The following resources examine ageing carers and their needs.
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Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.
Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:
1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.
2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.
3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.
4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.
There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care.
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent-living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.
Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.
Background For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged >= 60 years. Methods The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skane during 2001-2004. Participants aged >= 60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors. Results Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers. Conclusion Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.
This study aimed to know the factors associated with quality of life (QOL) of elderly caregivers diagnosed with Alzheimer's disease from the perspective of these individuals. It was a descriptive study with qualitative approach based on the Collective Subject Discourse method. Twenty elderly caregivers diagnosed with Alzheimer's disease participated, during a month, in the period the month September 18 to October 18, 2017. Data collection was done through interviews with caregivers of elderly with Alzheimer's disease. The questions were asked and recorded on tape recorder, with the permission of the interviewee. Data were analyzed by the Descending Hierarchical Classification (DHC). Five classes were obtained: Quality of life concept for the elderly caregiver; Behavior of the elderly with Alzheimer; Memory problems in the elderly and repercussions on the caregiver's work; Change in family caregiver lifestyle; and Repercussion of "being a caregiver" in the quality of life. QOL was related to a range of factors (emotional, physical, financial, disease state in the elderly and the degree of knowledge of the caregiver about the disease). Caregivers have pointed out that non-harmony between these factors can be crucial to affect your personal and professional life as well as your QOL.
Objective: to identify factors associated with depressive symptoms in elderly caregivers with chronic pain.; Method: the study included people 60 years of age or older who reported chronic pain and cared for another elderly person living in the same household (n=186). Statistical analyzes were performed using the Mann-Whitney test, univariate and multiple logistic regression.; Results: most participants had no depressive symptoms (70.4%), 24.2% had mild depressive symptoms and 5.4% had severe symptoms. Univariate analysis showed that the variables family income, number of diseases, number of medications in use, pain intensity, overload and perceived stress were associated with depressive symptoms. Multivariate analysis found an association with perceived stress (95% CI 1.101-1207) and number of medications (95% CI 1.139-1.540) in use.; Conclusion: factors associated with depressive symptoms in elderly caregivers with chronic pain were stress and the number of medications in use.
Consistent with the long history within Psychology and Aging of publishing high impact articles on family caregiving, the current Special Section includes 5 articles that provide important advances, in knowledge and in methodological sophistication, to the study of cognitive difficulty, impairment and family caregiving. One study used daily diary data over 14 days to conduct microlongitudinal analyses of the prospective impact of everyday memory failures on negative affect and marital interactions in older couples. Also relying on dyadic data, 2 other articles addressed the impact of caregiving on family members, including a study of the effects of transitioning to family caregiving over time on well-being in older husbands and wives, and a comparison of primary and secondary caregivers. Together, these articles represent important methodological advances in terms of the use of longitudinal data to study the effects of transition to cognitive impairment and spousal caregiving within the couple, and the inclusion of multiple caregivers to illustrate the impacts of caregiving in the broader family. In addition, two articles examined issues in clinical intervention for caregivers. Both articles offer new insights about the effectiveness of caregiver interventions, with the former focusing on the relative merits of offering intervention components in a flexible way over the manualized approach, and the latter a comprehensive systematic review and meta-analysis to tease out the relative utility of different intervention characteristics and approaches, with a new lens to look at psychoeducational programs. The implications of these articles for family caregiving and further research advances are discussed.
In Rwanda, disruptions to family and social life as a result of the 1994 genocide, and the economic transformations in its aftermath, have complicated the fabric of elder care across the country. In this article, I focus on how elderly Rwandans are reconfiguring their care networks - many of which were destroyed during the genocide - by acting as caregivers and care receivers for each other on a daily basis. Although emotionally and physically taxing, elderly Rwandans emphasize that the "small things" embedded in the giving and receiving of care are intricately connected to how personal and collective dignity is cultivated.
Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an “ideal type,” these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families “where they are” in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as “stress” and “burden” and exacerbates the very real threat to social disenfranchisement.
A significant number of informal carers look after people who have dementia. Women's caring experiences are well documented. However, a substantially smaller amount of research exists specifically investigating the male carer perspective. This literature review explores older husbands' experiences of caring for their wives who have dementia. The findings suggest that husbands are committed to their caring role but can feel socially isolated. The caring role of older men has altered the dynamic in the marriage. Husbands continue to show commitment towards their spouses but feel that male-only support groups could offer some respite from their responsibilities. Nurses need to take time to listen to husbands' experiences, offering emotional support and signposting them to other services. Further research on the long-term effects and support needs of older male carers is needed.
Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin's Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care.
Population aging is driving a process of increase in long-term care needs in Chile and many countries around the world. In this context, this article asks about the consequences of this increase in informal caregivers, emphasizing the inequity issues arising from these changes. Using the CASEN 2017 survey, caregivers are identified and matched to people with long-term care needs. Results show that most caregivers are women, and a large fraction of them are also elderly; this is similar to what has been found previously in developed countries. Caregivers have fewer opportunities than non-caregivers, which translates into lower income-generating ability and higher poverty. The nature of these tasks creates a vicious cycle in which people get trapped with increasing needs and fewer resources to meet them. Important differences arise between caregivers and the rest of the population. Even more concerning is that these disparities are avoidable to some extent, adding an equity dimension to the problem. This emphasizes the need for the generation of policies that will support caregivers and meet their needs.
The UN General Special Assembly on HIV/AIDS reported that Thailand's elderly are living on the edge of poverty. Those who become caregivers for the children who have been orphaned by AIDS incur even greater challenges. The 2007 Survey of Older Persons of Thailand (SOPT) concluded that there is a range of financial and social safety nets provided by the government, nongovernmental (NGO), and faith-based organizations (FBOs) to help the elderly caregivers and their families. The research offered limited studies on Thailand's elderly caring for these children. The purpose of this phenomenological study was to explore the social, religious and familial experiences of this population. In-depth interviews were conducted with 14 elderly caregivers participating in the Grandma Cares Program (GCP) located in the province of Chiang Mai. They were asked about their caregiving experiences, cultural and Buddhist beliefs, and programs that help them. Data were verified through member checking with a translator. The details of the caregivers' experiences and environments were transcribed and analyzed with Creswell's 6-step process to identify textural and structural themes and patterns. Results of this study indicated that caregivers gained comfort and strength from Buddha's teachings and cultural beliefs, but they would like more support.
Informal care-givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care-giver is known to be associated with poorer health and well-being, and lesbian and gay care-givers report experiences of stigma and discrimination in the care-giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care-givers. We compared care-givers to non-caregivers on a range of health and well-being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care-givers who were caring for an LGBTI person to those who were caring for a non-LGBTI person. Among the lesbian women, care-givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care-givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well-being compared to those caring for a non-LGBTI person. Overall, results from this study suggest that older lesbian and gay care-givers may be facing some challenges related to their well-being and feeling supported, especially if they are caring for another LGBTI person.
Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified.
Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants' self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings.
Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future. The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland's largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs.
Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the 'CHESS' research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman's correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.
Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers' experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare's (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men's experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers' experience to develop more inclusive supports and consequently increase service uptake
Since 2002, thanks to extensive lobbying and representation by the family carers movement, there has been a formal state-endorsed approach to quantifying the number of individuals in the Republic of Ireland who are providing unpaid care to a relative or friend. Initially, the Census of Population provided this data every five years. More recently a number of other large-scale surveys have been undertaken in an attempt to capture the prevalence of family caring in Ireland. This document seeks to summarise this new data and draws on the population data published by the Central Statistics Office in August 2019.
The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.
This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.
In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.
OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities. FINDINGS: Thematic analysis identified two main aspects for carers when contemplating the future-when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers' ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for. CONCLUSIONS: Services need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers' perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.
Purpose: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. Methods: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. Results: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. Conclusions: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
Background and Objectives: Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods: This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. Results: After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Discussion and Implications: Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas.
Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.
The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.
Background: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.; Methods: In a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).; Results: Compared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.; Conclusions: Caregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.; Trial Registration: ClinicalTrials.gov registration number: NCT02317523 .
Older family carers of people with dementia represent an increasing but overlooked population of family carers. This research aimed to explore how these individuals make sense of their own quality of life and to identify the factors that enhance or compromise this. Four focus groups were conducted in 2014 with 19 older family carers in community-based support groups in Nottinghamshire, United Kingdom. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Thirty-three subthemes emerged and were collated into three superordinate themes: 1) aspects of care and caregiving, 2) feelings and concerns, and 3) satisfaction with life and caregiving. This study identified a broad range of aspects that are of particular importance to the quality of life of older family carers of people with dementia. These findings are expected to inform future research as well as health and social care providers with the aim of improving life quality for this population.
Older spousal caregiving relationships involve support that may be affected by the health of either the caregiver or care recipient. We conducted a longitudinal analysis using pooled data from 4,632 community-dwelling spousal care recipients and caregivers aged ⩾50 from the 2002 to 2014 waves of the Health and Retirement Study. We specified logistic and negative binomial regression models using lagged predictor variables to assess the role of partner health status on spousal caregiver and care recipient health care utilization and physical functioning outcomes. Care recipients' odds of hospitalization, odds ratio (OR): 0.83, p <.001, decreased when caregivers had more ADL difficulties. When spouses were in poorer versus better health, care recipients' bed days decreased (4.69 vs. 2.54) while caregivers' bed days increased (0.20 vs. 0.96). Providers should consider the dual needs of caregivers caring for care recipients and their own health care needs, in adopting a family-centered approach to management of older adult long-term care needs.
Japan has adopted community-based integrated long-term care, which has shifted the burden of care from institutions to the home. However, family caregivers have received less attention compared with care recipients. Many family caregivers are also older adults, and it is important that caregivers receive appropriate support to alleviate the burden of care. In rural and sub-urban area with limited resources compared to urban area, it is necessary to know which support to be prioritized. Therefore, this study aimed to understand family caregivers' perceptions of social support, the type and source of support which were considered important, and how it affected their caregiving burden and quality of life (QOL). We conducted a convergent mixed-method study with 174 primary family caregivers of older adults receiving home care in rural and suburb area of Central Japan. The mixed-method approach enabled qualitative data to complement quantitative results. Strong family support and higher education had positive effects on QOL, while higher caregiving burden and longer duration of care had negative effects on QOL. Provision of tangible support from family and healthcare professionals was central in reducing caregiving burden and improving caregivers' QOL. Support from distant relatives or neighbors, which was deemed inappropriate by caregivers, had a negative effect on caregivers' emotional status. In conclusion, family caregivers perceived support positively, but the effects depended on who provided support. While tangible support from close family and professionals was perceived positively, support from neighbors or distant relatives should consider caregivers' needs and condition to avoid a negative impact.
Objectives: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). Methods: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis Findings: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. Conclusions: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.
Objective: To know the health-related consequences of caring for dependent relatives in older adult caregivers.; Method: Qualitative research carried out with older adult women who cared for family members enrolled in a federal public home care program. The identification of the older adult caregivers was done by consulting the patient's charts, and the interview took place from March to June 2017. The data were systematized based on Content Analysis.; Results: Six older adult caregivers of people with impaired functional capacity participated in the study. Three categories emerged: care-related musculoskeletal pain; health problems related to the somatization of the lived feeling; and self-care deficit by virtue of caring for another.; Conclusion: The study revealed the consequences of caring for dependent family members on the health of older adult caregivers. Careful management is essential to prevent and/or reduce health problems, especially regarding the musculoskeletal system.
Background and aims: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers’ experiences and their perceptions of their role. Methods: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. Findings: Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. Conclusions: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.
Older caregivers may be unfamiliar with guardianship, and may not know if it could help or hinder their caregiving. This article explores questions that professionals who are counseling older caregivers should ask, including whether guardianship is needed or if there is a less restrictive option; whether the caregiver should petition and what to expect of the court proceeding; whether the caregiver should take on the legal responsibility of serving as guardian; and what happens in case of family conflict, abuse by a guardian, or inability of a guardian to continue serving.
Background: Mindfulness-based interventions (MBIs) have grown in popularity in recent years and have been shown to reduce stress and increase quality of life among older informal carers. A digital application delivering MBIs has been iteratively designed based on user-centered designed principles and aims to support older informal carers to manage stress and sleep. We describe a qualitative study with older informal carers and the resulting digital application. Methods: A qualitative study with 20 older adults took place over a 2-year period. Requirements gathering consisted of focus groups, interviews, and usability testing with older adults and informal carers. A high-fidelity mock-up of an application was designed and user-testing sessions held with five participants to gauge usability and effectiveness. Results: Focus group participants felt stress reduction is a significant issue which affects overall wellbeing, with a consensus that stress can have an adverse effect on sleep. An overarching theme throughout the informal carer interviews was carer burden and the sense of being overwhelmed. The sense of constant worry was a theme that also emerged, which could be addressed by the present moment focus of mindfulness (Helmes & Ward 2015 https://doi.org/10.1080/13607863.2015.1111862, Visser et al. 2015 https://doi.org/10.1007/s12671-014-0311-5). Usability testing sessions revealed previously overlooked user experience and interface issues, including icons and data visualizations. Analyses of these user interactions and qualitative feedback allowed for further iterations in the design cycle, meeting guidelines for best practice in a user-centred design approach. Conclusion: Insights from the requirements gathering and testing sessions provided an understanding of parameters of health important to older adults, feelings towards selfmonitoring, preferences for data visualizations, and attitudes to MBIs. The resulting application has been designed for older informal carers to manage stress through MBIs as well as monitor activity and sleep through tracking, data visualizations and educational advice.
Aims and objectives: To understand the lived experiences of older Brazilian carers. Background: For many caregivers, the practice of caregiving becomes their daily lives, embedding in their care and the experiences, beliefs, learning and techniques that contribute to the meanings these caregivers attach to their world. Studies have reported on the experiences of caregivers in general; however, few studies have addressed the unique characteristics of older caregivers. Method: Phenomenological research was conducted in the homes of these persons who were registered in a public programme of home care. This study utilised recorded interviews with a guiding question and roadmap for characterisation. The transcribed interviews were analysed based on philosophical hermeneutics and on the understanding of the hermeneutic circle. The units of meaning were discussed from the perspective of Heidegger's phenomenology. Results: Six older primary caregivers participated, aged between 62–84 years. The following units of meaning were developed: the daily life of being in the world as an older person caring for another older person, the historicity and their disclosedness to the world of care. Conclusions: The worldliness of these people is influenced by a taxing routine and being overloaded and lonely, which renders these caregivers vulnerable because of this routine and because of the inherent weaknesses induced by the ageing process. Relevance to clinical practice: This research can help health professionals better understand the worldliness of older caregivers. Such understanding will enhance the assistance available to caregivers, which must extend beyond the care of the sick person: interventions can reduce their overburden and risk of illness, improving their experiences as caregivers and their quality of life.
During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.
As Internet accessibility grows among adults in the United States, researchers' utilization of Internet-based surveys and recruitment strategies has increased, but there is a paucity of knowledge about their use in different age groups of former dementia caregivers. The purpose of this secondary analysis is to describe 1) the use of Internet-based recruitment in obtaining a sample inclusive of young and middle aged (age 18–64), young-old (age 65–74), and older-old (age 75 and older) former dementia caregivers and 2) the feasibility of collecting data using an online survey in young and middle aged, young-old, and older-old former dementia caregivers. Utilizing convenience sampling, a four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was employed. Participants (N = 171) completed an online survey. Older-old, young-old, and young and middle-aged participants comprised 9%, 30%, and 61% of the sample respectively. All age cohorts provided minimal missing data using an online survey, but older-old participants required 15 additional minutes to complete the survey than young-old participants. Both cohorts of older adults were directed to the survey less frequently through online referral sources than young and middle-aged participants, and no older-old participants were referred via Facebook. All three age cohorts consisted of mostly white women. Internet-based surveys and recruitment were feasible among the age groups but may present challenges for the older-old and minorities. Further research on Internet-based data collection and recruitment is indicated in minority and older-old caregivers, focusing on trust, educational and financial disparities, and technological proficiency as potential barriers. Highlights • Caregivers of all ages provided minimal missing data using an online survey, but the oldest experienced more survey fatigue. • Internet-based referral sources are more commonly used by young and middle-aged caregivers than older caregivers. • Facebook may not be useful in recruiting older-old former dementia caregivers. • Across all age groups, Internet-based recruitment may not be sufficient to access a sample diverse in race and ethnicity.
Providing and maintaining optimal care is challenging for older family caregivers who are caring for disabled older adults. Learned Resourcefulness can facilitate family caregivers' self-help strategies, and Resourcefulness can facilitate help-seeking from others. However, little is known about how older family caregivers can effectively maintain and adapt self-help and help-seeking strategies over time, especially as the dynamic nature of caregiving for disabled older adults demands change. To this end, the Transtheoretical model (TTM) provides useful constructs that address family caregivers' readiness to change their self-help and help-seeking behaviors. This paper reviews relevant literature regarding Learned Resourcefulness, Resourcefulness, and the TTM. The proposed conceptual model incorporates constructs from the TTM integrated with Learned Resourcefulness and Resourcefulness strategies to aid in the development and testing of interventions that are designed to promote the quality of life and health of older family caregivers while they are providing care to disabled older adults.
Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility , and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.
AIM: Long-term care systems may alleviate caregiver burdens, particularly for those with fewer resources. However, it remains unclear whether socioeconomic disparity in caregiver burdens exists under a public, universal long-term care insurance (LTCI) system. This study examined income-based inequalities in caregiving time and depressive symptoms in Japanese older family caregivers. We further compared inequality in depressive symptoms with that of non-caregivers to evaluate whether family caregiving exacerbates this disparity. METHODS: Data were obtained from a cross-sectional, nationwide survey conducted by the Japan Gerontological Evaluation Study in 2013. Participants were functionally independent older adults aged >=65 years (N = 21,584). Depressive symptoms were assessed using the Geriatrics Depression Scale (GDS); caregiving hours per week, household income, and other covariates were also assessed. RESULTS; Family caregivers occupied 8.3 per cent of the total. A Poisson regression model revealed that caregivers in lower income groups (compared to those in the highest) were 1.32 to 1.95 and 1.63 to 2.68 times more likely to engage in >=36 and >=72 hours/week of caregiving, respectively. As for the GDS (>=5), an excess risk was found in the caregivers in lower (compared to higher) income groups (adjusted prevalence ratio: 1.57-3.10). However, an interaction effect of income by caregiving role indicated no significant difference in inequality between caregivers and non-caregivers (p = .603). The excess risk for GDS (>=5) in the caregivers compared to non-caregivers was observed across income groups. CONCLUSIONS: Our findings revealed a possible disparity in family caregivers under the public LTCI system. Further studies should examine factors associated with longer caregiving hours in lower income households. Our findings also suggest the necessity for more efforts to alleviate depressive symptoms in family caregivers under the LTCI system regardless of income level, rather than exclusively supporting those with a low income.
Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016–2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the “separation of worlds” (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction.
Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.
The diminished wellbeing of caregivers is well documented, but studies typically draw upon coarse measures of time use and thus provide limited understanding of the role of specific care activities in the daily lives of care providers. This study uses time diary data to explore whether there are signature care patterns throughout the day and whether these care patterns have implications for caregivers’ experienced wellbeing.Using a national sample of 511 time diaries from older caregivers in the Disability and Use of Time supplement to the Panel Study of Income Dynamics, we examine minutes of care provided on the prior day, overall and for four broad care categories (household, personal care, transportation, and visiting), and patterns of care over the day, the latter based on sequence and cluster analysis.Older caregivers spend on average 2.3 hr providing care to another adult on care days. Caregiving follows a roller-coaster pattern over the day, peaking at mealtimes. Sequence analysis suggests five distinctive caregiving patterns, which vary by both demographic characteristics of the caregiver (gender, work status) and care arrangement type (relationship to recipient, whether sole caregiver to recipient). The 40% who provide only marginal assistance of about 1 hr report lower experienced wellbeing than the 28% who provide sporadic assistance with a mix of activities for about 2 hr.A substantial share of older caregivers provides only 1 hr of assistance on a given day but appears to be at risk for reduced wellbeing. Better understanding of the reason for their marginal involvement and reduced wellbeing is warranted.
Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.
Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.
Older caregivers of dementia patients have been studied as a model of chronic stress influencing psychological and physical well-being and the function of the immune system. These immune decrements can relate to altered stress hormone levels, and caregivers show elevated or reduced cortisol compared to age-matched controls as well as dysregulation in other cortisol indices. Recently, this field has developed to examine a range of immune outcomes and cortisol measures in younger caregivers too, as well as other potential underlying mechanisms including genetic variation, acute stress reactivity and inflammation. Several interventions have also been trialled to reduce the negative physical impact of caregiving stress. This paper reviews the latest developments in the field and gives suggestions for future research.
Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.
Aims and objectives To examine the relationship between significant others' expected and received knowledge and their background characteristics in three Mediterranean countries (Cyprus, Greece, Spain), all of which deal with economic restrictions, have similar social support systems with the family members acting as family caregivers, and cultural similarities. Background Significant others' role is a key element in the older patients' postoperative recovery. However, people who take care of persons older than 65 years, as persons undergoing arthroplasty, are usually old themselves and need special support. Design Multicentre, descriptive, correlational study. Methods Data were collected preoperatively from 189 and postoperatively from 185 significant others using the Knowledge Expectations and the Received Knowledge of Significant Others Scales during 2010‐2012. Results Approximately one‐fourth of the significant others were older than 65 years. Their knowledge expectations were not adequately addressed in any of the countries they expected to be educated more on biophysiological issues and received the lowest knowledge regarding financial issues. The highest difference between expected and received knowledge was found in Greece and the lowest in Cyprus. Significant others may be less prepared for dealing with situations at home due to the knowledge difference between expected and received knowledge. Conclusions Significant others receive less education comparing to what they expect therefore, they are not prepared for dealing with problematic situations during their old relative's recovery. This is especially important in Mediterranean countries, where family members often provide patient care. Implications for practice As health care is changing towards active participation of patients and family, it is important that nurses provide the education needed, as lower education may lead to poor patient outcomes and higher education may lead to significant others' anxiety. Nurses may keep in mind that older significant others do not report higher knowledge difference, but may have lower expectations.
Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Results: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out‐of‐family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long‐term care plans.
An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.
Background :Caregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers. Aim: To explore the everyday experiences of older adults serving as primary informal caregivers to significant others. Methods: A process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative. Results: These caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative. Conclusion and significance: The everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.
Background: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods: Semi‐structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework. Results: ‘Tolerating uncertainty’ was the major theme in participants' attempts to manage anxieties about the future, encompassing sub‐themes of ‘accepting the parenting role’, ‘facing challenges’, ‘being supported/isolated’, ‘positive meaning making’, ‘re‐evaluating as time moves on’ and ‘managing future thinking’. Some participants expressed preferences for their future which were in contrast to their parents' views, and provide a unique perspective that has often been neglected in prior research. Conclusions: This research has found commonalities in how families tolerate the uncertainty of the future, but also unique differences that require tailored interventions and prospective action by services.
There are growing numbers of older parents providing ongoing care for adults with disabilities. A parent's aging calls for a redefinition of parental care practices and roles in light of his or her own changing needs. The current study aims to highlight the ways in which aging parents perceive and construct their parental role to adult children with disabilities at this point in their lives. An interpretive phenomenological analysis perspective was used. Data collection was performed through in-depth, semistructured interviews with 20 aging parents of children with developmental disabilities, followed by a content analysis. Four patterns of parental identity emerged: "Being happy is his responsibility I did my part," embracing aging needs "I can do part-time worrying," a gradual letting go of parental roles "I'm worn out, but I keep going. What choice do I have?" bearing the brunt "I'm an old woman changing diapers," full-time parents. The findings enable a deeper understanding of the various ways in which parents cope with aging alongside caring for an adult child with disability. Hence, this study can serve as a framework for developing tailored and differential intervention methods for these families. As the world's people experience longer life expectancy, of both individuals with disabilities and their parents, nurses' education and practice should be challenged by the double sensitivities of elder's caregiving and address the unique needs of this unique population.
With increasing pressure on retirement-aged individuals to provide informal care while remaining in the work-force, it is important to understand the impact of informal care demands on individuals’ retirement decisions. This paper explores whether different intensities of informal caregiving can lead to retirement for women in the United States. Using the National Longitudinal Survey of Mature Women, we control for time-invariant heterogeneity and for time-varying sources of bias with a two-stage least squares model with fixed effects. We find that women who provide at least 20 hours of informal care per week are 1 to 3 percentage points more likely to retire relative to other women. We also find that when unobserved heterogeneity is controlled for with fixed effects, we cannot reject exogeneity. These findings suggest that for a sub-set of high intensity caregivers, policies encouraging both informal care and later retirement may not be feasible without allowances for flexible scheduling or other supports for working caregivers. ᅟ
This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5‐ to 6‐year period. The findings comprise three themes, me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.
Background: Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age.
Methods: This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good).
Results: The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%–100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years.
Conclusions: The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.
Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID.
Design and Methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of aging concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach.
Results: Three main themes emerged: (a) Recognizing the Changes of Aging, (b) Strengthening Connections, and (c) Planning for the Future.
Implications: Aging concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID’ understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed.
Falls are a common cause of morbidity and mortality in older adults. While research has explored the relationship between older care recipient falls and caregiver health, there has been little investigation of the relationship between caregiving tasks and falls in older caregivers. This study assessed associations between falls and caregiving frequency and type of caregiving tasks among informal older caregivers. Data from the Canadian Community Health Survey on Healthy Aging (Public Use Microdata File 2008-2009) (n = 2,934) were examined, using descriptive and logistic regression analyses. Higher frequency of caregiving was positively associated with falls, although those who performed household chores were less likely to report falling in the past year. Results suggest there may be an association between factors related to caregiving and falls in older caregivers. More research using longitudinal and experimental data is needed to better understand the relationship between caregiving tasks and falls in older caregivers.
This study explored the population characteristics and needs of informal caregivers reporting a low or high burden. A cross-sectional study was conducted in the Netherlands to explore the associations between the characteristics and needs of informal caregivers and the burden they perceive and to assess the variance in perceived burdens that is explained by these variables. Three thousand sixty-seven adult informal caregivers and 1936 senior informal caregivers participated, almost 15% of whom perceived a high burden. Particularly caregivers in the 40 to 54 age group perceived a high burden, while caregivers with an intermediate educational level reported a low burden. Higher burden was also reported by caregivers who spent more time on the care provision tasks, had a high level of depressive symptoms, or reported loneliness. The explored variables seem to be important to explain caregiver burden. Longitudinal research is warranted to establish the causal directions of these associations.
Objective: To evaluate the association between brain structural markers and caregiving strain among older informal caregivers.; Design: A secondary data analysis combining data from the Caregiver Health Effects Study (1993-1994) and the Cardiovascular Health Study MRI examination (1992-1994).; Setting: Four United States communities.; Participants: Co-residing spousal caregivers (N = 237; mean age: 76.2 years, SD: 2.2 years).; Measurements: Visually rated ventricular and white matter (WM) grades from magnetic resonance imaging, caregiving strain defined as "emotional or physical strain associated with providing care" for any of 12 activities of daily living (ADLs) and instrumental activities of daily living (IADLs), plus measures of caregiving characteristics and caregiver's health.; Results: Overall, 56% of caregivers reported strain. We detected an interaction where strain was very common (>82%) among caregivers who helped with four or more IADLs, regardless of WM grades, and among caregivers with the worst WM grades (WM grades ≥4), regardless of the number of IADLs they helped with. Among caregivers helping with fewer than four IADLs, having WM grade 4 or greater was associated with a 55% higher prevalence ratio for reporting strain. This association remained statistically significant but was most markedly attenuated by adjustments for: care recipient's memory and behavioral problems, caregiver's depression symptoms, and caregiver's ADL impairment.; Conclusions: Caregiving strain is very common among older informal caregivers who provide help with many IADLs, and among caregivers who help with fewer IADLs, but have manifest signs of white matter pathology. Modern quantitative-neuroimaging studies are needed to evaluate whether more subtle variability in brain structure confers caregiving strain and the related health consequences.
In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals. [ABSTRACT FROM AUTHOR]
Purpose: Little is known about how caregiving affects the quality of life (QoL) of older family carers and no dementia and age-specific QoL scale is available for use with this population. This study aimed to develop and validate a unique dementia caregiving- and age-specific tool - the 'Dementia Quality of Life Scale for Older Family Carers' (DQoL-OC). Methods: The scale items were identified in focus groups with older family carers in the UK. Content and face validity were evaluated by a panel of six experts. A set of 100 items assessed on a 5-point Likert scale was tested with 182 older family carers. Test-re-test reliability was conducted with 18 individuals. Exploratory factor analysis was used to identify the QoL model and reduce the number of scale items. Convergent construct validity and internal consistency were also established. Results: A one-factor solution containing 22 items was obtained. Test-re-test reliability (lower bound r = 0.835;p < 0.001), internal consistency (Cronbach's a = 0.936), and convergent construct validity were established. Significantly lower levels of QoL were found in female older carers;those who perceived their relatives with dementia as being at the earlier stages of the disease and with unstable dementia symptoms;those providing care more hours per day and more days per week;and those in younger-old age. Conclusions: The DQoL-OC is a valid and reliable scale that will be useful for research and in clinical practice with older family carers of people with dementia. These study results will inform future health and social care aiming to improve life quality for this overlooked population of carers.
Aim: Caregiver burden in dementia is an important issue, but few studies have examined the mental health of younger and older family caregivers by comparing them with age- and gender-matched community residents. We aimed to compare the mental health of dementia caregivers with that of community residents and to clarify factors related to mental health problems in younger and older caregivers.; Methods: We studied 104 dementia caregivers; 46 were younger (<65 years) and 58 were older (≥65 years). A total of 104 community residents who were matched for age and gender were selected. We compared depression (Center for Epidemiologic Studies Depression Scale for younger participants; Geriatric Depression Scale for older participants), health-related quality of life (QOL) short-form health survey (SF-8), sleep problems, and suicidal ideation between the caregivers and community residents by age. Behavioural and psychological symptoms of dementia, activities of daily living (ADL), and instrumental ADL were assessed among patients with dementia using the Neuropsychiatric Inventory, Physical Self-Maintenance Scale, and Lawton Instrumental ADL Scale, respectively.; Results: According to SF-8 results, both younger and older caregivers had significantly worse mental QOL than community residents (younger caregivers: 46.3 vs community residents: 49.7, P = 0.017; older caregivers: 48.2 vs community residents: 51.1, P = 0.024) but were not more depressive. Sleep problems were significantly more frequent in younger caregivers (39.1%) than in community residents (17.0%) (P = 0.017). Multiple regression analysis revealed that caregivers' deteriorated mental QOL was associated with patients' behavioural and psychological symptoms of dementia in younger caregivers and with dementia patients' instrumental ADL and female gender in older caregivers.; Conclusions: Dementia caregivers had a lower mental QOL than community residents. To maintain caregivers' mental QOL, it is necessary to provide younger caregivers with skills or professional interventions for dealing with behavioural and psychological symptoms of dementia, and older caregivers must be offered adequate care support.; © 2016 The Authors. Psychogeriatrics © 2016 Japanese Psychogeriatric Society.
Aims and Objectives: To describe the family caregivers' caregiving experience for stroke survivors and to identify the determinants of caregiving burden over 6 months.; Background: Sociocultural factors influence the caregiving experience in China. However, little is known about the dynamic changes occurring in Chinese caregivers' burden and its determinants.; Design: This is a prospective longitudinal study.; Methods: A total of 328 participants (164 stroke survivors and 164 family caregivers) from the neurological units of three hospitals in Shiyan were examined during a 6-month period at 1-2 days before discharge (T1) and 3 weeks (T2), 3 months (T3) and 6 months (T4) postdischarge using the Short Portable Mental Status Questionnaire, Multidimensional Scale of Perceived Social Support, Caregiver Strain Index and the Center for Epidemiological Studies-Depression.; Results: Of the 209 dyads recruited, 164 completed all data collection phases, with 69% of the female caregivers aged 56.04 (SD = 4.0; range = 22-80) years. Caregivers reported higher mean burden at T1 (7.35 ± 2.9) but slightly decreased over time at T4 (6.34 ± 3.4), had borderline mean depressive symptoms only in T1 (9.71 ± 3.2) and T2 (9.02 ± 3.8) and had moderate mean social support throughout the 6-month period. Determinants of caregiving burden were stroke survivors' physical dependence, caregivers' age, caring hours per day, depressive symptoms and social support, which explained 46.8%-55.0% of the total variance (p < .05).; Conclusion: Caregivers' burden remains a serious problem in the first 6 months. It is an increasing hazard, especially for those at an advanced age who have depressive symptoms and care for severely dependent stroke survivors requiring more caring hours.; Relevance To Clinical Practice: Nurses need to be aware of and understand caregivers' cultural values and beliefs about family obligations when considering an intervention to support them in their role at home.; © 2017 John Wiley & Sons Ltd.
Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.
Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.
Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.
Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.
Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.
Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.
Materials and Methods: This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project.
Results: The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the ‘Futures Planning’ documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years.
Conclusions: Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams.
This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.
Valuing People reminds us that 60 percent of adults with learning disabilities are still living at home being supported by relatives. The author investigates how older carers could best use the family home in planning for the future and reviews the different arrangements families can put in place to ensure a son of daughter can continue to live at home.
Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.
Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.
Setting: The study was conducted in a rural community setting.
Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.
Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.
Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.
Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.
Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.
Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.
Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.
AIM OF THE STUDY: This study examined the experiences of informal carers who were aged 75 years and over.
BACKGROUND: It has been estimated that 13% of those aged over 65 years are providing some form of informal care. Although there is a substantial body of work reporting the experiences of informal carers, little attention has been paid to the specific situation faced by older carers.
DESIGN AND METHODS: Potential study participants were identified during one round of annual over-75 health checks carried out in one large general practice. Data were collected through personal interviews, which were transcribed and analysed using a thematic approach.
RESULTS: Fifty-eight carers were identified and 14 were approached to take part in the study. Of the 14 interviewees, 13 were caring for a spouse and one was caring for a sibling. There were 10 female and four male carers in the study (age range 76-92 years). Themes to emerge from the interviews were categorized under four headings: (1) the organizational demands and structure of the caring relationship, (2) informal support networks, (3) formal services and (4) the constancy of caring and the need for the role of carer to be recognized.
CONCLUSIONS: The over-75 health check may provide a valuable tool to identify older carers who are not known to care providers. This paper concludes that nurses can take a lead role in working with this group in three ways. Firstly, in identifying older carers; secondly, in developing strategies to assist older carers in their caring role and finally, in responding swiftly to crises that can develop among this vulnerable group.
As people with learning difficulties live longer their carers become correspondingly older. A council project in south London is helping meet the needs of older carers. [Introduction]
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons.
Informal caregivers, most often older people, provide valuable care and support for people ill due to AIDS, especially in poor-resource settings with inadequate health care systems and limited access to antiretroviral therapy. The negative health consequences associated with care-giving may vary depending on various factors that act to mediate the extent of the effects on the caregiver. This paper investigates the association between care-giving and poor health among older carers to people living with AIDS, and examines potential within-gender differences in reporting poor health. Data from 1429 men and women aged 50 years or older living in two slum areas of Nairobi are used to compare AIDS-caregivers with other caregivers and non-caregivers based on self-reported health using the World Health Organization disability assessment (WHODAS) score and the presence of a severe health problem. Women AIDS-caregivers reported higher disability scores for mobility and the lowest scores in self-care and life activities domains while men AIDS-caregivers reported higher scores in all domains (except interpersonal interaction) compared with other caregivers and non-caregivers. Multiple regression analysis is used to examine the association of providing care with health outcomes while controlling for other confounders. Consistently across all the health measures, no significant differences were observed between female AIDS-caregivers and female non-caregivers. Male AIDS-caregivers were however significantly more likely to report disability and having a severe health problem compared with male non-caregivers. This finding highlights a gendered variation in outcome and is possibly an indication of the differences in care-giving gender-role expectations and coping strategies. This study highlights the relatively neglected role of older men as caregivers and recommends comprehensive interventions to mitigate the impact of HIV and AIDS on caregivers that embrace men as well as women.
This briefing paper is about the findings and recommendations from a research project conducted at the University of Nottingham, with funding awarded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers* looking after someone with advanced cancer and to facilitate the active involvement of carers in the research process.
Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority.
Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types.
Findings – A small minority of local authority web sites mention that they operated Carers’ Registers. Overall local authorities offer different resources to carers, ranging from discounts in the local area to access to emergency card registration. Some use online information as a communication channel. Overall local authority online information for carers seems to be variable in quality, accessibility and purpose. We conclude that growth in the collection of information by primary care services in England risks duplicating some of the functions of, and problems with, local authority activities. Local commissioning should minimise confusion and make optimal use of carers’ information. Carers should not have to navigate confusing, variable, parallel systems and outreach is needed for those who do not use electronic media, such as some older carers.
Research limitations/implications – This was a small-scale study nested within a larger project. It is possible that the web sites we interrogated were atypical, although we did take steps to prevent this.
Originality/value – The study's strength lies in its originality of approach undertaking a specific audit of material that is publicly available and reflecting on a subject that has not previously been explored in the context of information for carers.
The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.
Informal carers in the context of late modernity must negotiate two potentially conflicting discourses. One is associated with a post-traditional and increasingly individualized society characterized by ‘pure’ relationships with an emphasis on authenticity and choice. The other is a more traditional discourse found particularly in current health and social policy which relies explicitly on significant input by family carers. This ar ticle analyses the tensions arising from this paradox, specifically for older carers engaged in long-term care relationships. The first, theoretical, section provides an overview of the ‘subjective turn’ associated with modernity together with the heterogeneous ethics of governmentality associated with liberal rule. The second, empirical, section discusses ‘moral narratives’ drawn from carers’ accounts of caregiving. The conclusion highlights the social contexts in which carers make moral choices and identifies the links between policy normativities on the one hand and inequality and resistance on the other.
Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.
Support for carers now has a higher profile following the introduction of the Carers' Act (2004). In this article, Gary Kitchen reports on a successful review his organisation, Get Heard, carried out of a support service to carers of people with dementia in Cheshire, and demonstrates how vital these services are.
The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.
Of the UK‟s approximately six million carers, around half are aged over 50. A recent survey of carers in England showed that people near or over retirement age undertake a high proportion of caring. Although on average, 12% of the population provide unpaid care for a friend or family member, this increases to 18% for those aged 55–64, 16% for those aged 65–74 and 13% for those aged 75 and above. This comes at a time when others, who do not have caring responsibilities, are planning their retirement, looking forward to long put-off activities, getting involved in their local communities or enjoying their grandchildren. Others, perhaps into their retirement, are enjoying time for themselves, winding down and taking things a little easier as they get older.
“We cannot have a retirement like other people do – there‟s always a timetable to stick to.” For many older carers, planning or enjoying their retirement is simply not an option. At a time when their own heath may be deteriorating, many find themselves exhausted and constantly anxious, rarely getting a break from caring. Carers aged 60–69 often juggle caring – perhaps for more than one person, for example a parent and an adult son or daughter – with the demands of work and financial pressures while those aged 70 and above often find it difficult to cope with the physical demands of caring. For those caring for a partner, the change to a relationship can be hard to adjust to. As well as the daily stress of caring, a feeling of loss – of a relationship or of precious time – can cause great distress. Almost all carers feel frustrated when health professionals do not involve them as a full partner in care. Almost all worry about what the future will hold for them and the person they care for. The Princess Royal Trust for Carers carried out a survey in early 2011 of carers aged 60 and over from across the UK, to find out more about their lives and the challenges they face.
Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.
Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programmes for older carers occupied a unique place within the service system. Discusses a study that further explored the functions of specialist programs for this group through a comparison with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.
Background: Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.
Methods: We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.
Results: Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.
Conclusions: Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.
Caring in Later Life is a review of the needs and roles of older carers (Milne et al, 2001). It brings together a wide‐ranging review of academic and policy literature with an original meta‐analysis of the 1995 General Household Survey (OPCS, 1995). This paper focuses on the findings of the GHS analysis. The picture of older carers that emerges is significantly different from that of carers overall.It is clear that older carers constitute a large and growing number of the carers and represent an increasingly large proportion of the total number of UK carers. They can be distinguished from other groups of carers in a number of ways: older carers are more likely to live with the person they care for, caring is likely to take place within the context of a long term relationship, dementia is a dominant feature and carers are more likely to be involved in intimate and personal care. Many also have health problems of their own. The analysis confirms a distinction between older carers who offer support on a co‐resident basis and those who are extra resident. There is clearly a high level of devotion to caring amongst many co‐resident carers, with many providing intensive care over long periods of time with little or no support from services. Most of these carers are spouses. The authors suggest that more should and can be done by policy and services to improve the health and quality of life of older carers.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.
Purpose. Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later.
Method. A purposive sample of 31 informal carers was interviewed in depth just prior to discharge, 1 month and 3 months post-discharge. Interviews lasted 30–90 min and were audio-taped and transcribed. Data analysis was ongoing starting during data collection and ending with themes that described and helped understand carers' experiences.
Results. Carers described reductions in their autonomy and independence but also over time identified strategies to manage these changes and to increase control in their lives. These strategies included selection, optimisation, compensation, asking for and accepting help and negotiation. Some carers, especially older carers and those with prior caring experience, were less likely to describe changes in autonomy and control.
Conclusions. Carers' reduced autonomy and independence should be recognised by practitioners and service providers. Helping carers to negotiate choice and control over the support offered could help increase their autonomy and independence. To offer improved support to these carers, greater attention should to given to the diversity of their situations and experiences.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.
There has been growing recognition of the important role that carers play in enabling vulnerable adults to remain in the community. Recent legislation has recognised the role of the family carers and encouraged the development of support services. Considerable research has been undertaken to identify the needs and the experiences of the carers in general but little specific attention has focused on older carers. This is despite the fact that they have their own unique needs which may have been hidden in previous research. This review commissioned by Help the Aged brings together exisiting evidence and supplements it with fresh analysis of the General Household Survey 1995 [GHS 1995] to draw out the particular needs of carers over the age of 60.
Against the backdrop of ongoing population ageing, informal care occupies an important place on European political agendas. This article discusses informal caregiving by middle aged and older persons in the Netherlands and other European countries, with particular emphasis on the role played by motives. The data are drawn from SHARE. Our results show that in the Netherlands, it is mainly feelings of being needed and obligation that increase the chance of informal care being given. Deriving pleasure from an activity, by contrast, reduces the likelihood. In Southern Europe, where the responsibility for providing care lies with the family, we found that, contrary to expectations, older carers do not more often feel obliged. They less often report that they feel needed or see being socially active as a way of contributing to society. Our simulations suggest that if the socially active Dutch had the same motives as their Southern European counterparts and behaved similarly in terms of informal caregiving, the number of informal carers would fall. This implies that a greater policy emphasis on family responsibility could actually bring about a decline in the amount of care given, as opposed to the envisaged increase.
This paper examines how the relationships between the factors (predisposing, enabling and illness) of the 1973 Andersen framework and service use are influenced by changes in the caring role in older women of the 1921–26 cohort of the Australian Longitudinal Study on Women's Health. Outcome variables were the use of three formal community support services: (a) nursing or community health services, (b) home-making services and (c) home maintenance services. Predictor variables were survey wave and the following carer characteristics: level of education, country of birth, age, area of residence, ability to manage on income, need for care, sleep difficulty and changes in caring role. Carer changes were a significant predictor of formal service use. Their inclusion did not attenuate the relationship between the Andersen framework factors and service use, but instead provided a more complete representation of carers' situations. Women were more likely to have used support services if they had changed into or out of co-resident caring or continued to provide co-resident care for a frail, ill or disabled person, needed care themselves, and reported sleep difficulties compared with women who did not provide care. These findings are important because they indicate that support services are particularly relevant to women who are changing their caring role and who are themselves in need of care.
This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.
Summary: The evaluation of a project instigated by a voluntary group provided an opportunity to investigate the benefits of holiday breaks to both carers and participants. Feedback was obtained from over 100 people with intellectual disabilities through individual and group interviews, as well as from their carers using self-completed questionnaires.
Findings: Overall, the breaks were thoroughly enjoyed by the project members, providing them with a range of activities and leisure pursuits in the company of their friends and, on certain breaks, with non-disabled people as well. Carers reported more benefits to their relative in the later years of the project and became more willing for their relative to attend.
Applications: Three main issues are discussed: the use of mainstream settings and services, rather than specialist facilities, to provide short breaks; how best to encourage other carers of people with more significant needs to avail themselves of these opportunities; and ways of improving the social and leisure networks of people living with families so that the benefits of the ‘holiday’ experience could be recreated more locally and more frequently.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.
Due to the high incidence of disability amongst their contemporaries, older people are likely to be involved in informal caring relationships. Due to the limited nature of post-retirement incomes, such carers are also likely to be relatively poor. In spite of this, little attention has been given to the role of older carers of disabled people or to the influence of poverty upon this role. In an attempt to redress this neglect, this paper will explore the way in which the ageing process serves to exacerbate the demands upon such carers, not only due to the increased incidence of disability experienced by older people, but also due to their decreased access to material resources, which would help to alleviate these demands.
Social support is a potentially powerful mediator of well-being for family carers. Given that social engagement often decreases with age, the Internet broadens the opportunities for aging carers of individuals with intellectual and developmental disabilities (I/DD) to provide support to one another. This article reviews what constitutes social support, its importance to older adults, and more specifically carers of those with I/DD. Computer and Internet usage by older adults is briefly reviewed. The Internet as a medium for facilitating social support and support groups for carers is discussed. The role of the Internet in the lives of people with I/DD is also briefly reviewed. The literature review, compiled from a literature search of PubMed, Science Direct, PsycInfo, OvidSP, and CINAHL databases, revealed that there is a relative paucity of information regarding support on the Internet for aging carers, particularly for aging carers for people with I/DD. The review also revealed the utility of the Internet to be utilized as a medium for social support groups. The authors noted that aging adults can acquire new technological abilities and cognitive benefits when learning new skills. Both older adults and individuals with I/DD benefit when web sites are attentive to layout and usability. The authors suggest that Internet-based aging carer support groups that also incorporate educational content should be developed. Although many research questions remain about the design of Internet-based carer groups, web sites that appeal to both carers and individuals with I/DD for peer support and information are interesting avenues for further investigation.
Planning for the future for those adults with a learning disability who live with older carers is an important aspect of the White Paper Valuing People (DoH, 2001). Indeed, such planning is essential if crisis situations are to be avoided, particularly the double shock to service users of losing their home at a time when they are also bereaved. Most research about future planning has tended to focus on the perspective of the family carer rather than that of the service user. To rectify this situation, this paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for their future housing and support. The findings demonstrate that adults with a learning disability are very aware of the likelihood of an end to family care and that they have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.
Background: older patients are less likely to receive palliative care than younger patients. As patient and primary carer age correlate positively, patterns may be due to carer rather than patient age, and reflect better ability to obtain support among younger carers.
Objective: to investigate how both patient and carer age relate to palliative care use, controlling for relevant variables.
Design: comparison of patients who received community Macmillan nurse specialist advice, Marie Curie nursing or inpatient hospice care with patients who did not, using univariate analysis and multivariate logistic regression. Patient and carer data were collected through electronic service record linkage and carer post-bereavement interviews.
Sample: patients referred to a hospice at home service whose primary carer could be interviewed (n = 123).
Results: whilst a cancer diagnosis was an important determinant of access for all services considered, logistic regression shows that carer age, but not patient age, and hospice at home access predicted Marie Curie nursing use. Both patient and carer age predicted use of Macmillan nurse advice. Age of the patient, but not carer age, predicted admission to inpatient hospice, alongside requiring care for over a month (all P<0.05).
Conclusions: carer age may be as important a predictor of palliative home care use as patient age. We need to investigate whether younger carers have greater support needs or show greater effectiveness in obtaining help and to assess whether older carers need more assistance in recruitment of support.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.
This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The objectives of this article are twofold: (i) to present a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan.
Provides an overview of recent research which aimed to development of a 'profile' of older carers. The review increases understanding of who cares in later life and offers a detailed 'profile' of older carers in the UK.
This briefing paper describes the views, experiences, motivations and plans of six older carers who decided to stay involved in research following their participation in a one year project at the University of Nottingham funded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers looking after someone with advanced cancer and was designed to also encourage and facilitate the active involvement of carers in the research process (the support needs of older carers identified in the project are outlined in another briefing paper, ‘Improving support for older people looking after someone with advanced cancer’).
Drawing on recent guidelines and research this clinical review presents recent knowledge and practice on assessing and helping older carers. The review has sections on: how carers should be identified; how a carer assessment should be undertaken; useful interventions to support carers; and the major challenges facing clinicians regarding assessment. Short case scenarios are used to illustrate the issues.
Identifying carers is important because many do not recognise themselves as such, and care responsibilities can affect their health and financial and social aspects of their lives
Comprehensive carer assessment may not be feasible but doctors can identify carers, briefly assess their needs, develop a care plan in collaboration with the carer, and refer where needed
Key areas to ask about include physical and mental health needs of the carer and care recipient, information needs, financial status, levels of carer burden and stress, and the positive aspects of caring
Asking the question “Overall how burdened do you feel?” is a useful, quick way to assess carer distress
Provide specific interventions to carers where indicated, including education, information, counselling, and support
To help the carer, provide the care recipient with specific interventions, including regular service provision, aids and equipment, and respite care
Monitor carer on an ongoing basis and provide support after residential placement or bereavement
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North East region. In 2001 there were 275,813 carers in the North East region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North East region.
Objective: Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated.Methods: We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics.Results: Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression.Conclusions: These findings have important implications for interventions to target at-risk carers. [ABSTRACT FROM AUTHOR];Copyright of International Journal of Geriatric Psychiatry
Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress‐related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care‐receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPNs' role did not comprise hands‐on care‐giving and family carers carried out most personal/physical and healthcare tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.
Background: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer’s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far.
Objective: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia.
Methods: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum.
Results: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users’ depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported.
Conclusions: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.
The aim of this paper is to disentangle the role of gender and partnership status in the caring commitments of older people (age 65 and over). Logistic and interval regression models are applied to individual records from the 2001 UK Census to estimate: (1) the impact of gender on the likelihood of being a carer; (2) the impact of gender on the hours of care provided; and (3) the impact of gender on the likelihood of being a carer for different groups defined by marital status. In the general population the share of women who provide care is higher than the corresponding share of men, but men have a higher probability of being carers among people aged 65 or above. This phenomenon is largely explained by gender differences in marital status. As older men are more likely to be married, and married people are more likely to be carers, we observe higher levels of caring among older men. Once differences in marital status are accounted for, the relationship between gender and care provision among older people is overturned. In particular, we find that, without controlling for household size, limiting long-term illness or marital status, the odds of being an informal carer are lower for older women than men [odds ratio (OR): 0.85; 95% confidence interval (CI): 0.83–0.87]. Once these factors are accounted for, older women have higher odds of caring than older men (OR: 1.12; 95% CI: 1.09–1.15). Restricting the sample to care providers, and controlling for the same factors, it is shown that older women supply on average 3.77 (95% CI: 3.14–4.40) more hours of care per week than older men. Gender differences in the provision of care among older people disappear only when considering married individuals and adjusting for the presence of other household residents affected by a limiting long-term illness.
Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared with the 2011 Census identify an increase of around 600 000 carers. It is also significant that many of these carers are themselves in their late middle age. The reasons for taking on the caring role are varied, but there are significant potential physical, mental and financial issues associated with taking on the caring role. Positive benefits in terms of support provision for the carer do exist, but support services across the UK are variable. This article outlines the problems that may be faced by carers and provides directions for future developments and research into how this situation might be improved.
Unpaid, informal carers play a vital role in supporting people with long-term conditions. Being a carer can be challenging and carers may need support but they frequently fail to access it. Compared to research investigating the experiences of female carers, research with male carers is underdeveloped. The available evidence suggests male and female carers have many experiences in common but some research suggests that compared to females, male carers are even less likely to access services.
The aim of this systematic review was therefore to synthesise research investigating adult male carers’ experiences of accessing formal and informal support focussing on the barriers and facilitators.
Nine health and social care electronic databases were searched (e.g. PubMed, PsychINFO, CINAHL Plus, Social Policy and Practice, Scopus). Seven studies (five qualitative and two quantitative) fitting the inclusion criteria were identified. All came from North America and most focussed on older carers caring for people with dementia. All seven studies described barriers to accessing support and three highlighted facilitators. Male carers felt committed to their role, seeing it as their responsibility but were often ambivalent about seeking help. Insufficient service information was frequently emphasised. Participants highlighted positive past experiences and professional or voluntary sector support in providing information and helping access services.
Research into male carers’ experiences in accessing support remains underdeveloped. Research that distinguishes between, for example, the experiences of spouses and sons and with direct comparisons between male and female carers is needed. Whether gender specific services would benefit male carers remains undetermined.
As populations age, numbers of older carers are increasing. These carers play a vital role in supporting others, often partners or spouses with dementia.
This narrative review synthesised peer-reviewed evidence published over the last two decades concerning the experiences of carers aged over 75 years, specifically exploring whether their experiences differ from those of younger carers. Four electronic databases were searched and 4102 publications were identified. Eighteen studies involving over one thousand carer participants were included (11 quantitative, 6 qualitative, and 1 mixed-methods study). Most studies came from Europe or North America and almost all were cross-sectional, but few directly compared younger and older carers, making it difficult to determine whether carers’ experiences vary with age. Quantitative studies generally emphasised the challenges of caring and frequently highlighted, for example, relationships between carer characteristics and negative outcomes such as burden. Qualitative studies were often more positive, emphasising carers’ active responses and the rewards of caring. The normality of caring was highlighted, with some suggesting that caring may be less challenging for older than for younger carers.
As with younger carers, being an older carer can be both rewarding and difficult. Our understanding of the experiences of these older carers would be enhanced with more research specifically comparing older and younger carers or comparing older carers and those not in a caring role. Carers are diverse and future research should explore the experiences of carers from different demographic groups. More longitudinal research perhaps focusing on caring dyads and mutual caring is needed.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the London region. In 2001 there were 606,861 carers in London, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the London region.
This paper examines four specific themes relating to older carers' experience: care-giving in the context of particular roles and relationships embedded in biographical histories; care in the context of dementia; care involving skilled or complex health care-tasks; and care of an intimate/personal nature. In each case, we look at the nature of support provided by health care professionals. Analysis of the data suggests several conclusions. Older carers are carrying out a range of tasks including complex health care tasks, many of which were once part of a nurse's remit and role. Nurses approach older carers as a unique but not homogeneous group and acknowledge many of their distinct needs as well as their right to choice concerning the extent of their involvement in care-giving. However, this approach conceals several implicit assumptions and expectations about the role of older carers. In particular, professionals' emphasis on older people's individual choice jars with the latter's own experience of reciprocity existing within the context of lifetime relationships. The paper suggests that modifications have to be made in professionals' approach if older people are to be presented with choice and support in the care-giving they perform.
There are 1.2 million people in England aged 65 and over who are providing unpaid care to a disabled, seriously ill or older relative or friend. If carers are to have healthy and fulfilling lives in older age, more must be done to ensure that there is adequate support in place from health and care services both for older carers and for the people they care for.
This new report by Carers UK and Age UK brings together and analyses evidence from national data sources and older carers themselves to set out some of the key facts about this growing and diverse group and look at what steps must be taken to better support older carers.