Care Arrangements of Older Adults: What They Prefer, What They Have, and Implications for Quality of Life

Judith D. Kasper, PhD; Jennifer L. Wolff, PhD; Maureen Skehan, MSPH

Disclosures

Gerontologist. 2019;59(5):845-855. 

In This Article

Abstract and Introduction

Abstract

Background and Objectives: Meeting individual preferences for long-term services and supports (LTSS) is a policy priority that has implications for quality of care. Evidence regarding preferences is sparse. In addition, little is known regarding whether preferences and care arrangements match for those receiving care, and implications for quality of life.

Research Design and Methods: A random sample (n = 1,783 in 2012) of National Health and Aging Trends Study participants were asked the best care option for someone 80+ who needs help with personal care and mobility. Analyses examine variations in care preferences, the relationship of preferences to care arrangements, and the association of matched preference and care arrangements to quality of life indicators.

Results: Care preferences vary by demographics. Equal proportions (3 in 10) of older adults chose assisted living or continuing care retirement communities (CCRC), care in own home with family help, and care in own home with paid help, as the best options. Persons in assisted living/CCRC settings were significantly more likely to choose this option as best. Only 1 in 3 older persons receiving care are in arrangements that match preferences. No association with quality of life indicators was found.

Discussion and Implications: Aging in place remains the care preference of a majority, but close to one-third chose assisted living/CCRC, suggesting preferences are evolving. Aligning care preferences and arrangements is a policy goal, but many do not achieve a match and there remain gaps in understanding trajectories in preferences and care arrangements and implications for quality of life.

Introduction

Varied options exist for long-term services and supports (LTSS) to meet the needs of older people who are no longer independent in mobility, basic self-care or performing routine household activities. Family caregiving remains the most commonly relied upon source of assistance (National Academies of Sciences, Engineering, and Medicine, 2016), but the last two decades have seen substantial changes in the availability and use of paid long-term care services. In the realm of institutional care, there has been a steady decline in the nursing home population (Alecxih, 2006; Weiner, 2013), and a growth in other care options, primarily home and community-based services and non-nursing home residential care such as assisted living and continuing care retirement communities (CCRC). The inter-relationships among these developments are not clear. Some data suggest use of nursing homes is still greater than for other long-term care service options (Harris-Kojetin, Sengupta, Park-Lee, & Valverde, 2013), while other studies find that the growth of assisted living is likely directly tied to declines in nursing home occupancy (Stevenson & Grabowski, 2010). Home and community-based services also have expanded, most notably for lower income persons through Medicaid Waiver programs (Watts & Musumeci, 2018) and policy initiatives, such as the on-going federal initiative (Money Follows the Person) designed to support state efforts to reduce reliance on institutional settings to provide LTSS (Mathematica Policy Research, Inc., 2018).

Individual preferences are often cited as a factor influencing the changing landscape of long-term care service options, including the growth of nursing home alternatives and increased emphasis on options that support aging in place (Harris-Kojetin et al., 2013; Stevenson & Grabowski, 2010). Concerns about the future availability of family caregivers for an aging population is driven in part by the awareness that "aging in place" is preferred by many older people. There also is evidence that expectations regarding LTSS may be changing; one state-specific study found middle-aged baby boomers when asked about places they might live in or move to as they grow older, while favoring aging in place also were more likely to consider both co-residence with a child and living in retirement communities or assisted living than their parents' generation (Robison, Shugrue, Fortinsky, & Gruman, 2014).

Kane and Kane (2001) argued that determining long-term care preferences of older adults is a necessary step in providing care that better reflects preferences, but characterized the research literature on preferences as "sparse and confusing." Lehnert, Heuchert, Hussain, and Konig (2018) in a recent review of research on long-term care preferences examined 59 studies and noted substantial methodological heterogeneity, but also concluded that a common key finding was that people prefer to age in place. Early studies of care preferences among older adults often contrasted community with nursing home care and typically documented a strong aversion to nursing home care. A survey of adults 60 or older published 30 years ago (McAuley & Blieszner, 1985) provided options for long-term care arrangements and asked for agreement or disagreement for each option "if you became sick or disabled for a long time" (p. 189). Help in the person's own home from a relative or paid caregiver had the highest levels of agreement (66% and 70%, respectively), less than one-third endorsed nursing home care. Similarly, a study of community-dwelling older adults in North Carolina published nearly 20 years ago (Keysor, Desai, & Mutran, 1999) found a greater preference for home care across multiple situations under different scenarios, with some variation by characteristics, such as marital status and severity of disability. A more recent study (Wolff, Kasper, & Shore, 2008), of older women with moderate to severe disability examined preferences for a broader range of care options (paid help at home, unpaid help at home, living with child, assisted living, nursing home) and also found help in one's home was preferred for help with activities of daily living (ADL) and instrumental activities of daily living (IADL) needs, although preferences fluctuated somewhat (e.g., between paid help and unpaid help at home) over a 1-year period for a substantial proportion of women.

Studies that focus on expectations of future use of long-term services among those under age 65 (Henning-Smith & Shippee, 2015) or among older persons who have no current care needs (Abrahamson, Hass, & Sands, 2017), find that in addition to underestimating future need for LTSS, individuals commonly expect family members to provide assistance if the need arises. While these studies focus on who is providing the care, rather than place, expectations that family members will be future caregivers is consistent with a preference to age in place. Henning-Smith and Shippee (2015) found 73% of persons 45– 64 expected a family member to provide care. Among older persons who later developed ADL care needs, Abrahamson and colleagues (2017) found adult children (for 48%) and spouses (for 35%) were most often named as likely caregivers.

Alternative arrangements for LTSS are important for their potential impact on quality of life. One influential conceptual framework for explaining well-being in the context of disability is that of person-environment fit. Originally conceptualized by Lawton (1982) and Kahana (1982) with a focus on persons in institutionalized environments, this perspective hypothesized that characteristics of the person, the environment, and the fit between these were important predictors of residential satisfaction. Kahana, Lovegreen, Kahana, and Kahana (2003) extended this perspective to persons in community settings, and pointed to congruence between personal preferences or needs and the environment as influencing environmental satisfaction and psychological well-being, and a lack of congruence as a source of stress that may lead to adverse health outcomes.

Despite prior studies, and the more recent policy focus on preferences of older adults and opportunities for choice in assessing quality in LTSS (NQF, 2015), little is known about how preferences for care arrangements vary among older people by characteristics and circumstances. Evidence also is lacking regarding the extent to which people achieve congruence between their preferences and actual care arrangements, or whether and how congruence affects quality of life indicators such as well-being. This study examines, using nationally representative data for persons 65 and older, variations in care preferences and the extent to which preferences are congruent with or match current or future care arrangements. We also examine the relationship of matches and nonmatches to several indicators of quality of life: subjective well-being, satisfaction with living arrangements, and participation restrictions. We hypothesize that preferences will be associated with care arrangements for those currently receiving care, and for those who receive care prospectively. We also hypothesize that persons whose care arrangements match their preferences are more likely to experience positive and less likely to experience negative outcomes than those whose arrangements and preferences are misaligned.

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