Friendship and Loneliness Among People Living With Dementia: Toward Community and Shared Humanity

Abstract An increasing number of people living with dementia (PLWD) age in community. In North America, this number ranges from 61-81% of the total number of PLWD. As many as one in three PLWD do not live with a care partner. Since most PLWD do not drive, many may spend a significant proportion of time within half a mile of their homes. Yet, the neighbourhood may or may not provide “ways of being in the world that are more accepting and embracing of the kinds of disruptions that dementia can produce” (Hillman & Latimer, 2017). To support continued social participation, meaningful everyday networks are required. PLWD and care partners may identify more or less strongly with a community depending on their position in the network, its spaces, and activities. According to Nancy (1991), “community” has been conjured as an antidote to the loneliness of the human condition, which explains its allure. In response, Costello (2014) argued that “community” requires one to constantly try and “fall short” in caring for another’s changing experiences. The value of a community thus depends on the quality of its friendships – the ability of otherwise lonely individuals to empathize – which may be threatened by challenges to PLWD’s personhood. This symposium brings together expertise in community gerontology, philosophy, and neuropsychology to advance current conceptualizations of personhood in community amid cognitive decline. These will be discussed in relation to lived experiences, with the aim to inform future research and practice of dementia care and prevention in community.

activities) due to competing demands of work, parenting, and family caregiving responsibilities.When CGs experience participation restrictions, quality of care for care recipients (CR) decreases, yet CG burden and risk for poor health increases.The purpose of this study was to identify the factors contributing to decreased participation in midlife CGs.Participants were CGs aged 45-64 years (n = 677) from the National Study of Caregiving/National Health and Aging Trends Study.We used multivariate logistic regression to determine attributes of CGs, CRs, and the care situation that independently contribute to participation restrictions.We found that negative aspects of caregiving (OR = 1.51, 95% CI = 1.33, 1.71) and CR depression and anxiety (OR = 0.90, 95% CI = 0.83, 0.99) significantly predicted participation restrictions (p < 0.05).Positive aspects of care (OR = 0.87, 95% CI = 0.74, 1.01), frequency of helping with chores (OR = 1.30, 95% CI = 0.98, 1.70), frequency of providing personal care (OR = 1.24, 95% CI = 0.97, 1.59), and frequency of providing help getting around the home (OR = 1.30, 95% CI = 0.97, 1.75) showed trends for association with participation restrictions (p < 0.10).We identified factors that are related to participation restriction in midlife CGs.Some of these factors (e.g., positive and negative aspects of caregiving, frequency of assistance provided) are potentially modifiable intervention targets that could bolster participation in this at-risk group.An increasing number of people living with dementia (PLWD) age in community.In North America, this number ranges from 61-81% of the total number of PLWD.As many as one in three PLWD do not live with a care partner.Since most PLWD do not drive, many may spend a significant proportion of time within half a mile of their homes.Yet, the neighbourhood may or may not provide "ways of being in the world that are more accepting and embracing of the kinds of disruptions that dementia can produce" (Hillman & Latimer, 2017).To support continued social participation, meaningful everyday networks are required.PLWD and care partners may identify more or less strongly with a community depending on their position in the network, its spaces, and activities.According to Nancy (1991), "community" has been conjured as an antidote to the loneliness of the human condition, which explains its allure.In response, Costello (2014) argued that "community" requires one to constantly try and "fall short" in caring for another's changing experiences.The value of a community thus depends on the quality of its friendships -the ability of otherwise lonely individuals to empathize -which may be threatened by challenges to PLWD's personhood.This symposium brings together expertise in community gerontology, philosophy, and neuropsychology to advance current conceptualizations of personhood in community amid cognitive decline.These will be discussed in relation to lived experiences, with the aim to inform future research and practice of dementia care and prevention in community.

AT-HOMENESS: RETHINKING PERSONHOOD-IN-COMMUNITY THROUGH THE LENS OF SOCIAL IDENTITY
Graham Rowles, 1 Habib Chaudhury, 2 and Daniel R. Y. Gan, 2 , 1. University of Kentucky, Lexington, Kentucky, United States, 2. Simon Fraser University, Vancouver, British Columbia, Canada Since Chaudhury's seminal work (2008), spatial ethnographies of the everyday lives of people living with dementia(PLWD) have proliferated.From an experiential perspective, geographies of home (Blunt & Varley, 2004) and geographies of dementia may overlap significantly.We conducted a meta-ethnographic synthesis of n=28 articles to identify points of convergence and divergence in these literatures using comparative thematic analysis with NVivo 12. Whereas geographies of home highlight at-homeness (e.g., ontological safety and daily activities), geographies of dementia underscore communal and civic participation (e.g., social relationships).These themes converge around "social identity" which may be an important construct that helps PLWD feel at home.The quality of life of PLWD in the community may be influenced by prior (and present) experiences of at-homeness.These become more pertinent as older adults shelter in place.We discuss the implications of these findings in relation to relational models of personhood-in-community (Swinton, 2020) and community gerontology.

MUTUAL RECOGNITION: EMPATHY AS THE FOUNDATION OF COMMUNITY IN DEMENTIA Peter Costello, Providence College, Providence, Rhode Island, United States
This paper explores the challenges of developing a healthy, genuine community as some of its members experience cognitive decline or dementia.I draw upon philosophical discussions on community (Stein, 2000) and Husserlian empathy (1931;1939) to identify these challenges.First, community is organic; it relies on the differentiated roles of individual members to remain healthy.The ability to recognize the contribution of each member is essential for its health.Second, dyadic relationships may similarly be healthy or waning depending on the presence or absence of mutual empathy.Empathy is embodied.Persons living with dementia (PLWD) need to experience being recognized as persons, in person, in order for dyadic relationships and communities to thrive.As such, some communities may become unhealthy in the absence of mutual recognition.In these instances, careful interventions, e.g., through shared experiences and embedded memories, may be required to promote the well-being of the community and its members.

SHARED HUMANITY: ADVANCING THE PERSONHOOD OF PEOPLE LIVING WITH DEMENTIA Steven Sabat, Georgetown University, Georgetown University, District of Columbia, United States
During the past three decades, the idea of personhood, and the degree to which people living with dementia (PLWD) possess it and ought to be treated as such, has been discussed by a number of important scholars such as Tom Kitwood and John Swinton.Although both asserted that PLWD ought to be treated as persons, their notions of personhood appear to be quite different.Kitwood noted that personhood was a status "bestowed" on another individual, whereas Swinton asserted that personhood was endemic to human beings.Yet, these approaches are complementary.I show, using case studies, how supportive communities are required for PLWD to teach us about our humanity, so long as we remain "finely aware and richly responsible" (Nussbaum, 1990).Our humanity is shared, in the Zulu concept of "Ubuntu" (Tutu, 1981;1989), when each individual's humanity is ideally expressed in relationship with others.This has important implications for clinical practice.

FROM MARGIN TO CENTER: INTERSECTIONALITY AND THE POLITICS OF ENVIRONMENTAL GERONTOLOGY
Chair: Austin Oswald Co-Chair: Jarmin Yeh Discussant: Jarmin Yeh As the population becomes increasingly older and culturally diverse, so too does the need for critical scholarship that examines the complex lives of differently positioned older adults in relation to their social and physical ecologies.This innovative symposium reflects the importance of putting intersectional frameworks (Collins & Bilge, 2016) in conversation with environmental gerontology to critically examine structures of power in assessing who matters and who benefits from place-based initiatives that intend to support healthy aging (Phillipson, 2004).Perry et al.'s paper addresses the politics of responsibility, asking who is responsible for keeping older people safe in light of Covid-19 though a citywide senior housing coalition in Detroit.The second paper, authored by Johnson, speaks to the politics of access and structural inequalities that create disparities in end-of-life care for unhoused older adults.The third and fourth papers, by Stinchcombe and colleagues and Oswald, critically examine dominant paradigms of age-friendliness in Canada and the United States though a politics of representation that highlights who is (in)visible in these initiatives.The final paper by Reyes, on the civic participation of Latinx and African American older adults, illustrates how structural change cannot happen without engaging these populations in the political process.Together, these papers exemplify the politics of environmental gerontology and demonstrate that without acknowledgment of multi-layered identities and the structures contributing to their inequities, environmental gerontology is inadequate, as it may overlook important social and environmental factors that connect older people to the places where they live and die.

CRITICAL AGE-FRIENDLY RESEARCH AND REPRESENTATIONAL ETHICS Austin Oswald, CUNY Graduate Center, New York, New York, United States
As the efforts of the Global Age-friendly Cities and Communities movement mature and continue to grapple with society's shifting dynamics, blind spots and knowledge