Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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1 Introduction
1 Introduction
Pages 13-38
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From page 13... ...
. Most forms of dementia develop gradually, and changes in an individual's functioning vary widely in pace and nature; moreover, each person living with dementia does so in a unique context.
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Alzheimer's disease and Alzheimer's-related dementias: This report ex amines issues related to Alzheimer's disease and related dementias -- progressive cognitive disorders of midlife and especially late life -- of which Alzheimer's is the most common. All are forms of dementia -- an acquired loss of cognitive function severe enough to interfere with independence, irrespective of cause -- although the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)
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caregivers." We acknowledge the value of alternative terms, but are guided by the fact that several large na tional organizations, including the Family Caregiver Alliance, the National Family Caregivers Association, and the Caregiver Action Network, use "caregiver" as part of their naming convention. We are also following the convention of much of the relevant research literature in using the term "family caregiver." Burden/impact/effect: Although the committee's charge refers to the "bur den of Alzheimer's and related diseases," we instead use such words as "impact" and effect." We wish both to avoid the implication that people living with dementia themselves pose a burden and to highlight possibilities for improving conditions and quality of life for all affected by the disease.
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of the U.S. Department of Health and Human Services requested that the National Academies of Sciences, Engineering, and Medicine conduct a consensus study to produce a decadal survey3 assessing the contributions of research in the social and behavioral sciences to mitigation of the negative impacts of Alzheimer's disease and related dementias and identifying a research agenda for the coming decade.
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To carry out this study, the National Academies convened the Committee on the Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias, whose members have expertise in sociology, epidemiology, biostatistics, public health, psychology, anthropology, geriatric medicine, psychiatry and neurology, bioethics, and public policy (see Appendix A for biosketches of the committee members)
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Geological Survey. More recently, the decadal method was applied for the first time to research in the social and behavioral sciences in a study of research to strengthen intelligence analysis and enhance national security, which includes a detailed discussion of the National Academies' decadal process (NASEM, 2019a; see also NASEM, 2015)
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Applying the Social and Behavioral Sciences to the Study of Dementia The committee looked across the landscape of the social and behavioral sciences for research that could help to ameliorate what we understand to be the "burden" of Alzheimer's disease and related dementias: their negative impacts on individuals, families, and communities, and the social and economic costs of ensuring that professional care and resources are available to people at all stages of disease. Researchers in social and behavioral fields are making a critical contribution to the overall landscape of dementia-related research by offering key pieces to the puzzle that biological and pharmaceutical research cannot provide.
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Important domains relevant to dementia risk and living with dementia include the study of disparities in access to medical care, the socioeconomic factors that affect cognitive health, psychological study of emotional responses to disease, policies governing health care reimbursement, and many others. Research in social and behavioral fields also is instrumental to such public health efforts as effectively disseminating information and education, supporting the adoption of innovations in care and treatment, identifying and monitoring trends, and suggesting policy remedies for disparities and health inequities.
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Social and behavioral research is vital precisely because this variation is not an accident. The experiences of individuals and families are affected by factors as personal as their own financial resources, physical and emotional health, and relationships, but also by broader systemic and societal factors, including the functioning of medical and long-term care systems, the role of policy and law, the allocation of public resources, and socioeconomic factors that shape health and health care in the United States.
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. Disparities in Rates of Dementia and in Care and Resources Emerging evidence indicates that dementia does not affect all population groups in the United States equally, for complex reasons addressed throughout this report.
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Estimates using other data also identify sharp disparities across racial/ ethnic groups. For example, a population study of the epidemiology of Alzheimer's disease indicated even starker differences, showing that both prevalence and incidence were approximately double for African American people in the study compared with those of European ancestry, although the authors note the challenges of arriving at precise estimates (Rajan et al., 2019)
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. In addition to the risk of serious illness and death, the virus posed challenges for persons living with dementia, regardless of whether they resided in care facilities, including social isolation and loss of access to vital resources, overcrowded and intergenerational households, shortages of care options, and risks to their care partners, to name but a few.
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COVID produced exceptional stress for family caregivers as well. Not being able to visit loved ones in nursing homes, especially as rates of disease and death rose across the country, was extraordinarily painful.
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While we recognized the critical importance of a sufficiently supplied and adequately prepared workforce in reducing the impact of dementia, we also appreciated the complexity of the issues involved. Valuable research directions would be based on understanding such issues as the nuances of workforce recruitment, training, and retention related to dementia care; broad societal factors that affect labor supply and demand; benefit structures; and immigration policies.
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We are indebted to the entire advisory panel for all of their contributions. The public call for commentaries yielded 17 written responses from persons living with dementia and caregivers, as well as three responses delivered orally.
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. Non Pharmacological Interventions for Persons Living with Alz heimer's Disease: Decadal Review and Recommendations; 7 https://www.nationalacademies.org/event/07-07-2020/meeting-3-decadal-survey-of behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-disease-relateddementias-and-workshop-3 8 https://www.nationalacademies.org/event/07-08-2020/meeting-3-decadal-survey-of behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-disease-relateddementias-and-workshop-4 9 https://www.nationalacademies.org/event/10-17-2019/meeting-2-decadal-survey-of behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-disease-relateddementias 10 https://www.nationalacademies.org/event/08-14-2019/workshop-on-adrd-experience and-caregiving-epidemiology-and-models-of-care 11All commissioned papers are available on the study website at https://www.national academies.org/event/10-17-2019/meeting-2-decadal-survey-of-behavioral-and-social-scienceresearch-on-alzheimers-disease-and-alzheimers-disease-related-dementias.
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Several other National Academies' committees have addressed related topics, and we relied on their conclusions where they were relevant; see Box 1-4. Guiding Themes Several themes from social and behavioral research shaped the committee's work and run through this report.
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• Leading Health Indicators 2030: Advancing Health, Equity, and Well Being (2020) • Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward (2021)
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. Hotspot States See More COVID Cases in Nursing Homes.
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. Racial and Ethnic Disparities in COVID-19 Cases and Deaths in Nursing Homes.
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Paper prepared for the Na tional Academies of Sciences, Engineering, and Medicine, Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias. https://www.nationalacademies.org/event/10-17-2019/meeting-2-decadal survey-of-behavioral-and-social-science-research-on-alzheimers-disease-and alzheimers-disease-related-dementias Glymour, M.M., and Manly, J.J.
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. Hospitals, nursing homes fail to separate COVID patients, putting others at risk.
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. A Decadal Survey of the Social and Behavioral Sciences: A Research Agenda for Advancing Intelligence Analysis.
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among Minority Ethnic Populations. Paper prepared for the National Acade mies of Sciences, Engineering, and Medicine, Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias.
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. Nursing homes might account for 40% of U.S.
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