As the U.S. population ages, many older adults rely on family members for daily care, yet not all receive fully adequate care. Such gaps in care are especially pronounced among older adults living with dementia, who often require more intensive support. At the same time, family structures have become increasingly complex, with stepfamilies and diverse caregiving arrangements more common now than in previous generations. This paper explored how family structure influences whether care needs are met for older adults with and without dementia, using two sets of nationally representative data to better understand where gaps remain and which family ties matter most.
What were the researchers studying and why?
As the U.S. population ages, many older adults need help with daily activities such as bathing, dressing, and moving around. When these needs go unmet, older adults may experience negative outcomes, including loss of independence or poor health. The risk of inadequate care may be particularly high for older adults living with dementia, who often require extensive support. This study examined how increasingly complex family structures, including the presence of a spouse, children, stepchildren, or siblings, affects whether care needs are adequately met and how these patterns differ between older adults with and without dementia.
How did the researchers conduct the study?
The study used two nationally representative surveys: the 2015 National Health and Aging Trends Study (NHATS) and the 2017 Panel Study of Income Dynamics (PSID). Both surveys included adults aged 65 and older living in community settings with self-care or mobility limitations. These data were chosen by the researchers for complementary measures of aging, disability, economic status, health, and family-related topics. The final sample size for analysis included 3,401 adults with care needs: 2,851 from NHATS (1,888 without and 963 with dementia) and 551 from PSID (313 without and 238 with dementia).
Researchers used two measures from these datasets to determine levels of care. The first was unassisted difficulty—self- or proxy-reports of finding it difficult to complete an activity without help. The second was adverse outcomes—self or proxy-reports of not eating, staying in bed, or soiling clothing due to lack of help. Using these two types of measures, the researchers defined needs as met (neither unassisted difficulty nor adverse outcomes); self-met (unassisted difficulty but no adverse outcomes); under-met (adverse outcomes despite no reported unassisted difficulty); or unmet (both unassisted difficulty and adverse outcomes). The researchers also examined how family members (e.g., spouse/partner, children, stepchildren, siblings) influenced care needs and outcomes and whether these associations differed for those with dementia.
What did the study results show?
The study revealed important differences in how care needs are experienced by older adults with and without dementia. The study found that older adults with dementia were less likely to report unassisted difficulty (NHATS: 67.7% with dementia vs 85.2% without, p < .05; PSID: 69.8% with dementia vs 86.6% without, p < .051) but more likely to experience adverse outcomes than those without dementia in NHATS (43.2% with dementia vs 24.2% without; p < .05).
The study also found that older adults with dementia were less likely to report unassisted difficulties without adverse outcomes (self-met needs; 38.2% vs 64.4%, p < .001). They were more likely than those without dementia to have met, under-met, and unmet needs associated with self-care and mobility activities (18.6% vs 11.4%, 13.7% vs 3.4%, and 29.5% vs 20.8%, all p < .001).
Furthermore, the researchers found that having a spouse or partner was consistently protective, lowering the risk of unmet care needs (relative risk reduction [RRR] = 0.726; p < .05). By contrast, having stepchildren was linked to a greater risk of unmet needs (RRR = 1.610; p < .05). Surprisingly, having a larger number of family ties was associated with a risk of more adverse consequences (odds ratio = 1.039, p < .01), suggesting that bigger family networks do not necessarily guarantee adequate care.
What is the potential impact of these findings?
Understanding the associations among dementia, family structure, and care needs of older adults is a critical step toward developing informative research, promising interventions, and effective policies. This study also added important methodological perspective to studies of this kind by including two large, complementary datasets and considering specific sub-categories of care needs. Despite some limitations due to the different data collection methods used in NHATS and PSID, this study confirmed that spousal support contributes greatly to meeting the care needs of those with dementia and suggested a need for further investigations of families with stepchildren. Potential interventions should focus on older adults in stepfamilies and those without a spouse, as these groups may be at higher risk of inadequate care. More broadly, the study suggests that improving care adequacy will require strategies that consider family structure and target resources to individuals with under-met or unmet needs.
Citation
Patterson, S. E., & Freedman, V. A. (2025). Family structure and unmet care needs among older adults with and without dementia in the United States. The Gerontologist, 65(5), gnaf062. https://doi.org/10.1093/geront/gnaf062
