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As the Indigenous population in Canada ages, there is a need to recognize the role of place and culture in supporting health and resilience over the life course. This article draws on the findings of a Photovoice project about Southern Inuit experiences of transitions into aging and dementia in NunatuKavut, Labrador. Here, culture and the natural environment are prominent in descriptions of health promotion and care trajectories. These factors may contribute to healthy aging, protect against cognitive decline, and support the maintenance of identity for people living with dementia. However, significant pressures on ways of living embedded in the land are also evident. Such forces are impacting Southern Inuit older adults’ ability to age and be cared for “in place”. The findings of this research reflect a need to consider ways to support Southern Inuit older adults to age in place, which might include reflecting on culturally grounded understandings of personhood, and policy and programming which promote engagement with the nature and culture.
Self-reported activity restriction is an established correlate of depression in dementia caregivers (dCGs). It is plausible that the daily distribution of objectively measured activity is also altered in dCGs with depression symptoms; if so, such activity characteristics could provide a passively measurable marker of depression or specific times to target preventive interventions. We therefore investigated how levels of activity throughout the day differed in dCGs with and without depression symptoms, then tested whether any such differences predicted changes in symptoms 6 months later.
Design, setting, participants, and measurements:
We examined 56 dCGs (mean age = 71, standard deviation (SD) = 6.7; 68% female) and used clustering to identify subgroups which had distinct depression symptom levels, leveraging baseline Center for Epidemiologic Studies of Depression Scale–Revised Edition and Patient Health Questionnaire-9 (PHQ-9) measures, as well as a PHQ-9 score from 6 months later. Using wrist activity (mean recording length = 12.9 days, minimum = 6 days), we calculated average hourly activity levels and then assessed when activity levels relate to depression symptoms and changes in symptoms 6 months later.
Clustering identified subgroups characterized by: (1) no/minimal symptoms (36%) and (2) depression symptoms (64%). After multiple comparison correction, the group of dCGs with depression symptoms was less active from 8 to 10 AM (Cohen’s d ≤ −0.9). These morning activity levels predicted the degree of symptom change on the PHQ-9 6 months later (per SD unit β = −0.8, 95% confidence interval: −1.6, −0.1, p = 0.03) independent of self-reported activity restriction and other key factors.
These novel findings suggest that morning activity may protect dCGs from depression symptoms. Future studies should test whether helping dCGs get active in the morning influences the other features of depression in this population (i.e. insomnia, intrusive thoughts, and perceived activity restriction).
The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity.
A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis.
The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called “KOMMA” was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers’ needs at the cost of the patients.
Significance of results
A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.
The final chapter lays out strategies for reducing poverty and discusses three areas of work. The first is to pursue a broader frame for the work in order to command national attention more effectively, by including people with incomes twice the poverty lines and emphasizing both the interests of people of all races and the unique interests of people of color and of women, and by fighting the ever-widening chasm of inequality as well. The second is to consolidate our work about issues of income, jobs, and cash assistance, which the chapter calls the three-legged stool. It argues that past strategies have tended to consider these areas in isolation, not thinking of them coordinately and, therefore, failing to produce the most effective results possible. Wages, quality, and income supplements for workers; job creation as needed; and cash assistance must work in tandem to get the best outcomes. Finally, to move forward in very low-income areas (both urban and rural), actors must have a perspective of place that addresses all the multiple causes that produce the high poverty.
Despite considerable academic attention to the role of family caregivers within the general population, little research has been conducted with Indigenous families. This qualitative study aims to fill that gap by focusing on the experiences of Metis caregivers providing care for older Metis adults. Focus groups and interviews were conducted with Metis family caregivers (n = 79), Metis Elders (n = 11) and formal caregivers (n = 8). Although there are considerable parallels in the caregiving experiences identified in this Metis study with those already documented in the literature, there are nonetheless important differences for providing culturally responsive care to Metis seniors.
This study aims to investigate the influence of work experience variables on the emotional state of worker-caregivers based on stress process model. The emotional state (depression, negative and positive affect and worry-strain), caregiver and care recipient features, caregiving stressors and appraisal, and role strains/work-related variables were assessed in 83 worker-caregivers of elderly dependent relatives. Hierarchical multiple linear regression analyses were performed for each of the four emotional outcome variables. Caregiving overload and positive job experience were the best predictors of depression and positive affect. The predictors of negative affect were reaction to memory and behavior problems, overload and role captivity. The predictors of worry and strain were daily hours of caregiving worries, reaction to memory and behavior problems, overload, role captivity and job-caregiving conflicts. The explained variances for the four models were 58.8%, 40.2%, 62.9% and 78.8%, respectively; the role strain contributions were 8.2%, 13.2%, 7.2% and 6%. The results indicate that the effect of perceived job experiences on caregivers’ emotional status is more relevant than objective job conflicts. In addition, caregivers’ emotional state is primarily related to the subjective indicators of caregiving stressors, with a lower contribution of work-related variables.
Age-related dementias present a significant health concern in Canada, particularly for Indigenous communities, in which rates of dementia are estimated to be 34 per cent higher than in the general Canadian population. This article reports on a qualitative evidence synthesis of available literature concerning cultural understandings of dementia in Indigenous peoples in Canada. Key findings suggest that although exploration of this topic is on the rise in Canada, there remains a paucity of research on this topic, particularly among the Inuit and Métis. The synthesis of the literature found that dementia is viewed as a natural part of the life cycle by many Indigenous people; and although this presents significant challenges for caregivers, informal and community models of care are routinely practiced. This synthesis will be useful for health care providers and organizations that are searching for appropriate approaches to respond to the needs of Indigenous patients and families experiencing dementia.
The number of grandmothers who provide regular care for their grandchildren and do housework for their daughters or daughters-in-law is increasing in Turkey. While perpetuating traditional gender roles for themselves as a surrogate daughter, wife, or daughter-in-law, these women nonetheless enable younger women to distance themselves from obligatory care work at home. The sociocultural concepts of kinship ties, economic need, or love for grandchildren do not fully explain why grandmothers assume the role of caregiver for their grandchildren. Drawing on interviews with 25 grandmothers from middle-class families in urban Turkey, this article shows, first, that these women’s gendered subjectivity is formed by both habitual and intentional actions that defying the oppression and resistance duality within patriarchal Turkish society. Second, in dialogue with the scholarship on the “classic patriarchal bargain”1 and feminist analyses of neoliberal social policy, the article suggests that these grandmothers’ inarticulate desire to live in solidarity with the younger generation of women may be turned into a government instrument in the context of Turkey’s increasingly family-centered neoliberal social policy environment.
Adverse caregiving, for example, previous institutionalization (PI), is often associated with emotion dysregulation that increases anxiety risk. However, the concept of developmental multifinality predicts heterogeneity in anxiety outcomes. Despite this well-known heterogeneity, more work is needed to identify sources of this heterogeneity and how these sources interact with environmental risk to influence mental health. Here, working memory (WM) was examined during late childhood/adolescence as an intra-individual factor to mitigate the risk for separation anxiety, which is particularly susceptible to caregiving adversities. A modified “object-in-place” task was administered to 110 youths (10–17 years old), with or without a history of PI. The PI youths had elevated separation anxiety scores, which were anticorrelated with morning cortisol levels, yet there were no group differences in WM. PI youths showed significant heterogeneity in separation anxiety symptoms and morning cortisol levels, and WM moderated the link between caregiving and separation anxiety and mediated the association between separation anxiety and morning cortisol in PI youth. Findings suggest that (a) institutional care exerts divergent developmental consequences on separation anxiety versus WM, (b) WM interacts with adversity-related emotion dysregulation, and (c) WM may be a therapeutic target for separation anxiety following early caregiving adversity.
Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.
Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).
More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”
Significance of results
One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.
The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads.
Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer’s Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale).
In adjusted models, the PWD’s well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad’s relationship. The CP’s well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain.
Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad’s relationship quality.
Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women.
Multivariate hierarchical linear regression model
Lower-income neighborhoods in an urban setting in the Midwestern USA
144 care network members of White and African American women aged ≥ 65 years
Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness.
In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional.
Findings from the present study are consistent with past research suggesting that ‘ageism’ may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.
Objective: To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods: The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.
Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity. Survey data (n = 22) revealed that perceived coping support (e.g., having someone to turn to), social interactions, and caregiver identity (e.g., perceiving the role as important to one’s self-concept) were associated with lower life upset stress, but only caregiver identity was associated with managing the personal distress and negative feelings associated with caregiving stress. Results suggest that, although available rural services may fall short, other options might alleviate caregiver stress, including facilitating access to coping support, encouraging social interactions, and enhancing caregiver social identity.
Frontotemporal degeneration (FTD) dementia often begins before age 60 and predominantly presents as four subtypes with prominent features of language, behavior, cognition, and motor symptoms. The early onset and unique symptoms place a distinct burden on caregivers of individuals with FTD versus other dementia types, such as Alzheimer’s disease. This is the first known study to examine the domains of the FTD caregiver burden and the caregiver and patient characteristics associated with these domains.
In 2017, 674 FTD caregivers in the United States (US) completed a web-based survey of caregiver and patient demographics, disease severity/symptoms, caregiver burden, and financial costs of caregiving. The major factors of caregiver burden (Zarit Burden Inventory) were determined using a principal axis factor analysis with varimax rotation. Multiple linear regression analyses examined caregiver and patient characteristics associated with overall burden and three major factors of burden: role strain, personal strain, and performance strain.
Increased neuropsychiatric symptoms was associated with overall caregiver burden and greater role, personal, and performance strain. Younger caregivers experienced greater overall burden and performance strain, female caregivers experienced increased role strain, and male caregivers experienced greater performance strain. Financial costs of caregiving and experiencing a caregiving crisis in the past year were associated with higher overall burden and role strain.
This study suggests that the severity and sources of burden differ for caregivers of FTD patients versus patients with other dementia types. Differing predictors for each burden domain suggest targeted interventions to address the unique FTD caregiving challenges.
Approximately seven million people in the UK are engaged in informal caregiving. Informal caregivers are at risk of poorer mental and physical health. However, less is known about how the relationship between the informal caregiving and psychological distress changes over time. The aim of this study was to investigate longitudinal associations between the informal caregiving and psychological distress amongst UK men and women aged 16+.
Data were analysed from the UK Household Longitudinal Study (UKHLS, n = 9368), a nationally representative study of UK households. Longitudinal linear mixed modelling was used to estimate associations between the longitudinal patterns of informal caregiving (non-caregiver/one episode of 1–2 years/intermittent caregiving/3+ years caregiving) and trajectories of psychological distress across seven waves of UKHLS data.
Informal caregiving was not associated with psychological distress for men. Women engaged in long-term (⩾3 years) or intermittent caregiving had higher levels of psychological distress at the point of initiation, compared with women who were not caregivers throughout the study period (3+ years caregiver: regression coefficient 0.48, 95% confidence interval (CI) 0.07–0.89; intermittent caregiver: regression coefficient 0.47, 95% CI 0.02–0.92). Trajectories of psychological distress changed little over time, suggesting a plateau effect for these caregiving women.
Women engaged in long-term or repeated shorter episodes of informal caregiving reported more symptoms of psychological distress than non-caregiving women. Given the increased risk of reporting psychological distress and the increasing importance of the informal care sector, the risk of poorer mental health of informal caregivers should be a priority for public health.
The care of community-dwelling people with dementia often occurs in the context of pre-existing family relationships. The presence of dementia can result in changes to the quality of those relationships. The purpose of this systematic review is to identify factors that enhance or challenge the quality of spousal or offspring relationships in the context of dementia.
Both qualitative and quantitative studies were included in a systematic review of the literature. Thematic analysis of results was conducted that examined factors related to the relationship quality of community dwelling people with dementia and their spousal or offspring carer. Meta-analysis was not possible due to the heterogeneity of the included studies.
Four themes were extracted from seven qualitative studies: connection to the carer role; identity of the people with dementia; current efforts to maintain relationship connection; and the dyads response to dementia. Each of these four themes incorporated positive and negative facets that impacted on relationship quality. An analysis of nine quantitative and one mixed methods studies identified four domains: influence of dementia characteristics; connection within the dyad; relationship response to stress and carer burden; and carer demographic factors.
The findings of this review highlight relationship factors that are important for supporting relationship quality for the people with dementia and the carer individually, as well as for the dyad together. These findings extend an existing framework of relationship quality in dementia. Implications for interventions to enhance relationship quality in the dementia context are discussed.
For this study, we adapted the Montgomery Borgatta Caregiver Burden Scale, used widely in the United States, to the Saudi Arabian context. To produce an Arabic, culturally sensitive version of the scale, we conducted semi-structured interviews with 20 Saudi family caregivers. The Arabic version of the scale was tested, and participants were asked to comment on the appropriateness of items for the construct of “caregiver burden” using the repertory grid technique and laddering procedure – two constructivist methods derived from personal construct theory. From interview findings, we examined the content of the items and the caregiver burden construct itself. Our findings suggest that the use of constructivist methods to refine constructs and quantitative instruments is highly informative. This strategy is feasible even when little is known about the investigated constructs in the target culture and further elucidates our understanding of cross-cultural variations or invariance of different versions of the scale.
Although foreign domestic workers (FDWs) play a significant role in caring for frail seniors in Singapore and are vulnerable to caregiving burden, there has been little research conducted hitherto. We explored caregiver burden and its determinants in this study.
FDWs (N = 221, Mage = 32.3, SD = 6.23) recruited from a hospital geriatric unit completed the Zarit Burden Interview (ZBI) administered in English, Bahasa Melayu, or Burmese. Univariate and multivariate regression were employed to investigate factors influencing caregiving burden in FDWs.
Majority were Indonesians (60.0%), married (57.5%) with children (62.4%), with secondary-level education (59.7%), and providing care for >1 year (79.9%). Importantly, 25.1% reported physical health problems and 23.1% encountered language difficulties with employers. Univariate analysis revealed three significant factors associated with caregiving burden: nationality (p < 0.001), lack of privacy (p = 0.029), and caring for persons with dementia (PWD) (p = 0.001). On multivariate regression, FDWs who cared for PWD were 5.47 times (p = 0.013) more likely to experience burden, while FDWs who encountered language difficulties were 5.46 times (p = 0.030) more likely to experience burden. Filipinos FDWs were 9.73 times more likely to express burden (p < 0.001) compared to their Indonesian and Burmese counterparts.
The study highlights caregiver burden in FDWs and potential ways to alleviate it by empowering FDWs with dementia-specific caregiving skills, providing language training opportunities, and supporting particular FDW ethnic groups with more emotional and practical help.