A day in the life of caregivers to older adults with and without dementia: Comparisons of care time and emotional health

Freedman, Vicki A.; Patterson, Sarah; Cornman, Jennifer C.; Wolff, Jennifer L.

doi:10.1002/alz.12550

Cited by 19 publications

(20 citation statements)

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“…The patient portal has been embraced as a mainstream strategy to engage patients in their care, 9 , 18 yet care partners have been largely excluded from accumulating knowledge and interventional efforts, 9 , 18 , 19 , 67 despite their essential role in managing and coordinating care alongside patients who are most vulnerable. 68 , 69 , 70 One small study 21 suggests the feasibility of systems-level strategies to increase care partner registration and use of portal, although further work is needed to understand prospects for broader scaling. We observed similar issues across the age span from adolescents through older adults, with care partners (from parents of adolescents to adult children of older adults) primarily accessing the patient portal using patient log-in credentials.…”

Section: Discussionmentioning

confidence: 99%

“…By compiling available evidence regarding care partner involvement in the patient portal, our study contributes new knowledge in an area that has been only anecdotally recognized to date. The patient portal has been embraced as a mainstream strategy to engage patients in their care, yet care partners have been largely excluded from accumulating knowledge and interventional efforts, despite their essential role in managing and coordinating care alongside patients who are most vulnerable . One small study suggests the feasibility of systems-level strategies to increase care partner registration and use of portal, although further work is needed to understand prospects for broader scaling.…”

Section: Discussionmentioning

confidence: 99%

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Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

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ImportanceFamily and other unpaid care partners may bridge accessibility challenges in interacting with the patient portal, but the extent and nature of this involvement is not well understood.ObjectiveTo inform an emerging research agenda directed at more purposeful inclusion of care partners within the context of digital health equity by (1) quantifying care partners’ uptake and use of the patient portal in adolescent and adult patients, (2) identifying factors involving care partners’ portal use across domains of the System Engineering Initiative for Patient Safety model, and (3) assessing evidence of perceived or actual outcomes of care partners’ portal use.Evidence ReviewFollowing Arksey and O’Malley’s methodologic framework, a scoping review of manuscripts published February 1 and March 22, 2022, was conducted by hand and a systematic search of PubMed, PsycInfo, Embase, and Web of Science. The search yielded 278 articles; 125 were selected for full-text review and 41 were included.FindingsFew adult patient portal accounts had 1 or more formally registered care partners (&lt;3% in 7 of 7 articles), but care partners commonly used the portal (8 of 13 contributing articles reported &gt;30% use). Care partners less often authored portal messages with their own identity credentials (&lt;3% of portal messages in 3 of 3 articles) than with patient credentials (20%-60% of portal messages in 3 of 5 articles). Facilitators of care partner portal use included markers of patient vulnerability (13 articles), care partner characteristics (15 articles; being female, family, and competent in health system navigation), and task-based factors pertaining to ease of information access and care coordination. Environmental (26 articles) and process factors (19 articles, eg, organizational portal registration procedures, protection of privacy, and functionality) were identified as influential to care partner portal use, but findings were nuanced and precluded reporting on effects. Care partner portal use was identified as contributing to both patient and care partner insight into patient health (9 articles), activation (7 articles), continuity of care (8 articles), and convenience (6 articles).Conclusions and RelevanceIn this scoping review, care partners were found to be infrequently registered for the patient portal and more often engaged in portal use with patient identity credentials. Formally registering care partners for the portal was identified as conferring potential benefits for patients, care partners, and care quality.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

et al. 2022

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Section: Caregivingmentioning

confidence: 99%

“…Sexual gender minority dementia caregivers are significantly younger and more likely to be employed than heterosexual dementia caregivers and indicate greater difficulty when paying for necessities while also reporting higher family quality of life than their heterosexual peers 490 Providing physical and medical care is associated with worse mental health among dementia caregivers than non‐dementia caregivers 450 …”

Section: Caregivingmentioning

confidence: 99%

“…Although the care provided by family members of people with Alzheimer's or other dementias is somewhat similar to that provided by caregivers of people with other conditions, dementia caregivers tend to provide more extensive assistance. 450 Family caregivers of people with dementia are more likely to monitor the health of the care recipient than are caregivers of people without dementia (79% versus 66%). 451 Data from the 2011 National Health and Aging Trends Study indicated that caregivers of people with dementia are more likely than caregivers of people without dementia to provide help with self-care and mobility (85% versus 71%) and health or medical care (63% versus 52%).…”

Section: Caregiving Tasksmentioning

confidence: 99%

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2023 Alzheimer's disease facts and figures

2023

Alzheimer's & Dementia

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This article describes the public health impact of Alzheimer's disease, including prevalence and incidence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report examines the patient journey from awareness of cognitive changes to potential treatment with drugs that change the underlying biology of Alzheimer's. An estimated 6.7 million Americans age 65 and older are living with Alzheimer's dementia today.This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, and Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated by the COVID-19 pandemic in 2020 and 2021. More than 11 million family members and other unpaid caregivers provided an estimated 18 billion hours of care to people with Alzheimer's or other dementias in 2022. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $339.5 billion in 2022. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the paid health care workforce are involved in diagnosing, treating and caring for people with dementia. In recent years, however, a shortage of such workers has developed in the United States. This shortage -brought about, in part, by COVID-19 -has occurred at a time when more members of the dementia care workforce are needed. Therefore, programs will be needed to attract workers and better train health care teams. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2023 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $345 billion. The Special Report examines whether there will be sufficient numbers of 1598

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A day in the life of caregivers to older adults with and without dementia: Comparisons of care time and emotional health

Freedman

Patterson

Cornman

et al. 2022

Alzheimer's & Dementia

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Introduction: How care-related time and emotional health over the day differ for those assisting older adults with and without dementia is unclear.Methods: Using 2134 time diaries from the National Study of Caregiving, we compared emotional health and care time for caregivers of older adults with and without dementia.Results: Caregivers to older adults with dementia experienced worse (higher scores) on a composite measure of negative emotional health (4.2 vs 3.3; P < .05) and provided more physical/medical care (33.7 vs 16.2 minutes; P < .05) and less transportation assistance (12.6 vs 24.8 minutes; P < .05) than other caregivers. In models, providing physical/medical care was associated with worse emotional health (β = 0.15; P < .01) and socializing with the care recipient was associated with worse emotional health when the recipient had dementia (β = 0.28; P < .01).

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A day in the life of caregivers to older adults with and without dementia: Comparisons of care time and emotional health

Cited by 19 publications

References 29 publications

Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

2023 Alzheimer's disease facts and figures

A day in the life of caregivers to older adults with and without dementia: Comparisons of care time and emotional health

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