“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

Macleod, Ashley; Tatangelo, Gemma; McCabe, Marita P.; You, Emily

doi:10.1017/s1041610216002532

Cited by 66 publications

(98 citation statements)

References 28 publications

(49 reference statements)

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“…Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior‐related problems—corroborating our stakeholders' experiences about accessing emergency services out of “desperation” and lack of knowledge about other options . Prior studies also identified needs for improved care coordination, communication and trust between providers/clinics and caregivers, and dementia‐friendly ED environments …”

Section: Discussionmentioning

confidence: 54%

“…The range of needs described in themes 1 and 2 are generally consistent with prior research on dementia care in healthcare settings. Needs commonly described include receiving relevant information about dementia management, disease progression, and symptoms, provider's lack of knowledge or inability to provide useful community resources, and accessing sources of support for psychological distress . Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior‐related problems—corroborating our stakeholders' experiences about accessing emergency services out of “desperation” and lack of knowledge about other options .…”

Section: Discussionmentioning

confidence: 64%

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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BACKGROUND/OBJECTIVES People with dementia (PwD) frequently use emergency care services. To mitigate the disproportionately high rate of emergency care use by PwD, an understanding of contributing factors driving reliance on emergency care services and identification of feasible alternatives are needed. This study aimed to identify clinician, caregiver, and service providers' views and experiences of unmet needs leading to emergency care use among community‐dwelling PwD and alternative ways of addressing these needs. DESIGN Qualitative, employing semistructured interviews with clinicians, informal caregivers, and aging service providers. SETTING Wisconsin, United States. PARTICIPANTS Informal caregivers of PwD (n = 4), emergency medicine physicians (n = 4), primary care physicians (n = 5), geriatric healthcare providers (n = 5), aging service providers (n = 6), and community paramedics (n = 3). MEASUREMENTS Demographic characteristics of participants and data from semistructured interviews. FINDINGS Four major themes were identified from interviews: (1) system fragmentation influences emergency care use by PwD, (2) informational, decision‐making, and social support needs influence emergency care use by PwD, (3) emergency departments (EDs) are not designed to optimally address PwD and caregiver needs, and (4) options to prevent and address emergency care needs of PwD. CONCLUSION Participants identified numerous system and individual‐level unmet needs and offered many recommendations to prevent or improve ED use by PwD. These novel findings, aggregating the perspectives of multiple dementia‐care stakeholder groups, serve as the first step to developing interventions that prevent the need for emergency care or deliver tailored emergency care services to this vulnerable population through new approaches. J Am Geriatr Soc 67:711–718, 2019.

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Section: Discussionmentioning

confidence: 54%

Section: Discussionmentioning

confidence: 64%

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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“…The burdens of caregiving include physical, psychological, and financial hardships and can have serious consequences for caregivers’ overall health, immune functioning, and longevity . Evidence‐based interventions such as education and skills training, respite care, and psychosocial support have been developed to enhance caregiver health and minimize burden, but fewer than 25% of family caregivers use these services because of lack of awareness, lack of accessibility, or cultural beliefs about caregiving responsibilities …”

mentioning

confidence: 99%

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Riffin

Ness

Wolff

et al. 2017

J American Geriatrics Society

147

121

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OBJECTIVES To estimate the number of caregivers providing assistance to a nationally-representative sample of community-dwelling older persons with and without dementia and/or substantial disability; describe the characteristics of caregivers and care recipients across these groups; characterize the health-related tasks caregivers provide; and estimate associations between the numbers of tasks and caregiver burden. DESIGN Nationally-representative surveys of caregivers and older adults in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community-dwelling older adults and their family caregivers, selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. MEASUREMENTS Caregiver burden (comprised of emotional, physical and financial difficulties) and restrictions on social participation. RESULTS While much larger proportions of older adults with dementia and disability (98.4%; 1.0 million) and dementia but not disability (95.5%; 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance was older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of ADL/IADL-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between the number of tasks provided and risk for burden across virtually all caregiver groups and domains of assistance. CONCLUSIONS Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia and/or disability, delivered a broad spectrum of health-related tasks, and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high-risk.

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“…Nursing care services are offered based on the support‐need or care‐need level. However, there are substantial numbers of people with dementia and family caregivers who do not wish to use social care services or apply for certification . These participants were classified in the “did not apply” group, and they were assumed to have met the lowest level of care required in the present study, because they did not use social care services.…”

Section: Methodsmentioning

confidence: 99%

Increase in direct social care costs of Alzheimer's disease in Japan depending on dementia severity

Takechi

Kokuryu

Kuzuya

et al. 2019

Geriatrics Gerontology Int

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Aim With the aging population, costs of direct social support for patients with Alzheimer's disease have grown and will continue to increase. The purpose of the present study was to estimate the cost of direct social support for Alzheimer's disease under long‐term care insurance in Japan. Methods This cross‐sectional study included 169 patients with Alzheimer's disease or mild cognitive impairment who visited a memory clinic and were followed over time. Dementia severity, use of care services and costs were analyzed. Results The use of direct social support and costs increased significantly between patients with mild, moderate and severe dementia (P < 0.001). In particular, the use of day services and short stay services increased with the severity of dementia (P < 0.001). Similar findings were obtained when participants were stratified by long‐term care insurance care levels. Of 169 participants, 49 had not applied for long‐term care insurance, although their dementia severity was not different from support‐need level 1 and care‐need level 1. Logistic regression analysis of “did not apply” and “applied and certified” groups showed significant differences not only in dementia severity, but also in age (odds ratio 1.112, 95% confidence interval 1.037–1.193, P = 0.003) and living arrangements (odds ratio 0.257, 95% confidence interval 0.076–0.862, P = 0.028). Conclusions As the number of patients with Alzheimer's disease increases, direct social costs will increase. The findings of this study might help standardize the type of direct social support provided after diagnosis of Alzheimer's disease and contribute to the development of cost‐effective care for these patients. Geriatr Gerontol Int 2019; 19: 1023–1029.

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“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

Abstract: Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Cited by 66 publications

References 28 publications

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Increase in direct social care costs of Alzheimer's disease in Japan depending on dementia severity

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