7

Research Implications of Community-Based Interventions and Policies

In the final session of the workshop, four speakers participated in a discussion of research that is needed to develop scalable interventions and new policies at the community level for aging in place with dementia, focused on the following questions: 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?

HOME- AND COMMUNITY-BASED PROGRAMS

Regina Shih (Professor of Epidemiology and Health Policy and Management, Emory University, and Adjunct Policy Researcher, RAND) introduced several challenges for aging in place with dementia, including inequality, housing affordability and availability, the global threat of climate change, and the role of technology. In the context of these challenges, she described three projects that are advancing aging-in-place opportunities for older adults and people with dementia and offered directions for future research.

Shih explained that the Centers for Medicare & Medicaid Services (CMS) has been rebalancing long-term care over the past few decades to decrease costs. For example, as an alternative to nursing home settings, home- and community-based services (HCBS) support aging in place through personal care, home health, care management, and more; this support is delivered in many venues, including people’s homes, senior centers, adult day care centers, and congregate meal sites. She stressed that improving the delivery of HCBS requires measures of equality, access, and cost, yet measuring HCBS is very difficult because many services, providers, and settings of care are involved. Furthermore, gaps persist in access to and tracking of HCBS utilization for people with dementia.

To address these gaps, Shih noted that the National Institute on Aging (NIA) funded the Community Care Network for Dementia (CaN-D),¹ an initiative that fosters knowledge sharing to advance innovative dementia HCBS research; generates data tools on dementia HCBS measures; expands and diversifies the group of dementia HCBS researchers; facilitates translation of research into policy; and develops network infrastructure, products, and mentorship activities through a diversity, equity, and inclusion lens. This network is led by Emory University, RAND, the University of Michigan, and the New York Academy of Medicine. Encouraging workshop participants to join CaN-D, she noted that the network currently has 250 members, including dementia and HCBS advocates, providers, researchers, federal and state agency representatives, and philanthropic organizations.

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¹ https://sph.emory.edu/can-d

Shih provided an overview of another project, the Public Health Center of Excellence on Dementia Caregiving (PHCoE-DC).² This project recognizes that family caregivers are essential to supporting aging in place for their loved ones who have dementia. She stressed that the better that public health professionals can prepare caregivers for their roles, the less likely the person with dementia is to be placed in a nursing home. The Building Our Largest Dementia Infrastructure for Alzheimer’s Act, passed in 2018, enables PHCoE-DC to support public health agencies in facilitating access to evidence-informed services, programs, and interventions to reduce stress and improve the health of people with dementia and their caregivers. It also provides a link to community-based healthy aging programs, caregiver education, home health care, home modification, adult day and respite care, and transportation services. She added that RAND will be assessing PHCoE-DC’s ability to ensure equitable access to information and resources for family caregivers from diverse communities through public health agencies.

The final project that Shih discussed was a study on climate preparedness with villages³ and other age-friendly communities (Shih et al., 2018). This study responds to the fact that climate-related events disproportionately affect older adults and people with dementia because they often live in vulnerable regions, have age-related comorbidities and body temperature regulation issues, and have difficulty with the stress of evacuation and displacement. She explained that (a) public health agencies focus on climate preparedness and disease prevention for the general population but do not typically target older adults, and (b) villages and (c) age-friendly communities focus on daily quality-of-life needs for aging in place but do not typically include preparedness planning. Therefore, this project, funded by the Centers for Disease Control and Prevention, better aligns the efforts among these three entities and tailors preparedness to older adults. Collaborators include RAND, the National Association of County and City Health Officials, the D.C. Department of Health, the Village to Village Network, and American Association of Retired Persons (AARP) Age-Friendly Communities. She indicated that AARP’s approach is top-down, with local and regional agencies facilitating independent living of older residents through eight livability domains. The villages support aging in place with a bottom-up approach, where neighborhood grassroots organizations (usually volunteers) help older adults live at home. The United States has approximately 300 villages, for which the membership fee provides such benefits as educational seminars, services for transportation and home repairs, and social events.

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² https://bolddementiacaregiving.org

³ Typically determined by geographic areas, villages are membership organizations comprised of older adults living in their own homes that promote aging in place.

Shih remarked that the project on climate preparedness with villages and age-friendly communities resulted in the development of a toolkit (Acosta et al., 2018) on integrating activities across public health agencies, villages, and age-friendly communities. This toolkit describes aging-in-place programs as “trusted partners” for public health agencies to tailor climate preparedness activities to older adults; engages age-friendly communities and villages with a community-based participatory research approach in developing and implementing climate preparedness activities for older adults; leverages a strengths-based approach to build community resilience; and provides evaluation assistance to inform the business case for increased financial, staffing, and social support.

Reflecting on these three projects, Shih highlighted the challenges of real-world program implementation related to issues of inequality, housing, and climate change. First, villages have persistent inequalities in terms of their reach and their ability to serve members with cognitive impairment. They have been criticized for being comprised predominantly of affluent, White, older adults. Although efforts are made to reach out to people who have low-incomes as well as minorities, she said that many are not interested in a subsidized membership to such a community. Thus, villages need both assistance to reach diverse communities and to be organically grown by local communities. Faith-based and other cultural communities are joining the village movement in an effort to reach diverse adults and create new villages. With an increased number of members experiencing mild cognitive impairment, villages could better support their members with information about early detection, dementia care planning, and increased interaction with medical providers, while respecting their independence.

Second, Shih pointed out that HCBS uptake requires stable and affordable housing. Aging-in-place efforts could be conduits for raising awareness about services and eligibility for Medicaid HCBS. Because gentrification and displacement pressures may accompany people’s long tenure in a neighborhood, research is under way to determine the effectiveness of intergenerational housing models and to better align housing subsidy programs with other social benefit programs, such as Medicaid HCBS. She posited that villages could also be key partners in developing pathways to community living for older adults.

Third, Shih stressed that during disasters related to climate change, early planning for and communication about timely evacuation, safe return procedures, locations of medical special needs shelters, and considerations for sheltering in place are key for people with dementia and their caregivers. Expanded partnerships and alignment between the preparedness community and dementia-friendly communities are also critical for climate change–related disasters.

Shih noted that program sustainability and scalability are additional challenges in diverse community settings. For example, 40% of villages are entirely run by volunteers, and membership dues only cover approximately 50% of operating costs—a model that is not sustainable. Moving forward, other volunteer workforces could be integrated, and partnerships could be developed with other community-based organizations and academic medical centers to leverage lower-cost providers. Microgrants from local governments could also help sustain and expand villages, she noted. In terms of scalability, the village model has experienced success when local government and philanthropy—which have a clear interest in return on investment—are involved. However, because villages take an average of 2 years to set up (involving bylaws, insurance, volunteer recruitment, etc.), some are experimenting with a quicker hub and spoke model with one main office for several villages or regional outposts.

Finally, Shih discussed innovations in service delivery. Reflecting specifically on the role of technology, she noted that two-thirds of villages now use software to book and track services with a consistent taxonomy. With this taxonomy and better data, research opportunities abound. To improve climate preparedness among older people living with dementia, she encouraged agencies to integrate their data systems. Additional research on the usability and feasibility of assistive technology for people living at home with dementia would also be valuable. The use of assistive technology for home care workers is another important avenue of exploration. Shih described significant opportunities in equitable surveillance efforts, service delivery and quality, and aging-in-place outcomes for people with dementia. She underscored that true data equity means that comprehensive data are collected and shared on race, ethnicity, and language. “Equity weighting”⁴ for people with dementia is a key aspect of data equity. Dementia-specific training for aging in place programs is another critical innovation. As one example, she mentioned the AARP Dementia-Friendly America Tool, which provides online resources to create more inclusive and supportive communities for people living with dementia.

AN IMPLEMENTER’S PERSPECTIVE

Bruce Finke (Elder Health Consultant, Indian Health Service [IHS]) provided an overview of how people can use the research that is currently being conducted on services for people with dementia and frail elders and how that knowledge can inform future research design. He focused particularly on tribal communities. Finke described his work to address

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⁴ Shih defined “equity weighting” as a new way to assess health care quality by calibrating incentives to align with equity goals rather than simply closing a disparity on one dimension.

an unmet need related to palliative care services with Theresa Bowannie, director of the Zuni Home Health Care Agency (Finke et al., 2004). This tribal home health agency was certified in the state of New Mexico by CMS; however, CMS’s approach to hospice had several specific features that do not align with the culture of the tribal community and could not be achieved with limited staffing and resources. Therefore, Bowannie created a palliative care program in collaboration with the IHS hospital’s medical services and modeled after the Medicare hospice program. Personal care assistants were placed in homes to provide the right kind of support for tribal members in need of palliative care, and hospital resources and staff provided guidance. Although this palliative care program differed in several ways from the hospice program offered by Medicare, it still met many of Medicare’s outcomes and goals. Finke emphasized that this type of adapted implementation is often valuable in tribal communities.

Finke explained that existing interventions and models (e.g., the Medicare hospice program) have been tested in pragmatic and explanatory trials, and much data on effects and outcomes are available. Often, some information about process and context is available as well. He remarked that these resources are helpful in determining whether an intervention is meeting a need that also exists in a tribal community. Then, the next step is to take that model and adapt it for and implement it in the tribal community with some degree of fidelity. He shared a definition of “fidelity” from Ginsburg et al. (2021, p. 2): “The extent to which an intervention is implemented as intended, and it provides important information regarding why an intervention may or may not have achieved its intended outcome.” Implementers are faced with a question about whether they can be confident that the adapted intervention will be successful if certain changes are made. Thus, he underscored that before research begins, measures need to be identified that can be used to guide the implementation and the management of the intervention. He stressed that these measures should primarily be about achieving outcomes of interest.

Finke described intervention implementation challenges related to financial and human resource issues (e.g., availability of appropriate skill set and licensure) and other contextual issues (e.g., cultural, historical, organizational, political, population-based, geographic). For example, some of the comprehensive dementia care models are often designed for and better-suited toward those in urban areas than those in tribal communities. However, he said that the tribal communities take all of this information into account and apply it in a way to achieve the desired outcome.

Finke also pointed out that the workshop’s guiding questions could be answered in different ways in different tribal communities, which creates an additional challenge for implementing interventions. Thus, the more research that is done in partnership with tribal communities, the better the

data will be to drive implementation in those communities. Furthermore, he continued, because not all of the answers to these questions will come from research, another valuable knowledge-building approach is to consult with experts in tribal communities. He summarized that research in partnership with tribal and urban Indian communities generates new knowledge through implementation.

Finke urged implementers to understand complex or multifactorial interventions as individually validated, evidence-based practices. He described complex interventions as being comprised of building blocks that can be integrated one at a time, enabling incremental implementation with adaptation to the local tribal context. He stressed that thinking about implementation in pieces, rather than as a whole, is key from the start of the process of designing flexible interventions.

TRANSLATING SCIENCE TO PRACTICE

Erin Long (Team Lead for Alzheimer’s and dementia programs, Administration on Aging, Administration for Community Living [ACL], U.S. Department of Health and Human Services) explained that ACL prioritizes helping older people age in place through three key strategies: investing in core HCBS that help them stay at home, building partnerships that leverage additional public and private resources, and promoting innovations to ensure continued effective outcomes in the future. Since 2014, ACL has funded grants to organizations (e.g., health care systems, universities, hospice care providers, tribal entities) across 45 states. Many of these grants serve diverse populations, and many have a critical focus on people with dementia who live alone, those living with intellectual disabilities and dementia, and caregivers who need support to manage challenging behaviors of people with dementia.

Long stressed that ACL does not fund work in institutional settings; it focuses only on settings in the community that provide dementia-capable supports and services (e.g., training, education, interventions) that are responsive to the needs and wants of people living with dementia and their caregivers. These supports and services are culturally competent, evidence-based, meaningful to the people in the community, educational, and accessible. She underscored that accessibility relates to creating services that people both want to and can receive. This consideration is especially important when implementing technology services, for which many people need access to devices and networks. All of these goals are achieved through research, translation of evidence-based research, implementation, and sustainability. She mentioned that work on 20 evidence-based interventions has led to countless translations of interventions that have been implemented with fidelity and sustained in other communities.

Long offered her key recommendation for structuring effective research on aging in place with dementia: include home- and community-based and long-term support service providers and community-based organizations in the research design and in the research for the program instead of merely asking these community representatives to refer people to the program after it is fully developed. She stressed that providers and organizations know the people in their communities, what they will accept and what they are willing to receive, what can be implemented reasonably, and what it will take to sustain programming.

Long indicated that to best support community living for people with dementia and their caregivers, more research should focus on strengths-based, person-centered supports and service practices. Focusing on people’s strengths instead of deficits may result in resilience, which may give both those with dementia and their caregivers confidence and pride. She added that new, updated, validated evaluation tools that are strengths based are also needed. She advocated for research efforts that focus on people with dementia who live alone in a community, employee assistance programs that support family caregivers of people with dementia, the evaluation of the impact of dementia-friendly community work, and the availability and impact of respite days on both caregivers and people with dementia. Finally, Long suggested that any completed research package to support community-based implementation should include a cost analysis of expected financial and human investments, implementation tools and manuals for the interventionists and implementers, and simplified impact evaluation tools that can be used at the community level.

AN ASSET-BASED APPROACH TO COMMUNITY DEVELOPMENT

Gina Green-Harris (Director, regional Milwaukee office, Wisconsin Alzheimer’s Institute) explained that the regional Milwaukee office of the Wisconsin Alzheimer’s Institute has five integrated mission pillars: (1) community engagement, (2) community and professional education, (3) service, (4) advocacy, and (5) research. This vision empowers communities of color (primarily African American communities) by providing culturally specific health care services for their aging populations affected by dementia, Alzheimer’s disease, and other health challenges.

Green-Harris noted that when the organization began in 2008, its primary goal was to determine how to achieve early diagnosis of Alzheimer’s and dementia among African American people in the community, who are at higher risk for developing some form of dementia than White people. The organization initially leveraged a patient-centered memory clinic model from Sager et al. (2005), which looked at how physicians could diagnose

dementia and how practitioners could work with social workers to coordinate diagnostic testing and collect data. However, a gap existed in care management—that is, follow-up services and family support. In conversation with the people in the community, Green-Harris and her team learned that they did not understand what dementia was, how it manifested, how to live with it, or how to care for it. Therefore, work began to develop a care management program that integrated the components of research, caregiving, and medical care for African American communities.

Green-Harris described her team’s initial efforts to address disparities in Alzheimer’s disease in African American communities and in African American participation in research. They created an asset-based model (Green-Harris et al., 2019) inspired by an earlier asset-based community development outreach model (Kretzmann & McKnight, 1993), with the hope of developing more research opportunities and more sustainable programs for the community.

Green-Harris described the Wisconsin Alzheimer’s Institute’s use of this asset-based model to achieve its five integrated mission pillars. First, achieving community engagement begins with identifying the community and addressing its specific needs and wants, as well as creating a cooperative, integrated relationship with the community. Part of this step includes adopting nonacademic terminology already familiar to the community (e.g., “memory loss” versus “Alzheimer’s”). She asserted that recognizing the community as experts, investing in the community, and providing needed resources identified by the community are key to engaging and securing commitment from community members.

She emphasized the importance of “meeting people where they are” and fostering partnerships to deliver culturally appropriate education, training, and outreach programs to providers, those living with dementia, and family caregivers. These programs dispel myths and provide credible information to the community about dementia and other cognitive diseases; increase public awareness and understanding of health disparities and dementia to reduce the stigma, increase diagnoses, and improve access to good care; and increase education about the risk factors associated with Alzheimer’s disease to improve awareness of the association between chronic illnesses and dementia.

Second, Green-Harris noted that the organization supports community and professional education by offering health care professionals recommendations on best practices of how to provide culturally appropriate care to effectively address patient, family, and community needs. The organization also collaborates with community, faith-based, and grassroots organizations to deliver presentations on risks for Alzheimer’s disease and dementia; inform people about resources; and assist with navigation through available programs. In particular, the organization started hosting Breaking the

Silence events⁵ in 2014 with health care professionals to bring community members together, help them to become lay experts on Alzheimer’s disease and dementia, and give them tools to improve their care experiences and disease trajectories.

Third, Green-Harris highlighted that the organization is committed to improving service delivery (Dillworth-Anderson & Boswell, 2007; Hill et al., 2015). A staff person who is connected to a diagnostic memory clinic and works directly with providers conducts in-home memory assessments with families. This approach creates a strong rapport between the organization, the provider, and the patient, which increases medication adherence, attendance at medical appointments, and engagement. Green-Harris reiterated that all of these connections to service are provided and delivered in a culturally appropriate way. The organization’s signature program is the Amazing Grace Chorus, which offers people with dementia and their caregivers the opportunity to sing and to participate in a program with support services and respite days (Mittelman & Papayannopoulou, 2018). She indicated that this program has improved mood, increased the time loved ones can stay in the home with their caregivers, and increased engagement with service delivery models and providers.

Fourth, Green-Harris championed the organization’s efforts to strengthen advocacy. For example, a community advisory board provides a voice from the community, identifies and addresses barriers to research participation by underrepresented populations, supports the recruitment and retention of research participants, and serves as a conduit for supporting community-based participatory research. She mentioned that this model for participatory research has been replicated across Wisconsin in various sectors.

Finally, Green-Harris discussed the organization’s approach to research. It first spent 2 years in the community building rapport and establishing relationships to help understand how the community wanted to see the research conducted and how to advance research on dementia and health disparities by actively engaging underrepresented populations in cutting-edge scientific studies. The organization is part of the Wisconsin Registry for Alzheimer’s Prevention, including African Americans Fighting Alzheimer’s in Midlife. She underscored that the asset-based participatory research model has made it possible to increase participation in research among African Americans and people of other ethnicities from 2% to nearly 20%.

In closing, Green-Harris offered the following next steps for researchers and research funders: rethink funding mechanisms to be more inclusive of community-based models, improve evaluation tools, increase community stakeholder engagement from the start and consider community members

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⁵ https://wai.wisc.edu/breakthesilence

as teammates, use integrated research strategies that are developed with people living with dementia and their caretakers, rethink equity and inclusion, and rethink funding for intervention and prevention models for high-risk communities using an asset-based model instead of a deficit model.

DISCUSSION

Sharing questions from workshop participants, Sarah Szanton (Dean and Patricia M. Davidson Health Equity and Social Justice Endowed Professor, Johns Hopkins University; planning committee member), moderated a discussion among the session’s four speakers. She asked Shih to elaborate on the concept of equity weighting and how it has been used in applied research, especially for people with dementia. Shih explained that the application of equity weighting to health care quality is relatively new. She said that equity weighting creates a specific equity goal and allows for multiple identities to be included—for example, instead of having a general health care outcome, striving specifically to have double the positive outcomes for people who live in rural areas, people with a dementia diagnosis, and African Americans (Agniel et al., 2023).

Szanton then posed a question about strategies to address the effects of structural racism and discrimination across the life course. Finke replied that, where possible, services should be built into tribal programs so that they are more accessible. Shih highlighted NIA’s study on the historical effects of redlining on dementia risk and cognition (Pohl et al., 2021). She stressed that to deliver person-centered care (including trauma-informed care and culturally competent care), as well as to remove barriers, people’s experiences have to be at the forefront and it needs to be done equitably.

Szanton reflected on the value of strengths-based, person-centered models to provide services to both people living with dementia and their caregivers and suggested a shift in terminology from “caregiver burden” to “caregiver impact.” A workshop participant highlighted the need to dedicate more funding to strengths-based measurement tools.

Szanton commented that although nearly one-third of people with dementia live alone, this population tends to be ignored by research and is more difficult to access for services. Green-Harris raised several important questions related to this issue: Are these people living alone because they want to or because they are isolated? How can these people be provided with the right resources? She remarked that some communities leverage their mail carriers and garbage collectors to identify people who live alone and may benefit from supportive services. However, she continued, because people cannot be forced to receive supports that they aren’t ready to receive, one effective strategy is reaching people before cognitive impairment progresses to discuss what-if scenarios and make plans for supports.

Finke pointed out that ad hoc and informal supports may already be in place for people who are perceived to be “alone.” Therefore, he suggested adopting the perspective that a continuum of support is available for individuals, instead of distinguishing “alone” from “not alone” to determine needed supports. Shih reiterated that being socially isolated, having low social networks, and living alone are interrelated but different constructs. She added that delivering services to people’s homes helps to meet the needs of those without strong social networks.

Summarizing some of the overarching themes she observed from the workshop, Elena Fazio (Director of the Office of Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias Strategic Coordination, Division of Behavioral and Social Research, NIA) reinforced the need to construct research that focuses on assets and strengths, as well as positive steps forward in measurement and intervention development, while prioritizing the challenging experiences of those diagnosed with dementia or cognitive impairment and their care partners. She also highlighted the connection between social engagement and the potential to age in place and echoed the need to review policies, services, and organizations that support people with dementia. Furthermore, rethinking equity and inclusion is critical. She championed the notion of multilayered support for individuals, which adds complexity when posing research questions and measuring effectiveness.

As the workshop drew to a close, she mentioned an NIA funding opportunity to establish state-level dementia care research centers to understand what works at the state and substate levels in terms of dementia care, and she encouraged applications from academic–community partnerships.⁶

REFERENCES

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⁶ https://grants.nih.gov/grants/guide/rfa-files/RFA-AG-24-033.html

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