Disability and Care Needs of Older Americans: An Analysis of the 2011 National Health and Aging Trends Study. Summary and Implications

04/11/2014

Using the new NHATS, this report describes late-life disability and care needs for older adults (over age 65). We find that 18 million older adults--nearly half--have received help related to their health or functioning or had difficulty carrying out self-care, mobility, or household activities alone with whatever supports they have put into place during the last month.

The group receiving help with the most basic self-care and mobility activities represents over 7 million people. This figure corresponds to 20% of the population, which is substantially larger than previous estimates (Spillman 2011; Freedman et al. 2013). Indeed, the percentage reporting help with self-care or mobility is twice the size of the estimate from the 2004 NLTCS (10%) and the 2008 Medicare Current Beneficiary Survey (MCBS) (11%) (Freedman et al. 2013). Several measurement-related issues likely contribute to the higher estimates. For instance, we include going outside, which is not consistently included with self-care and mobility measures in other studies. Excluding going outside, the NHATS estimate would be 17.4%. NHATS’s captures help received over a longer reference period--the last month rather than the one week used in the NLTCS. Finally, NHATS asks all sample members (except nursing home residents) whether they ever perform self-care and mobility activities, how they are carried out, and if they ever did them by themselves in the last month, and only then ask about whether they have difficulty when they perform each activity independently with whatever assistive devices they use. Other surveys use screening or skips that exclude some sample members from questions about assistance based on whether they acknowledge or perceive difficulty. For example, the NLTCS pre-screens and excludes sample members who do not perceive a “problem” with self-care or mobility activities, and the MCBS skips respondents around assistance questions if they report no difficulty with activities. Similar issues also pertain to household activities, but they are even more stark in the case of the NLTCS, which asks the reason for receiving help only if a respondent receives help and reports inability to do an activity. It is also possible that disability rates actually have increased since 2004 in the case of the NLTCS or 2008 in the case of the MCBS, but the numbers presented in this report should not be interpreted as trends given the distinct measurement approaches.

Very few older adults have no potential informal network members. The mean size of the potential network is approximately four per person (including spouses/partners, children, household members, and close friends)--the latter group has not typically been included in such potential network counts. Actual networks increase in size in proportion to intensity of assistance and are varied. This study confirmed that caregivers often are children and spouses/partners (60%), but also identified a role for other household members (8%) and other social network members (6%). The remaining helpers come from outside the potential network and include paid and other kinds of informal helpers (e.g., friends outside the social network, granddaughters, other non-relatives, and daughters-in-law). About three in ten older adults who receive assistance have both paid and unpaid help; the percentage is even higher--45%--among those at the most intense levels of assistance (3+ self-care or mobility activities). Average paid, unpaid, and total hours also all rise sharply with level of assistance. 

For the 2 million older adults living in supportive care settings (broadly defined), the most commonly used services were meals (77%) and housekeeping (68%). Hours of non-staff paid help are higher in community settings than residential settings with supportive services (29 vs. 14 hours per month) as are unpaid hours (164 vs. 50 hours per month). This latter finding suggests that residential care may substitute for both paid and unpaid sources of help.

Levels of adverse consequences suggestive of unmet need are high, particularly among those with greater levels of care. Overall, 32% of the 65 and older population with difficulty or receiving help with a self-care, mobility or household activities reported having at least one unmet need in the last month. The chances of having an adverse consequence because an activity was too difficult or no one was available to help increase markedly with level of assistance. Among those who have difficulty or receive help, those in supportive care settings have only a slightly higher risk of unmet need relative to those in the community. Those receiving paid care from persons other than staff, however, have especially high levels of unmet need: nearly 60% had a negative consequence in the last month. This finding warrants further investigation to better understand who is in this group, particularly in light of the focus on expanding public benefits in the community to avoid or reduce the need for nursing home care.

There are several limitations to this analysis. At baseline, NHATS did not interview respondents in nursing homes and therefore we could not explore disability, care, and unmet need among this population. However, older adults living in nursing homes are a small and shrinking group--now about only half the size of the supportive care population broadly defined. Moreover, NHATS purposefully included older adults in all supportive care settings and interviewed not only the sampled person in these settings but also a facility respondent as well so that services could be accurately captured. A second limitation is that this initial description is by design cross-sectional. Future research is needed that examines how older adults transition from one stage of disability to the next. Finally, this report presents details on informal care from only recipients’ point of view; a separate report (forthcoming) will detail care from the informal providers’ viewpoint.

Nevertheless, findings in this report suggest several potentially important avenues for future research. First, a large share of the older population--over 70%--is managing independently. Many older adults are fully able to carry out daily activities, but others are using assistive devices, environmental modifications, or limiting their activities (Freedman et al. in press). Understanding the role of behavioral accommodations in delaying assistance and mitigating difficulty would be beneficial.

Second, findings regarding the interplay of non-staff paid care and informal care with care provided in supportive settings are new and warrant further study. It may be that residential care compensates for smaller effective potential networks; we did not take into account willingness and ability to provide care among potential network members or proximity. Alternatively, residence in supportive care settings may be a way of making caregiving more sustainable, particularly as care needs or the need for oversight increase. As future rounds of NHATS become available, researchers will be able to analyze the interplay between supportive care settings and care networks outside the residence and investigate whether involvement of supplemental care in this setting helps keep unmet need levels on a par with the community.

Third, the prominent level of adverse consequences linked to unmet need in the older population with limitations in daily activities, particularly among those receiving formal care in the community, is noteworthy. Although past research has established that unmet need has negative outcomes including increased falls, hospitalizations, and emergency room use (Allen & Mor 1997; Desai et al. 2001; LaPlante et al. 2004; Komisar et al. 2005; Sands et al. 2006), less is known about which care networks give rise to unmet need and what policy solutions might be proposed to address it.

In conclusion, this report paints an up-to-date picture of late-life disability and care needs for older adults. New measures in NHATS suggest that needs are higher than previous data have suggested, but care networks are also substantial, and levels of informal assistance are high, not only for older adults in the community but also for those in residential care. Particularly notable is that we find a much larger proportion of the population receiving assistance with three or more self-care or mobility activities, a level of need associated with a high rate of unmet need, high risk of institutionalization, and with eligibility for private insurance or public program benefits. A disproportionate share of older persons at this level of assistance is in the lowest income quartile. Although publicly and privately paid care continues to be an important source of assistance to older adults with extensive needs, the higher level of unmet need for care among those receiving paid care is cause for concern and warrants further investigation. As individual preferences and public programs continue to support the shift of the locus of long-term care from nursing homes to the community and alternative residential care settings, a better understanding of unmet need can inform policies to promote safety and maximized functioning in the community and the well-being of older adults and their families.

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