"Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.

BACKGROUND AND OBJECTIVES: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting. RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically. RESULTS: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes. DISCUSSION AND IMPLICATIONS: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.

The Role of Digital Technologies in Facilitating Psychosocial Resilience to Sudden Social Isolation Among Older Adults: Lessons Learned from the COVID-19 Pandemic.

This study investigated how older adults adopted new technologies in response to sudden social isolation caused by the COVID-19 pandemic and how this adoption was related to their long-term psychosocial well-being. The study involved a 6-month longitudinal survey of 151 older adults and two phone-based focus groups, which informed a semi-structured interview guide and purposive sampling of diverse community-dwelling older adults. We then conducted twenty qualitative interviews and thematic analysis and mapped themes to 6-month quantitative trajectories of psychosocial health. Three themes emerged: first, most participants adopted multiple technologies to maintain social connection and psychosocial well-being. Second, participants felt left behind by certain technologies due to complicated systems or ageist societal norms. Third, pandemic-related community resources promoted technology independence among isolated older adults and those wanting to avoid "burdening" family. Results challenge ageist stereotypes and provide a framework for encouraging access and comfort with multiple technologies to adapt to sudden health crises or disruptive events.

Persistent loneliness due to COVID-19 over 18 months of the pandemic: A prospective cohort study.

BACKGROUND: Loneliness was common early in the COVID-19 pandemic due to physical distancing measures, but little is known about how loneliness persisted into later stages of the pandemic. We therefore examined longitudinal trajectories of loneliness over 18 months of the pandemic and subgroups at risk for persistent loneliness. METHODS: We used data from the COVID-19 & Chronic Conditions study collected between March 27, 2020 to December 10, 2021, including 641 predominantly older adults with ≥1 chronic condition who completed six interviews at approximately 3 month intervals. Participants reported loneliness (defined as some, most, or all of the time) during the past week due to COVID-19. We used trajectory mixture models to identify clusters of individuals following similar trajectories of loneliness, then determined subgroups likely to be classified in different loneliness trajectories using multivariable regression models adjusted for sociodemographic and clinical covariates. RESULTS: Participants were on average 63 years old, 61% female, 30% Black, 20% Latinx, and 29% were living below the poverty level. There was an overall reduction in loneliness over time (March to April/2020: 51% to September to December/2021: 31%, p = 0.01). Four distinct trajectory groups emerged: (1) "Persistent Loneliness" (n = 101, 16%); (2) "Adapted" (n = 141, 22%), individuals who were initially lonely, with feelings of loneliness decreasing over time; (3) "Occasional loneliness" (n = 189, 29%); and (4) "Never lonely" (n = 211, 33%). Subgroups at highest risk of the "Persistently Lonely" trajectory included those identifying as Latinx (aOR 2.5, 95% CI: 1.2, 5.2), or living in poverty (aOR 2.5; 95% CI: 1.4, 4.6). CONCLUSIONS: Although loneliness declined for a majority of older adults during the pandemic in our sample, persistent loneliness attributed to the COVID-19 pandemic was common (1 in 6 adults), particularly among individuals identifying as Hispanic/Latinx or living in poverty. Interventions addressing loneliness can ease pandemic-related suffering, and may mitigate long-term mental and physical health consequences.

Impact of the COVID-19 Pandemic on Loneliness and Social Isolation: A Multi-Country Study.

The COVID-19 global pandemic and subsequent public health social measures have challenged our social and economic life, with increasing concerns around potentially rising levels of social isolation and loneliness. This paper is based on cross-sectional online survey data (available in 10 languages, from 2 June to 16 November 2020) with 20,398 respondents from 101 different countries. It aims to help increase our understanding of the global risk factors that are associated with social isolation and loneliness, irrespective of culture or country, to support evidence-based policy, services and public health interventions. We found the prevalence of severe loneliness was 21% during COVID-19 with 6% retrospectively reporting severe loneliness prior to the pandemic. A fifth were defined as isolated based on their usual connections, with 13% reporting a substantial increase in isolation during COVID-19. Personal finances and mental health were overarching and consistently cross-cutting predictors of loneliness and social isolation, both before and during the pandemic. With the likelihood of future waves of COVID-19 and related restrictions, it must be a public health priority to address the root causes of loneliness and social isolation and, in particular, address the needs of specific groups such as carers or those living alone.

The epidemiology of social isolation and loneliness among older adults during the last years of life.

BACKGROUND: Social isolation and loneliness are critical to the health of older adults, but they have not been well-described at the end of life. OBJECTIVES: To determine the prevalence and correlates of social isolation and loneliness among older adults in the last years of life. DESIGN: Nationally representative, cross-sectional survey. SETTING: Health and Retirement Study, 2006-2016 data. PARTICIPANTS: Adults age > 50 interviewed once in the last 4 years of life (n = 3613). MEASUREMENTS: We defined social isolation using a 15-item scale measuring household contacts, social network interaction, and community engagement, and frequent loneliness using the 3-item UCLA Loneliness Scale. We used multivariable logistic regression to determine their adjusted prevalence by time prior-to-death and by subgroups of interest. RESULTS: Approximately 19% experienced social isolation, 18% loneliness, and 5% both in the last 4 years of life (correlation = 0.11). The adjusted prevalence of social isolation was higher for individuals nearer to death (4 years: 18% vs 0-3 months: 27%, p = 0.05) and there was no significant change in loneliness (4 years: 19% vs 0-3 months: 23%, p = 0.13). Risk factors for both isolation and loneliness included (p < 0.01): low net-worth (Isolation: 34% vs 14%; Loneliness: 29% vs 13%), hearing impairment (Isolation: 26% vs 20%; Loneliness: 26% vs 17%), and difficulty preparing meals (Isolation: 27% vs 19%; Loneliness: 29% vs 15%). Factors associated with loneliness, but not social isolation, included being female, pain, incontinence, and cognitive impairment. CONCLUSIONS: Social isolation and loneliness are common at the end of life, affecting 1 in 4 older adults, but few experience both. Rates were higher for older adults who were poor and experienced functional or sensory impairments. Results can inform clinical efforts to identify and address end-of-life psychosocial suffering and health policies which prioritize social needs at the end of life.

Social Isolation and Loneliness Among San Francisco Bay Area Older Adults During the COVID-19 Shelter-in-Place Orders.

BACKGROUND/OBJECTIVES: Physical distancing during the COVID-19 pandemic may have unintended, detrimental effects on social isolation and loneliness among older adults. Our objectives were to investigate (1) experiences of social isolation and loneliness during shelter-in-place orders, and (2) unmet health needs related to changes in social interactions. DESIGN: Mixed-methods longitudinal phone-based survey administered every 2 weeks. SETTING: Two community sites and an academic geriatrics outpatient clinical practice. PARTICIPANTS: A total of 151 community-dwelling older adults. MEASUREMENTS: We measured social isolation using a six-item modified Duke Social Support Index, social interaction subscale, that included assessments of video-based and Internet-based socializing. Measures of loneliness included self-reported worsened loneliness due to the COVID-19 pandemic and loneliness severity based on the three-item University of California, Los Angeles (UCLA) Loneliness Scale. Participants were invited to share open-ended comments about their social experiences. RESULTS: Participants were on average aged 75 years (standard deviation = 10), 50% had hearing or vision impairment, 64% lived alone, and 26% had difficulty bathing. Participants reported social isolation in 40% of interviews, 76% reported minimal video-based socializing, and 42% minimal Internet-based socializing. Socially isolated participants reported difficulty finding help with functional needs including bathing (20% vs 55%; P = .04). More than half (54%) of the participants reported worsened loneliness due to COVID-19 that was associated with worsened depression (62% vs 9%; P < .001) and anxiety (57% vs 9%; P < .001). Rates of loneliness improved on average by time since shelter-in-place orders (4-6 weeks: 46% vs 13-15 weeks: 27%; P = .009), however, loneliness persisted or worsened for a subgroup of participants. Open-ended responses revealed challenges faced by the subgroup experiencing persistent loneliness including poor emotional coping and discomfort with new technologies. CONCLUSION: Many older adults are adjusting to COVID-19 restrictions since the start of shelter-in-place orders. Additional steps are critically needed to address the psychological suffering and unmet medical needs of those with persistent loneliness or barriers to technology-based social interaction.

Attitudes of Homebound Older Adults and Their Caregivers Toward Research and Participation as Research Advisors.

BACKGROUND AND OBJECTIVES: Homebound older adults and their caregivers have not historically been engaged as advisors in patient-centered outcomes research. This study aimed to understand the attitudes of homebound older adults and their caregivers toward research and participation as research advisors. RESEARCH DESIGN AND METHODS: Descriptive thematic analysis of semistructured interviews conducted with 30 homebound older adults and caregivers recruited from home-based medical care practices. Interview questions addressed opinions on research and preferences for engaging as research advisors. RESULTS: Of 30 participants, 22 were female, 17 were people of color, and 11 had Medicaid. Two themes emerged related to perceptions of research overall: (a) utility of research and (b) relevance of research. Overall, participants reported positive attitudes toward research and felt that research could affect people like them. Three themes emerged related to participating as research advisors: (a) motivators, (b) barriers, and (c) preferences. Participants were open to engaging in a variety of activities as research advisors. Most participants were motivated by helping others. Common barriers included time constraints and caregiving responsibilities, and physical barriers for homebound individuals. Participants also reported fears such as lacking the skills or expertise to contribute as advisors. Many were willing to participate if these barriers were accommodated and shared their communication preferences. DISCUSSION AND IMPLICATIONS: Diverse homebound older adults and caregivers are willing to be engaged as research advisors and provided information to inform future engagement strategies. Findings can inform efforts to meet new age-inclusive requirements of the National Institutes of Health.

Loneliness in older persons: a predictor of functional decline and death.

BACKGROUND: Loneliness is a common source of distress, suffering, and impaired quality of life in older persons. We examined the relationship between loneliness, functional decline, and death in adults older than 60 years in the United States. METHODS: This is a longitudinal cohort study of 1604 participants in the psychosocial module of the Health and Retirement Study, a nationally representative study of older persons. Baseline assessment was in 2002 and follow-up assessments occurred every 2 years until 2008. Subjects were asked if they (1) feel left out, (2) feel isolated, or (3) lack companionship. Subjects were categorized as not lonely if they responded hardly ever to all 3 questions and lonely if they responded some of the time or often to any of the 3 questions. The primary outcomes were time to death over 6 years and functional decline over 6 years on the following 4 measures: difficulty on an increased number of activities of daily living (ADL), difficulty in an increased number of upper extremity tasks, decline in mobility, or increased difficulty in stair climbing. Multivariate analyses adjusted for demographic variables, socioeconomic status, living situation, depression, and various medical conditions. RESULTS: The mean age of subjects was 71 years. Fifty-nine percent were women; 81% were white, 11%, black, and 6%, Hispanic; and 18% lived alone. Among the elderly participants, 43% reported feeling lonely. Loneliness was associated with all outcome measures. Lonely subjects were more likely to experience decline in ADL (24.8% vs 12.5%; adjusted risk ratio [RR], 1.59; 95% CI, 1.23-2.07); develop difficulties with upper extremity tasks (41.5% vs 28.3%; adjusted RR, 1.28; 95% CI, 1.08-1.52); experience decline in mobility (38.1% vs 29.4%; adjusted RR, 1.18; 95% CI, 0.99-1.41); or experience difficulty in climbing (40.8% vs 27.9%; adjusted RR, 1.31; 95% CI, 1.10-1.57). Loneliness was associated with an increased risk of death (22.8% vs 14.2%; adjusted HR, 1.45; 95% CI, 1.11-1.88). CONCLUSION: Among participants who were older than 60 years, loneliness was a predictor of functional decline and death.