Abstract:Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, “Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia.” Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their … Show more
“…With training in active listening, empathic response and other relevant skills, direct care workers can reduce social isolation, provide emotional support and, with additional training, help administer nonpharmacological treatments -such as music and pet therapy and personcentered bathing -to prevent or reduce distress associated with dementia. [764][765][766][767] Direct care workers also support quality outcomes and cost savings. Direct care workers providing in-home care enable individuals to continue living at home and help prevent or delay nursing home placement.…”
This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non‐physician health care professionals. An estimated 6.9 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 or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. 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 in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth‐leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. 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 $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers’ increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community‐based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, including the absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community‐based workers to provide dementia care. 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 2024 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non‐physician health care professionals play in facilitating clinical care and access to community‐based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.
“…With training in active listening, empathic response and other relevant skills, direct care workers can reduce social isolation, provide emotional support and, with additional training, help administer nonpharmacological treatments -such as music and pet therapy and personcentered bathing -to prevent or reduce distress associated with dementia. [764][765][766][767] Direct care workers also support quality outcomes and cost savings. Direct care workers providing in-home care enable individuals to continue living at home and help prevent or delay nursing home placement.…”
This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non‐physician health care professionals. An estimated 6.9 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 or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. 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 in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth‐leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. 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 $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers’ increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community‐based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, including the absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community‐based workers to provide dementia care. 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 2024 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non‐physician health care professionals play in facilitating clinical care and access to community‐based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.
“…(3) being in the moment (i.e., responding to the scenario); and (4) viewing all encounters as opportunities for meaningful engagement (Kemp et al, 2021). Subsequent analysis identified "engagement capacity" as pivotal to the negotiation of meaningful engagement (Kemp et al, 2023). Researchers defined capacity as "the amount and nature of engagement resources associated with individuals, care convoys, and settings" (italics original, p. 861).…”
Section: Applications Of Study Findingsmentioning
confidence: 99%
“…Given improv’s potential, this gap represents an opportunity for improving dementia care experiences especially because its mindset and techniques can be learned in fun and engaging ways. As shown in Figure 1, each care partner has individualized engagement capacity, which is influenced by their (a) willingness and availability; (b) roles and responsibilities; (c) approaches and strategies; and (d) dementia care training, knowledge, and competencies (see Kemp et al, 2023). Based on analysis of our data and existing research and focusing on (c) and (d), we hypothesize that improv training for care partners will increase their engagement capacity through the acquisition of key competencies and application of improv leading to increases in meaningful engagement among persons living with dementia, which in turn, will improve outcomes for care partners and care recipients.Figure 1.Building care partner capacity through improv training in the dementia care context.…”
Section: Skill Development and Applicationmentioning
confidence: 99%
“…This research identified four approaches used by formal and informal care partners to promote meaningful engagement among those with dementia: (1) knowing the person; (2) connecting with and meeting persons where they are (i.e., joining versus arguing); (3) being in the moment (i.e., responding to the scenario); and (4) viewing all encounters as opportunities for meaningful engagement (Kemp et al, 2021). Subsequent analysis identified “engagement capacity” as pivotal to the negotiation of meaningful engagement (Kemp et al, 2023). Researchers defined capacity as “ the amount and nature of engagement resources associated with individuals, care convoys, and settings ” ( italics original , p. 861).…”
Improvisational (improv) theatre skill development holds promise for improving the dementia capability of care partners. In this report, we present analysis of data from an ongoing study on meaningful engagement and quality of life among assisted living (AL) residents with dementia. Using ethnographic methods, we collected data from persons with dementia ( n = 59) and their care partners ( n = 165) in six diverse AL communities each studied for one year. Building cumulatively on past work and existing literature, we demonstrate the potential benefits of training care partners to use improv skills. We discuss implications, including the need for intervention research.
“…Our work comes from an ongoing 5-year qualitative study focused on meaningful engagement and quality of life among assisted living residents with dementia (see Kemp et al, 2023; Kemp et al, forthcoming for details). Here, we draw on qualitative data collected between 2019 and 2020 through participant observation in four diverse AL facilities (see Table 1) and captured in fieldnotes.…”
Assisted living (AL) simultaneously is home to older adults who cannot live independently and a place where people work and visit and, therefore, where value conflicts are apt to arise. In this report we present the “Typology of Ethical Issues in Assisted Living” with emphasis on its development. The typology derives from a synthesis of frameworks used in acute care spaces adapted and applied to data collected as part of an ethnographic study involving AL residents with dementia. Our work advances knowledge and has implications for future research and practice.
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