Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

Kumar, Vishesh; Ankuda, Claire K.; Aldridge, Melissa D.; Husain, Mohammad; Ornstein, Katherine

doi:10.1111/jgs.16648

Cited by 31 publications

(31 citation statements)

References 44 publications

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“…The same study found that 72% of family caregivers experienced relief when the person with Alzheimer's or another dementia died 445 . In the last 12 months of life, people with dementia relied on more hours of family care (64.5 hours per week) than people with cancer (39.3 hours per week) 446 . In addition, caregivers living with a family member with dementia pay for 64% of total care costs incurred during their family member's last seven years of life 447 …”

Section: Caregivingmentioning

confidence: 95%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

1,787

849

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the challenges of providing equitable health care for people with dementia in the United States. An estimated 6.2 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, the latest year for which data are available, making Alzheimer's the sixth‐leading cause of death in the United States and 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 in 2020 by the COVID‐19 pandemic. More than 11 million family members and other unpaid caregivers provided an estimated 15.3 billion hours of care to people with Alzheimer's or other dementias in 2020. 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 $256.7 billion in 2020. 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. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2021 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $355 billion. Despite years of efforts to make health care more equitable in the United States, racial and ethnic disparities remain — both in terms of health disparities, which involve differences in the burden of illness, and health care disparities, which involve differences in the ability to use health care services. Blacks, Hispanics, Asian Americans and Native Americans continue to have a higher burden of illness and lower access to health care compared with Whites. Such disparities, which have become more apparent during COVID‐19, extend to dementia care. Surveys commissioned by the Alzheimer's Association recently shed new light on the role of discrimination in dementia care, the varying levels of trust between racial and ethnic groups in medical research, and the differences between groups in their levels of concern about and awareness of Alzheimer's disease. These findings emphasize the need to increase racial and ethnic diversity in both the dementia care workforce and in Alzheimer's clinical trials.

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Section: Caregivingmentioning

confidence: 95%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

1,787

849

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“…482 • In the last 12 months of life, people with dementia relied on more hours of family care (64.5 hours per week) than people with cancer (39.3 hours per week). 483 In addition, caregivers living with a family member with dementia pay for 64% of total care costs incurred during their family members' last seven years of life. 484…”

Section: Burden and Stressmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,438

664

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 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, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes 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%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. 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 $271.6 billion in 2021. 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 dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. 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 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

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“…Given the importance of the informal social network for hospice family caregivers and the potential for stress/support ambivalence within these networks, examining both in the context of EOL caregiving may provide important insight into how the need to balance stress and support affects caregivers' outcomes. Despite this, the composition of hospice family caregivers' informal social networks and the potential for stress/support ambivalence within relationships with network members have received little attention in the research literature (Jacobs et al, 2016;Kumar et al, 2020;Roth, 2020a).…”

Section: Potential For Stress and Support Ambivalence Within Support Relationshipsmentioning

confidence: 99%

Patterns of stress and support in social support networks of in-home hospice cancer family caregivers

Guo

Reblin

Tay

et al. 2021

Journal of Social and Personal Relationships

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Family caregivers of home hospice cancer patients often experience burden and distress, which can be mitigated by perceived social support. However, less attention has been paid to the non-family sources of support within social networks, or to how sources of support may also be sources of stress. We describe support and stress in social networks of hospice family caregivers and identify caregiving characteristics associated with classes identified in our data. We collected demographic and psychosocial self-report data from family caregivers providing in-home hospice care for advanced cancer patients (N = 90). Caregivers also reported perceived support and stress from specific family and non-family relationships. We identified three classes with unique patterns of stress and support within caregivers’ support networks using a latent class analysis. Classes include: (1) high support, low stress across family and non-family network members (“supportive”; 53% of caregivers); (2) high support, high stress across family and non-family network (“ambivalent maximizers”; 26%); and (3) high support, high stress across family network only (“family-focused ambivalent”; 21%). Caregivers in the ambivalent maximizer class reported more burden than caregivers in the supportive class ( p = .024). This is one of the first studies to systematically explore the role of non-family support, as well as how stress and support co-occur within relationships and across networks. As informal support networks of hospice family caregivers are complex and multifaceted, understanding the patterns of support and stress across various network members is essential to offer services to more effectively manage caregiver burden.

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Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

Cited by 31 publications

References 44 publications

2021 Alzheimer's disease facts and figures

2021 Alzheimer's disease facts and figures

2022 Alzheimer's disease facts and figures

Patterns of stress and support in social support networks of in-home hospice cancer family caregivers

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