Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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5 The Role of the Community
5 The Role of the Community
Pages 137-170
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From page 137... ...
(See Chapters 1 and 2 for discussion of how interacting experiences and factors influence cognitive health throughout life.) Community context also affects the way people interpret the meaning of the experience of having dementia or living with someone with the disease, the expectations they have of social interactions, and the availability of resources.
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From page 138... ...
It also reviews what is known about opportunities at the community level to ameliorate the challenges for individuals, families, and caregivers. The chapter closes with directions for research to improve understanding of the effects of community characteristics on residents' cognitive health and on the experiences of those who develop dementia and their caregivers.
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From page 139... ...
Rural residents with dementia also lack access to health care, a lack which can render them unhealthy and more impaired at an earlier stage of dementia. Like many rural American hospitals in 2021, the hospital in my father's county is bankrupt and expected to close.
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Internet commu nication has become essential for countering social isolation, disadvantaging the two-thirds of rural Americans over 65 who have no home broadband, most of whom have never used the Internet.a My father has no computer or smartphone, but even if he had these tools and learned to use them, he lives in a rural com munications desert lacking cellphone tower coverage and fiber-optic cable for broadband. Internet access is difficult not only for rural persons with dementia but also for rural carers.
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From page 141... ...
. Other research has linked factors that have been associated with dementia risk, such as educational attainment; adult stress; cardiovascular health; and exposure to air pollution; and community characteristics including poverty, crime rate, social cohesion, rurality, and quality of transportation networks (Leventhal and Brooks-Gunn, 2000; Hill et al., 2005; Lawrence et al., 2017; Nieuwenhuijsen, 2018)
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From page 142... ...
For example, family support has been strongly associated with self-rated mental health, but the relationship among neighborhood social cohesion and resources, language, and other sociodemographic factors and cognitive health merits further study (National Latino and Asian American Study;1 Mulvaney-Day et al., 2007)
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From page 143... ...
The presence of outdoor particulate air pollutants is associated with higher levels of cognitive impairment in cross-sectional studies and with faster rates of cognitive decline in longitudinal studies. Some recent evidence also documents that community stressors may heighten the negative consequences of particulate air pollutants for dementia risk (Ailshire et al., 2017; Ailshire and Clarke, 2015; Ailshire and Crimmins, 2014; Cacciottolo et al., 2017; Clifford et al., 2016; Power et al., 2016)
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From page 144... ...
Chapter 2 reviews the large body of evidence of connections between educational attainment and cognitive health, and it has long been understood that significant disparities in educational attainment are linked to social and economic disadvantage (see, e.g., Duncan and Murnane, 2011; Gamoran, 2001; Garcia et al., 2018)
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From page 145... ...
, and disparities in cognitive health across population groups. The resources a community affords and the stressors it imposes likely influence not only people's health before they experience cognitive decline but also the experiences they and their caregivers have after diagnosis.
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From page 146... ...
. Figure 5-1 illustrates the connections between the community context and the cognitive health and quality of life of people living with dementia, but it is also important to understand that these connections potentially vary in important ways across different types of communities defined by race and ethnicity, socioeconomic status, and rural or urban character.
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From page 147... ...
. Social isolation may also influence the well-being of individuals living with dementia and their caregivers (Latham and Clarke, 2016)
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For example, a resource that provides stimulating activities and social interaction may support the maintenance of cognitive reserve that slows cognitive decline and reduces the risk of dementia or helps mitigate the effects of neurotoxicity on disease progression among persons with dementia. As discussed above, researchers have established individual-level associations between social engagement, social isolation, and loneliness and dementia outcomes (e.g., Liang et al., 2020; Penninkilampi et al., 2018;
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From page 149... ...
The study is attending to the temporal and spatial scales at which contextual data are available while also developing a new data infrastructure to examine ways in which communities influence the dementia experience. Other work has suggested the potential benefits of neighborhood access to green space as well, including association with physical activity and opportunities for social contact, that have been identified as protective of cognitive health (James et al., 2015)
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. In rural areas, for example, access to resources and care may require traveling long distances and time off from work for individuals living with dementia and their caregivers.
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From page 151... ...
For instance, among many Indigenous peoples of America, cultural and traditional teachings and practices passed on by elders can build resilience for communities, and social engagement with family and community has been associated with reduced risk of cognitive decline, as noted above (Alzheimer's Association and Centers for Disease Control and Prevention, 2019)
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From page 152... ...
Such arrangements include naturally occurring retirement community supportive service programs (NORC programs) , village and green house models, and dementia friendly communities (Greenfield et al., 2012; Graham et al., 2017; Lin, 2017)
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From page 153... ...
One key attribute of such a community is a robust formal network of agencies that provide both medical and social services, such as visiting nurse associations, home care companies, elderly housing, meal distribution programs, and day care and senior centers. Such a community also typically has a network of volunteer groups advocating for the elderly with government authorities.
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. The remainder live in residential care settings, such as assisted living (6%)
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While there is some research on these and similar efforts, more systematic evaluation of their functioning and impacts, their implementation challenges, and obstacles to their availability in low-income communities is needed. Dementia Friendly Communities Many governmental and advocacy groups are developing initiatives that fall under the umbrella of "dementia friendly communities." Such communities foster understanding of people living with dementia and focus on the assets they bring to the community and ways of engaging them and their caregivers in decisions about care and other issues (Alzheimer's Association, 2016; see also Alzheimer's Association, n.d.)
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From page 156... ...
are collaborating on a number of initiatives related to dementia friendly communities, many of which are developed by advocates in collaboration with local government. Typical of such interventions is the Dementia Friends program, which has included more than 15 million participants spread across nearly a fifth of all nations.
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From page 157... ...
Research is needed to better understand the essential characteristics of effective dementia friendly communities and their possible effects on such outcomes as quality of life, caregiver stress, and disease progression, as well as possible problems, such as cost and inequitable access. It will also be important to document the interorganizational and social infrastructure and community leadership required to implement the dementia friendly community approach successfully in diverse communities.
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More research is needed to examine how this model can be transferred to more diverse communities and how effective it is for individuals with advancing dementia. RESEARCH DIRECTIONS There is strong evidence that community factors shape the exposures and behaviors that influence dementia risk and the availability of resources for people living with dementia.
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From page 159... ...
3. Analysis of the community characteristics needed to foster demen tia friendly environments, including assessment of alternative community models that foster dementia friendly environments in communities that have different constellations of resources and serve diverse populations.
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160 REDUCING THE IMPACT OF DEMENTIA IN AMERICA TABLE 5-1 Detailed Research Needs 1: Community • How race and ethnicity, gender, socioeconomic status, Characteristics That urban/rural residence, structural racism, and segregated Affect Dementia Risk neighborhoods may influence the development and trajectory of dementia throughout the life span • The impact of exposure to neighborhood-level social and environmental stressors on the health and quality of life of individuals living with dementia • Evidence-based evaluations of structural interventions and policies designed to improve care and quality of life for people with dementia and caregivers, that is, interventions focused not on changing the behaviors of individuals but on the structures that shape behavioral change. 2: Opportunities and • Development of systematic means of assessing local needs and Resources challenges and identifying gaps that are not well addressed by existing services and supports • Development of a community needs assessment to identify the effects of resources available in the community, such as religious institutions, adult day centers, or residential care facilities, on addressing the needs of individuals living with dementia and their caregivers • Identification of policies that can coordinate federal and state funding efforts to develop effective community supports • Identification of strategies for mobilizing community health and social welfare networks to address dementia disparities for traditionally underserved groups • Development of refined evaluation methods and indicators of effectiveness for interventions aimed at improving accessibility, availability, acceptability, affordability, adequacy, and awareness of services • Interventions to reduce exposure to such community stressors as environmental pollution, crime, and neighborhood disorder • Development/refinement of means of monitoring the accessibility and quality of services and supports for accountability purposes • Identification of models and infrastructures for testing hypotheses about the relationships among interconnected community organizations addressing the needs of individuals living with dementia and their caregivers 3: Characteristics of • Identification of community and cultural values that affect Dementia Friendly how individuals perceive dementia and of best practices Communities among cultural groups for providing educational materials about dementia and community-based dementia care services • Analysis of emerging data to understand community agencies and analyze utilization of services on the local and national levels, focusing in particular on disparities
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. Neighborhood social stressors, fine particulate matter air pollution, and cognitive function among older U.S.
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. Dementia friendly communities in England: A scoping study.
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, e109–e125. Dementia Friendly America.
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. Use it or lose it: Engaged lifestyle as a buffer of cognitive decline in aging?
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. "Dementia-friendly communities" and being dementia friendly in health care settings. Current Opinion in Psychiatry, 30(2)
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. Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project. Dementia (London, England)
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. Neighborhood context and cognitive decline in older Mexican Americans: Results from the Hispanic Established Populations for Epidemi ologic Studies of the Elderly. American Journal of Epidemiology, 169(9)
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. Impacts of Dementia Friendly Initiatives: Presenting a Global Evidence Base for Dementia Friendly Initiatives.
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THE ROLE OF THE COMMUNITY 169 Zahodne, L.B., Manly, J.J., Smith, J., Seeman, T., and Lachman, M.E.
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