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Introduction

BACKGROUND

Many older adults would prefer to remain in their homes and communities as they age, but they may not understand or anticipate what support they will need and what resources are available to do so. “Aging in place” refers to “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.”¹ To age in place, individuals—especially those living with dementia—may need to plan for a variety of supports related to accessibility, health care, transportation, and social interaction.

Although much research has been conducted on community-level factors related to the risk of dementia in general, less is known about the factors that affect the ability of older adults with dementia to age in place successfully. Additional research could lead to a better understanding of the data and resources needed to support innovative approaches for adaptive housing,² services, and supports so that people living with dementia can remain in their communities.

Addressing the needs of communities where aging individuals are experiencing chronic illness, disability, and dementia is a complex, multidisciplinary task that requires partnerships across government, social service, public safety, urban planning, public health, and health systems. Several

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¹ From the Centers for Disease Control and Prevention’s Healthy Community Design Initiative: https://www.cdc.gov/healthyplaces/terminology.htm

² For an overview on adaptive or accessible housing see Cho et al., 2016.

countries have official “dementia-friendly” nongovernmental organizations, but research is limited on the design and policy features that make a community dementia friendly in the United States, as well as how these communities function to affect the health, well-being, and quality of life for people living with dementia and their care partners.

To discuss these needs and develop effective strategies for the future, the Committee on Population and Board on Behavioral, Cognitive, and Sensory Sciences of the National Academies of Sciences, Engineering, and Medicine (National Academies) convened a virtual workshop on aging in place with dementia on September 13–15, 2023. Sponsored by the National Institute on Aging (NIA), this workshop highlighted the state of knowledge and identified research gaps to inform conceptual approaches to guide research on dementia-friendly communities³ in the U.S. context, building on existing approaches in the field. The workshop incorporated individual-level factors that enable aging in place, but it focused primarily on the structures in the community and neighborhood environments that influence the ability of residents with dementia to age in place: see Box 1-1 for the workshop’s Statement of Task. Appendix A is the workshop agenda.

OPENING REMARKS

Workshop planning committee chair Emily Agree (Research Professor and Associate Director, Hopkins Population Center, Johns Hopkins University) welcomed participants to the workshop and described the workshop objectives: To discuss approaches that could be used to guide research and identify community- and neighborhood-level factors that enable aging in place for people living with dementia in the United States; to develop an agenda and establish priorities for future research and data collection, as well as strengthen the evidence base for policymakers; and to contribute to the efforts of broader communities of stakeholders and practitioners. She expressed her hope that this workshop would expand on the work presented in Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences (National Academies of Sciences, Engineering, and Medicine, 2021).

Amy Kelley (NIA) noted that, as the workshop’s sponsoring agency, NIA is committed to advancing research that helps adults, especially those living with dementia, to lead the lives they want to lead as they age in the communities of their choosing—where they have families, friends, and connections. She described research on aging in place as an NIA multiyear effort involving a broad range of community members and other partners.

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³ This concept has multiple usages that often vary by location. See Lin (2017) for a description.

As this research effort continues, in part through this workshop, she underscored the importance of adopting a health equity lens. Many of her primary goals as NIA deputy director focus on improving health equity as well as better understanding and mitigating the lifelong health effects resulting from differences in social experiences and personal backgrounds. She emphasized that although aging in place may have significant social and emotional benefits for older adults, their care partners, and their communities, these benefits may be unequally distributed across communities and across the United States. Thus, she said, she championed the workshop planning committee’s endeavor to help better understand the current state of knowledge on aging in place and to identify promising research paths.

Elena Fazio (Director of the Office of Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias Strategic Coordination in the Division of Behavioral and Social Research [BSR] at NIA) elaborated on the workshop’s relevance to NIA’s strategic objectives. For example, in 2019, a review of BSR by its National Advisory Council on Aging recommended support for further research to improve care for people with dementia and their caregivers. Providing additional context for the workshop goals, she

explained that 10% of adults aged 65 and older may develop dementia, and 22%⁴ may have mild cognitive impairment (Manly et al., 2022). With the potential for so many people to be affected by dementia and related health challenges—many of whom wish to remain living in their own homes—creating a supportive plan to manage finances, make homes more accessible, meet health care needs, use transportation, and maintain social connections is critical to enable aging in place (see Crews et al., 2019; Liu et al., 2020; Szanton et al., 2011). She noted that NIA regularly receives inquiries about how older adults living with dementia can live healthy, safe, and supported lives with dignity in their own homes and/or communities.

In addition to these individual- and family-level considerations for people with dementia to age in place, Fazio mentioned challenges and opportunities at the community and state levels, such as the variation in services and supports needed; financial implications; the need for complex state- and community-level planning efforts; and recognizing diversity of experience, particularly that not everyone has equal access to supports. She reiterated that NIA is concerned about health equity and health care access. In addition, she said, to better inform future research efforts, NIA is interested in the perspectives of those who represent diverse racial, ethnic, and socioeconomic backgrounds and different geographic contexts as well as of those who live alone with dementia or mild cognitive impairment.

Fazio invited workshop speakers and participants to consider the following guiding questions to facilitate potential future research opportunities:

• How well do our models of the neighborhood and community factors that facilitate aging in place fit people living with dementia? What additional factors need to be taken into account? Are there unique challenges that differ from those of people with physical disabilities or chronic diseases? How do structural sources of disadvantage affect people living with dementia in these communities?
• What aspects of infrastructure affect the ability of people living with dementia to age in place? Can public spaces, transportation systems, and architecture be made more friendly for people living with dementia? Are there differences in urban and rural communities in the features that are most important to people living with dementia?
• To what extent should the goals of programs that support aging in place with dementia be targeted to keep people in their own homes versus in a community or social environment? Can aging in place for people living with dementia be evaluated in terms of improve

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⁴ This number may be underestimated due to a lack of diagnoses, as discussed in Mattke et al. (2023).

• ments in quality of life, deferring transitions to facility-based care, or other metrics?
• How can local health and social service systems be incorporated into community-level efforts to support people living with dementia, help them to stay in their own homes longer, and minimize adverse consequences? What is the role of physicians and other health care providers to improve quality of life and reduce hospitalization and institutionalization?
• How are people living with dementia vulnerable to risks of isolation? What individual- and community-level factors improve or worsen the consequences of isolation for people living with dementia? What interventions are available that might be useful to support those without family or friends?
• What research is needed to identify the challenges to implementation in real-world programs? Where is there room for innovations in delivery of services, organization of infrastructure, and supportive services? How can interventions be developed to be sustainable in diverse community settings?

ORGANIZATION OF THIS PROCEEDINGS

Chapter 2 offers commentary on existing frameworks for aging in place and how they could be adapted to incorporate people living with dementia. Chapter 3 describes how aspects of the built environment and community infrastructure affect that population. Chapter 4 considers strategies to measure and evaluate aging in place for people with dementia, and Chapter 5 focuses on the integration of social services and other supportive community resources. Chapter 6 explores issues of social isolation and engagement for that population. Finally, Chapter 7 highlights opportunities for future research to develop scalable interventions and new policies at the community level for people aging in place with dementia.

This proceedings has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. The workshop planning committee’s role was limited to organizing and convening the workshop: see Appendix B for biographical sketches of the workshop planning committee members and speakers. The views expressed in this proceedings are those of the individual workshop participants and do not necessarily represent the views of the participants as a whole, the planning committee, or the National Academies.

REFERENCES