Challenging Questions about Epidemiology, Care, and Caregiving for People with Alzheimer's Disease and Related Dementias and Their Families Proceedings of a Workshop–in Brief (2020) / Chapter Skim
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Challenging Questions about Epidemiology, Care, and Caregiving for People with Alzheimer's Disease and Related Dementias and Their Families: Proceedings of a Workshop - in Brief
Challenging Questions about Epidemiology, Care, and Caregiving for People with Alzheimer's Disease and Related Dementias and Their Families: Proceedings of a Workshop - in Brief
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Gitlin noted that research on interventions supporting caregivers constitutes a huge body of literature; in her presentation, she outlined overarching key frameworks that are influencing the way the authors are framing the findings of that literature. She then touched on areas for further research, including new ways of thinking about how such interventions could be explored and how research might better include understudied populations.
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Different kinds of etiologies at different stages of the disease, physical health, and cognitive functioning of the person living with dementia can all affect how caregivers FIGURE 1 Direct and indirect pathways for nonpharmacological interventions supporting family caregivers and persons living with dementia. participate in these in- SOURCE: Laura Gitlin, adapted from Gitlin and Hodgson (2018)
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In particular, he highlighted the importance of reconsidering how interventions are evaluated so as to capture the lived experience of people with dementia and their family caregivers. DATA ON AD/ADRD PREVALENCE Julie Bynum, University of Michigan, presented about the status of her paper with coauthor Ken Langa, University of Michigan, on data sources for measuring population prevalence of AD/ADRD.
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Bynum described the variety of data sources available for population surveillance, including epidemiological data, which can be obtained through FIGURE 2 Future population prevalence: Which construct? clinically adjudicated diagnosis or Source: Presentation by Julie Bynum.
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Access to advanced care planning or palliative care -- including eliciting patient values and preferences, initiating and continuing discussions of care, evaluating health care decisions, identifying health care surrogates, completing and registering advanced health care directives, and financial planning -- are areas in need of improvement to effectively reach minority communities (Reuben et al., 2019)
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Lin noted that annual costs of care are more than three times as high for individuals living with AD/ADRD; those costs typically rise around the time that a person is first diagnosed. AD/ADRD can complicate the management of comorbidities that are highly prevalent in people living with dementia, which can also substantially increase health care costs (Alzheimer's Association, 2019)
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An individual could have cerebral vascular disease and not have a stroke, which is the equivalent of preclinical AD, where the pathology is present but symptoms are not. He also stated that diagnosing Lewy Body dementia and frontal temporal dementia are difficult to use in a population study because diagnoses of these diseases are targeted toward tertiary care clinicians who have to make a clinical diagnosis rather than researchers who need to implement the diagnoses in the field.
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Zissimopoulos reported that she and her team also use these data to measure how individuals use health care services and quantify how much informal and unpaid care they receive. They aggregate all these individual-level outcomes so they can also look at populations, health and spending outcomes, particularly health care costs and the value of unpaid caregivers for society.
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by discussing the importance of developing caregiver interventions that are comprehensive and intended to target and improve caregiver activities, particularly with respect to seeking support, and psychological activities that can then have a positive impact on caregiver outcomes and, indirectly, care recipient outcomes. She noted that a 2011 study found that the most commonly studied caregiver outcomes were burden and depression, and the most commonly studied care recipient outcomes were physical function and health care resource use (Van Houtven et al., 2011)
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The extensive information from NHATS on the physical and cognitive functioning of study participants is also sufficient to characterize care recipients. These data help define the care recipient populations and also define who caregivers are.
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, nearly 30 percent of care recipients reported two or more unmet needs, which indicates a link between care burden and quality of care provided. Beach concluded by noting that the current state of caregiving research is cross-sectional, and conducted with nonprobability clinic-based samples of caregivers with no care recipient; because of this, he recommends more longitudinal dyadic studies around mixed methods assessments of caregiver tasks and burdens.
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Chan School of Public Health; Maria Glymour, University of California, San Francisco; Roee Gutman, Association of American Universities; Mark Hayward, Population Research Center and Population Health Initiative at the University of Texas at Austin; Ruth Katz, LeadingAge; Spero M Manson, Centers for American Indian and Alaska Native Health in Colorado School of Public Health, University of Colorado, Denver; Terrie E
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