The Natural History of Disability and Caregiving Before and After Long-Term Care Entry

Abstract

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown.

Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants.

Design, setting, and participants: A longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used.

Main outcomes and measures: Prevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline.

Results: At entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry.

Conclusions: This study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.

Figure 1.. Schematic Diagram of the Construction of the Analytic Cohort

This schematic diagram shows how we constructed our analytic cohort. Each row is an example of an NHATS participant included in this study; each circle represents an interview. In step 1, we identified new LTCF entrants who were living in the community (dark blue circle) and began living in an LTCF (orange circle) at some point in the NHATS. Participants indicated the month they moved (red line); this was used in step 2 to align all interviews, setting t = 0 as each participant’s LTCF move-in date. We thus created a common time scale for our analytic cohort to analyze outcomes relative to LTCF entry, with positive values of t representing time after entry, and negative values representing time before entry. Baseline characteristics were drawn from the round immediately before entry (open circle). We additionally included persons who died within their first year of entry (eg, participant D) because they still provided data about life before. AL indicates assisted living facility; IL, independent living facility; LTCF, long-term care facility; NH, nursing home; NHATS, National Health and Aging Trends Study.

Figure 2.. Prevalence of Severe Disability Among Nursing Home, Assisted Living, and Independent Living Entrants Before and After Long-Term Care Entry

Severe disability is defined as a lot of difficulty or assistance in 3 or more activities of daily living (ADLs; getting out of bed, getting around inside, bathing, dressing, toileting, and eating).

Figure 3.. Prevalence of Any Caregiver and Any Paid Caregiver Among Nursing Home, Assisted Living, and Independent Living Entrants Before and After Long-Term Care Entry

Staff employed by a residential facility are not counted in NHATS; thus caregivers after long-term care facility entry represents persons supplementing care provided by facility staff.

Figure 4.. Median Weekly Caregiving Hours of Nursing Home, Assisted Living, and Independent Living Entrants Before and After Long-Term Care Entry

Weekly caregiving hours are summed across all caregivers (paid and unpaid) who assist the participant with any of the following activities: eating, toileting, bathing, dressing, getting out of bed, getting around inside, getting around outside, transportation, doing laundry, getting groceries, preparing meals, banking, medications, making medical decisions, taking people to appointments. Hours supplied by staff at a residential facility are not included in the National Health and Aging Trends Study after long-term care facility entry hours thus reflect supplemental care provided after entry.