Family support in late life: A review of the literature on aging, disability, and family caregiving

Grossman, Brian R.; Webb, Catherine E.

doi:10.1080/10522158.2016.1233924

Cited by 41 publications

(29 citation statements)

References 120 publications

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“…Cès et al ., 2017) and who they care for ( e.g. Grossman and Webb, 2016). However, most studies to date are focused on a period of care to a specific care receiver such as a parent or a spouse; or by carers at a particular place in the lifecourse ( e.g.…”

Section: Lifetimes Of Family Carementioning

confidence: 99%

Trajectories of family care over the lifecourse: evidence from Canada

et al. 2020

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In the midst of a 'care crisis', attention has turned again to families who are viewed both as untapped care resources and as disappearing ones. Within this apparent policy/demographic impasse, we test empirically theorised trajectories of family care, creating evidence of diverse patterns of care across the lifecourse. The study sample, drawn from a Statistics Canada national survey of family care, comprised all Canadians aged 65 and older who had ever provided care (N = 3,299). Latent Profile Analysis yielded five distinct care trajectories: compressed generational, broad generational, intensive parent care, career care and serial care. They differed in age of first care experience, number of care episodes, total years of care and amount of overlap among episodes. Trajectories generally corresponded to previously hypothesised patterns but with additional characteristics that added to our understanding of diversity in lifecourse patterns of care. The five trajectories identified provide the basis for further understanding how time and events unfold in various ways across lifecourses of care. A gap remains in understanding how relationships with family and social network members evolve in the context of care. A challenge is presented to policy makers to temper a 'families by stealth' policy approach with one that supports family carers who are integral to health and social care systems.

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Section: Lifetimes Of Family Carementioning

confidence: 99%

Trajectories of family care over the lifecourse: evidence from Canada

et al. 2020

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“…Consequently, participants and their caregivers have thus far been the much deserved focus of research on training needs and development of training materials to increase preparedness for the caregiving role (e.g. see Alzheimer's Association, 2018; Grossman & Webb, 2016; National Academies of Sciences, Engineering, and Medicine [NAS], 2016)). In contrast, partly due to the relatively recent expansion of SD programs for individuals with dementia, there has been little focus on the needs of people who are assuming the important role of participant representative.…”

Section: Self-directed Home and Community-based Servicesmentioning

confidence: 99%

Preparedness of representatives for people with dementia in a self-directed program

Mahoney

Simon-Rusinowitz

Loughlin

et al. 2018

Journal of Gerontological Social Work

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Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.

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“…In a recent review of the literature on aging, disability, and family caregiving, Grossman and Webb (2016) state that while much literature describes the work and negative impacts, less attention has been paid to the supports used by family caregivers. They identify the value of research that crosses the boundaries of population types and of qualitative research to explore the influence of programs on caregivers' experience.…”

Section: Introductionmentioning

confidence: 99%

“I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs

Milliken

Mahoney

et al. 2018

Journal of Gerontological Social Work

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Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

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Family support in late life: A review of the literature on aging, disability, and family caregiving

Cited by 41 publications

References 120 publications

Trajectories of family care over the lifecourse: evidence from Canada

Trajectories of family care over the lifecourse: evidence from Canada

Preparedness of representatives for people with dementia in a self-directed program

“I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs

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