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

04/11/2014

NHATS has been designed to capture a detailed picture of how functioning in daily life changes with age (Freedman 2009). The validated protocol (Freedman et al. 2011) probes whether and how activities are performed in the prior month along with information on types of help received with personal assistance, household help, and other common tasks such as transportation assistance or being accompanied to doctor appointments. NHATS also offers detail on the service environments in which older adults live and measures of unmet needs, defined as having experienced specific adverse consequences associated with particular activities for lack of help.

Sample. The first round of NHATS took place in 2011 with a national sample of older adults drawn from the Medicare enrollment file (Montaquila et al. 2012a). African Americans and respondents at older ages were oversampled. In all, 8245 interviews were completed. Respondents living in the community and residential care settings other than nursing homes received a two-hour in-person interview that included self-reports and performance-based measures of disability. For respondents in residential care settings including nursing homes a facility respondent provided information about services available and the type of place. For the prevalence of disability and characteristics of the population with and without disabilities, we draw upon the 8077 respondents who either had a completed sample person interview (N=7609) or were residing in a nursing home (N=468). Because only facility interviews were conducted for those living in nursing homes, they are assumed to be dependent in at least one activity for the purpose of disability prevalence estimates and excluded from analyses of care arrangements and unmet needs.

Key Measures for this Report. We constructed several key measures for this report reflecting activity limitations, assistance, the potential and actual care network, hours of care, and residential care and services.

  • Activity limitations. We constructed a three-category measure reflecting limitations in self-care, mobility, or household-related activities. Self-care activities include bathing, dressing, eating, and toileting. Mobility-related activities include getting out of bed, getting around inside one’s home or building, and leaving one’s home or building. Taken together, self-care and mobility activities correspond to ADLs. Household activities include laundry, hot meals, shopping for personal items, paying bills/banking, handling medications, corresponding to IADLs. Three hierarchical categories were created summarizing how activities are carried out: (1) without difficulty and without assistance from another person; (2) with difficulty when carried out alone and with whatever accommodations the individual has made; and (3) with assistance from another person, which for household activities must be for health-related or functioning-related reasons. See Appendix I for further details.
  • Assistance. We define four levels of assistance. All respondents living in a nursing home (confirmed by a staff person at the place) are assumed to be receiving assistance and are treated as a distinct category. Individuals receiving assistance with 3+ self-care or mobility activities are considered separately from those receiving assistance with 1-2 self-care or mobility activities. A fourth category consists of individuals who receive assistance with household activities for health or functioning reasons. We sum these first four groups to form the population receiving help with any self-care, mobility or household activities (analogous to any ADL or IADL assistance).
  • Potential care network. We counted as potential informal network members all living children (in and outside the household), spouses/partners, other household members, and social network members (up to five people the sample person feels he/she can talk to about important things) identified by the respondent. There is no way to definitively identify an individual’s potential informal care network, but our measure captures the types of individuals most commonly involved in care. Our approach may overstate actual availability of informal care if needed because it does not take into account willingness or ability to provide care or geographic proximity. On the other hand, the approach is conservative in its exclusion of non-resident siblings and step-children (the latter group less likely to be involved in care of their step-parents than biologic children; Pezzin & Schone 1999).
  • Actual care network. Actual networks include those who helped in the last month with self-care or mobility tasks, household tasks, or selected other tasks (driving, seeing the doctor, less common money matters, and health insurance matters). If the respondent lived in a residential care setting, staff members were not counted, but were considered a source of paid help. Other non-staff paid and unpaid persons assisting respondents in residential care were counted individually. In this report we focus on actual networks for sample persons who received help in the last month with any self-care or mobility task or any household task for health or functioning reasons.
  • Supportive care environments and services. NHATS distinguishes among care settings that are nursing homes, supportive care settings other than nursing homes, and all other community settings. Nursing home and other supportive care places were confirmed through an interview with a facility staff member. Such an interview was triggered by questions in the sample person interview about whether the place they lived offered group meals, bathing and dressing care, or had different levels of care the sample person could move to if he/she needed care.In cases where an interviewer conducted the facility interview first, the type of setting was first confirmed through the facility interview, and a sample person interview attempted if the respondent was found to be in a residential care setting other than a nursing home. Supportive care included the following place types (as reported by the facility respondent): adult family care homes, group homes, board and care homes, personal care homes, assisted living, the assisted living section of a multi-level place, independent living or an independent part of a multi-level place, and enriched housing (housing with services).
The sample person interview asked about whether particular services were available and, if so, if they were used in the last month. In addition, facility respondents were asked to indicate whether each service was offered at the sample person’s level of care. Services included: meals, help with medications, help with bathing and dressing, laundry services, housekeeping services, transportation to medical care providers, transportation for shopping or leisure activities, recreational facilities, organized social events/activities. In this report we use facility reports of services available and sample person interview reports of services used.2
  • Hours of unpaid and paid care. For older adults living outside the nursing home, NHATS provides estimates of hours of unpaid and paid care in the last month provided by each caregiver, excepting hours provided by staff at residential care settings.
Hours were missing for one or more caregivers for 12% of sample persons receiving help. For these sample persons receiving help who were missing hours we imputed paid and/or unpaid hours for each caregiver based on the NHATS respondent’s age, sex, level of assistance, and for informal caregivers their relationship to the sample person and, then summed across caregivers to create total hours. See Appendix II for details.
 
We include all hours provided by an individual identified as a (non-staff) caregiver for the activities identified earlier, including self-care, mobility, household tasks, driving, seeing the doctor, and help with insurance matters and other less common financial tasks. NHATS respondents report only total hours provided by each caregiver identified, so that hours cannot be parsed into those devoted to particular activities.
  • Adverse consequences associated with unmet need. Finally, among the older population who report difficulty or getting help, NHATS asked about adverse consequences linked to unmet need for assistance with self-care, mobility, and household activities (Allen & Mor 2007; Komisar et al. 2005). For each activity, sample persons who reported difficulty doing the activity by themselves were asked, whether there was ever a time in the last month when they had a particular consequence because it was too difficult to do the activity by themselves. Respondents who reported receiving help all the time or not doing the activity in the last month were asked whether the consequence occurred because there was no one there to help. Consequences included: having to stay in bed, not being able to go places in their home or building, not being able to leave their home or building, going without eating, going without showering/bathing/washing up, accidentally wetting or soiling their clothes, going without getting dressed, going without clean clothes, going without groceries or personal items, going without a hot meal, going without handling bills and banking matters, and making a mistake in taking their medications. We created three summary measures indicating: an adverse consequence for mobility/self-care, for household care, and for either type of activity.

Weighted Percentages and Population Estimates. For all estimates we use analytic weights that take into account differential probabilities of selection and non-response (Montaquila et al. 2012b). For population estimates, we further adjust totals to the age distribution of the sample frame.


1 The services trigger was used for people living in multi-unit buildings; people living in other structures (e.g., free
standing or attached homes or mobile homes) were instead handed a list of places and asked if the place they lived
was a private residence or one of the other places on the card (e.g., board and care facility, assisted living facility or
continuing care retirement community, or religious group quarters).
2 In cases where a facility questionnaire was not completed (N=59) or information on specific services missing (N=9
to N=11 cases, depending on the service), respondent reports on services available were used to fill in missing
information.

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