Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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3 Improving Outcomes for Individuals Living with Dementia
3 Improving Outcomes for Individuals Living with Dementia
Pages 73-108
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From page 73... ...
The remaining sections review research in several areas relevant to those challenges: diagnosis of dementia, autonomy and protection from harm, and interventions to improve the experiences of people living 1 The panel's paper is available at https://www.nationalacademies.org/our-work/decadal survey-of-behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimersdisease-related-dementias. 2 https://www.nationalacademies.org/event/10-17-2019/meeting-2-decadal-survey-of behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-diseaserelated-dementias 73
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From page 74... ...
The panel also provided a thoughtful summation of the perspectives of a larger group of people living with dementia and family caregivers gathered through the call for commentaries (Huling Hummel et al., 2020)
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. Errors and delays in diagnosis carried significant risks, as comments from caregivers suggested: "…Dad was confined to a psychiatric ward for a week after frightening family members with a gun because of terrifying hallucinations … a neuropsychiatrist finally diagnosed Dad with Lewy body dementia." Delays in diagnosis also can have a significant economic impact, as one respondent noted: "It is important to receive a diagnosis as early as possible so you can leave work before you are fired due to performance issues that dementia inevitably causes.
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From page 76... ...
; poor coordination of care ("Her doctors don't communicate with each other and her dementia diagnosis is not flagged in her records. She has to ask her health care professionals to ‘slow down' when giving instructions or explaining things.")
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From page 77... ...
, reinforce the impression that lack of contact was especially hard on older people living away from family. Box 3-2 describes art programs available during the COVID-19 pandemic.
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Most types of dementia develop slowly, but different types present different symptoms, and symptoms vary even among individuals experiencing the same type of dementia. Doctors who see patients for limited appointment times in an examining room may not be certain how to interpret symptoms and their relationship to other medical issues the patient may have.
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From page 79... ...
. While it is valuable to have screening for cognitive decline, these tests vary in their ability to detect mild cognitive impair ment and dementia, and most are not sensitive to the earliest stages of cognitive decline.
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. Early-stage dementia is least likely to be diagnosed, and Hispanic and non-Hispanic Black people are less likely to receive a diagnosis of mild cognitive impairment than are non-Hispanic White people (NASEM, 2021)
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Today, dementia and its precursor, mild cognitive impairment, are diagnosed primarily based on clinical symptoms. Often, family members are the first to notice subtle early psychological and cognitive changes in their loved ones and bring them to a clinician's attention.
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As noted above, many people who demonstrate biomarker evidence of Alzheimer's pathology never go on to develop clinical symptoms. Would this group, with normal cognition but positive biomarkers, be considered to have Alzheimer's disease?
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Indeed, supporting individuals living with dementia while protecting their autonomy -- recognizing their values and right to make decisions 7 https://www.geron.org/images/gsa/Marketing/KAER/GSA_KAER-Toolkit_2020_Final.pdf
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Adulthood brings with it the right to make decisions in risky domains, including finance, sexuality and relationships, medical care, driving, gun access, and many others. The committee cannot cover every potentially risky domain in this report, but we review issues related to finance and sexuality for persons living with dementia in order to analyze the nature of the challenges, explore potential solutions, and generate areas for research.8 These two domains represent burdens that are both common and serious for people living with dementia and their family caregivers.
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. Financial capacity, defined as "the ability to independently manage one's financial affairs in a manner consistent with personal self-interest," can be one of the earliest deficits of cognitive function, even before a diagnosis of dementia (Widera et al., 2011)
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. There is no single, widely used tool for measuring financial capacity.
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The Consumer Financial Protection Bureau has developed educational materials for banking industry professionals, including tools for identifying unusual banking behavior, such as large money orders sent overseas (Consumer Financial Protection Bureau, 2016)
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In any case, as with other decisions, a diagnosis of dementia does not in itself prove that someone lacks the capacity to make choices about sexual relationships. It is also important to note that while most people with dementia live in the community, people with dementia represent more than half of the population of nursing homes.
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From page 89... ...
A next step along the spectrum would resemble the sort of inquiry a concerned friend would make of a person who does not have cognitive impairment but appears to be making an unwise choice. For persons with cognitive impairment associated with dementia, an assessment of their decisional capacity is warranted and is indeed a mark of excellence in nursing homes.
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From page 90... ...
The assessment resources available today are not standardized, can be difficult to obtain, and are often expensive and time-consuming. Additional research to develop tools for assessing and supporting decision-making capacity for people living with dementia, aimed at primary care providers, social workers, and others involved in providing care, could help address this gap.
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From page 91... ...
However, biological, sociodemographic, and clinical markers that predict disease progression and the rate of decline are lacking and are a topic for future research. TABLE 3-1 Progression of Dementia Symptoms Functional Status Cognitive Changes Behavioral Issues Complications Mild Cognitive Impairment (preclinical)
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From page 92... ...
Goals for the Care of Persons Living with Dementia Individuals at each stage of dementia have distinct needs, abilities to respond to interventions, and potential quality-of-life outcomes. For example, a positive outcome for people living with mild dementia might be that with added support, they can continue to work or volunteer for longer than would otherwise have been the case.
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Defining outcome measures is another important tool for assessing how well a health system is meeting the needs of persons living with dementia (Reuben and Jennings, 2019)
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. A recent National Academies' report on the challenges of caregiving has also identified a set of principles to guide care and support for people living with dementia (NASEM, 2021, p.
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. The authors report that while some interventions may have potential, "conclusions as to efficacy or effectiveness are challenging if not impossible due to how control groups are defined, incomplete reporting of protocols and key intervention characteristics, heterogeneous outcome measures, and lack of clarity related to effect sizes or … the clinical relevance of reported effects." The authors characterize the lack of conclusive evidence for nonpharmacologic interventions as "frustrating." Described below are some approaches that may hold promise for addressing key dementia symptoms: cognitive decline, functional decline, and behavioral and psychological symptoms.12 Addressing cognitive decline Approaches for addressing cognitive decline include forms of cognitive training, as well as exercise and other lifestyle 12 The committee relied on the commissioned paper by Gaugler and colleagues (2020)
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Cognitive rehabilitation is designed to enhance daily living using memory activities and memory-boosting approaches. It has shown limited benefit, particularly compared with other approaches designed to maintain or improve cognition for persons living with dementia.
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are in development or being tested. Addressing behavioral and psychological symptoms Behavioral and psychological symptoms can be very distressing for people living with dementia and their families, and often drive the decision to seek residential care (Gaugler et al., 2009)
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, as well as qualitative research on the impact on persons receiving a dementia diagnosis. We also reviewed research needs related to the support and dignity of people living with dementia.
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The priority areas for research in each of these domains are summarized in Conclusions 3-1 and 3-2; Tables 3-3 and 3-4, respectively, provide detailed directions for research in each area of these domains. CONCLUSION 3-1: Research in the following areas related to diag nosis and decision-making support has the potential to substantively improve the experience of individuals living with dementia by support ing their dignity and well-being: • Improved screening and diagnosis to identify persons living with dementia, including guidance for clinicians that also addresses issues related to disclosure.
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CONCLUSION 3-2: Research in the following areas has the potential to advance the development of interventions to support the well-being and quality of life of people living with dementia. • Development and validation of outcome measures that reflect the perspectives of people living with dementia, their family caregivers, and communities.
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From page 101... ...
Among the important areas for which we were unable to establish the basis for explicit conclusions within the time allotted for this study are the impact of implicit and explicit bias and stigma against people living with dementia and their family caregivers on their well-being; the needs of people living with dementia who do not have family caregivers; and the needs of specific subpopulations of people living with dementia, including LGBTQ, African American, Latinx, and America Indian/Alaska Native populations. We emphasize that we in no way wish to discourage research in these areas.
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and mini-ACE for the detection of dementia and mild cognitive impairment. Cochrane Database of Sys tematic Reviews, 12(12)
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. Computer-based cognitive interventions for people living with dementia: A systematic literature review and meta-analysis.
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From page 104... ...
. Positive effects of combined cognitive and physical exercise train ing on cognitive function in older adults with mild cognitive impairment or dementia: A meta-analysis.
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. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregiv ers: A Way Forward.
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. National Research Summit on Care, Services and Support for Persons Living with Dementia.
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From page 107... ...
Cochrane Database of Systematic Reviews, 2, CD005562. https://doi.org/10.1002/14651858.CD005562.pub2 Yen, H.Y., and Lin, L.J.
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