs; challenges were primarily related to getting to the in-person classes. Conclusion: Paired PLIÉ is a promising integrative group movement program that warrants further study. It is feasible and may improve self-rated quality of life in PWD. Although CPs may experience increased burden due to logistical challenges, most reported high satisfaction and physical, emotional, and social benefits. 

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Development of a Daily Use Caregiver Sleep Survey (DUCSS) A Mixed-Method Design

Dementia caregiving is associated with depression, stress, and sleep disturbance. A daily use caregiver sleep survey (DUCSS) was developed to evaluate caregiver sleep. The tool was distributed to 24 informal caregivers and validated using the Rasch model, which indicated that the 17-item survey produced sleep quality measures of sufficient reliability for both group-level and individual-level comparisons (reliability = .87). The sample size was sufficient to provide precise measures of the item's position along the scale (item difficulty) (reliability = .85), so outcomes associated with sleep quality levels could be evaluated. We observed that the structure of the instrument is unidimensional, meaning the wording does not contain systematic biases peripheral to sleep quality. DUCSS is a useful tool for caregiver assessment and monitoring.

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Developing a social capital scale for family caregivers of people with dementia

• There is a lack of social capital scale specialized for family caregivers of people with dementia. • We developed the new social capital scale for family caregivers of people with dementia. • The 17-scale was assessed for model fit, dimensionality, reliability and validity. • This social capital scale had sufficient reliability and evidence of validity.

Although several scales have been designed to measure social capital, none have been specialized for caregivers of people with dementia, even though social capital is important in terms of continuing care provision. Therefore, we developed and validated a 17-item measure to assess social capital among caregivers of people with dementia. We assessed psychometric properties using responses from a questionnaire survey that included a draft of a social capital scale. Factor analysis identified three factors involving 17 items with a Cronbach's alpha of.85. The intra-class coefficient for test–retest reliability was.71. The correlation with positive aspects of caregiving was.62 (p <.01). The results suggest that our scale could be a useful tool to assess social capital among caregivers of people with dementia.

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Designing virtual communities of practice for informal caregivers of Alzheimer's patients: An integrative review

The main aim of this study is to review the literature to show how ideas around virtual communities of practice (VCoP) offer a model for supporting informal caregivers of Alzheimer's patients (caregivers) to learn how to deal with caregiving demands. Caregivers are individuals who have a significant personal relationship with and provide a broad range of unpaid assistance to an older person or an adult with a chronic or disabling condition outside of a professional or formal framework. This review will examine the current evidence on the needs of caregivers, identify dimensions to be considered in VCoP design and suggest further directions of research. The investigation is an integrative review that builds a bridge between different areas of work. The outcome is eleven dimensions for the design of successful VCoPs for caregivers: Network Structure, Technology, Moderator, Scale, Alignment, Community Design, Sense of Trust, Knowledge Sharing, Sustainability, Ethics and Evaluation. In addition, we propose a Tree Metaphor to present our research results. Well-designed interventions based on VCoP principles have the potential of addressing caregivers' needs. 

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Challenges and strategies in communication with people with dementia and their informal caregivers in community pharmacies - a narrative approach

Background: People with dementia and their informal caregivers get in touch with the healthcare system predominantly via contacts with primary care providers. Among these, community pharmacists have been denominated as the health professionals most accessible to the public. Communication with and counselling people with dementia and their informal caregivers present particular challenges to pharmacists.; Aim: This study aims to research the challenges faced and strategies used by community pharmacists who deal with people living with dementia and their informal caregivers.; Methods: Within the context of two workshops with 74 participants, 15 small groups were formed, each of which generated and discussed a small story. Fourteen of those narratives were reported, tape recorded and transcribed. In these 14 narratives, community pharmacists reflected on their experiences with people with dementia or their informal caregivers. The narratives were systematically analysed and interpreted.; Findings: Among the main challenges reported by the workshop participants are the difficulty of identifying a person with dementia; the question of what appropriate communication is; the only partially successful networking with doctors, nursing personnel and support institutions; unsuccessful counselling; and the tension between the economic situation and the care for people with dementia and their informal caregivers. In general, strategies for dealing with people with dementia are characterised by uncertainty whereas communication with informal caregivers is well rehearsed and effective.; Conclusions: Community pharmacies require possibilities to retreat for counselling as well as the possibility for pharmacists to take time for people with dementia and their informal caregivers in everyday pharmacy life. Reflective spaces for narrations about difficult situations provide relief for staff in community pharmacies. 

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Caring for Older Adults With Vision Impairment and Dementia

Background and Objectives: Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context. Research Design and Methods: We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. Vision impairment was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey report, interviews, and cognitive tests. Our outcomes included hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month. Results: Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7 times as many hours (95% confidence interval [CI] = 1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI = 1.1-1.6) and VI only (95% CI = 1.1-1.6) spent 1.3 times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2 times as many valued activities affected (95% CI = 2.2-4.6), while caregivers of dementia only and VI only reported 1.9 times (95% CI = 1.4-2.6) and 1.3 times (95% CI = 0.9-1.8) more activities affected, respectively. Discussion and Implications: Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI. Translational Significance: When compared with caring for older adults with either dementia or vision impairment, caring for older adults with both dementia and vision impairment involves more hours of caregiving per month and further limits caregivers' ability to participate in social activities. Low-vision rehabilitation and integration of low-vision services into the care of older adults with dementia and vision impairment may reduce caregiver burden.

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Caregivers' Sense of Coherence: Implications on Direct and Indirect Costs of Dementia Care

Background: Dementia care is associated with physical, emotional, and monetary impact on the informal carers providing unpaid care. Differences in the personal characteristics of caregivers may help explain the variations in the costs of dementia care. Objective: The aim of this study was to analyze the effect of caregivers' sense of coherence (SOC) on direct and indirect costs in dementia care. Methods: A cross-sectional study was conducted in community dwelling caregivers of patients with Alzheimer's disease. Data of healthcare services were obtained from clinical registries, and information was collected from caregivers regarding their use of social care resources and time spent caregiving. The transformation of all costs into Euros was made assigning a fixed cost of 10.29 (sic)/h and 16.24 (sic)/h for assisting in instrumental and basic activities of daily living, respectively. Caregivers' SOC was assessed using the Orientation to Life Questionnaire (OLQ-13). Adjusted regression models were developed, with different types of costs as dependent variables. Results: A sample of 147 caregivers was recruited. The mean OLQ-13 score was 73.3 points (SD = 11.6). The regression models showed a small association between caregivers' SOC and direct costs, mainly linked to the use of social care resources (r(2) = 0.429; beta = -15.6 D /month), and a greater association between SOC and indirect costs (r(2) = 0.562; beta = -222.3 D /month). Conclusion: Increasing caregivers' SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.

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Caregiver satisfaction with a video telehealth home safety evaluation for dementia

Family caregivers are vital to telehealth-delivered dementia care. The objective of this mixed methods descriptive study conducted in the VA Bedford Healthcare System was to examine caregiver satisfaction with a video telehealth dementia home safety occupational therapy evaluation. Ten caregivers of Veterans with dementia participated. Ratings of caregiver satisfaction, measured by nine Likert scale items including ability to see and hear, were examined in relation to person and visit-related contextual factors extracted from research assistants' field notes, to develop an in-depth understanding of caregiver experience. Person factors included caregiver age and gender and Veteran cognitive status. Visit-related contextual factors included occurrence of technical glitches. Caregiver visit satisfaction was overall positive, with exceptions related to technological glitches and the presence of the person with dementia during the visit. Veteran cognitive status appeared to influence caregiver satisfaction. Implications of the study are that proactively addressing technical glitches and incorporating dementia stage-specific approaches may optimize caregivers' telehealth experience.

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Care2Caregivers A Retrospective Examination of Needs Addressed and Services Provided by a Peer Support Helpline

Family caregivers of persons with Alzheimer's disease and related dementias (CADRD) provide significant support to their family members but often experience challenges and stress that impact their quality of life. Peer supporters can be an important resource to help alleviate stress associated with caregiving, yet few published studies have examined peer supporters for CADRD. This retrospective cohort study examined data collected from a peer support helpline for CADRD in a middle Atlantic state. Four years of data were reviewed to examine trends across time. Data analysis indicated that the most often reported issues by CADRD callers were related to their own emotional well-being. Results demonstrated that peer supporters have potential to address practical, physical, social, and emotional needs of caregivers who reach out. Nurses are well-positioned to partner with peer support specialists to best address the practical and emotional support needs and self-care challenges faced by CADRD.

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Association between Role Overload and Sleep Disturbance among Dementia Caregivers: The Impact of Social Support and Social Engagement

Objective: To explore the association between role overload (RO) and sleep maintenance insomnia (SMI), and the moderation effects of social support and social engagement (SE). Methods: We report a cross-sectional study using data drawn from the 2015 National Health and Aging Trends Study and National Study of Caregiving. We used multiple regression and controlled for demographics and potential confounders. Results: Nearly 45% of caregivers reported suffering from SMI during "some" and "more" nights within the past month with one half reporting "almost" or "every" night. RO was found positively associated with the risk of SMI. Instrumental support moderated the effect of RO on SMI overall, although moderation was limited to a subsample of adult children caregivers. Discussion: The sleep quality of dementia caregivers may be affected by RO, particularly for adult children caregivers. Increasing instrumental support may be beneficial to caregiver's sleep quality. 

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Assess the effectiveness of planned teaching on knowledge regarding early warning signs and management of Alzheimer's disease among care givers of elderly client

Background: More than four million people in India have some sort of Alzheimer's. This global estimate of 43.8 million people living with Alzheimer's in 2016 in the World Alzheimer's Study is close to an estimated 46 8 million in 2015. A study published on early detection and diagnosis of Alzheimer's by the Alzheimer's association. In the study, they concluded that education years among caregivers is a predictor of Alzheimer's experience. It appears that family members, especially those with lower levels of education, need to have more knowledge of Alzheimer's. Objectives: 1) To assess the existing knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 2) To evaluate the effectiveness of planned teaching on knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 3) To associate the knowledge scores with selected demographic variables. Methodology: The pre-test and post-test research design was used. Research approach was Interventional Evaluatory Approach and the sample for the study is general population. The Samples size is 50 will be obtained by using Non-Probability Convenient sampling technique. The setting of the study is selected area of Wardha. Expected Results: The result of the present study is intended to examine the improvement of the knowledge score early warning sign's and their management of Alzheimer's disease among elderly caregivers, hence it will also be evaluated by post-test.

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Alzheimer's disease and the challenges of nursing care towards elderly people and their family caregivers

Objective: This study meant to analyze the main challenges and the care provided by nursing teams during the process of caring for elderly people bearing Alzheimer's disease and their family caregivers. Methods: It is an integrative literature review that was performed through article searching in the Scientific Electronic Library Online (SciELO) and the Literatura Latino-americana e do Caribe em Ciencias da Saude (LILACS) [Latin-American and Caribbean Literature in Health Sciences]. There were obtained 783 studies, of which only 13 met the inclusion criteria. Results: Care strategies associated to Alzheimer-related forms of behavior were proposed, namely, forgetfulness, denial of bathing, and the acceptance of the disease by the family. The lack of training and knowledge by sonic nursing professionals was evidenced as a challenging element vis-a-vis the relationship with elderly, people and their family caregivers, Conclusion: It is important that public policies pursue to guarantee caring practices for elderly people bearing Alzheimer's disease, approaching the real needs experienced by such population, as well as family caregivers and health professionals.

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Access and Retention of Informal Dementia Caregivers in Psychosocial Interventions: A Cross-Sectional Study

Underutilization of community care services has been described for informal dementia caregivers. Most research has however examined caregivers' access to home or respite care rather than to services for themselves. The aims of this study are: to describe access and retention of informal dementia caregivers in psychosocial interventions; examine the perceived effects of interventions among users and motives for non-use among non-users; and compare caregivers with and without lifetime access and retention in psychosocial interventions across predisposing, enabling and need variables. A cross-sectional study was conducted with 179 Portuguese caregivers, who replied to a web-based survey. Participants were fairly distributed among those who have never (49.7%) and those who have ever accessed (50.3%) psychosocial interventions. Individual psychological support was the most used intervention (32.2%). Caregivers' age, time elapsed since diagnosis and the relationship with the care receiver were associated with lifetime access to various intervention types. Dropout was above 50% for most intervention types, except for psychoeducation (31.8%). Associations were found between a history of dropout/retention and caregivers' education, perceived mental health, and the number of hours spent caring. Most users of psychoeducational interventions (>80%) appraised it as beneficial to learn about the disease, provide quality care and cope with caregiving. Informational barriers were the most reported by non-users of psychoeducational interventions (45.1%). The findings show that dementia caregivers continue facing barriers to use and keep using community services for themselves. The influence of particular predisposing and need variables on access to psychosocial interventions can vary according to intervention types. 

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What do family caregivers of people with dementia need? A mixed‐method systematic review

Caring for people with dementia is a major challenge for relatives and society worldwide. Understanding the family caregivers' needs is crucial to promote their care‐giving role during the disease trajectory. The aim of this mixed‐method systematic review was to identify and synthetise the existing literature on the needs of family caregivers of people with dementia at home. PubMed, CINAHL, Cochrane Database of Systematic Reviews and PsycINFO databases were systematically explored to find quantitative, qualitative and mixed‐method studies published between 2009 and 2019. A total of 1,196 citations were retrieved and 34 studies were included in the review. The variety of interrelated needs emerged from studies has been summarised in four themes: (a) Being supported, (b) Receiving accessible and personalised information, (c) Being trained and educated to care for their beloved with dementia and (d) Finding a balance. Care‐giving for individuals with dementia is an ever‐changing process characterised by continuous adjustments to their needs. The majority of a family caregivers' needs are oriented towards receiving support, help in offering daily care and finding a balance between the care‐giving role and their own personal needs. For family caregivers, receiving information is a priority to improve their knowledge and to develop coping abilities, care skills and strategies aimed at promoting a balance between care assistance duties and their own needs. They also need social, psychological and emotional support and access to flexible, tailored and timely formal care. Further studies are recommended to detect changes in family caregivers' needs throughout the disease progression in order to tailor formal care offered by social and healthcare services. 

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Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice: Managing Community Care

Purpose Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community. Design/methodology/approach Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English. Findings The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation. Research limitations/implications There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants. Practical implications The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India. Originality/value This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

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The Trajectory of Caregiver Burden and Risk Factors in Dementia Progression: A Systematic Review

Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver. Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review. Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords. Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients' behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver's age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship. Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources. 

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TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone

Background: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Methods: This study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12). Results: Thirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, - 0.44 - 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention. Conclusions: The Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial. Trial Registration: Clinical Trials: NCT02806583 , June 9, 2016 (retrospectively registered).

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Symptoms of mood disorders in family carers of older people with dementia who experience caregiver burden: a network approach

Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. Results the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. Conclusions this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions. 

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Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions Findings have demonstrated the importance of planning and supporting carers’ holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.

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Supporting family carers via the Admiral Nurse Dementia Helpline: reflection on a case study

In the UK, the quality of post-diagnostic care and support for people with dementia and their family carers is variable and depends on the availability of services in each person's local area. This article considers the support services available for families affected by dementia and discusses how telephone helplines can assist those who may have no access to other types of support. It presents a case study describing a call to the Admiral Nurse Dementia Helpline, a service run by nurses with expertise in dementia care and provided by the charity Dementia UK. This is followed by a reflection on the call from the nurse's perspective. The case study-based reflection demonstrates the complexity of providing support through a helpline and the specialist knowledge and skills required to provide the appropriate level of support. 

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The Specialized Early Care for Alzheimer’s method of caring for people with dementia: an investigation of what works and how

Background and rationale SPECAL is a model of care for people with dementia based on a novel conceptualisation of memory and how this changes in dementia. Carers adapt their communication style to prevent distress and promote well‐being for the person with dementia. However, there is limited scientific evidence on the effectiveness of SPECAL. Aim This study explored mechanisms of SPECAL through a qualitative enquiry with family carers. Method Semi‐structured interviews were conducted with family carers who had been coached in SPECAL and applied its principles and practices. Thematic analysis was applied. Findings All participants had found SPECAL helpful in caring for a person with dementia. The core themes of this positive experience were empathy, harmony and resilience. Synthesis of these themes contributes to a proposed model of the mechanisms of SPECAL. Conclusion In applying SPECAL, carers gained an empathetic insight to the feelings of the person with dementia. This empathy leads to a more harmonious environment, which enhances the carer’s resilience.

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Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Objective: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). Methods: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. Results: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. Conclusions: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving. 

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A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study

Background: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being.; Objective: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations.; Methods: The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant.; Results: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform.; Conclusions: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population.; International Registered Report Identifier (irrid): RR2-10.2196/13280. 

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Silent voices: Transition experiences of family members caring for relatives with dementia

Worldwide 46.8 million persons are living with dementia and many are requiring assistance with performing daily living or instrumental functions. It is often the task of family members to provide care for their relatives with dementia. However, they are often the silent, unseen and unacknowledged figures in the lives of people living with dementia. In 2015, we used a phenomenological design utilising visual participatory methods in the form of collages and interviews to explore and describe the transition experiences of eight family members (seven females and one male) living in a South African city regarding how they became caregivers of their relatives with dementia. They often entered their caregiving roles unexpectedly, often not having much choice regarding whether or not to take on the caregiving role. Family members caring for relatives with dementia have unique support needs as they transition into the caregiving role.

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Service user and carer experiences of the advanced nurse practitioner role in a memory assessment team

Background: Advanced nurse practitioners (ANPs) within memory services can support prompt diagnoses of dementia. Further understanding of the role is necessary as evidence on its effectiveness is limited. Aim: To assess service user and carer satisfaction with the ANP role within Kirklees memory assessment team. Methods: A cross-sectional survey was undertaken to evaluate carer and patient perceptions of the ANP role in a local memory assessment team. The survey was developed using the Royal College of Nursing's four pillars as a structure: clinical/direct care practice, leadership and collaborative practice, improving quality and developing practice, and developing self and others. Results: One hundred and fifteen surveys were sent out, and 85 were completed, a response rate of 73.9%. Patients expressed significant satisfaction with the ANP, in particular in the areas of direct clinical practice (84%) and quality of care received (87%). Conclusion: Patients and families are highly satisfied with the service provided by the ANP. High-quality research is needed on the cost effectiveness and outcomes of ANP interventions. 

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Quality of the caregiving relationship and quality of life in mild Alzheimer's dementia

Background: The present study aims to investigate the quality of the dyadic relationship between mild Alzheimer patients and their caregivers. The main objective is to evaluate the consistency, agreement and validity of the German version of the Scale for Quality of the Current Relationship in Caregiving (SQCRC). The secondary objective was to examine the association of relationship quality with quality of life (QOL) in patients with mild Alzheimer's disease (AD) and their caregivers. Methods: In this study, a sample of 50 patients diagnosed with mild AD and their primary caregivers were included. Participants underwent a full neuropsychological evaluation. The quality of the relationship between persons with AD and their caregivers was assessed using the SQCRC. Furthermore, other scales of relationship quality, well‐being of the person with AD, and well‐being of the caregiver were used. Results: The results showed that the SQCRC has a good internal consistency and high validity. Also, relationship quality as rated by the AD patients (r = 0.37, P < 0.1) and their caregivers (r = 0.51, P < 0.1) was significantly correlated with QOL. Conclusions: The findings suggest that many persons with mild AD can rate their relationship quality and that the patient's self‐rated relationship quality is a substantial predictor of their QOL.

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Protocol for an embedded pragmatic clinical trial to test the effectiveness of Aliviado Dementia Care in improving quality of life for persons living with dementia and their informal caregivers

Persons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD. This protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies. This embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization. This study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population. Clinical Trials.gov: NCT03255967. 

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Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so. 

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Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer's disease

Background: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers. Methods: This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups. Results: There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ. Conclusions: Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers' mental health in order to provide them with necessary care and create appropriate support groups.

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Potential cost savings for selected non-pharmacological treatment strategies for patients with Alzheimer's disease in Finland

Objective: To compare the costs and monetary benefits of non-pharmacological interventions for patients with Alzheimer's disease in real-world settings. Methods: A systematic review was performed to determine the most effective treatment strategies for being able to stay at home for patients with Alzheimer's disease. Care-management, family support, and multidisciplinary rehabilitation were identified as effective interventions applicable in the Finnish healthcare setting. Data on medical and social service costs, and the costs of residential care for all patients newly diagnosed with Alzheimer's disease in 2 major cities in Finland were analysed in a 4-year follow-up study. The potential cost savings of the different treatment strategies were assessed. Results: The annual cost increased from (sic)9,481 to (sic)28,400 (mean per patient) during the 4-year follow-up. Cost savings were achieved in care-management, family support programmes, and rehabilitative cognitive and social activation if the patients' transition to long-term care was delayed by 2.8, 1.8 and 43.0 days, respectively. Conclusion: Care-management and informal caregiver support for patients with Alzheimer's disease may benefit patients and result in concurrent cost savings. Delaying the decline in cognitive and social functioning through rehabilitation is indicated for more severe phases of Alzheimer's disease, and the costs appear to be compensated by savings in the cost of long-term care.

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The Post-caregiving Health Model: A Theoretical Framework for Understanding the Health of Former Family Caregivers of Persons with Dementia

Presently, there is a dearth of theoretical models to guide research on the population of former dementia caregivers. The purpose of this article is to describe the development of the Post-caregiving Health Model and its potential for generating a more nuanced understanding of the health of family caregivers following the death of a care recipient with dementia. The model highlights the impact of personal and environmental characteristics, appraisal, coping, and emotion on long-term health outcomes in this population and offers a viable framework for studying long-term health outcomes among caregivers following the care recipient's death.

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Positive aspects of care in informal caregivers of community‐dwelling dementia patients

Aim: To examine the factorial structure of the Portuguese version of PAC scale and to analyse background and contextual factors that are more likely to be associated with higher levels of PAC. Method: The PAC scale, a sociodemographic questionnaire and measures assessing burden and physical and mental health were administered to 204 informal caregivers of dementia patients. Results: Exploratory factor analysis revealed a two‐factor structure; internal consistency was adequate. Higher scores were negatively correlated with caregiver burden and distress. Better health perception, care recipient's older age, providing care to more than one care recipient and overall self‐reliance were correlated with higher levels of PAC. Discussion: The PAC scale was found to be a reliable and valid measure. Dementia caregiving circumstances and caregivers' and care receivers' characteristics play an important role for the presence of PAC, but relate distinctively with its dimensions. Implications for Practice: Findings can help mental health nurses to recognize distinctive relations between PAC and caregiving variables. 

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Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study

There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings. 

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A Personalized Voice-Based Diet Assistant for Caregivers of Alzheimer Disease and Related Dementias: System Development and Validation

Background: The world's aging population is increasing, with an expected increase in the prevalence of Alzheimer disease and related dementias (ADRD). Proper nutrition and good eating behavior show promise for preventing and slowing the progression of ADRD and consequently improving patients with ADRD's health status and quality of life. Most ADRD care is provided by informal caregivers, so assisting caregivers to manage patients with ADRD's diet is important. Objective: This study aims to design, develop, and test an artificial intelligence-powered voice assistant to help informal caregivers manage the daily diet of patients with ADRD and learn food and nutrition-related knowledge. Methods: The voice assistant is being implemented in several steps: construction of a comprehensive knowledge base with ontologies that define ADRD diet care and user profiles, and is extended with external knowledge graphs; management of conversation between users and the voice assistant; personalized ADRD diet services provided through a semantics-based knowledge graph search and reasoning engine; and system evaluation in use cases with additional qualitative evaluations. Results: A prototype voice assistant was evaluated in the lab using various use cases. Preliminary qualitative test results demonstrate reasonable rates of dialogue success and recommendation correctness. Conclusions: The voice assistant provides a natural, interactive interface for users, and it does not require the user to have a technical background, which may facilitate senior caregivers' use in their daily care tasks. This study suggests the feasibility of using the intelligent voice assistant to help caregivers manage patients with ADRD's diet.

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The Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ‐DIC): development and initial validation

The article discusses research which described the process used to develop and evaluate the psychometric properties of Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ-IDC) designed to measure the needs of informal dementia caregivers. Topics covered include the identification of needs for which health-care professionals could provide support, the assessment of subjective caregiver burden, and the validity and reliability of the PNQ-IDC.

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Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study

Background: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited.; Objective: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them.; Methods: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire.; Results: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79%) and their carers (20/24, 83%) had low affinity to technology, and even after the demonstration, 63% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants.; Conclusions: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable.

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Outcomes of physical activity for people living with dementia: qualitative study to inform a Core Outcome Set

Background The need for a Core Outcome Set to evaluate physical activity interventions for people living with dementia, across stages of disease and intervention settings has been established. This qualitative study precedes the consensus phase of developing this Core Outcome Set and aims to: (i) compare the outcomes identified by patients, carers and professionals to those previously reported in the literature; (ii) and understand why certain outcomes are considered important. Design and methods In-depth semi-structured interviews were conducted with people living with dementia, family carers and professionals (n = 29). The outcomes identified in the interviews were mapped to a list of outcomes reported in a recent literature review. An in-depth thematic analysis was conducted to understand the importance of physical activity in dementia care. Results A comprehensive, inductively derived list of 77 outcomes, common across stages of dementia and intervention setting, was put together for the consensus phase of this Core Outcome Set: ten of these were new outcomes generated by this qualitative study. Five themes explained why stakeholders perceived physical activity outcomes as important for people living with dementia: "being well and staying well", "having a role towards others", "maintaining identity", "being connected to the present" and "delivering good quality care". Conclusion Ten new outcomes of physical activity, not previously reported in recent literature, were identified. Physical activity is considered important to people living with dementia due to its positive impact on multiple health outcomes for both patients and carers. 

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A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia

Background: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet. Current research lacks a conceptual framework for explaining variation in satisfaction of care needs. This work develops a conceptual framework mapped onto the care delivery process to explain variations in whether, when and why care needs of people with dementia are met and to expose individual-, service-, system-level factors that enable or hinder needs satisfaction. Methods: Data collected through 24 in-depth interviews and two focus groups (10 participants) with people with dementia and family carers living in the North East of England (UK) were analysed thematically to develop a typology of care needs. The need most frequently reported for people with dementia (i.e. for support to go out and about) was analysed using themes stemming from the conceptual framework which combined candidacy and discrepancy theories. Results: The operationalisation of the framework showed that satisfaction of the need to go out was first determined at the point of service access, affected by issues about navigation, adjudication, permeability, users' resistance to offers, users' appearance, and systems-level operating conditions, and, subsequently, at the point of service use, when factors related to service structure and care process determined (dis)satisfaction with service and, hence, further contributed to met or unmet need. Conclusion: The conceptual framework pinpoints causes of variations in satisfaction of care needs which can be addressed when designing interventions and service improvements. [

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Mastery and Longevity in Spousal Caregivers of Persons with Dementia

Objective Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia. Methods This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment. Results Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65). Conclusions Findings have implications for support programs that help build personal mastery. 

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Longitudinal study of medication use in caregivers of people with Alzheimer's disease – Kuopio ALSOVA study

Background: The longitudinal pattern of medication use among family caregivers of people with dementia is not well understood, despite the potential for medication over- or under-use. Objectives: To investigate caregiver medication use over a five-year follow-up using data obtained via self-report and from a national prescription register, and compare agreement between medication data obtained from the two sources. Methods: Medication data for 222 family caregivers of people with Alzheimer's disease were obtained via self-report and from the Finnish Social Insurance Institution. Generalised estimating equations, Kappa statistics and related samples Wilcoxon signed rank test were used to analyse medication use over time. Results: The mean number of medications used by caregivers increased from 3.4 to 4.1 (self-reported current regular medications) and 2.4 to 2.8 (reimbursed prescription medications during the past 90 days) over five years (p < 0.001). Significantly, more medications were identified via self-report (mean 3.6, SD = 3.3) than the national prescription register (mean 2.6, SD = 2.4, Z= –12.300, p < 0.001). Agreement between the two data sources was good for cardiovascular medications and anti-hypertensives (Kappa = 0.883–0.967, p < 0.001) and medications for acid-related disorders (Kappa = 0.508–0.092, p < 0.001). Agreement was moderate for analgesics (Kappa = 0.281–0.477, p < 0.001) and psychotropics (Kappa = 0.281–0.562, p < 0.002). The proportion of caregivers using five or more medications increased from 27.5% to 44.6% (self-report), and 16.7% to 27.7% (register) (p < 0.001). Conclusion: Caregivers use an increasing number of medications in the first five years of caring for persons with dementia, and self-report using a higher number of medications than data from the national prescription register suggest.

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The Longitudinal Effects of Caregiver Grief in Dementia and the Modifying Effects of Social Services: A Prospective Cohort Study

BACKGROUND Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well‐being of the PWD‐caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear. OBJECTIVES We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers). DESIGN AND SETTING A prospective cohort study with three time points of assessments (at 0, 6, and 12 months). PARTICIPANTS Family caregivers of community‐dwelling PWD (n = 178). MEASUREMENTS At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1–3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes. RESULTS: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P <.001) and poorer QoL (P <.001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P =.006 and P =.746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P =.010 and P =.110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief. CONCLUSION: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348–2353, 2020.

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Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers

This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens. This symposium also includes three commentaries by experts in the fields of bioethics and philosophy, justice in healthcare, family caregiving, and end of life choices. These narratives provide a forum for exploring caregiver needs, suffering, benefits, and joys, as well as opportunities to improve the way we support caregivers and people with dementia and Alzheimer disease. 

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Leisure activity, gender and depressive symptoms among dementia caregivers: findings from the REACH II

Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus, this study examined the relationship among leisure activity, gender and depressive symptoms. Method: A cutoff score (≥10) on the short form of the Center for Epidemiological Studies Depression Scale was used to measure presence of depressive symptoms. Independent variables were frequency of engagement in and satisfaction with leisure activities. Results: Logistic regression analyses from 632 dementia caregivers in the Resources for Enhancing Alzheimer's Caregiver Health II Study showed that more frequent and higher satisfaction in leisure engagement were negatively related to having depressive symptoms. Moreover, the negative association between frequent leisure engagement and depressive symptoms was more pronounced among male caregivers. Conclusion: Providing respite care for dementia caregivers to engage in leisure can be a promising coping strategy for this population. Also, gender difference in leisure-depressive symptoms relationship suggests different support needed for male and female caregivers in addition to leisure. 

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The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.

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Job Demands and the Effects on Quality of Life of Employed Family Caregivers of Older Adults With Dementia: A Cross-Sectional Study

Background: Employed family caregivers are affected by job demands, which can affect quality of care provided to recipients. However, it is important to understand how job demands and the ability to reconcile employment and caregiving influence family caregivers' quality of life. Purpose: The aim of this study was to examine the extent to which job demands influenced quality of life for employed family caregivers of older adults with dementia in Taiwan. Methods: This cross-sectional study analyzed secondary data from self-completed questionnaires collected from December 2010 to December 2011. Participants were 214 employed family caregivers of older adults with dementia in Taiwan. How job demands and caregiving influence quality of life was determined with hierarchical multiple regression analysis. Job demands included working hours, workplace inflexibility, work inefficiency, and difficulty in reconciling work and family caregiving. Results: After controlling for demographics, caregiving resources, and caregiving role demands, employed family caregivers of older adults with dementia with fewer working hours and greater work efficiency reported significantly better quality of life (β = −.130, p =.049; β = −.263, p <.001) than those with more working hours and less work efficiency. Conclusions/Implications for Practice: Employed family caregivers of older adults with dementia who had more working hours and less work efficiency had a greater likelihood of poorer quality of life than other employed family caregivers. Clinicians could use these findings to identify groups at high risk for poor quality of life. We suggest developing policies and interventions to help employed family caregivers of older adults with dementia to reduce working hours and improve work efficiency in order to improve quality of life, which could also improve quality of care for recipients.

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"It's Feasible to Write a Song": A Feasibility Study Examining Group Therapeutic Songwriting for People Living With Dementia and Their Family Caregivers

Background: Psychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection. No previous music therapy research has examined the effects of group therapeutic songwriting (TSW) attended by people with dementia/family caregiver dyads.; Methods: This pre-post feasibility study aimed to examine the acceptability of a group TSW intervention for people with dementia/family caregiver dyads and test the sensitivity of the following outcomes: Quality of the Caregiver-Patient Relationship (QCPR, primary); Cornell Scale for Depression in Dementia (CSDD) and Quality of Life-Alzheimer's Dementia for people with dementia, Patient Health Questionnaire-9, Assessment of Quality of Life-8 Dimensions (AQoL-8D); and Zarit Burden Interview for family caregivers. Six weekly 1 h sessions guided participants to identify preferred music, brainstorm ideas, create lyrics, and record songs. Qualitative interviews were conducted with dyads who completed the intervention.; Results: Fourteen dyads were recruited and completed baseline assessments. Participants with dementia were aged 62-92 years ( M = 77, SD = 11). Caregiver participants (11 spouses, two daughters, one son) were aged 54-92 years ( M = 67, SD = 10.1). Four dyads withdrew owing to declining health or inconvenience before the program commenced ( n = 2) and after attending 1-2 sessions ( n = 2). Ten dyads formed four homogeneous TSW groups (71% completion). No statistically significant changes were detected for any measure. High QCPR ratings at baseline ( M = 57.1) and follow-up ( M = 57.4) demonstrated sustained relationship quality. For participants with dementia, large effect sizes for the CSDD suggested trends toward decreased depression ( d = -0.83) and improved mood ( d = -0.88). For family caregivers, a large effect size suggested a trend toward improvement for the AQoL-8D sub-domain examining independent living ( d = -0.93). Qualitative data indicated that session design and delivery were acceptable, and TSW was a positive shared experience with personal benefits, which supported rather than changed relationship quality.; Conclusion: High retention and qualitative data indicate that TSW was well received by participants. Effect sizes suggest that group TSW for dyads may have beneficial impacts on depression for people with dementia and quality of life for family caregivers. Future research with a fully powered sample is recommended to further examine the psychosocial impacts of group TSW for people living with dementia/family caregiver dyads. (Copyright © 2020 Clark, Stretton-Smith, Baker, Lee and Tamplin.)

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Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

Objectives: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers. Design: Cross-sectional. Setting: Caregivers of people with dementia living at home or in a care home. Participants: In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%). Measurements: Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales ("personal sacrifice burden"; "heartfelt sadness"; "worry and felt isolation"). Results: Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower "heartfelt sadness." Conclusion: We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers' social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

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Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=-0.21; 95% CI -0.31 to -0.10; P<.001), perceived stress (SMD=-0.40; 95% CI -0.55 to -0.24; P<.001), anxiety (SMD=-0.33; 95% CI -0.51 to -0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434.

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An international systematic review of dementia caregiving interventions for Chinese families

Objectives: Older Asians and Chinese are among the least studied populations in the dementia caregiving literature. This review seeks to critically synthesize the literature on intervention characteristics, components and tailoring strategies for dementia family caregivers in Chinese communities globally. Methods: Five electronic databases (PsychINFO, PubMed, CINAHL, ScienceDirect and Google Scholar) were searched for articles published between 1980 and July 2018. The protocol of this review was registered with PROSPERO (CRD42019132800). Results: Twenty‐nine unique interventions across 39 papers met inclusion criteria. Results from descriptive and thematic syntheses revealed that most interventions were psychoeducational, CBT‐based, multicomponent, structured, and less than a year in duration. Disease education, management of behavioral and psychological symptoms of dementia, stress coping techniques, and referral to community resources were frequently included in interventions. Community‐, culture‐ and language‐focused strategies were used to tailor interventions. The most common tailoring strategies were: (a) using community networks and media for outreach and recruitment; (b) making translations and language adaptations to the intervention materials; and (c) focusing on trust and therapeutic alliance. Most interventions produced desired outcomes, particularly reducing caregiver burden and increasing self‐efficacy. Conclusions: To our knowledge, this is the first review to date that systematically synthesized the characteristics and tailoring of dementia caregiving interventions for Chinese families globally. Current findings suggest that most interventions are effective, although many only superficially address Chinese culture. Future research should incorporate Chinese values and cross‐cultural challenges into caregiving interventions for deep‐level adaptations that could potentially be more effective to engage and support Chinese caregivers.

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An integrative group movement program for people with dementia and care partners together (Paired PLIÉ): initial process evaluation

Objectives: To understand feedback from participants in Paired PLIÉ (Preventing Loss of Independence through Exercise), a novel, integrative group movement program for people with dementia and their care partners, in order to refine the intervention and study procedures. Method: Data sources included daily logs from the first Paired PLIÉ RCT group, final reflections from the second Paired PLIÉ RCT group, and responses to requests for feedback and letters of support from Paired PLIÉ community class participants. All data are reports from care partners. The qualitative coding process was iterative and conducted with a multidisciplinary team. The coding team began with a previously established framework that was modified and expanded to reflect emerging themes. Regular team meetings were held to confirm validity and to reach consensus around the coding system as it was developed and applied. Reliability was checked by having a second team member apply the coding system to a subset of the data. Results: Key themes that emerged included care partner-reported improvements in physical functioning, cognitive functioning, social/emotional functioning, and relationship quality that were attributed to participation in Paired PLIÉ. Opportunities to improve the intervention and reduce study burden were identified. Care partners who transitioned to the community class after participating in the Paired PLIÉ study reported ongoing benefits. Conclusion: These qualitative results show that people with dementia and their care partners can participate in and benefit from community-based programs like Paired PLIÉ that include both partners, and focus on building skills to maintain function and quality of life. 

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Informal dementia caregivers' experiences and perceptions about mealtime care: A qualitative evidence synthesis

Aims: To systematically identify, evaluate and synthesize the available qualitative evidence on the mealtime care experiences of informal caregivers of people with dementia.; Design: A qualitative evidence synthesis using the Thomas and Harden method.; Data Sources: All qualitative and mixed-method studies in English and Chinese were retrieved from PubMed, Web of Science, Embase, Cochrane, CINAHL, CNKI, WanFang, and Vip from the inception of each database until November 2019.; Review Methods: Two researchers independently selected the studies using qualitative assessment and review instruments for quality evaluation and thematic synthesis for the data analysis.; Results: Ten studies were chosen for this review. The analytical themes identified included injecting a new element, moving forward in the challenge and external supports facilitating better coping.; Conclusion: Community nurses should effectively use resources to provide food-related information and services to families with dementia. Future research should combine informal caregiver experiences and clinical skills to develop high-quality interventions to improve the quality of mealtimes.; Impact: The findings established that informal caregivers experienced not only changes in their roles and concerns but also emotional changes. Informal caregivers develop different coping strategies to adapt to feeding issues without professional support. Although informal caregivers attach great importance to mealtimes and nutrition issues, they experience a lack of information and support services. Community nurses can provide more economical, practical, and accessible information resources based on informal caregivers' perceptions of mealtime care. Future interventions need to be more aware of the importance of dyad or family-centred support services. 

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Informal Caregivers' Roles in Dementia: The Impact on Their Quality of Life

The constantly changing process of caring for a person with dementia affects the informal caregivers' role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver's role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers' quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients' cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer's Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers' outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers ( p < 0.001). Caregiver burden ( p < 0.001), psychological wellbeing ( p < 0.001) and negative aspects of caregiving on health ( p < 0.001) correlated moderately with informal caregivers' quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver's role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.

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Informal and formal care among persons with dementia immediately before nursing home admission

Background: Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network. Methods: In this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients' files. Results: A total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver's working situation. Good/excellent general health was associated with less formal care. Conclusion: Persons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.

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"In the flesh": Narratives of family caregivers at risk of Early-onset Familial Alzheimer's Disease

In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer's Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer's Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer's Disease permeates the caregivers' experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer's Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.

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Impact of Dementia-Related Psychosis on Patients and Caregivers: The Treatment Imperative

​​​​​​​ Behavioral and psychological symptoms are common in patients with dementia. Especially troublesome are the delusions and hallucinations of dementia-related psychosis (DRP) due to their negative impact on both patients and their carers and family members. This report reviews the impact of DRP on patients and carers, assessment tools, and coping strategies and techniques to help care partners manage DRP. 

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The impact of assistive technology on burden and psychological well-being in informal caregivers of people with dementia (ATTILA Study)

Introduction: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being.; Methods: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed.; Results: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found.; Discussion: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months. 

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Identity, relationship quality, and subjective burden in caregivers of persons with dementia

The aim of the current study was to examine the associations between informal caregivers' perception of identity change in their care-partner, the quality of the caregiver/care-recipient relationship, and caregiver burden in a sample of 56 informal caregivers of persons with dementia. Most (96.4%) of the caregivers of persons who received a dementia diagnosis reported a perceived change in the identity of their care-partner. Caregivers' perception of relationship satisfaction was measured with the Burns Relationship Satisfaction Scale for premorbid relationship and current relationship quality, and caregiver burden was measured with the Zarit Burden scale. After controlling for variance due to dementia severity, premorbid relationship satisfaction, and current relationship satisfaction, caregivers' perceived change in the identity of the person with dementia accounted for significant variance in caregiver burden. Using a mediational model, we found support for a direct effect between perceived change in identity and caregiver burden, but we also found support for an indirect effect of relationship quality on the relation between perceived identity change and caregiver burden. The demonstrated model provides an empirically supported theoretical framework for guiding potential research and development of future interventions, which we suggest should emphasize dyads.

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"I needed someone to hold my hand": Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)

Objectives: • Describe 1-2 examples of experiences living and receiving care at home from the perspective of people with dementia and/or family caregivers • Describe 1-2 examples of unmet palliative care needs from the perspective of people with dementia and/or family caregivers receiving or providing care at home.  Importance: People with dementia (PWD) and their families represent a growing population who is increasingly accessing palliative care in the United States. Home-based palliative care interventions should incorporate the perspective of PWD and caregivers regarding experiences and unmet needs.  Objective(s): To characterize care needs and experience with palliative services at home among PWD and family caregivers.  Method(s) We recruited participants who received care at a tertiary behavioral neurology clinic for semi-structured interviews. Sampling targeted PWD in mild-to-moderate stages and family caregivers, both active and bereaved. Interviews explored palliative care needs and services for dementia care at home, based on domains of the 2018 National Consensus Project. Data were analyzed by an interdisciplinary team using the constant comparative method.  Results: Of 45 participants, 9 had dementia, 16 were active caregivers, 20 were bereaved caregivers; 57% had experience with Alzheimer’s disease, the remainder had less common syndromes like frontotemporal dementia. Every participant described multiple challenges and unmet palliative care needs while receiving or providing care at home. Challenges included changing relationship dynamics, uncertainty about the future, lack of knowledge of resources available, caregiver stress and burnout, isolation, cost and quality of paid caregivers. Unmet needs included anticipatory guidance, advance care planning, psychosocial support, symptom management, social connection, and the provision and coordination of services. PWD articulated fewer challenges and needs than caregivers. Many participants engaged hospice at some point. Positive experiences included receipt of guidance, emotional support, direct services; negative included one more care transition, insufficient time to build trust, or being discharged alive. Experience with specialty palliative care was rare and positive except when experienced as a step-down from hospice. When we presented a definition of palliative care, adapted from CAPC, nearly all said it sounded appealing and useful.  Conclusion(s) Stakeholders indicated multiple opportunities for palliative care approaches to address dementia challenges.  Impact: We will use this data to inform development of basic and specialty palliative care interventions for dementia.

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How do we know what we don't know? Exploring Deaf people's experiences of supporting their Deaf family member living with dementia

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

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How Can the Arts Influence the Attitudes of Dementia Caregivers? A Mixed-Methods Longitudinal Investigation

Background and Objectives Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program "Dementia and Imagination" on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care. Research Design and Methods One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers' attitudes and perceptions of the impact of the arts program were collected through interviews at three time points. Results Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities , (2) Social connectedness , (3) Improvements to well-being , and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program , and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers' attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points. Discussion and Implications Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education. 

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Health-care use and cost for multimorbid persons with dementia in the National Health and Aging Trends Study

Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.

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Health literacy for caregivers of elders with alzheimer's disease

Objective: To identify the level of health literacy in informal caregivers of elders with Alzheimer's disease.; Methods: Descriptive study with a quantitative and qualitative approach, with health literacy as a theoretical framework. Research carried out with 42 informal caregivers of elders with Alzheimer's from a geriatrics outpatient clinic, using a questionnaire with sociodemographic data and the Health Literacy instrument.; Results: The functional and conceptual levels were more prevalent, with regards to elders with Alzheimer's, than the empowering level. Caregivers searched, evaluated, and used health information and expressed abilities to use and judge the information received.; Final Considerations: The predominance of categories in the cognitive level of learning indicates the need to strengthen the empowering level of these caregivers. Health literacy made it possible to reveal the demands of informal caregivers of elders with Alzheimer's, evaluating their individual ability to offer this type of assistance. It is also a tool capable of reaching better health results.

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Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment-SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures.

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The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study

Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management.; Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach.; Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status.; Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants.; Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. 

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Fatigue in Family Caregivers of Individuals With Dementia: Associations of Sleep, Depression, and Care Recipients' Functionality

The current study examined factors related to fatigue in family caregivers of individuals with dementia using a cross-sectional design to collect subjective and objective data. Findings indicated that caregivers' sleep quality, difficulty falling asleep, and depression, as well as care-recipients' functionality, were associated with family caregivers' fatigue. Regression analysis indicated that only sleep quality significantly predicted caregivers' fatigue. Study findings suggest fatigue is common among family caregivers of individuals with dementia and may be related to sleep quality. The level of fatigue identified in the current study warrants further study with larger and more diverse samples. 

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Family Relationships and Alzheimer's Disease: A Systematic Review

Background: Family caregivers of people with Alzheimer's disease are the most important support in concrete personal and economic terms. Family dynamics play a fundamental role in the provision of informal caregiving benefits. Objective: This review aims to identify factors related to the family caregiving of relatives with Alzheimer's disease, taking specifically into account the construct of coping and expressed emotion. Methods: This is a systematic review including articles selected using search terms including "caregivers," "Alzheimer's," "family," and "relationship" in research databases. Findings were synthesized and categorized into themes. Results: A total of 454 abstracts were identified. Following screening, lateral searches, and quality appraisal, 36 studies were included for synthesis. A total of 5 themes were identified: burden; demographics; coping strategies; caregiver mental health; and family dynamics and expressed emotions. Conclusion: The quality and level of evidence supporting each theme varied. We need further research into family dynamics ameliorating the caregiving and how to measure it. 

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Family carers' perspectives of the Alzheimer Café in Ireland

Background: The Alzheimer Café is a psychosocial intervention shown to have benefits for family carers of people with dementia. Family carers experience a period of change across all aspects of their lives following the dementia diagnosis, and require new skills and tools to navigate these new landscapes. The objective of this research was to investigate family carers' perspectives of the Alzheimer Café in Ireland, and explore how attendance may translate into broader benefits in their lives. This paper also provides an overview of Alzheimer Café models, which exist internationally. Methods: Semi-structured interviews were conducted with nine family carers of people with dementia who were currently attending or had attended an Alzheimer Café in the preceding six months. The research was conducted in three Alzheimer Cafés in Ireland. Data analysis was conducted using Braun and Clarke's six step thematic analysis framework. Results: Community, atmosphere, activity and information were described as core features of the Alzheimer Café in Ireland. The Alzheimer Café was described as a community with a good atmosphere encompassing emotional support, friendship, equality and inclusion. Family carer also highlighted Alzheimer Cafés could potentially facilitate wider community awareness and engagement. The Alzheimer Café was shown to provide an activity which facilitated relationship building within care dyads as well as with other attendees. Several information streams were identified, including guest speaker input, attendees' shared experiences, and specific advice from healthcare professionals. Conclusion: The Alzheimer Café offers strong personal support to family carers of people with dementia. Our findings suggest that Alzheimer Cafés can build family carers' capacity to manage new social, environmental and cultural challenges associated with dementia. While it is important the Alzheimer Café is enjoyable, has useful information and is supportive, it is equally important that these features generate sustained improvements for family carers external to the Alzheimer Café. 

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Family carers' involvement strategies in response to sub-optimal health services to older adults living with dementia - a qualitative study

Background: While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods: Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology. Results: Two main involvement strategies were identified: 1) being "the hub in the wheel" and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers' weighing conflicting concerns and perceived costs and benefits. Conclusions: Awareness and acknowledgment of family carers' strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers' own perspectives on carer involvement is a necessary precursor to developing good care partnerships.

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Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States. PARTICIPANTS A total of 1,868 NHATS decedents. MEASUREMENTS Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self‐reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0–4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. 

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Family caregivers' involvement in decision-making processes regarding admission of persons with dementia to nursing homes

The current Western health policy of ageing in place relies on a triad collaboration among patients, healthcare service providers and family caregivers. Such collaborations presuppose involvement in a vague juridical landscape. This article explores family caregivers' experiences with involvement in and influence on nursing home decision-making processes for persons with dementia. The data consist of 12 in-depth interviews with family caregivers. Using positioning theory, we demonstrate how family caregivers strive to balance their assumed duty to care for the person with their needs to care for themselves. Their involvement (or non-involvement) in the complex decision-making process is demonstrated through the following seven positions: (1) self-condemning determiner, (2) dominant, (3) proponent, (4) saluting, (5) pending, (6) prisoner, and (7) stooge. Furthermore, we discuss why expedient positions are more available for some individuals and the consequences of family caregivers' various positions on the healthcare policy aims of collaboration and equal healthcare services.

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FAMILIES: an effective healthcare intervention for caregivers of community dwelling people living with dementia

Objectives: Caregiving for a person with dementia (PWD) carries increased risk of poorer health and quality of life. Non-pharmacological interventions improve outcomes for caregivers of PWDs. We evaluated the efficacy of a modified New York University Caregiver Intervention (NYUCI), named FAMILIES, delivered to spousal and non-spousal caregivers of PWDs from diverse etiologies in a reduced number of sessions. Methods: Participants were 122 primary caregivers for community dwelling PWDs in Virginia. The intervention included two individual and four family/group counseling sessions that integrated dementia education, coping skills and behavioral management training, emotional support, and identification of family and community resources. Assessment of depression, caregiver well-being and burden, and caregiver reactions to the behavioral symptoms of dementia (BSD) were completed at baseline, the sixth session, and 6-month follow-up. Results: Symptoms of depression (p <.001) and caregiver burden (p =.001) and caregivers' capacity to effectively manage their reactions to BSD (p =.003), significantly improved at the sixth session. Benefits were maintained at 6-month follow-up. Being married and female predicted improvement in caregiver burden; being male and living in a rural area predicted reduced risk of depression. Caregivers reported that the intervention was helpful and had a positive impact on the PWD. Conclusions: Modifications to the NYUCI did not diminish its efficacy. Caregivers in FAMILIES experienced improvements in depressive symptoms, caregiver burden, and their ability to effectively manage their reactions to BSD. Systemic support for implementing FAMILIES could have a broad impact on caregivers, PWDs, and the healthcare system. 

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Factors influencing the transition experience of carers for persons with dementia, when the person with dementia moves into residential care: systematic review and meta-synthesis

Aims: To understand factors influencing the experience of carers for people with dementia, when that person moves from living in the community to living in residential care. Specifically, we aimed to identify facilitators and inhibitors of carer adjustment during this transition. Method: A systematic search of CINAHL, EMBASE, PubMed, and PsycINFO databases was conducted. Nine qualitative articles published between 2001 and 2017, based on the experiences of 141 carers, were included. Thematic analysis was applied to the data, with the concepts of transition inhibitors and facilitators being used to structure the analytic process. Results: Analysis produced five themes, representing factors that could affect carer experiences of the focal transition-process: modifying the difficulty of this process according to their presence or absence. The themes were (1) Connection, pertaining to the carer feeling connected to the person with dementia and professionals during this transition; (2) Informed & Informing, relating to exchange of information between the carer and facility staff or health professionals; (3) The facility: welcoming & skilful, dealing with carer perceptions of the facility and their confidence in the staff; (4) It's What You Make of It, discussing the meaning the carer made of the admission and the impact this had; and (5) Sharing Responsibility, addressing how carers were affected by the perceived sharing of responsibility for care-provision. Conclusions: A supportive network has a significant role to play in facilitating this transition for carers. However, further research into what carers would find useful during this time is needed.

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Factors associated with health‐related quality of life among family caregivers of people with Alzheimer's disease

Aim: Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimerʼs disease (AD) is provided by family caregivers. Caregivers suffer a long‐term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health‐related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors. Methods: This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL‐BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face‐to‐face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis. Results: The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05). Conclusion: Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.

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Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway

Background: Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross-sectional survey was administered to family caregivers (n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services (R 2 = 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses. Results: The use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time. Conclusions: These results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

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Exploring the Relationship between the Caregiver's Stress Load and Dementia Patient Behavior: A Case Study of Dementia Specialist Outpatient Data from the Southern Medical Center of Taiwan

The aim of this study was to explore the relationship between caregivers' stress loads and dementia patient behavior, including the correlation of "patient behavior" (severity and frequency), "social care system", and "stress levels of caregivers". The research method was based on the analysis of survey data collected at a dementia specialist outpatient clinic of a medical center in southern Taiwan from November 2013 to May 2015. Those surveyed by the center included patients who visited the hospital, and their caregivers completed a questionnaire survey. During the study period, a total of 558 questionnaires for 279 pairs were distributed, and all questionnaires were recovered. According to the survey statistics, the average age of the caregivers interviewed was 53.1 years; women accounted for 61.3% of respondents, and the duration of care exceeded three years. In terms of education, most respondents were college/university graduates. The most common surveyed relationship was that of children acting as the caregiver to a parent, and the average age of the patients was 77.73 years. Most caregivers were found to live with the patients (75.3%). In terms of severity and frequency, the surveyed items with the highest average scores were both the "delusion" item of the "patient behavior" facet, the "mental support"(mean = 1.97; standard deviation, SD = 0.869) item of the "social care system" facet, and the "social life stress" (mean = 2.26, SD = 1.510) item of the "Stress levels of caregivers" facet. The research results show that the "patient behavior" and "Stress levels of caregivers" facets have a significant positive correlation, and the "social care system" and "Stress levels of caregivers" facets have a significant negative correlation. In the future, priority of service planning and implementation of long-term policy should be given to home care, since this is a cultural characteristic of Taiwan. In circumstances where a primary caregiver takes care of family members, the patient's behavior, length of care, mental support, and social life issues are key items that should be considered in the social welfare control service to alleviate the load of dementia patients on family caregivers.

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Exploring stress, coping, and decision-making considerations of Alzheimer's family caregivers

More than 15 million Americans are providing care for a family member with Alzheimer's disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers' types of stress, coping skills, and their decision-making efforts. Constructs of life event stress, role strain, self-concept stress, and coping stress were examined relative to 10 priority areas of decision-making identified by the national Alzheimer's Association. A relational non-experimental research design was utilized. Caregivers completed four Likert-scale instruments with data analyzed using descriptive statistics and rank-order correlation procedures. Findings indicated varying levels of stress, strong family self-efficacy and high levels of coping skills contribute to critical decision-making.

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Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia

Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed. 

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Emotion Recognition and Reactivity in Persons With Neurodegenerative Disease Are Differentially Associated With Caregiver Health

Background and Objectives Motivated by the high rates of health problems found among caregivers of persons with neurodegenerative disease, we examined associations between deficits in two aspects of care recipients' socioemotional functioning and their caregivers' health. Research Design and Methods In 2 studies with independent samples (N = 171 and 73 dyads), caregivers reported on care recipients' emotion recognition and emotional reactivity. Caregiver health was assessed using both self-report measures (Studies 1 and 2) and autonomic nervous system indices (Study 2). Results Lower emotion recognition in care recipients was linearly associated with worse self-reported health, faster resting heart rate, and greater physiological reactivity to an acoustic startle stimulus in caregivers. These effects held after accounting for a variety of risk factors for poor caregiver health, including care recipients' neuropsychiatric symptoms. Emotional reactivity showed a quadratic association with health, such that the lowest and highest levels of emotional reactivity in care recipients were associated with lower self-reported health in caregivers. Discussion and Implications Results shed light on the unique associations between two aspects of care recipients' emotional functioning and caregivers' health. Findings suggest potential ways to identify and help caregivers at heightened risk for adverse health outcomes. 

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Effects of strength‐based intervention on health outcomes of family caregivers of persons with dementia: A study protocol

Aims: This study aims at identifying the health effects of a strength‐based intervention on family caregivers of persons with dementia and to explore the underlying mechanism. The perception of family caregivers on the strength‐based intervention will also be explored. Design: This sequential mixed‐method study comprises a double‐blind randomized controlled trial and a descriptive qualitative study. Methods: A group of 372 family caregivers of persons with dementia will be recruited from community settings. They will be randomized to receive the strength‐based intervention or a dementia education program. Based on Antonovksy's theory of salutogenesis, the strength‐based intervention integrates skills of narrative therapy and empowerment strategies. It comprises 14 weekly group‐based sessions and two bi‐weekly follow‐up telephone calls. The education program serves as the control intervention. Validated instruments are used to measure sense of coherence, coping, caregiver burden, and health‐related quality of life at baseline, 14 weeks, and 22 weeks. Mixed‐effects models and path analysis will be used to identify the treatment effect and the mediating mechanism. A subsample of 30 caregivers who report differential changes in the health outcome will be engaged in qualitative interviews. The study was funded in 2017. Discussion: This study marks the first attempt to adopt a theory‐driven strength‐based approach to improve the health outcomes of family caregivers of persons with dementia. The stringent and comprehensive evaluation will inform its effects and the underlying mechanism. Impact: This study will have important theoretical and public health implications. Theoretically, the study will enhance understanding of Antonovsky's theory of salutogenesis by examining the modifiability of sense of coherence and the way it enhances health‐related outcomes. In terms of public health implications, the strength‐based intervention focusing on optimizing the inner strength can provide a new paradigm to promote the adjustment of family caregivers of persons with dementia. Trial Registration: This project was registered in the Clinical Trials Registry of the Centre for Clinical Research and Biostatistics (registration number: CUHK_CCRB00551; date registered: 6 April 2017).

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Effects of Psychosocial Interventions and Caregiving Stress on Cardiovascular Biomarkers in Family Dementia Caregivers: The UCSD Pleasant Events Program (PEP) Randomized Controlled Trial

Background: This study examined whether biological mechanisms linking dementia caregiving with an increased risk of coronary heart disease can be modified by psychosocial interventions and which caregivers might benefit the most from an intervention. Methods: Spousal dementia caregivers were randomized to 12-week treatment with either a behavioral activation intervention (ie, Pleasant Events Program [PEP]; n = 60), or an active control Information and Support (IS; n = 63) condition. Indicators of caregiving stress were assessed pretreatment and circulating cardiovascular biomarkers were measured pre- and posttreatment. Results: There were no significant changes in biomarker levels from pre- to posttreatment both by treatment condition and across all caregivers. Regardless of the treatment condition, exploratory regression analysis revealed that caregivers were more likely to show significant decreases in C-reactive protein (CRP) and D-dimer when their spouse had severe functional impairment; in interleukin (IL)-6 and CRP when they had greater distress due to care recipient's problem behaviors; in tumor necrosis factor (TNF)-α when they had higher levels of negative affect; and in IL-6, CRP, TNF-α, and D-dimer when they had higher personal mastery. Within the PEP group, caregivers with higher negative affect and those with higher positive affect were more likely to show a reduction in von Willebrand factor and D-dimer, respectively. Within the IS group, caregivers whose spouse had severe functional impairment were more likely to show a decrease in IL-6. Conclusions: Unlike the average caregiver, caregivers high in burden/distress and resources might benefit from psychosocial interventions to improve cardiovascular risk, although these observations need confirmation. 

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Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial

Objective: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL.; Methods: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options.; Results: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05).; Conclusion: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term.; Practice Implications: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds. 

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Effects of a Video-based Intervention on Caregiver Confidence for Managing Dementia Care Challenges: Findings from the FamTechCare Clinical Trial

The Supporting Family Caregivers with Technology trial tested the FamTechCare video support intervention against telephone support. Dementia caregivers' video-recorded challenging care encounters and an interdisciplinary team provided tailored feedback. This paper reports on the effects of the intervention on caregiver confidence in managing priority challenges, a secondary outcome of this non-blinded parallel randomized controlled trial. Caregiver/person living with dementia dyads were randomized to the experimental FamTechCare video support (n = 43) or attention control telephone support (n = 41) groups. Caregivers providing in-home care to a person living with mild or more severe dementia were eligible. Caregivers identified three priority challenges using the Caregiver Target Problems Questionnaire and rated the frequency and severity of each challenge and their confidence managing the challenge at baseline and 3-months. Challenges were classified using the FamTechCare Technology-supported Dementia Care Typology. Effects on confidence were compared between groups using the Wilcoxon rank-sum test and within groups using the Wilcoxon signed-rank test. Caregiver priority challenges included managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Improvements were observed across the three categories in both groups; however, not all changes were statistically significant. No significant differences were identified between groups. Caregivers in the FamTechCare group reported benefit across all priority challenges including managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Innovative technology provides new opportunities to support family caregivers in dementia home care. Video-recording can be used to enhance support for family caregivers facing care challenges.

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Effectiveness of Powerful Tools for Caregivers on Caregiver Burden and on Care Recipient Behavioral and Psychological Symptoms of Dementia: A Randomized Controlled Trial

The aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia. A pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention. PTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress. Two stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida. Primary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44). Intent-to-treat analyses found PTC reduced caregiver burden (d = −0.48) and depressive symptoms (d = −0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes. Although no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community. 

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The effect of a purpose-built memory support unit on the transition to high level dementia care; Perspectives of multiple participants

Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.

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The effect of a comprehensive mobile application program (CMAP) for family caregivers of home‐dwelling patients with dementia: A preliminary research

Aim: The purpose of this study was to evaluate the effect of a comprehensive mobile application program in managing behavior and psychological symptoms of home‐dwelling patients with dementia in South Korea. Methods: A nonequivalent control group pretest‐posttest design was conducted. A total of 26 family caregivers participated in this study. The application program consists of understanding of dementia, interventions, communication skills, coping methods, and bulletin boards. Data collection was performed from July 9, 2018, to October 4, 2018. Family caregivers' fatigue, sleep, and burden and patients with behavioral and psychological symptoms of dementia were measured. For data analysis, descriptive statistics, independent t tests, Mann–Whitney U test, repeated measures analysis of variance, and Friedman test were used. Results: The application program offered environmental management in an intervention using communication skills and coping methods, depending on the behavioral and psychological symptom type. The results showed significant differences between the two groups in family caregivers' fatigue (F = 11.24, p =.003) and burden (χ2 = 10.55, p =.005). Conclusion: The findings showed the application program improved family caregivers' fatigue and burden. It also suggested there is a need to develop a wandering persons location program to improve family caregivers' stress and patients' behavioral problems in future studies.

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Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

Aim: Early‐onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health‐related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late‐onset dementia (LOD). This information is critical in allocating and prioritizing scarce health‐care resources. We aimed to assess the HRQOL of primary informal caregivers of community‐dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD. Methods: This was a cross‐sectional study of consecutive patient–caregiver dyads from a tertiary dementia clinic. Results: No significant differences in disease severity were found between the 111 EOD and 235 LOD patient–caregiver dyads. The mean Mental Component Summary score of the 36‐item Short‐Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = −0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R2 = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score). Conclusion: Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self‐report rather than inferences from indirect data such as the subjective caregiver burden. 

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Disrupted sleep and associated factors in Australian dementia caregivers: a cross-sectional study

Background: Sleep disturbance is an issue reported by caregivers. Waking at night is a feature of dementia and by proxy, sleep disturbance among caregivers is reported to be high. Little is known about the characteristics of dementia caregivers' sleep and the factors that may influence sleep disruption. The purpose of this study was to investigate the sleep characteristics and disturbances of Australian caregivers of a person living with dementia. In addition, it evaluated the psychological wellbeing of caregivers by evaluating associations between mood and sleep in this population. Methods: This study used a cross-sectional, descriptive, correlation design. Participants were recruited with the assistance of Alzheimer's Australia, Dementia Australia and targeted social media advertising. In total, 104 adult, primary, informal caregivers of people with dementia participated, completing a questionnaire on demographic characteristics, the Depression, Anxiety and Stress Scale (DASS-21) and the Pittsburgh Sleep Quality Index (PSQI). Results: In this study, 76% of caregivers were female who had been caring for someone living with dementia on average for 4.8 years. 44% of participants had two or more co-morbidities namely cardiovascular disease, osteoarthritis and diabetes. 94% of participants were poor sleepers with 84% with difficulty initiating sleep and 72% reporting having difficulty maintaining sleep. Overall, psychological distress was common with high levels of moderate to severe depression, anxiety and stress. Global PSQI scores were significantly positively associated with depression and anxiety, with the strongest correlation seen with stress scores. Depression scores were also moderately associated with daytime dysfunction. Stress was identified as a significant predictor of overall sleep quality. Conclusions: Sleep problems are common within the population of dementia caregivers. Due to the nature and duration of caregiving and the progression of dementia of the care recipient, there is the potential for a decline in the caregivers' mental and physical health. Caregivers of those living with dementia are more likely to have comorbidities, depression, anxiety and stress. Sleep quality is correlated with emotional distress in dementia caregivers although the direction of this association is unclear. Therefore, sleep and psychological wellbeing may be intertwined, with improvements in one aspect resulting in a positive impact in the other.

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Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study

Background: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures. Methods: In the MODEM cohort study, three-hundred and seven people with clinically diagnosed dementia and their carers were recruited on a quota basis to provide equal numbers of people with mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, n = 100), and severe (sMMSE 0-9, n = 97) cognitive impairment. A series of multiple regression models were created to understand the associations between dementia severity and the QoL of people with dementia and the QoL of their carers. QoL was measured using self- (DEMQOL, EQ-5D, CASP-19) and proxy-reports (DEMQOL-Proxy, EQ-5D) of disease-specific and generic QoL of the person with dementia. Carer generic QoL was measured by self-report (EQ-5D, SF-12). Results: Disease severity, as measured by the sMMSE, was not significantly associated with the QoL of the person with dementia or the carer (p > 0.05), even after controlling for potential confounding variables for self-reported instruments. Proxy measures (rated by the carer) differed systematically in that there were small, but statistically significant proportions of the variance of QoL was explained by severity of cognitive impairment in multiple adjusted models. We also found little in the way of statistically significant relationships between the QoL of people with dementia and that of their carers except between DEMQOL-Proxy scores and the carer EQ-5D scores and carer SF-12 mental sub-scores. Conclusions: The data generated supports the somewhat counterintuitive argument that severity of cognitive impairment (and therefore severity of dementia) is not associated with lower QoL for the person with dementia when self-report measures are used. However, in absolute terms, as judged by the variance in the multivariate models, it is clear that the contribution of dementia severity to the QoL of people with dementia is minimal whatever the measurement used, be it self- or proxy-rated, or disease-specific or generic.

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Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome.Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

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Development and evaluation of the Singapore Caregiver Quality of Life Scale - Dementia

Purpose: To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where English is the lingua franca.; Methods: Items from the Singapore Caregiver Quality of Life Scale (SCQOLS), which was originally developed in the context of advanced cancers, were adopted as candidate items. Furthermore, a multi-disciplinary panel reviewed dementia-specific caregiver quality of life scales to identified items not covered in SCQOLS for inclusion as candidate items. A pilot study of 31 family caregivers of PWD was conducted to solicit inputs on candidate items; 102 family caregivers of PWD were surveyed for evaluation of the scale's measurement properties.;