Reconsidering frameworks of Alzheimer's dementia when assessing psychosocial outcomes

Gaugler, Joseph E.; Bain, Lisa J.; Mitchell, Lauren; Finlay, Jessica; Fazio, Sam; Jutkowitz, Eric; Banerjee, Sube; Butrum, Kim; Gitlin, Laura N.; Hodgson, Nancy; Kallmyer, Beth; Meyer, Oanh L.; Logsdon, Rebecca G.; Maslow, Katie; Zimmerman, Sheryl

doi:10.1016/j.trci.2019.02.008

Cited by 55 publications

(57 citation statements)

References 73 publications

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“…This person‐centered care philosophy not only values and respects the individual with dementia, but also promotes well‐being and health 563,564 . This framework is designed to shift how researchers and care providers think about dementia, and may point the way to a greater understanding of the resilience, adaptability, and the possibilities of maintenance or even improvement of skills and abilities when living with dementia 565,566 . A core element of this and other frameworks is ensuring that every experience and interaction is seen as an opportunity to have authentic and meaningful engagement, which in turn helps create a better quality of life for the person with dementia.…”

Section: Caregivingmentioning

confidence: 99%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

1,865

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: 99%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

1,865

849

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“…This person‐centered care philosophy not only values and respects the individual with dementia, but also promotes well‐being and health 517 . This new framework is designed to shift how researchers and care providers think about dementia, and may point the way to a greater understanding of the resilience, adaptability, and the possibilities of maintenance or even improvement of skills and abilities when living with dementia 518,519 . A core element of this and other frameworks is to ensure that every experience and interaction is seen as an opportunity to have meaningful engagement, which in turn helps create a better quality of life for the person with dementia.…”

Section: Caregivingmentioning

confidence: 99%

2020 Alzheimer's disease facts and figures

2020

Alzheimer's & Dementia

2,033

653

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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 future challenges of meeting care demands for the growing number of people living with Alzheimer's dementia in the United States with a particular emphasis on primary care. By mid‐century, the number of Americans age 65 and older with Alzheimer's dementia may grow to 13.8 million. This represents a steep increase from the estimated 5.8 million Americans age 65 and older who have Alzheimer's dementia today. Official death certificates recorded 122,019 deaths from AD in 2018, 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 2018, deaths resulting from stroke, HIV and heart disease decreased, whereas reported deaths from Alzheimer's increased 146.2%. In 2019, more than 16 million family members and other unpaid caregivers provided an estimated 18.6 billion hours of care to people with Alzheimer's or other dementias. This care is valued at nearly $244 billion, but its costs extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes. 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 2020 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $305 billion. As the population of Americans living with Alzheimer's dementia increases, the burden of caring for that population also increases. These challenges are exacerbated by a shortage of dementia care specialists, which places an increasing burden on primary care physicians (PCPs) to provide care for people living with dementia. Many PCPs feel underprepared and inadequately trained to handle dementia care responsibilities effectively. This report includes recommendations for maximizing quality care in the face of the shortage of specialists and training challenges in primary care.

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“…As we used only cross-sectional data, future research should add a longitudinal perspective; i.e. to analyze changes in clinical outcomes within different dyad subgroups [ 10 ]. This would be important to take into account the progressive quality of care processes [ 48 ].…”

Section: Discussionmentioning

confidence: 99%

Sociodemographic aspects and health care-related outcomes: a latent class analysis of informal dementia care dyads

Wiegelmann

Wolf‐Ostermann

Brannath

et al. 2021

BMC Health Serv Res

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Background Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes. Methods We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements. Results Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p < 0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as “adult child parent relationship & younger informal caregiver”, “adult child parent relationship & middle aged informal caregiver”, “non family relationship & younger informal caregiver”, “couple & male informal caregiver of older age”, “couple & female informal caregiver of older age”, “couple & younger informal caregiver”. The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes. Conclusion Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.

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Reconsidering frameworks of Alzheimer's dementia when assessing psychosocial outcomes

Cited by 55 publications

References 73 publications

2021 Alzheimer's disease facts and figures

2021 Alzheimer's disease facts and figures

2020 Alzheimer's disease facts and figures

Sociodemographic aspects and health care-related outcomes: a latent class analysis of informal dementia care dyads

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