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Dementia

The following resources examine caring for people with dementia.

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Piloting an innovative knowledge translation and exchange (KTE) approach on educational resources for caregivers

BACKGROUND: Knowledge translation and exchange (KTE) is about moving knowledge into practice, involving stakeholders in an ongoing iterative process. The Alzheimer Society of Canada (ASC) approaches KTE by emphasizing ongoing collaborations with our primary audiences: people with lived experience of dementia, healthcare providers, and researchers. Knowing that people have diverse learning styles and preferences for accessing information, ASC is diversifying the range of educational resources that are currently provided through a traditional medium (i.e., printed information sheets) to a multimedia range of KTE tools that can better meet the needs of our audiences. Beginning with a pilot project that explored the practical application of KTE to a key education resource, ASC has developed an operational process with the involvement of stakeholders to help our audiences access and benefit from the information they need in a manner that accommodates them. METHOD: A resource for the KTE pilot project was chosen based on a data driven approach to assess need and impact (i.e., number of website views, downloads, printed resource orders and feedback from stakeholders). Using ASC's KTE framework and the results of an environmental scan that identified KTE approaches used by other organizations, the team operationalized the KTE framework through a focus on four dimensions: 1) audiences, 2) information channels, 3) feasibility and 4) accessibility of the resource. Key stakeholders, including Alzheimer Society support staff and family caregivers, collaborated with ASC on the development of the tools through focus groups. RESULT: An infographic and a small video series on practical communication tips for caregivers were created. These KTE tools will support caregivers in staying connected to the person living with dementia at all stages of the disease; as the information is broad and digestible, it can be used by other audiences, such as healthcare providers. CONCLUSION: The KTE pilot project is a stepping-stone to establish a more integrative KTE approach to ASC's educational resources. The process established through this project will ensure that those who turn to ASC for information can find reliable, up-to-date and evidence-based content through a variety of tools that are engaging, easy to understand and accessible. 

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Perceptions of and needs for e-Health solutions for elderly people with cognitive impairment, their caregivers and health care providers: A qualitative exploration

BACKGROUND: The prevalence of mild cognitive impairment (MCI) and mild neurocognitive disorder (mNCD) are steadily increasing in Canada. Information and communication technologies (ICTs) in health represent an innovation to promote home care and autonomy for people with various degrees of cognitive impairment. The objective of this study is to develop a web-based multicriteria decision support tool adapted to older adults with MCI or mNCD, their informal caregivers, and health care providers (HCPs) to support the development and implementation of ICTs adapted to the needs and preferences of people with cognitive impairments and their caregivers. METHODS: We used a participatory research strategy to develop of a decision support tool for the use of ICTs focused on the needs of patients, their caregivers, and HCPs. Data collection consisted of semi-structured interviews with elderly people with MCI (N = 10) and caregivers of people with mNCD (N= 7) to explore their current knowledge and perceptions of various ICTs as well as their needs and preferences for such interventions and a focus group with HCPs to understand their perceptions of the needs of seniors with MCI and caregivers of people with mNCD. RESULTS: ICTs are seen as a beneficial solution to promote home care and autonomy for people with cognitive disorders. ICTs provide a sense of security and peace of mind, especially for caregivers of people with mNCD. However, the complexity and high cost of ICTs as well as the lack of support appear to be major limits to their use. HCP recognize the value of e-Health but claim to lack reliable information and were therefore highly unsure to recommend its use. CONCLUSIONS: People suffering from cognitive disorders and their caregivers are generally open to technological developments and favour the use of ICTs. For health professionals, continuous training on ICTs would make them more comfortable to recommend them to patients and their families. Although the use of ICTs is promising for maintaining elderly people with cognitive disorders at home, our study shows that it will be necessary to find ways to make them accessible to promote their use. 

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Psychosocial effects of the humanoid socially assistive robot Coach Pepper on informal caregivers of people with dementia: A mixed-methods study

Background: Dementia care is largely provided by informal caregivers, which can present significant challenges and increase caregivers' burden. Humanoid socially assistive robots (SARs) have the potential to provide assistance, but evidence is missing. Objectives: The aim was to explore the psychosocial effects of Coach Pepper (humanoid SAR system "AMIGO" combined with a tablet PC-based dementia training) versus an exclusive tablet PC-based dementia training on informal caregivers of people with dementia living at home (as well as their experiences). Methods: A randomized controlled trial with a complementary qualitative part was performed (May 2019-March 2020). 32 informal caregivers of people with dementia living at home participated in the study. The intervention group received Coach Pepper and the control group received only the tablet-based dementia training. The duration of the intervention was three weeks per household. Data was collected at baseline and after the intervention by standardized questionnaires for caregiver burden (primary outcome), quality of life, depressive symptoms and affect. Additionally, interviews about caregivers' experiences were conducted in the intervention group. Results: Participants were on average 58.2 (±12.5) years old and predominantly female (68.8%). Quality of life, depressive symptoms and affect demonstrated no significant differences regarding between-group mean changes, neither did caregivers' burden, which showed decreasing tendencies of burden in the intervention and control group (Zarit Burden Interview, -2.7±8.7 vs. -4.4±6.4, p=0.2552). Qualitative findings revealed that participants had positive attitudes regarding Coach Pepper and experienced it as neutral in terms of burden. Some stated that Coach Pepper provided relief/more free time by entertaining the persons with dementia. However, some participants stated that they had to invest additional time until the person with dementia was able to engage with Coach Pepper and that its usability should be improved in certain areas (e.g., communication) to constitute more support for caregivers. Conclusions: Coach Pepper had no significant psychosocial effects on informal caregivers of people with dementia. Qualitative findings demonstrated the participants' positive attitudes but highlighted a need for improvement regarding its usability. This study contributes to the development/modification of Coach Pepper based on caregivers' needs in dementia care. 

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Involvement, worries and loneliness of family caregivers of people with dementia during the COVID-19 visitor ban in long-term care facilities

Background: To prevent COVID-19 from spreading in long-term care facilities (LTCFs), the Dutch government took restrictive measures, including a visitor-ban in LTCFs. Objectives: This study examined the relationship between involvement of family caregivers (FCs) of people with dementia (PwD) living in LTCFs and FCs mental health during the visitor-ban, and whether this relationship was moderated by the frequency of alternative contact with PwD during the visitor-ban and FC resilience. Methods: This cross-sectional study collected data from 958 FCs. Findings: FCs who visited PwD more frequently before, were more worried during the visitor-ban than those with lower visiting frequency. FCs who visited the PwD daily before, but had minimal weekly contact during the visitor-ban, worried less. Resilient FCs who did social and task-related activities before, experienced less loneliness during the visitor-ban. Conclusions: It is advisable for healthcare professionals to reach out to these groups, to facilitate ongoing contact and help them overcome their loneliness. 

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Influence of the caregiver on the cognitive and functional decline of people with dementia: A systematic review

Background: Dementia is a neurodegenerative disease that requires the accompaniment of a caregiver who is in charge of assisting and supervising basic and psychosocial needs. Objectives: The objective of this article was to determine the influence of the caregiver on the cognitive and functional decline of patients with dementia. Methods: The method was a systematic review by searching the Scopus, Pubmed and Science Direct databases between the years 2010-2020. Findings and conclusion: In conclusion, the informal caregiver condition was the most reported by the investigations, generally assumed by wives and children; Caregiver characteristics such as personality, subjective interpretations of the functional status of adults with dementia, and caregivers' coping strategies were associated with a decrease in the rate of cognitive and functional impairment of people with dementia. 

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Incorporating young children into family caregiving for people with dementia in Taiwan

Background: Positive attitudes and appropriate knowledge about dementia are essential for the provision of suitable dementia care. Children as future voters may take on a critical role to increase community awareness and knowledge about dementia. Guided by Chinese filial piety cultural virtues, Taiwanese children are taught to respect and care for family seniors and extend this respect to other seniors. Accordingly, young children are considered part of family dementia caregiving system, despite children rarely assume formal caregiver role and not directly provide care work. However, Taiwanese children may possess stigmatized attitudes toward dementia due to a lack of proper dementia knowledge. Research Objective: This study aims to survey Taiwanese children age 9-11 years old attitudes and knowledge to the concepts of dementia. Methods: A total of 312 Taiwanese children from 8 elementary schools in the south Taiwan, aged 9-11 years old, were surveyed to assess their knowledge and attitudes toward dementia. Participants completed The Kids Insight into Dementia (KIDS), which is a 5-scale questionnaire containing three factors, “Personhood”, “Stigma”, and “Dementia Understanding”. The data was analyzed using quantitative method. Results: The results show that Taiwanese children are unfamiliar with dementia as related to brain disease (M= 3.94, SD=2.91), Taiwanese children are unfamiliar about nursing home provision of care (M=3.97, SD=2.17), Taiwanese children do not know the course of dementia disease (M=3.34, SD-1.39). Participants scored high on the question of “people with dementia have hobbies and interests” (M=4.15, SD=1.22); Participants reported that they agreed less often with stigma attached to the people with dementia, including items of “I would feel a bit scared if I met someone dementia in the street” (M=2.70, SD=1.79), ”people with dementia can be creepy” (M=2.18, SD=1.71), “It would be annoying of frustrating to spend time with someone with dementia” (M=2.15, SD=1.17), “It is unlikely that I would meet someone with dementia” (M=2.36, SD=1.27). Conclusions: Our findings suggest that Taiwanese children may express less stigmatized attitudes toward people with dementia and yet they report less understanding of concepts of personhood of people with dementia. Therefore, dementia education is necessary to increase dementia knowledge among school age children in Taiwan.

 

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Implementation and dissemination of home and community-based interventions for informal caregivers of people living with dementia: A systematic scoping review protocol

Background: Ageing in place, supported by formal home and community services and informal caregivers, is the most used long-term care option for people with dementia (PwD). Informal caregivers are inundated by their caregiving responsibilities and resultantly suffer consequences. Despite the multitude of clinical effectiveness studies on interventions that support informal caregivers, there is a paucity of information regarding their implementation process. This scoping review aims to identify the implementation strategies, implementation outcomes, and barriers and facilitators that impede or support the dissemination and uptake of interventions that support informal caregivers of PwD at home. Methods and analysis :This protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols, and the scoping review will follow the systematic steps of the PRISMA-Extension for Scoping Reviews guideline. The search strategy will include publications produced from inception to 8 March 2021 and will be conducted in the search engines Embase, Medline (Ovid), Web of Science and Cochrane Central Register of Controlled Trials (Wiley), followed by a three-stage approach. First, title and abstracts will be screened by two independent reviewers. Second, full-text articles will also be screened by both reviewers and, in case of disagreement, by a third reviewer. The first two stages are based on a set of inclusion and exclusion criteria. Reference lists of the final included studies will also be checked for relevant articles. Data from the final included studies will be extracted and synthesised using the Expert Recommendations for Implementing Change compilation and Proctor’s implementation outcomes to ensure homogenous and standardised reporting of implementation information. Ethics and dissemination: The review findings will be published in a peer-reviewed journal and disseminated at geriatric and implementation conferences to inform researchers, health service planners and practice professionals with an overview of the existing literature to guide them in the effective implementation of caregiver-focused interventions in dementia support.

 

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Impact of COVID-19 restrictions on carers of persons with dementia in the UK: a qualitative study

Background: informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Methods: qualitative semi-structured interviews. PARTICIPANTS: purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home.UK. Results: twenty-three carers were interviewed, and thematic analysis identified three main themes-Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. Conclusions: carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue. 

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HOMESIDE-A home-based family caregiver-delivered music and reading intervention for people living with dementia: A randomised controlled trial

Background: Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no studies have examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Objectives: Our project addresses the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia and CGs. Methods: An international three-arm parallel-group randomised controlled trial has so far randomised 130 of the target 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads are randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. Results: The primary outcome is BPSD of people with dementia (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes examine relationship quality between CG and people with dementia, depression, resilience, competence, QoL for CG and QoL for people with dementia. Outcomes are collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia captures economic data across the life of the intervention and at 6-month follow-up. Conclusions: Our presentation will briefly outline the study protocol and describe the caregiver training protocol and interventions in detail with video footage illustrating how the intervention looks in practice. 

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Home care in dementia: The views of informal carers from a co-designed consultation

Background: In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods: This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings: Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion: Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision. 

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Health-Related Quality of Life: A Comparative Analysis of Caregivers of People with Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015-2018 BRFSS

Background: Many informal caregivers experience significant caregiving burden and report worsening healthrelated quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. Objectives: Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. Methods: Using 2015-2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. Results: Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29-1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17-1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). Conclusions: Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts. 

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Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them

Background: Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. Objectives: In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. Methods: The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). Findings: In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. Conclusions: The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. 

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Fruit and vegetable intake and mental health among family caregivers of people with dementia in Uganda

Background: Consumption of fruits and vegetables is correlated with improved mental wellbeing. Although this growing body of research has been recognized by researchers and clinicians in high-income countries, fewer studies examining this relationship have been conducted in low- and middle-income settings. Objectives: In this study, we sought to estimate the association between fruit and vegetable intake and symptoms of depression and anxiety. Methods: We conducted a cross-sectional study among 242 family caregivers of people with dementia in southwestern Uganda. Fruit and vegetable intake in the past week was measured with a food frequency questionnaire. Depression and anxiety were assessed using the depression and anxiety subscales of the 42-item Depression, Anxiety and Stress Scales. Multivariable regression models were used to estimate the associations between fruits and vegetable consumption and depression and anxiety, adjusting for caregiving burden and other potential confounders. Results: Depression symptom severity was negatively associated with consumption of jackfruits (b =-4.68; 95% confidence interval [CI], -8.96 to -0.39), green leafy vegetables (b =-14.1; 95% CI, -18.0 to -10.1), root vegetables (b =-14.0; 95% CI, -19.5 to -8.63), and other vegetables (b =-14.8; 95% CI, -19.3 to -10.3), and frequent consumption of vegetables (b =-1.91; 95% CI, -3.77 to -0.04). Anxiety symptom severity was negatively associated with consumption of green leafy vegetables (b =-12.2; 95% CI, -16.0 to -8.46), root vegetables (b=-12.6; 95% CI, -17.5 to -7.58), and other vegetables (b =-12.7; 95% CI, -17.0 to -8.40), and frequent consumption of vegetables (b =-2.07; 95% CI, -3.84 to -0.29). Conclusions: Our results suggest that fruit and vegetable consumption is associated with reduced depression and anxiety symptoms. 

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Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used “by informal caregivers,” “by people with dementia,” and “with people with dementia.” Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care.

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Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation

Background: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer’s disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p <.05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative’s dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). Methods: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM’s effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. Results: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. Conclusions: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. Trial registration: ClinicalTrials.govNCT03665909, retrospectively registered on 11 Sept 2018. 

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Satisfaction with caregiving among informal caregivers of elderly people with dementia based on the salutogenic model of health

Objectives: The main objective was to analyze the variables Sense of Coherence, Resilience and Emotional Regulation as predictors of satisfaction with care in caregivers of older adults people with dementia. Methods: An ex post facto cross-sectional study design with a single group. The data were collected between June and October 2020.63 caregivers of older adults people with severe dementia participated, by responding to questionnaires concerning the study variables during a telephone interview. Information was also collected regarding the characteristics of the care provided (years of evolution, degree of dementia, index of independence) and regarding the caregiver (age and years of caregiving) which will be analyzed as control variables. The data were analyzed using correlation analysis and multiple linear regression analysis. Results: The participants presented average levels for Sense of Coherence, Resilience, Emotional Regulation (M = 16.93) and a high degree of Satisfaction with care. Sense of Coherence was the main predictor of Satisfaction with care, explaining up to 67% of the variance, through its Significance and Comprehensibility dimensions. Although the Resilience variable presented a significant association with Satisfaction, its role in the predictive model was displaced by Sense of Coherence. Conclusions: Sense of Coherence and Resilience are relevant psychological variables because of their positive relationship with satisfaction with care among caregivers of older adults people with dementia. The caregivers' perception of the significance and comprehensibility of the situation are important positive predictors of their satisfaction with the care of older people with dementia. These results are suggestive to guide the follow-up and psychological support of caregivers. 

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Factor analysis of the Resilience Scale for Brazilian caregivers of people with Alzheimer's disease

Background: Resilience is a dynamic process that acts to modify the effects of an adverse life event. Objectives: In this study, we aimed to test the construct validity of the Resilience Scale by employing exploratory and confirmatory procedures, and to investigate the relationship between caregiver's resilience and clinical status of people with Alzheimer's disease. Methods: A sample of 143 dyads of people with Alzheimer's disease and their primary caregivers were included. Results: The total Resilience Scale mean score was 140.3 (standard deviation [SD] = 16.289), ranging from 25 to 175, indicating a high level of resilience. Cronbach's alpha was high (alpha = 0.77), indicating excellent internal consistency. The mean of corrected item-total correlation coefficients was moderate. The Resilience Scale presented a four-factor solution with a well-defined structure: sense of life and self-sufficiency, perseverance, self-confidence and equanimity, and meaningfulness. Conclusion: The findings indicate excellent internal consistency of the Resilience Scale when used to evaluate psychological and emotional difficulties of caregivers, even though the correlations observed between the Resilience Scale and clinical variables were not significant for functionality, mood, awareness, neuropsychiatric symptoms, or burden.

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Online Education and Cognitive Behavior Therapy Improve Dementia Caregivers' Mental Health: A Randomized Trial

Objectives: To compare online cognitive-behavioral therapy (CBT) with and without telephone support respectively to online psychoeducation in a randomized controlled trial (RCT) in caregivers of people with dementia with mild anxiety or depression. Methods: Three-arm parallel-group RCT comparing online CBT with and without telephone support respectively to online psychoeducation. Online study with caregivers of people with dementia. The primary outcome measure was mental health measured by General Health Questionnaire–12 (GHQ-12) at 26 weeks. Secondary outcomes included the Hospital Anxiety and Depression Scale (HADS); the Relative Stress Scale (RSS) and the Short Sense of Competency Questionnaire. The primary analysis focused on people completing GHQ-12 at both baseline and 26 weeks, evaluated using analysis of covariance. Results: 638 people were randomized to the 3 treatment arms, of whom 208 were included in the analysis population. There were significant improvements in GHQ-12 in all treatment arms compared to baseline (P < .001 for all interventions), but neither CBT with nor without telephone support conferred any significant advantage compared to psychoeducation. For the secondary outcomes, there were no significant differences between CBT with telephone support and psychoeducation, but CBT without telephone support was less effective than psychoeducation with respect to HADS depression subscale [mean difference 1.86, 95% confidence interval (CI) 0.61, 3.11; P = .004] and caregiver stress (RSS mean difference 3.11, 95% CI 0.13, 6.09; P = .04). Good safety was achieved in all 3 treatment arms, with no deaths or serious adverse events. Conclusions and Implications: Online CBT with telephone support and psychoeducation both achieved significant benefits over 26 weeks compared with baseline in mental health and mood, but there were no advantages for CBT compared with the psychoeducation intervention. CBT without telephone support was less effective with respect to mood outcomes than psychoeducation and should not be recommended based on current evidence.

 

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Social support moderates the effect of stress on the cortisol awakening response in dementia family caregivers

Background: Dementia caregiving has been associated with a range of adverse effects on the physical health of the caregiver. However, the specific mechanisms underlying the relationship between dementia caregiver stress and ill health remain unclear. Objectives: The aim of this study was to investigate, using available prospective data, the relationship between perceived stress (burden) and pre-clinical indices of ill-health (cortisol awakening response and secretory immunoglobulin A) amongst dementia caregivers. The potential moderating effect of social support on the perceived stress-physiological stress/health relationship was also explored. Methods: Participants (N = 31) were caregivers of community-dwelling older adults living with dementia who were enroled in a psychoeducation support program and provided data (study questionnaire and saliva samples) at two timepoints (T1 and T2), 10 weeks apart. Hierarchical regressions were used to determine if changes in stress and social support predicted change in each of the physiological outcomes. Results: Findings indicate that caregivers with more hours of care at T1, or with greater satisfaction with social support, were more likely to exhibit an adaptive cortisol awakening response at T2. Moreover, social support was found to buffer the effect of caregiver stress and hours of caregiving on the cortisol awakening response. Conclusions: Implications for future interventions targeting caregiver health are discussed. 

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Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Background: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. Objectives: The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods: Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results: 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion: Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact. 

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Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation

Background and aims: Family members who care for older adults with dementia encounter significant difficulties across many domains. There is limited research in this area; thus, the aim here is to share the actual experiences of 30 family caregivers to other family caregivers and to show how these experiences can provide help and recommendations. Methods: This qualitative study of 30 family caregivers of family members aged 65 and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period for data collection and content analysis to understand the data. The study asked what they learned and what subsequent recommendations these caregivers had for other family caregivers taking care of an older person with dementia. Results: Four primary themes emerged from the content data analysis and included the following: (1) “do not do it alone”; (2) patience, love, and kindness; (3) “first of all, take care of yourself”; and (4) “get educated.” Conclusions: This study is unique in asking directly of family caregivers of older persons who died of dementia what they learned and what they want to share and recommend to ongoing and future family caregivers. 

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Supporting Informal Caregivers of People With Dementia in Cost-Effective Ways: A Systematic Review and Meta-Analysis

Background and Objectives: Caring for persons with dementia is a heavy burden for informal caregivers. This study aimed to appraise the economic evidence of interventions supporting informal caregivers of people with dementia. Methods: Literature was searched, and trial-based studies evaluating the costs and effects of interventions supporting informal caregivers of people with dementia were included. Cost data were analyzed from both healthcare and societal perspectives. Random-effects models were used to synthesize cost and effect data, based on mean differences (MDs) or standardized MDs. Results: Of 33 eligible studies identified from 48 588 records, 14 (42.4%) showed net savings in total cost regardless of analytical perspectives. Among 22 studies included in meta-analyses, caregiver-focused psychosocial interventions showed improvements in caregivers’ psychological health (n = 4; standardized MD 0.240; 95% confidence interval 0.094-0.387); nevertheless, the increases in societal cost were significant (n = 5; MD 3144; 95% confidence interval 922-5366). Psychological intervention and behavioral management engaging patient-caregiver dyads showed positive effects on caregivers’ subjective burden, also with increases in total cost. Subgroup analyses indicated that the inclusion of different intervention components, the caregiver characteristics, and the follow-up periods could affect the costs and effects of interventions supporting informal caregivers. Conclusions: Psychosocial interventions directed at informal caregivers and dyad-based psychological and behavioral interventions are effective but also expensive. The use of these interventions depends on the society's willingness to pay. More comprehensive economic evidence of interventions supporting informal caregivers is required, and the design of intervention should focus more on different intervention components, characteristics of patients and caregivers, and healthcare systems. 

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Taking a Break: Daily Respite Effects of Adult Day Services as Objective and Subjective Time Away From Caregiving

Background and Objectives: Adult day services (ADS) can provide emotional and physical relief for caregivers of persons with dementia. While prior studies conceptualized ADS use at the aggregate level as a dichotomous construct, little is known about objective and subjective respite as distinct constructs. This study investigated how objective and subjective breaks from caregiving were associated with caregivers' daily emotional well-being. Research Design and Methods: Family caregivers (N = 173) whose relatives were using ADS at least twice a week participated in daily interviews over 8 consecutive days (day N = 1,359). Participants provided information on daily respite hours and daily affect. They also reported perceived frequency of breaks from caregiving responsibilities and primary and secondary caregiving stressors (i.e., overload and work conflict). Multilevel models were used to examine the research questions. Results: On average, caregivers reported 7.12 respite hours on ADS days and 1.74 respite hours on non-ADS days. Having more objective respite was associated with higher positive affect, whereas more subjective respite was associated with lower negative affect, after controlling for ADS use and other covariates. Further, caregivers with greater work conflict experienced more benefits to their positive affect as a result of objective respite. Discussion and Implications: Objective and subjective respite are unique aspects of caregiving that may have varying impact on caregivers. Respite may be especially beneficial for caregivers experiencing conflict between work and caregiving.

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The experiences of people with dementia and informal carers related to the closure of social and medical services in poland during the covid-19 pandemic—a qualitative study

Background: Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. Objectives: The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. Methods: A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Findings: Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Conclusions: Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs. 

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Experiences of informal caregivers of people with dementia with nursing care in acute hospitals: A descriptive mixed‐methods study

Objectives: To explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers’ situation and the acute hospital environment. Methods: Mixed‐methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework. Results: Almost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person‐centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses. Conclusion: Positive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease‐oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person‐centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements. Impact: This study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients’ caregivers’ perspectives. It also provides insights to improve nurses’ training and for organizations to make the care and environment more dementia‐friendly.

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The experiences of those affected by parental young onset dementia: A qualitative systematic literature review

Objectives: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed. Results: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were ‘making sense of dementia’, ‘impact of dementia’, ‘coping’ and ‘support’. Conclusions: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery. 

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

Objectives: 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. Methods: 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. 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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The early stages of caregiving: A qualitative study into the caregiving experiences of Asian family caregivers of persons with newly-diagnosed dementia

Background: In Asian societies, the responsibility of caring for persons with dementia often falls upon an immediate family member. However, little attention has been paid to the early stages of caregiving, as well as their transition into a more experienced caregiver. Methods: Thus, a qualitative descriptive study involving a purposive sample of 11 main family caregivers of a person with newly diagnosed dementia was recruited from a tertiary hospital in Singapore. Findings: Three themes emerged from the data analysis: (1) Suspicions to seeking confirmation of dementia, (2) Grappling with dementia diagnosis, and (3) Making adjustments for the future. Areas of needs and support identified during the early caregiving journey suggest the need for caregivers to be prepared for the practical and emotional challenges. Conclusions: Unique to the Asian culture, our findings put forth the advocacy of engaging persons with dementia in the discussions of their long-term care and options. 

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Family caregivers of people with dementia have poor sleep quality: A nationwide population-based study

Background: Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. Methods: We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitat-ing caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Results: Both cohabitating and non-cohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15–1.38) and noncohabitating caregivers (OR 1.15, CI 1.10–1.21) were significantly associated with poor sleep quality. Conclusions: Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers. 

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Factors influencing caregiver burden by dementia severity based on an online database from Seoul dementia management project in Korea

Backgrounds: As the prevalence of dementia rises, caregiver burden also increases in South Korea, especially for informal family caregivers. Objectives: This study aimed to analyze factors affecting caregiver burden by the severity of dementia based on data of patients in Seoul. Methods: A total of 12,292 individuals aged ≥65 years enrolled in the Seoul Dementia Management Project from 2010 to 2016 in an online database were selected. Caregiver’s burden was assessed using the Korea version of Zarit Burden Interview. Multiple regression analyses were performed to determine factors associated with primary caregiver’s burden after stratifying the severity of dementia. Results: Most patients showed moderate levels of cognitive impairment (49.4%), behavior problems (82.6%), and ADL dependency (73.6%). After stratifying the severity of dementia, caregivers caring for patients with mild symptoms of dementia were experienced with higher caregiver burden if patients were under a lower score of IADL. Significant factors for caregiver burden among caregivers supporting patients with moderate symptoms of dementia include caregivers’ residence with patients, subjective health status, and co-work with secondary caregivers. Lastly, caregivers for patients with severe dementia symptoms experienced a higher caregiver burden from limited cognitive function, problematic behavior, and caregivers’ negative health status. Conclusion: In terms of sample size, this study had far more patients than any other domestic or international study. It was meaningful in that it analyzed characteristics of patients with dementia and caregivers affecting the burden of caregivers in Korea. Intensive social supports with multiple coping strategies focusing on different levels of patients’ clinical symptoms and caregivers’ needs should be planned to relieve the caregiver burden. 

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Telehealth outreach programming in the Pacific island of Guam: Providing access to dementia care support services during the COVID-19 pandemic

Background: The COVID-19 pandemic has led to heightened levels of isolation and loneliness for millions of individuals and families worldwide, resulting in adverse health and mental health outcomes. Persons with dementia and their family caregivers are particularly vulnerable due to the deleterious impact of social isolation on both dementia symptoms and caregiver burden. One of the greatest challenges for dementia patients has been accessing dementia care services during COVID-19 lockdowns. In the Pacific island of Guam, the pandemic quickly led to the closure of senior centers, adult day care centers, family caregiver support programs, and other social services for older adults and their families in March 2020. As a result, persons with dementia suddenly found themselves isolated at home and dependent upon family members to provide round-the-clock care. Objectives: This presentation will describe the development of an innovative telehealth outreach program that was launched in Guam in the summer of 2020, three months after the first COVID-19 case had appeared on the island. Methods: The program was designed to provide improved access to social support and specialized community services for persons with dementia and their family caregivers. There are four components: (1) virtual family caregiver support groups where participants can share the stresses and challenges of caring for a loved one with dementia with others who are going through similar experiences; (2) virtual presentation and consultation sessions led by dementia care specialists from the community providing easy access to dementia care information and services; (3) 24/7 family caregiver support networks through mobile messaging apps to mitigate social isolation and ensure the availability of support in times of crisis; and (4) telehealth family counseling for persons with dementia and their family members employing narrative approaches that embrace the oral storytelling traditions of Pacific island cultures. Results: The community response has been strong with approximately 50-60 family caregivers and persons with dementia participating in the program monthly. Conclusions: Project outcomes suggest that telehealth outreach services represent an effective and sustainable approach to connecting persons living with dementia and their family caregivers to community resources during times of isolation. 

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Implementation and evaluation of a self-care toolkit for caregivers of families with dementia

Background: Family caregivers who care for individuals with dementia are more likely to develop chronic stress, major depression, anxiety, and physical health disorders and they have a higher mortality rate compared with the general population. Local problem: Caregivers are at an increased risk of physical and mental disorders. Many report that they are fatigued and need more forms of support. Methods: This project involved a convenience sample of 35 family caregivers who cared for family with dementia. Prequestionnaires and postquestionnaires were used to determine improvements in caregiver health and well-being and caregiver resources for supportive services as well as reduction in caregiver stress. Interventions: An evidence-based educational class was developed and implemented based on the Family Care Alliance (FCA): Taking Care of YOU: Self-Care for Family Caregivers Toolkit. The project aimed to (1) assess two FCA recommended domains: caregiver health and well-being and caregiver resources for supportive services and (2) reduce caregiver stress. Results: Stress Inventory results showed notable change in high risk/low risk categorization from pretest to posttest. At pretest, 31 caregivers were categorized as at high risk for unhealthy levels of stress, but posttest showed only 9 caregivers were so categorized. Approximately, 70% of those at high risk at pretest were categorized as low risk at posttest. Conclusions: This project validated that evidence-based educational interventions can improve caregiver knowledge and self-care. Continued support may be promoted by incorporating education and offering resource brochures to caregivers during primary care visits.

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Investigating the relationship between quality of life and hope in family caregivers of hemodialysis patients and related factors

Background: Family caregivers of hemodialysis patients are the first and most crucial source of care at home. They experience many problems in the care of hemodialysis patients, which can affect their quality of life and hope, affecting the quality of care provided to patients. Objectives: This study aimed to determine the relationship between quality of life and hope in family caregivers of hemodialysis patients. Methods: A cross-sectional (descriptive-analytical) study performed on 300 family caregivers in the east of Mazandaran province in Iran. Data were collected using the Family Caregiver Quality of Life (FQOL), SF8 and adult hope scale. Data analysis was performed in SPSS version 16, and a P-value of below 0.05 was considered statistically significant. Results: The results showed that, there was a direct and significant relationship between hope and quality of life. However, the quality of life was significantly lower in suburban residents, the unemployed, spouses, people with lower education and income levels, caregivers who cannot leave their patients alone, those living with their patients in the same house, and those taking care of male patients, compared to other participants (P < 0.05). Suburban residents, the unemployed, people with an insufficient level of income, and those living with their patients in the same house had significantly lower hope, compared to other subjects. Conclusion: Since an increase of hope and quality of life of caregivers can cause improved quality of patient care, it is recommended that hope-based educational programs and interventions be implemented for caregivers. 

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Online Educational Tools for Caregivers of People with Dementia: A Scoping Literature Review

Background: Informal caregivers of people with dementia provide the majority of health-based care to people with dementia. Pro-viding this care requires knowledge and access to resources, which caregivers often do not receive. Objectives: We set out to evaluate the effect of online educational tools on informal caregiver self-efficacy, quality of life, burden/stress, depression, and anxiety, and to identify effective processes for online educa-tional tool development. Methods: We conducted a scoping review of articles on online educa-tional interventions for informal caregivers of people with dementia searching CINAHL, MEDLINE, EMBASE, and PubMed from 1990 to March 2018, with an updated search conducted in 2020. The identified articles were screened and the data were charted. Results: 33 articles that reported on 24 interventions were included. There is some evidence that online interventions improve caregiver-related outcomes such as self-efficacy, depression, dementia knowledge, and quality of life; and decrease care -giver burden. Common findings across the studies included the need for tailored, stage-specific information applicable to the caregiver's situation and the use of psychosocial techniques to develop the knowledge components of the interventions. Conclusion: We demonstrate the importance of having caregivers and health-care professionals involved at all stages of tool concep-tualization and development. Online tools should be evaluated with robust trials that focus on how increased knowledge and development approaches affect caregiver-related outcomes.

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Perceptions and experiences of dementia and its care in rural Kenya

Objectives: We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya. Methods: A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data. Findings: Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse. Conclusions: We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally. 

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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. Objectives: 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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The psychological effects of caring for a family member with dementia

Background: Informal caregivers have a vital role in supporting and caring for family members with dementia. Caregiving is complex and may lead to psychological, physical, social and financial stress for caregivers. Methods: This article reports the findings of an integrative review that explored the literature on the psychological effect of caring for a family member with dementia at home. Findings: The article discusses four themes that were identified in the literature: 'the world shrinks'; 'surrender to the unknown'; 'robbed of the future'; and 'torn between relief and guilt'. Conclusions: These themes provide insight into the holistic experience of caring for a family member with dementia, revealing the positive and negative psychological effects of the role. 

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The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme

Background and Objectives: We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to 'living well'. Methods: We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Results: Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Conclusions: Initiatives that increase support or engagement in the community or wider society may help to increase carerss' perceptions of their social status, enhancing their ability to 'live well'.

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Social support moderates the effect of stress on the cortisol awakening response in dementia family caregivers

Background: Dementia caregiving has been associated with a range of adverse effects on the physical health of the caregiver. However, the specific mechanisms underlying the relationship between dementia caregiver stress and ill health remain unclear. Objective: The aim of this study was to investigate, using available prospective data, the relationship between perceived stress (burden) and pre-clinical indices of ill-health (cortisol awakening response and secretory immunoglobulin A) amongst dementia caregivers. The potential moderating effect of social support on the perceived stress-physiological stress/health relationship was also explored. Methods: Participants (N = 31) were caregivers of community-dwelling older adults living with dementia who were enroled in a psychoeducation support program and provided data (study questionnaire and saliva samples) at two timepoints (T1 and T2), 10 weeks apart. Hierarchical regressions were used to determine if changes in stress and social support predicted change in each of the physiological outcomes. Results: Findings indicate that caregivers with more hours of care at T1, or with greater satisfaction with social support, were more likely to exhibit an adaptive cortisol awakening response at T2. Moreover, social support was found to buffer the effect of caregiver stress and hours of caregiving on the cortisol awakening response. Conclusions: Implications for future interventions targeting caregiver health are discussed. 

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Engaging multi-stakeholder perspectives to identify dementia care research priorities

Objectives: The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. Methods: Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as “Not so important,” “Important,” or “Very important.” Priorities for dementia care were summarized by frequencies and proportions. Results: A total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as “Very Important”. High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%). Conclusions: This project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

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Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial

Background: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. Methods: We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012–2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. Results: Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. Conclusions: Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. Clinical trial registration: Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013. 

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Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson's disease and multiple sclerosis

Background and Objectives: This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson's disease and multiple sclerosis. Research Design and Methods: Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist. Results: A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support. Discussion and Implications: Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers.

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Development of a short form of the Singapore Caregiver Quality of Life Scale – Dementia: SCQOLS-D-15

Background: The Singapore Caregiver Quality of Life Scale – Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid and reliable measurement scale. Objective: This study aimed to develop and evaluate a short form of the SCQOLS-D. Methods: Data were collected from 102 family caregivers of person with dementia in Singapore. Candidate items were shortlisted by factor analysis, correlation and best subset regression. Shortlisted items with the best measurement properties including correlations with the long form and other established measures, internal consistency and test-retest reliability were identified. Their properties were compared with the corresponding domain scores in the long form of SCQOLS-D and a short form of the SCQOLS. A total score based on the average of the domain scores was also evaluated. Results: A total of fifteen items, two to four items per domain, were selected. The total and domain scores generated from these items strongly correlated with the corresponding score of the long form (correlation coefficients: 0.83–0.97). The short and long forms had comparable correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. The short form showed good internal consistency (Cronbach’s alpha: 0.84–0.92) and test-retest reliability (intra-class correlation coefficient: 0.72–0.93). These 15 items form the SCQOLS-D-15, an abbreviated version of the SCQOLS-D. Conclusion: The SCQOLS-D-15 showed acceptable measurement properties. This serves as an alternative to the SCQOLS-D to provide rapid assessment of the overall and domain-specific quality of life of caregivers of persons with dementia.

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Developing a Unifying Model of Resilience in Dementia Caregiving: A Scoping Review and Content Analysis

Background: Resilience, a capacity for addressing, recovering, and growing from challenging situations, can mitigate dementia care partners’ burden. Three main theoretical models predominate, treating resilience variably as an outcome, a trait, or a process. Objectives: In this scoping review, we examine how these three models inform definitions and measures of resilience in dementia care partners to understand whether there is a single coherent model and identify the gaps in conceptualizing and operationalizing resilience. Methods: We searched English-language peer-reviewed articles (January 1991–June 2019) that contained definitions and/or measures of resilience developed for or used with dementia care partners. Data were analyzed using content analysis. Results: We found that perspectives from the three existing theoretical models can be integrated into a unified framework for the study of resilience in dementia care partners. However, major gaps remain in operationalizing resilience for research due to a paucity of resilience outcomes and knowledge about resilience-related behaviors. 

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Dementia caregiving in the Middle East and North Africa: A scoping review

Background: Care for persons with dementia in the Middle East and North Africa (MENA) is undertaken predominantly by family members, domestic workers, and private nurses within the home. Domestic caregivers possess different understandings and varying degrees of knowledge of dementia that are influenced by complex socio-cultural and religious factors. With much of the burden falling on the shoulders of “invisible” caregivers, the role and needs of these individuals require deeper scrutiny. Objective: The purpose of this scoping review was to examine the empirical studies published on caring for persons with dementia in Arab countries of the MENA region. Methods: Using a systematic review technique, searches were conducted on PubMed, Embase, Web of Science, Scopus, and Google Scholar using database-specific terms associated with caregiving, dementia, aging, and the MENA region. To ensure local and regional research was captured, hand searches of regional journals, reference lists of included articles, and Arabic databases Al-Manhal and e-Marefa were also searched. No date restrictions were imposed. Results: Twenty studies met inclusion criteria and the following themes were identified: caregiving experiences and the burden of care; barriers to caregiving; and caregiver recommendations to improve care. Results demonstrate that studies about informal caregivers and dementia within Arab-Muslim populations are underrepresented in the research. Conclusions: This review highlights the paucity of literature on service users’ experiences and underscores the need for future research specific to dementia care within the Arab-Islamic sociocultural context. These trajectories are especially pertinent given the unprecedented aging demographics of the MENA populations. 

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Dementia Care Apps for People with Dementia and Informal Caregivers: A Systematic Review Protocol

Background: Dementia drastically impacts the quality of life (QOL) of both people living with dementia (PLwD) and their family caregivers. As dementia progresses and care needs escalate, the likelihood of institutionalization is increased, which is counter to the wishes of the majority of older adults and their family members. Dementia care apps can provide critical support and have the potential to improve the QOL of both PLwD and their family caregivers and reduce perceived caregivers' burden. However, there is a lack of understanding of the needs of both PLwD and their family caregivers related to dementia care apps. There is also a gap in understanding the privacy concerns in relation to the apps among older adults with dementia and their caregivers. Objectives: As such, the main aims of this systematic review are to understand the landscape of dementia mobile apps targeting PLwD and their caregivers with respect to the features of the apps, usability testing, and the privacy and security aspects of the app from the perspective of both app developers/researchers and the end users (PLwD and family caregivers who provide care of PLwD). Methods: Extensive databases, including ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE(R) Daily, Proquest Dissertations and These Global, PsycINFO, and Scopus, have been searched. All searches are from the inception of the databases. All peer-reviewed studies and articles written in the English language are included. Two reviewers will independently screen and select the studies with the involvement of a third reviewer for disagreements. Data will be abstracted using a custom data extraction form that is made based on the research questions. Critical Appraisal Skills Programme (CASP) checklists will be used to assess the study quality. As the first review of its kind, the findings from this review will provide valuable insights related to the needs of the dementia care apps for both PLwD and their family caregivers. Conclusions: The review will be relevant to health providers who are interested in using technologies to promote the independence of PLwD and reduce the stress experienced from caregivers of PLwD. The review will also serve as a guide to app developers and researchers to design usable and acceptable apps. In addition, the review will provide critical knowledge of the privacy and security features of the app to reveal the valid concerns from the end users and thus help with the uptake and adoption of the dementia care apps. 

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Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods: Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings: Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions: People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required. 

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The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic. 

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The burden of Alzheimer’s caregivers and social support in the Tunisian family

Background: Alzheimer is a pathology that concers the patient and his family having a physical, social, economic and psychological impact. Research on family caregivers is still lacking and little is known about caregivers burden and ist associated factors in Tunisia. Objectives: The aim of this study were to describe caregiver burden among Tunisian family caregivers of patients with alzheimeŕs disease, its associated factors and ist relationship to social support. Methods: We conducted a cross-sectional study among 118 family caregivers during three months at the neurology outpatient departments of two university hospitals. Sahloul, Sousse and Taher Sfar, Mahdia. Using the Zarit Burden Interview-22 (ZBI)items and the Medical Outcome Study-Social Support Survey to assess burden and social support among the caregivers. Results: We included 118 caregivers of patients with Alzheimeŕs disease,with an average age of 45±15 years. Women were more predominant with a sex ratio of 0.57.Half of caregivers were the descent of patients. The Mean years of caregiving was 5±3 years with an average of 13 hours ±3 of care assistance per day. The mean ZBI Score was 38.4±18.5 and 16.1% of caregivers percived a severe burden. The mean ZBI Score was higher in female, retired, lowmsocio economic status and in rural area with a statistically significance difference. We found that caregiver burden and social support were highly correlated (p < 0.001,r=-0.41)indicating that a high level of caregiver burden was asoociated with a less level of social support. Conclusions: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. A considerate help and support from helth care and social institutions is required by taking into account the factors that contribute to caregivers burden and considering the importance of social support in alleviating caregiver burden. Key messages: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. High level of caregiver burden was asoociated with a less level of social support.

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Communication-related concerns of family caregivers of older adults living with dementia: A cross-sectional descriptive study

Objectives: The purpose of this study was to investigate the communication-related concerns of family caregivers of older adults living with dementia in Thailand. Methods: A cross-sectional study in which 115 caregivers from five outpatient clinics located in the central and southern regions of Thailand participated in a survey from May to October 2019. The survey questions spanned three topics: (1) communication problems and perceived communication difficulties; (2) communication strategies used and older adults’ positive responses and; (3) communication training support. Data collected were analyzed by using descriptive statistics with focus on frequency ranking and correlation. Results: In general, most of the caregivers were females with daughter-mother or daughter-father relationships, and had taken on the role of main caregivers of the older adults from one to five years. The older adults’ ages ranged from 60– 94 years with a mean age of 76.3 years (SD = 7.8). The majority was female. TMSE scores ranged from 14–23 with the majority scoring 19 points (n = 78, 67.8%). Conclusions: The study results suggested that communication-related concerns among family caregivers of older adults living with dementia play a major role in their emotional burdens. Recognizing communication-related concerns should be utilized for designing an appropriate communication training program and implementing interventions for assisting family caregivers. A communication program assisting family caregivers to build a more open and positive relationships with older adults with dementia is recommended. 

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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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Co-designing toolkits to improve post-diagnostic support for people living with dementia, care partners and health and social care professionals (COGNISANCE)

Background: COGNISANCE is an international research programme (Australia, UK, Canada, Netherlands, and Poland). In partnership with people living with dementia, informal care partners, health and social care professionals and key national and international dementia organisations and researchers, we have co-designed online toolkits aiming to improve post-diagnostic support for dementia. Methods: We have worked closely with local working groups representing members from key audiences and a design and marketing agency to run a series of workshops in five countries. The workshops to date have focussed on the key messages, motivators for information seeking, experiences of dementia diagnosis and post diagnostic support, the purpose for toolkits and the tone and branding appropriate for the key audiences for a resource that focusses on the first twelve months post-diagnosis. Results: Co-design workshops were successfully run concurrently in five partner countries. Each country's research team and local working groups remained highly engaged throughout the process. Key motivators for the toolkits led to a focus on a practical and empathetic resource that was tailored to the individual. The toolkits will be a website that has three separate pathways, one for people recently diagnosed with dementia, one for care partners and one for health and social care professionals. These will function to support communicating the diagnosis, post-diagnostic support and planning for the first year post diagnosis. The design and marketing agency have worked closely with research teams and local working groups throughout the co-design process to interpret and build iteratively on each workshop outcome. From this we have successfully produced a generic website that can be tailored in different locations to the three key audiences. Conclusion: In the co-design process, representative users identified the need for a practical, empathetic and individually-tailored resource. The toolkit will be a website that has an individual planning tool for the first twelve months following a dementia diagnosis. We are continuing the co-design process to develop a campaign. This will promote the key messages and toolkit, to plan for a life with dementia, ahead of user testing, implementation and evaluation.

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Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia

Background: Little is known about formal caregivers’ lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long‐term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients’ homes. Objectives: Accordingly, this study aimed to understand the lived experiences of personal support workers (PSWs) regarding their communication with PLWD who live in their own homes. Methods: The study was grounded in a hermeneutic phenomenological research approach. Data were collected as part of the Be EPIC project, an evidence‐informed, person‐centred communication intervention for PSWs caring for PLWD. One, in‐depth semi‐structured interview was conducted with each of the PSWs (N = 15). Thematic analysis was completed on the interviews. Results: Three major themes emerged: (1) Challenged by dementia‐related impairments; (2) Valuing communication in care; and (3) Home is a personal space. Findings revealed that PSWs experience difficulties communicating with PLWD because of dementia‐related impairments, despite PSWs recognizing the importance of communication when they provide optimal care in the homes of PLWD. This suggests that PSWs view communication as a crucial component of quality care but do not possess the skills necessary to ensure effective interactions. Findings also demonstrated the importance, uniqueness and impact of the personal home space on PSWs’ experiences with communication. Conclusion: Overall, findings indicate that PSWs acknowledge the importance of communication as an integral element of providing optimal care, but dementia‐related impairments and the intimate, personal home‐based care context can hinder successful communication between PSWs and PLWD. The implications of the findings are that additional and targeted education and training are required for PSWs, especially on how dementia‐related impairments impact communication within the context of home care based services for PLWD.

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Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial

Background: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. Methods: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator. Discussion: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. Trial registration: International Standard Randomised Controlled Trials Number ISRCTN11425138. Registered on 7 October 2019 

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Empowering dementia carers with an iSupport virtual assistant (e-DiVA) in Asia-Pacific regional countries: Protocol for a pilot multisite randomized controlled trial

Background: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT). Objective: This paper reports the protocol of a pilot RCT evaluating the iSupport VA. Methods: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed. Results: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455). Conclusions: This protocol outlines how a technologically enhanced version of the WHO iSupport program-the iSupport VA-will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions. 

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Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Methods: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.

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Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. Objectives: We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions. 

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Caring for a relative with dementia: Determinants and gender differences of caregiver burden in the rural setting

Background: Dementia is a progressive disease that puts substantial strain on caregivers. Many persons with dementia (PwDs) receive care from a relative. Since male and female caregivers experience different issues related to stress, it is important to meet their different needs to prevent the early nursing home placement of PwDs. Objectives: This study investigated the multifactorial aspects of caregiver burden and explored gender differences in caregiver burden in a rural setting. Methods: This was a cross sectional study that administered anonymous questionnaires to family caregivers of PwDs. Caregiver burden was assessed using the Burden Scale for Family Caregivers—short version. A path model was used to determine the multivariate associations between the variables. To reflect the multifaceted aspects of caregiver burden, we used Pearlin’s model with its four dimensions. Results: A total of 113 family caregivers responded to our survey. The overall burden of caregivers was moderate. According to the path model, gender differences were predictors of caregiver burden. The behaviour of the person with dementia and cohabitation had direct effects on caregiver burden. Conclusions: Our results suggest that the experiences of men and women caring for a PwD are different and highlight the need for tailored support in dementia care. 

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The use of technology by people with dementia and informal carers during COVID-19: a cross-country comparison

Background: Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. Objectives: The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland). Methods: People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis. Results: A total of 141 people with dementia and carers (47 in Italy; 50 in the UK; 18 in Australia; 26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes); 2) benefits of technology (three subthemes); 3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision. Conclusions: These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.

 

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Caregiver identity in care partners of persons living with mild cognitive impairment

Background: Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). Objectives: The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI. Methods: Using constructivist grounded theory (ConGT), this study explored caregiver identity development from 18 in-depth interviews with spouses (n = 13), children (n = 3), and friends (n = 2) of persons recently diagnosed with MCI. Findings: The overarching themes influencing MCI caregiver identity development included MCI changes, care-related experiences, “caregiver” interpretation, and approach/avoidance coping. These themes influenced how participants primarily identified, represented as I am a caregiver, I am not a caregiver, or liminality (i.e., between their previous identity and a caregiver identity). Irrespective of their current self-identification, all conveyed thinking about their “future self,” as providing more intensive care. MCI caregiver identity development in family and friends is a fluid and evolving process. Nearly all participants had taken on care tasks, yet the majority of these individuals did not clearly identify as caregivers. Conclusions: Irrespective of how participants identified, they were engaging in care, and would likely benefit from support with navigating these changes and their new, ambiguous, and evolving roles. 

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Remote primary care consultations for people living with dementia during the Covid-19 pandemic: experiences of people living with dementia and their carers

Background: Covid-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of health care needs to be informed by vulnerable populations, such as people living with dementia. AIM: To understand the remote healthcare experiences of patients living with dementia and their family carers during the Covid-19 pandemic. Methods: Qualitative interviews with community-based patients living with dementia and their carers were carried out between May-August 2020, while the Covid-19 pandemic was ongoing in England. Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis. Results: Three main themes were derived relating to: proactive care at the onset of Covid-19 restrictions; avoidance of healthcare settings and services; and difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise Covid-19 risk or reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia. Conclusions: While remote consultations could be effective, proactive calls could be more structured around needs. Consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure good practice.

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Total cost of care increases significantly from early to mild Alzheimer's disease: 5-year ALSOVA follow-up

Background: We studied the costs of formal and informal care in relation to Alzheimer's disease (AD) progression. Methods: 231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale-Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care. Results: Total cost of care in early stage AD (CDR-SB <= 4) was 16,448(sic) (95% CI 13,722-19,716) annually. In mild (CDR-SB 4.5-9), moderate (CDR-SB 9.5-15.5) and severe (CDR-SB >= 16) AD, the total costs were 2.3, 3.4 and 4.4 times higher, respectively. A one-unit increase in CDR-SB increased the total, formal and informal costs by 15, 11 and 18%, respectively. Conclusions: Compared to early AD, the costs of total, formal and informal care are remarkably higher already in mild AD. This finding emphasises early diagnosis, interventions and family support for persons with AD and their caregivers.

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Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Objectives: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Methods: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia. 

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Exploring the experiences of living with Lewy body dementia: An integrative review

Objectives: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Methods: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. Data sources: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. Review Methods: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. Results: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. Conclusion: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. Impact: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.

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Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective

Background: Family caregivers of persons with dementia often experience a negative impact on their health. More studies based on nursing theories are needed to improve the provision of care. Aims: To describe the care provided by family caregivers of persons with dementia and the impact on their health, as well as to analyse how personal variables of caregivers are related to care tasks and their health impact. Methods: Multi-centric cross-sectional prospective study conducted on a sample of 423 primary family caregivers of persons with dementia from Spain. Data were collected through ICUB97-R questionnaire (January–April 2019), based on the fourteen needs of Virginia Henderson's Nursing Model. Data was analysed through one-way analysis of variance and Student's t-test. Results: The caregiver profile was a middle-aged married woman without higher education living with the cared person, predominantly her mother. The most frequently provided care corresponded to “nutrition” and “movement” needs. Lack of free time, modifications on leisure activities, reduced sleep or rest and disruption of family life emerged as the greatest repercussions on the caregiver's health. The age of the caregiver and time caring showed differences on impact of care and care tasks, respectively. Conclusion: The identification of the types of care provided, the health impact of caring and the variables affecting the family caregiver's vulnerability is essential to develop effective individualised nursing care plans, including health education interventions to improve the quality of life of both caregivers and persons cared for. 

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Designing work with people living with dementia: Reflecting on a decade of research

The United Nations Universal Declaration of Human Rights is widely acknowledged as a landmark document in the history of human rights. Drafted by representatives from all over the world, the declaration was proclaimed by the United Nations General Assembly in Paris on 10 December 1948 (General Assembly resolution 217 A) as a common standard for all peoples and all nations. The declaration sets out a series of articles that articulate a number of fundamental human rights to be universally protected. Article 23 of the declaration relates to the right to work and states that people have a human right to work, or engage in productive employment, and may not be prevented from doing so. The right to work is enshrined in international human rights law through its inclusion in the International Covenant on Economic, Social and Cultural Rights, where the right to work emphasizes economic, social and cultural development. This paper presents ongoing research that highlights how a disruptive co-design approach contributes to upholding UN Article 23 through the creation of a series of innovative working practices developed with people living with dementia. The research, undertaken in collaboration with several voluntary and third sector organizations in the UK, looks to break the cycle of prevailing opinions, traditional mindsets, and ways-of-doing that tend to remain uncontested in the health and social care of people living with dementia. As a result, this research has produced a series of innovative work opportunities for people living with dementia and their formal and informal carers that change the perception of dementia by showing that people living with dementia are capable of designing and making desirable products and offering much to UK society after diagnosis. In this ongoing research, the right to continue to work for people living with dementia post-diagnosis in creative and innovative ways has clearly helped to reconnect them to other people, helped build their self-esteem, identity and dignity and helped keep the person with dementia connected to their community, thus delaying the need for crisis interventions. This paper reports on a series of future work initiatives for people living with dementia where we have used design as a disruptive force for good to ensure that anyone diagnosed with dementia can exercise their right to work and engage in productive and rewarding employment. 

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Valuation of Informal Care Provided to People Living With Dementia: A Systematic Literature Review

Objectives: This study aimed to identify the methods used to determine the value of informal care provided to people living with dementia and to estimate the average hourly unit cost by valuation method. Methods: A literature search in MEDLINE Complete, CINAHL, PsycINFO, EconLit, EMBASE and NHS Economic Evaluation Database was undertaken. Following the screening of title, abstract, and full text, characteristics of eligible studies were extracted systematically and analyzed descriptively. The corresponding hourly cost estimates were converted into 2018 US dollars based on purchasing power parities for gross domestic product. Results: A total number of 111 articles were included in this review from 3106 post-deduplication records. Three main valuation methodologies were identified: the replacement cost method (n = 50), the opportunity cost approach (n = 36), and the stated preference method based on willingness to pay (n = 3), with 16 studies using multiple methods and 6 studies not specifying the valuation method. The amount of informal care increased as the condition of dementia progressed, which was reflected in the cost of informal care. The average hourly unit cost used to value informal care was US $16.78 (SD = US $12.11). Although the unit cost was approximately US $15 per hour when using the opportunity cost method and US $14 when using the stated preference method, the highest unit cost was obtained when using the replacement cost method (US $18.37, SD = US $13.12). Conclusions: Although costs of informal care should be considered when undertaking an economic evaluation or estimating the overall costs of dementia from a policy and priority-setting perspective, further research into applying consistent approaches to valuation is warranted. 

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An individualized telephone-based care support program for rural family caregivers of people with dementia: study protocol for a cluster randomized controlled trial

Background: There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. Objectives: The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China. Methods: A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers’ subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients’ difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well. Discussion: If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China. Trial registration: Chinese Clinical Trial Registry, ChiCTR2000038821, Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268. 

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Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being

Background: Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Methods: Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. Results: A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Conclusion: Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs. 

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Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Background: Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. Objectives: The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Methods: Narrative interviews with 14 carers (n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method. Findings: The result was a relational type formation which comprises different process types: ‘Respect your boundaries, stay calm, but plan ahead’, ‘Acting strategic is making it work’, ‘Reflect the situation, deal with it, and pull it through’ and ‘There is no alternative, you have to live with it’. This typology was based on two related dimensions: the way people negotiate their own needs against the demands of care (prospective, strategic, reflective and limited) and the resulting attitudes towards reconciling informal care and personal life (accepting, withstanding and enduring). Conclusions: The results yield implications for practice, such as considering individual needs and the care network to provide effective support and promoting the importance of self-care behaviours to achieve a balance between care and personal life. 

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A socially prescribed community service for people living with dementia and family carers and its long‐term effects on well‐being

Background: Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. Objective: The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. Methods: People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick‐Edinburgh Mental Well‐Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants’ socioeconomic background. Data were analysed using paired samples t‐tests to compare well‐being scores between baseline and follow‐up assessments. Results: A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3‐ and 6‐month follow‐up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well‐being was significantly higher at both follow‐ups. Conclusions: This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country.

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What support does a mobile, assistive app provide for informal caregivers? A qualitative analysis of the MoCaB app user experience

Background: In the joint project "Mobile Care Backup'' funded by the German Federal Ministry of Education and Research, the smartphone-based app "MoCaB'' was developed in close cooperation with informal caregivers. It provides individualized, algorithm-based information and can accompany and support caring relatives in everyday life. After a multi-step development, informal caregivers tested the MoCaB app in a home setting at the end of the research project. Objectives: The goal was to find out how the test persons evaluate MoCaB and in which form the app can provide support to informal caregivers. Methods: Eighteen test persons caring for relatives participated in a four-week test of MoCaB. Guideline-based qualitative interviews to record usage behavior and experiences with the app were conducted after two and four weeks of testing, transcribed and analyzed using qualitative content analysis. Results: The test persons described the care-related information as helpful. The individualized, algorithm-based mode of information delivery and the exercises provided for family caregivers were generally rated as helpful, but their use depends on the individual usage style. Three dimensions can describe the effects of MoCaB: 1) expansion of care-relevant knowledge, 2) stimulation of self-reflection, and 3) behavior towards the care recipients. Discussion: With few exceptions, the testing caregivers felt that the MoCaB app was enriching. The support dimensions have an effect at different points in everyday life and vary in intensity, depending on the duration of the existing care activity and the individual preferences of the users. Conclusion: The way in which caregivers used the app was not always consistent with the expected behaviors. This demonstrates the relevance of open-ended, qualitative research methods in the evaluation of health apps.

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A qualitative exploration of how gender and relationship shape family caregivers’ experiences across the Alzheimer’s disease trajectory

Background: Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. Objectives: This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease. Methods: Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer’s disease were interviewed using a semi-structured interview guide. Findings: Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Conclusions: Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered. 

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Family carers’ narratives of the financial consequences of young onset dementia

Background: Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. Objective: The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Methods: Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Findings: Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Conclusions: Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports. 

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Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Background: In order to provide improved care provision, integrated care services are being developed. However, little is known about how people living with dementia, their families and healthcare professionals experience integrated care. Therefore, the purpose of this review of the qualitative literature was to examine the experiences and perceptions of integrated dementia care. Methods: This qualitative review synthesised findings from included studies identified from a comprehensive literature search. Searches included: five electronic databases, journal handsearching, and reference list searching of relevant literature reviews and the final included studies. Findings: Three overarching themes were identified: 1) Ways of working which facilitate the delivery of integrated dementia care; 2) Informal carers as equal partners in care provision and decision making; and 3) Challenges leading to fragmented and disjointed integrated dementia care. For integrated care to be successful, communication and collaboration between healthcare professionals, and the involvement of informal carers is needed. Multidisciplinary teams and employing case managers to coordinate care provision can improve communication and collaboration. However, distrust between healthcare professionals and a lack of a central database to access and share information often hinders the development of integrated dementia care service provision. Conclusion: Integrated dementia care can be successful and well received by people living with dementia and their families when certain conditions are met. However, given the negative consequences fragmented and disjointed care can have on people living with dementia and their families, action is needed to further support the development of integrated dementia care services. 

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A complex intervention to promote prevention of delirium in older adults by targeting caregiver’s participation during and after hospital discharge – study protocol of the TRAnsport and DElirium in older people (TRADE) project

Background: Among potentially modifiable risk factors for delirium, transfers between wards, hospitals and other facilities have been mentioned with low evidence. TRADE (TRAnsport and DElirium in older people) was set up to investigate i) the impact of transfer and/or discharge on the onset of delirium in older adults and ii) feasibility and acceptance of a developed complex intervention targeting caregiver’s participation during and after hospital discharge or transfer on cognition and the onset of delirium in older adults. Methods: The study is designed according to the guidelines of the UK Medical Research Council (MRC) for development and evaluation of complex interventions and comprises two steps: development and feasibility/piloting. The development phase includes i) a multicenter observational prospective cohort study to assess delirium incidence and cognitive decline associated with transfer and discharge, ii) a systematic review of the literature, iii) stakeholder focus group interviews and iv) an expert workshop followed by a Delphi survey. Based on this information, a complex intervention to better and systematically involve family caregivers in discharge and transport was developed. The intervention will be tested in a pilot study using a stepped wedge design with a detailed process and health economic evaluation. The study is conducted at four acute care hospitals in southwest Germany. Primary endpoints are the delirium incidence and cognitive function. Secondary endpoints include prevalence of caregiver companionship, functional decline, cost and cost effectiveness, quality of discharge management and quality of admission management in admitting hospitals or nursing homes. Data will be collected prior to discharge as well as after 3, 7 and 90 days. Discussion: TRADE will help to evaluate transfer and discharge as a possible risk factor for delirium. In addition, TRADE evaluates the impact and modifiability of caregiver’s participation during patient’s transfer or discharge on delirium incidence and cognitive decline providing the foundation for a confirmatory implementation study. Trial registration: DRKS (Deutsches Register für klinische Studien) DRKS00017828. 

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The emotional experience of caregiving in dementia: Feelings of guilt and ambivalence underlying narratives of family caregivers

Objective: The aim of this study was to explore narrative domains of family caregivers’ emotional experiences, beyond intentional and explicitly reported contents, and to examine their associations with subjects defining characteristics, such as gender, kinship, duration of caregiving, and burden levels. Methods: The study participants were 17 Italian family caregivers (88.23% women) with a mean age of 59.14 years (SD = 7.76), who provided their loved ones affected by dementia with in-home care. Structured interviews and Caregiver Burden Inventory were administered according to a mixed method design. A computer-aided text analysis was used which allowed the detection of shared narrative domains (cluster analysis) and latent factors organizing the contraposition between them (multiple correspondence analysis). Findings: Five narrative domains emerged which were respectively referred to as perceived formal support (14.38% of the overall textual corpus), devotion (33.56%), anger (13.70%), sense of loss (18.49%), and feeling of uncertainty (19.86%). Kinship, duration of caregiving, and burden levels were differently associated with such domains. Two latent factors dealing with feelings of guilt and ambivalence explained 62.92% of overall data variance. Conclusion: Guilt feelings should be carefully taken into account in support intervention with caregivers, with specific regard to stress and anger management. As well, a greater focus on caregivers’ emotion regulation and on the promotion of their problem-solving skills is needed when faced with contrasting beliefs about care decisions or role conflicts. 

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The moderating role of perceived social support on early maladaptive schemas and well-being for primary caregivers of dementia patients

Objective: This study aims to investigate the moderating role of perceived social support on early maladaptive schemas and well-being for primary caregivers of dementia patients. Method: Ninety-nine adult children as the primary caregivers of dementia patients participated in the study. They completed the measures of Young Schema Questionnaires-Short Form 3 (YSQ-SF3), Caregiver Well-Being Scale, and Multidimensional scale of perceived social support (MSPSS). Results: According to the results of the regression analyses, total perceived social support and perceived social support from significant others moderated the association of early maladaptive schemas and caregiver well-being-basic needs, unlike the perceived social support from family and perceived social support from friends. For the early maladaptive schemas and caregiver well-being-activities of living association, however, the moderator roles of total perceived social support and perceived social support from different sources were not confirmed. Conclusion: Since caregiving has negative effects on caregivers, it is important to identify the protective factors. The findings emphasize the buffering role of perceived social support from significant others, especially in terms of meeting basic needs, in the caregiving process.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Objectives: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic. 

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Tensions in support for family caregivers of people with dementia in Singapore: A qualitative study

Background: Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers. Method: To understand family support among primary caregivers in Singapore, 24 semi-structured interviews were conducted. Thematic analysis found four themes: excuses for lack of physical support for the caregiver, tensions between cultural expectations of caregiving and the provision of support, unmet emotional support, and lack of awareness of dementia and caregiving needs. Findings: Caregivers rationalized and forgave the absence of physical support but were frustrated when the lack of support impacted people with dementia. This was seen as a lack of fulfilling cultural obligations of caring for elderly parents. The caregivers also felt frustrated with the lack of emotional support provided to them, but these were unspoken between the caregiver and the family members. Insufficient and unhelpful support giving was exacerbated with the perception of family members’ limited understanding of the demands of caregiving. Conclusion: The findings offer four practical suggestions to address unmet support needs. First, public education is needed to enhance general knowledge about the symptoms and progression of dementia. Second, help is needed to address miscommunication about support within the family. Third, the development of guidebooks is needed to help family caregivers communicate with family members about their various support needs. Fourth, the relationship between cultural expectation and caregiving must be understood within the context of modernity and urbanism. 

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Stress and Depression in Family Members of Patients with Dementia in Urban and Rural Communities: Cross-Sectional Surveys in Korea

Background: Re compared the associations of socioeconomic factors with stress and depression among family members living with a dementia patient in urban and rural areas of South Korea. Methods: Data were collected from 9,730 (4,560 urban and 5,170 rural) participants in the Korean Community Health Survey from 2014-17. The variable of interest was the presence of a cohabitating dementia patient, and the dependent variables were stress and depression. Results: Family members living with a dementia patient in rural areas had a significantly lower socioeconomic status (education, household income, marital status, and employment) than those living in urban areas (p<0.001). In addition, family members living with a dementia patient in rural areas reported statistically significantly less stress and depression than did those in urban areas after adjusting for related factors(rural stress OR=0.87, 95% CI=0.80-0.95; rural depression OR=0.75, 95% CI=0.66-0.85). Female gender and a low family income were associated with stress and depression in both rural and urban areas. Age, educational attainment, number of family members, marital status, and employment status differed slightly between urban and rural areas. Conclusion: The socioeconomic factors associated with stress and depression differ slightly in the rural and urban areas of South Korea.

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Psychosocial outcomes of dyadic arts interventions for people with a dementia and their informal caregivers: A systematic review

Background: Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts‐based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these findings. Methods: A systematic literature review was conducted to investigate psychosocial outcomes of dyadic arts interventions. PsychINFO, Medline, Web of Science and ASSIA databases (from journal inception to March 2020) were searched as well as Google Scholar and reference lists of relevant studies were searched. Interventions were delivered to people with dementia and their caregivers in community‐based settings across five countries. Findings: Thirteen peer‐reviewed journal articles met the criteria for inclusion in this review, six focusing on performing arts and seven on visual arts. The findings suggested that choral singing and visual arts interventions may have positive effects on psychosocial outcomes for both people with dementia and their informal caregivers. Improved well‐being, quality of life, mood, enhanced identity and decreased social isolation were found in some studies. Importantly, across all studies, participants reported enjoying arts activities. This is the first review to systematically assess dyadic arts activities in a dementia context. These activities offer enjoyable and engaging experiences for many person with dementia and caregivers and were generally found to have positive results but mostly small sample size, lack of control groups and different outcome measures made comparisons challenging. Conclusions: Future research recommendations include further theoretical development, identifying key intervention components, and specifying relevant and measurable theoretically informed outcomes within dyadic interventions for this population.

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Dementia care in China: Challenges and recommendations

Background: In China, approximately 84.9% of people with dementia are cared for by family caregivers. Health professionals working in the departments where people with dementia are cared for in public tertiary hospitals are the primary sources to offer a formal diagnosis and treatment to people with dementia in China. Objective: The aim of this study was to explore family caregivers' expectations on dementia care, and the dementia knowledge and attitudes of health professionals in China. Method: Mixed method was used to collect data from April to December 2019. Surveys were used to evaluate health professionals' (n=603) dementia knowledge and attitudes in eleven public tertiary hospitals in Hebei Province in China. Semi-structured interviews were conducted in three public tertiary hospitals where family caregivers of people with dementia (n=21) were recruited. Result: The health professionals demonstrated limited knowledge of dementia and a low level of positive attitude. They expressed that it was challenging to communicate with people with dementia and to cope with their symptoms. Family caregivers reported that they received limited support from the community, hospital, and society and they held little hope of receiving such support. Most of the caregivers expected more financial support from the government, and more training in dementia care from health professionals. They also expressed their desire to have a professional caregiver in the nursing homes to provide optimal dementia care for their relatives. Conclusion: Health services in China are inadequately prepared to deal with the challenges of dementia care. More emphasis is needed on specialized education and training for caregivers and health professionals to improve their knowledge and to modify their attitudes. Family caregivers expected more support from the health system to enable improved care for people with dementia. An integrated health system for dementia care is needed in China. 

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Choral Singing Enriches Everyday Life for People With Mild to Moderate Dementia and Their Family Caregivers

Background: Dementia causes substantial suffering for affected persons and their family caregivers. Because no cure is available, it is important to investigate how alternative therapies can improve life for these individuals. Methods: For the current study, persons with dementia (PwD) were recruited from a specialized Memory Clinic in Sweden to engage in a choral singing intervention for 1 hour per week for four semesters. PwD were encouraged to bring a family caregiver to the sessions; both were interviewed and data were analyzed using qualitative content analysis. Findings: The choral singing intervention appeared to become an important social context for PwD and family caregivers and had a positive impact on relationship, mental well-being, mood, and memory. The intervention appeared to act as an enriched environment for all participants. Conclusions: Choral singing interventions for PwD and their family caregivers is a simple means to create a social context and improve general well-being. 

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Typologies of Dementia Caregiver Support Networks: A Pilot Study

Background and Objectives: There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods: We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members' support to the caregiver and help to the care recipient. Results: We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications: This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

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Carers’ experiences of assistive technology use in dementia care: a cross sectional survey

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life. Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions. Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores. Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia. 

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Assessing psychosocial interventions for informal caregivers of older people with early dementia: A systematic review of randomized controlled evidence

Background: Dementia affects not only the patients, but also the caregivers. Timely targeted supporting for informal caregivers of people with dementia can improve their health and life quality, as well as contribute to sustainable healthcare. However, which interventions could efficiently support them and why still remains unclear. Objectives: This systematic review aims to close this gap by critically assessing the current state of randomized controlled evidence concerning informal caregivers of older people with early dementia. Methods: We searched the electronic databases PubMed, CINAHL, Embase, Cochrane and Web of Science and assessed the methodological quality of the selected studies using the validated PEDro scale. A total of 2067 studies were identified in the initial searching, and 29 randomized controlled studies were finally selected based on the rigorous inclusion and exclusion criteria. Conclusions: Through completely assessing the methodological quality of studies, and the essentials and effectiveness of the 22 different types of interventions, we identified which interventions were effective and why. Timely targeted interventions for this caregiver group remains scarce. Furthermore, we highlight that there is a lack of systematic caregiver needs assessments prior to or when delivering the interventions. 

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A qualitative investigation into family carers' experiences of living with/caring for a person with young-onset dementia

Background: Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Methods: Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Findings: Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.

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A Biopsychosocial-Ecological Framework for Family-Framed Dementia Care

Background: The biopsychosocial model has been applied through collaborative care dementia models to the diagnosis, symptom management, and treatment of dementia with a focus specifically on the person with dementia. Because individuals with dementia are increasingly dependent upon others particularly as the illness advances, dementia care requires the involvement and commitment of others, usually family, along with support from community-based resources. Hence, the quality and effectiveness of a person's dementia care are shaped in large part by the foundation of family relationships and the social and community networks in which they are embedded. While most current dementia care models incorporate biopsychosocial principles and recognize the essential role that family members play as caregivers, they fail to consider a patient's family system and relationships as potential risk factors or social determinants for care outcomes. Objective: This paper introduces a biopsychosocial-ecological framework to dementia care that is person-centered and “family-framed” in that it targets factors that influence care considerations at both the individual and relational levels of the social ecological networks that the patient and their family members occupy. Method and Findings: We use this model to illustrate how current dementia care practices tend to focus exclusively on the individual patient and caregiver levels but fail to identify and address important relational considerations that cut across levels. Conclusions: We call for the need to add assessment of family relational histories of persons with dementia and family members who care for them in order to better meet the needs of the patient and the caregiver and to prevent harm. This model accentuates the need for interprofessional education on family assessments and caregiver-centered care, as well as interdisciplinary, collaborative models of dementia care that assume more accountability for meeting the needs of family caregivers in addition to those of persons with dementia. 

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“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Methods: Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results: Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions: In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

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"The Dementia Diva Strikes Again!": A Thematic Analysis of How Informal Carers of Persons with Dementia Use TikTok

Background: Informal carers of persons with dementia often resort to social media to alleviate their sense of social isolation and cultivate their platform to share their experience in care. Methods: The present study performed a preliminary analysis on how TikTok creators share their personal experience caring for a loved one with dementia through content shared under the hashtag #dementiacaregiver. We performed a systemic review and inductive thematic analysis of 447 TikTok posts. Findings: The content under #dementiacaregiver was interpreted to form five primary themes: (1) realities of caregiving, (2) a little levity, (3) advice for caring, (4) engagement with viewers, and (5) sensory stimulation. Conclusions: TikTok seems to have provided carers with a tool for artistic and social expression that fostered a sense of community and a place for remote belonging.

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“A World Upside Down”: Experiences of Informal Caregivers During the COVID-19 Pandemic

Background: The caregiving process may result in negative outcomes for caregivers. The coronavirus disease 2019 pandemic has contributed additional challenges for family caregivers of older adults with chronic illnesses. Little is known about the additional impact of the pandemic on caregivers. Objectives: The purpose of the current study was to understand the effects of the pandemic on the caregiving experience. Methods: A qualitative descriptive content analysis was conducted on nine blogs of caregivers of older adults. Blogs were identified using purposive sampling. Bloggers were American, middle-aged, and caring for an older adult with dementia. Findings: Caregivers reported “a world upside down” and change that contributed to uncertainty; the need for support; and how isolation, depressive symptoms, and threat contributed to negative psychological well-being. Managing and struggling in response to caregiving challenges and wishing for resolution were also reported. Conclusions: Blogs of caregivers of older adults with chronic illness yielded important information that may be useful to clinicians. 

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Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD)

Background: Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40–75% of the total dementia cost exceeding formal care time and medical costs. Objective: To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving. Methods: The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies. Results: Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs. Conclusion: The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups. PROSPERO registration: CRD42021226388. 

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What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Background: In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. Objectives: This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Methods: Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. Results: In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the 'client'. Rather than focusing on the HCWs' work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered 'character' and 'innate' caring abilities to be more important than those derived from training. Conclusions: The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

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Wearable Devices for Assessing Function in Alzheimer's Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers

Background: Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for monitoring and understanding function. However, human factors for its acceptance are relatively unexplored. Objective The Public Involvement (PI) activity presented in this paper aims to capture the preferences, priorities and concerns of people with AD and their caregivers for using monitoring wearables. Their feedback will drive device selection for clinical research, starting with the study of the RADAR-AD project. Method: The PI activity involved the Patient Advisory Board (PAB) of the RADAR-AD project, comprised of people with dementia across Europe and their caregivers. A set of four devices that optimally represent various combinations of aspects and features from the variety of currently available wearables (e.g. weight, size, comfort, battery life, screen types, water-resistance and metrics) was presented and experienced hands-on. Afterwards, sets of cards were used to rate and rank devices and features and freely discuss preferences. Results: Overall, the PAB was willing to accept and incorporate devices into their daily lives. For the presented devices, the aspects most important to them included comfort, convenience and affordability. For devices in general, the features they prioritized were appearance/style, battery life and water resistance, followed by price, having an emergency button and a screen with metrics. The metrics valuable to them included activity levels and heart rate, followed by respiration rate, sleep quality and distance. Some concerns were the potential complexity, forgetting to charge the device, the potential stigma and data privacy. Conclusions: The PI activity explored the preferences, priorities and concerns of the PAB, a group of people with dementia and caregivers across Europe, regarding devices for monitoring function and decline, after a hands-on experience and explanation. They highlighted some expected aspects, metrics and features (e.g., comfort and convenience), but also some less expected (e.g. screen with metrics).

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Virtual support group for family caregivers of elderly people with dementia in the COVID- 19 scenery

Introduction: The physical, mental and social status of family caregivers and their care demands have been largely overlooked. This fact has been no different during the COVID-19 pandemic. Therefore, home care will need updates for this new pandemic context, prioritizing the provision of personalized guidance for family caregivers. Objective: To minimize the impact on the mental health of family caregivers of people with dementia through the virtual support group for family caregivers. Method: The research was developed from the performance of support groups for family caregivers in dementia in the virtual format. The meetings were weekly, lasting 2 hours and the themes were worked out according to the group's demands. All meetings were recorded, transcribed, and analyzed using thematic content analysis. Results: In the 8 meetings, 10 family caregivers participated and 5 thematic categories were identified: technology; the routine in the COVID-19 pandemic; behavioral changes and their relationship with the caregiver's mental health; the support network as a health marker; and the new way of carrying out meaningful activities. Conclusion: The support group in the virtual format proved to be a powerful tool for accessing information and guidance concerning dementia, about family care and actions aimed at the caregiver's self-care, with an impact on their emotional state and well-being, minimizing the feeling of social isolation during the COVID-19 pandemic.

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Valuing the caregiver: a feasibility study of an acceptance and commitment therapy (ACT) group intervention for dementia caregivers

Purpose: This study aims to investigate the feasibility and acceptability of a new group intervention, using an acceptance and commitment therapy (ACT) approach, developed for dementia caregivers. Preliminary data regarding the effectiveness of the intervention was also collected. Design/methodology/approach: A quasi-experimental design is used involving pre- and post-intervention data from four different intervention sites, along with three-month follow-up data. Data on attendance, attrition and qualitative feedback was also collected as an indication of acceptability. A total of 23 people currently caring for a family member with dementia attended the ACT group intervention for five sessions. Detailed evaluation forms were collected at the end of each group, along with four self-report questionnaires: Zarit Burden Interview, Positive Aspects of Caregiving Scale, Dementia Management Strategies Scale and Experiential Avoidance in Caregiving Questionnaire. Findings: Findings indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. These changes were not reflected in the outcome measures, with only one change reaching statistical significance (reduction in “intolerance of negative thoughts and emotions towards the relative”). Suggestions are made regarding possible alternative outcome measures for future studies to capture participants’ experience more fully, along with potential adaptations and future directions for the intervention. Originality/value: This study provides preliminary evidence of the acceptability and feasibility of a group therapeutic intervention based on ACT for informal caregivers of dementia.

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Validity and reliability of the Spanish caregiver reaction assessment scale for caregivers of people with dementia

Aim: Of the few instruments available to measure the important, positive aspects of caring, the Caregiver Reaction Assessment is regarded as the most suitable, but there is no validated Spanish version. The aim of this study was to translate the Caregiver Reaction Assessment into Spanish and assess its psychometric properties. Methods: The Caregiver Reaction Assessment was translated into Spanish and then back translated. Validation included construct validity, criterion validity and reliability: 287 interviews were conducted with informal caregivers of patients with dementia between November 2010 and April 2012. Results: Principal component analysis confirmed the original instrument's five subscales. Criterion validity showed a moderate negative correlation between the impact on health and the EQ‐5D (r = −.43), that is, a greater impact on health correlated with lower health‐related quality of life. The Caregiver Reaction Assessment showed good internal consistency, with a Cronbach alpha of .804, and good temporal stability for the distinct subscales, with intraclass correlation coefficients varying from .683 to .729 (p < .001). Conclusion: The Caregiver Reaction Assessment is a reliable, valid instrument for the measurement of the reactions of informal caregivers of patients with dementia, with good psychometric properties.

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Use of complementary medicines and lifestyle approaches by people living with dementia: Exploring experiences, motivations and attitudes

Background: Lack of effective treatments for chronic conditions is associated with high rates of complementary medicine (CM) use. However, little is known about CM use for dementia.Aims and Objectives: The aim of this study was to explore the experiences, motivations, and attitudes towards CM use by people living with dementia in an Australian setting. Design: This study had a qualitative research design; quantitative demographic information was also collected. Methods: In‐depth interviews were conducted with people living with dementia and their caregivers (N = 18). A thematic (inductive) analysis approach was taken to interpret data. Results: Three in four participants used CM for dementia, spending ~AUD$100/month (USD$70/month). Within three overarching themes, a range of sub‐themes was identified: (1) CM knowledge and use: people living with dementia and caregivers understanding of CM, types of CM used, and CM usage patterns; (2) Self‐determined reasons for use/non‐use: maintain or improve quality of life, hope, management of dementia symptoms, level of awareness, willingness and evidence, perceptions on efficacy and safety of CM, experiences of conventional medicine, and holistic approach to wellness; (3) External determinants of use: information on CM, relationship influences on CM use, and experiences with General Practitioners (GPs) and CM. Conclusion: Findings highlight that CM use is widespread and positively viewed by people living with dementia and their caregivers. Decisions regarding CM use were based on personal opinions. Findings have important implications for conversations with health professionals regarding CM use by people living with dementia to improve communication, health literacy, and reduce the risk of adverse effects through polypharmacy. Implications for Practice: This study showed that CM is a valued approach for dementia management by people living with dementia, their families, and healthcare providers. Future international research is required to evaluate the efficacy and safety of these approaches and promote accurate advice in nursing care.

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What is the present role for general practitioners in dementia care? Experiences of general practitioners, patients and family carers in Portugal

Background: Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. Objective: The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs' contribution to dementia care. Methods: A qualitative interview study of participants recruited from six practices in different social contexts within the Lisbon metropolitan area was carried out. Purposive sampling was used to recruit GPs, persons with dementia and carers. Interviews with GPs explored dementia care comprehensiveness, including satisfactory and challenging aspects. Interviews with patients and carers explored the experience of talking to GPs about cognitive impairments and related difficulties and the type of help received. Thematic analysis of interview transcripts was carried out using the framework approach. Results: Five major themes were identified: GPs have a limited contribution to dementia care, the case of advanced dementia, doctor–patient relationships, doctor–carer relationships and management of chronic conditions other than dementia. Conclusion: General practitioners seemed to contribute little to dementia care overall, particularly regarding symptom management. The exception was patients with advanced stages of dementia, given that specialists no longer followed them up. Remarkably, GPs seemed to be alone within primary care teams in providing dementia care. These findings strongly suggest that Portuguese primary care is not yet prepared to comply with policy expectations regarding the management of dementia.

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Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior

Background and objectives: Family caregivers of people with dementia experience high burden making medical decisions for their loved ones. Undertaking Advance Care Planning (ACP) can help reduce burden and stress. Having experiences making medical decisions for someone else may influence the way people make decisions for themselves. Therefore the aim of this study was to assess the willingness of family caregivers of people with dementia to undertake ACP for themselves, using the Theory of Planned Behavior. Research design and methods: Face-to-face interviews were conducted with 195 family caregivers of people with dementia. A structured questionnaire was used to assessed participants' attitudes, subjective norms, perceived control, anticipated regret, the wish to prolong life and caregiver burden. Hierarchical regression analysis was performed to test the contribution of the variables to the willingness to undertake ACP. Results: Overall, participants expressed moderate willingness to undertake ACP. Among the various options for undertaking ACP, the highest willingness expressed was to appoint a durable power of attorney and the lowest willingness was to have informal conversations with their doctor. The hierarchical regression revealed that attitudes, subjective norms and anticipated regrets were main determinants of the willingness to undertake ACP. Discussion and implications: Interventions should be developed to encourage family members to undertake ACP for themselves, which emphasize the advantages of the process and involve significant others in the formal and informal aspects of ACP.

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'You become their advocate': The experiences of family carers as advocates for older people with dementia living in residential aged care

Aims: The aim of this study was to identify features of well‐performing residential aged care services (RACS) as experienced by family carers. Background: Family carers can have an integral role in residential aged care providing social support and are well‐placed to engage with staff and monitor care. Design: A qualitative descriptive design was used. Semi‐structured face‐to‐face and telephone interviews were conducted with family carers of current or past residents of Australian RACS between November 2018 and January 2019. Interview transcripts were analysed thematically. Results: Rather than reporting features of well‐performing RACS, participants shared stories of sub‐standard care, dysfunctional management and poor resident–staff–family interactions. An overarching theme emerged of 'having to be an advocate' for residents' needs, which covered four major categories: organisational accountability (including transparency and individualised care), good communication, connection and trust. Combined, these constitute what carers perceive are the necessary conditions for determining the features of a well‐performing RACS. Conclusion: Family carers need to feel confident and trust RACS staff when they hand over the role of carer for their relative with dementia. Relevance to clinical practice: This study provides insight into the needs and challenges of family carers when they relinquish the care of an older relative with dementia. Strategies to build confidence and trust between RACS and family carers are essential. Aged care nurses can play a pivotal role to support this through the development of open communication and relational connections with residents and their families.

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A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background: An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia. Objectives: The aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver. Methods: The study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study. Results: Three types of caregiving spouses were identified: “The Caring Partner”, “The Worried Manager” and “The Desperate Overburdened”. These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions. Conclusions: The development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice. Trial registration The TIGER study was registered with clinicaltrials.gov: NCT03513159. Registered on April 17, 2018.

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The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background

Background: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. Methods: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach’s alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. Results: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach’s alpha: 0.94). The CFA indicated that the factor ‘Self-perceived Pressure from Informal Care’ explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). Conclusions: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

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Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver–staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.

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Transforming lived places into the connected neighbourhood: a longitudinal narrative study of five couples where one partner has an early diagnosis of dementia

Background: To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. Methods: This longitudinal narrative research aimed to uncover the meaning, construction and place of neighbourhood in the lives of people with dementia and their care partners through a participatory approach. Five couples, where one partner had an early diagnosis of dementia and capacity to consent, participated in the (up to) one-year mixed qualitative method study. During this time-frame, 65 home visits were conducted, resulting in over 57 hours of interview data alongside the development of other artefacts, such as neighbourhood maps, photographs, diaries and field notes. Narrative analysis was applied within and across the data-sets. Findings: This led to the emergence of three themes to describe a connected neighbourhood. First, 'connecting to people' is about the couples' connections with family members, friends and neighbours through a sense of belonging, group identification and responsibilities. Second, 'connecting to places' shares the couples' emotional and biographical attachment to places. Third, 'connecting to resources' refers to the couples actively seeking support to live independently and to retain neighbourhood connections.

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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 att