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a National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, MD
Correspondence: Julie Dawson Weeks, PhD, National Center for Health Statistics, Centers for Disease Control and Prevention, 6525 Belcrest Road, Room 730, Hyattsville, MD 20782. E-mail: jweeks{at}cdc.gov.
Decision Editor: Laurence G. Branch, PhD
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Abstract |
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Key Words: Elderly persons • ADLs • Disability • Living arrangements
Many elderly persons living in the community have difficulty performing basic activities of daily living (ADLs), such as eating, walking, and toileting. Often, individuals are able to overcome such difficulties through the use of assistive devices (see, e.g., Hartke, Prohaska, and Furner 1998
; Manton, Corder, and Stallard 1993; Verbrugge, Rennert, and Madans 1997). In many instances, however, disabled elderly persons need help from others (i.e., personal assistance) to perform ADLs (Norburn et al. 1995). If the need for assistance goes unmet, older adults may be at risk for a variety of adverse outcomes, including increased health services utilization and depression (Allen and Mor 1997) as well as institutionalization (Chenier 1997; Tennstedt, McKinlay, and Kasten 1994). Current estimates of need and unmet need for ADL personal assistance may serve as an indicator of future need for long-term care services (Tennstedt et al. 1994).
To help reduce the burden of unmet need and to facilitate the development and targeting of in-home and community-based services, it is important that we determine the prevalence and correlates of unmet need for personal assistance with ADLs. To date, however, few population-based studies have sought to address this issue. Analyzing data from the 1984 National Long-Term Care Survey (NLTCS), Manton 1989 found that, among community-dwelling older adults with chronic disability, the prevalence of unmet need for ADL assistance ranged from 1.4% (eating) to 27.9% (toileting). Overall, more than a third (34.6%) of the disabled population aged 65 years and older reported an unmet need for assistance with one or more ADLs. Prevalence of unmet need was strongly associated with increasing age and level of disability.
Using different definitions of disability, need, and unmet need, Allen and Mor 1997 conducted a telephone survey of disabled adults in Springfield, Massachusetts, and found that the prevalence of unmet need for assistance with ADLs ranged from 4.3% (eating) to 22.6% (bathing) among those aged 65 and older. Unmet need was significantly more likely among persons with two or fewer reliable helpers and among those who were more severely impaired. The authors also found that a substantial proportion of elderly persons with unmet needs experienced serious, negative consequences as a result of receiving inadequate personal assistance. In another study of disabled elderly persons (aged 70 years and older) in Massachusetts, Tennstedt and colleagues 1994 reported that less than 10% of respondents had an unmet need for assistance with personal care ADLs and that the likelihood of unmet need was significantly associated with level of disability.
From a national policy and planning perspective, these previous findings are somewhat limited insofar as they are based on older data or on data from a limited geographic region. In contrast, in the present study we used recent data from a nationally representative sample of older adults to address the following objectives: (a) to derive estimates of need and unmet need for ADL personal assistance; (b) to identify correlates of unmet need; and (c) building on the work of Allen and Mor 1997, to examine the prevalence and correlates of negative consequences of unmet need for ADL assistance.
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Methods |
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). Approximately 1 year after the 1994 NHIS was conducted, household members aged 70 years and older were recontacted, and 9,447 of these individuals completed the SOA II (NCHS 1998). Reflecting the U.S. population aged 70 and older in 1995, the weighted SOA II sample had a mean age of 77.3 years and was 60% female and 90% White. Trained interviewers from the U.S. Bureau of the Census collected SOA II data through face-to-face, in-home interviews. Assisted and proxy interviews (6% and 11%, respectively) were allowed for elderly persons who were unable to participate on their own because of illness or impairment. Data were collected on various aspects of health and well-being in later life, such as sociodemographic characteristics, living arrangements, and measures of physical health and functioning, including ADLs.
The SOA II interview included a series of questions about seven ADLs: (a) bathing or showering; (b) dressing; (c) eating; (d) getting in and out of bed or chairs (i.e., transferring); (e) walking; (f) getting outside; and (g) using the toilet, including getting to the toilet (Katz, Ford, Moskowitz, Jackson, and Jaffe 1963). For each ADL, respondents were first asked whether or not, because of a health or physical problem, they had any difficulty performing the activity (by themselves and without using special equipment). For the purposes of this study, we defined disability as difficulty performing ADLs. The prevalence of ADL disability ranged from 2.5% (eating) to 23.9% (walking). Overall, nearly 30% of all persons aged 70 and older reported difficulty performing one or more ADLs. Excluding individuals who reported no difficulty performing ADLs (see Fig. 1), we focused the analyses of this study on older adults with ADL disabilities.
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Negative Consequences of Unmet Need
For four of the seven ADLs, the SOA II interviewers asked respondents whether or not they had experienced (during the past month) any negative consequences as a result of inadequate personal assistance. For example, respondents who reported experiencing either (a) discomfort because they were not able to bathe as often as they would have liked or (b) a burn or scald caused by bathing with water that was too hot were regarded as having experienced a negative consequence of unmet need for personal assistance with bathing/showering. Similar sorts of questions were asked for dressing, eating, and toileting (see Table 1 ).
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Potential Correlates
Sociodemographic characteristics, number of chronic conditions, and level of ADL disability were considered as potential correlates of unmet need and negative consequences of unmet need for personal assistance with ADLs. Specifically, we included the following sociodemographic variables in the analysis: sex, age (70–74, 75–79, 80–84, 
85 years), race (White, Black, or other), education (<12 or 12 years), annual household income (<$20,000 or $20,000), and living arrangements (alone or not alone).
Respondents reported whether or not they had ever had (a) a broken hip; (b) osteoporosis; (c) diabetes; (d) arthritis; (e) chronic bronchitis or emphysema; (f) asthma; (g) hypertension; (h) heart disease (including coronary heart disease, angina, heart attack or myocardial infarction); (i) any other heart disease; (j) a stroke or cerebrovascular accident; or (k) cancer. We calculated a summary score and categorized respondents as having had zero to one, two to three, or four or more chronic conditions. Level of ADL disability was defined according to the number of ADLs an individual had difficulty performing (one to two, three to four, or five to seven ADLs). Because assisted and proxy interviews were allowed in SOA II data collection, our analyses also included a variable for respondent status (self, assisted, or proxy).
Data Analysis
Among persons with ADL difficulties, we determined the overall distribution of need (i.e., no need, met need, or unmet need) for personal assistance with ADLs. Then, focusing on those individuals who reported need (either met need or unmet need) for assistance, we reexamined level of unmet need. Next, we determined the proportion of individuals who had experienced a negative consequence as a result of their unmet need. Finally, chi-squared and logistic regression analyses (Agresti 1990) were performed to identify correlates of both unmet need and negative consequences of unmet need for personal assistance with one or more ADLs. The multivariate analysis employed a backward elimination strategy (Kleinbaum 1994). Odds ratios (ORs) with 95% confidence intervals (CIs) were calculated. We performed all analyses using SUDAAN (Shah, Barnwell, and Bieler 1996) to take into account the survey's complex sample design; this allowed for appropriate variance estimation and weighting of the data.
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Results |
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Discussion |
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It is difficult to compare estimates of unmet need for ADL assistance across studies, because of considerable differences in study methods; sample characteristics; and definitions of disability, need, and unmet need. Whether we use all persons reporting difficulty performing a given ADL or only those needing assistance as the denominator, our estimates of unmet need differ from those previously reported (Allen and Mor 1997; Manton 1989; Tennstedt et al. 1994). For most ADLs, we found higher rates of unmet need for assistance than either Manton 1989 or Tennstedt and colleagues 1994. This may be explained, at least in part, by our more comprehensive definition of unmet need: Whereas the two earlier studies asked only respondents receiving no help at all whether or not they needed help, we additionally asked those receiving some help whether or not they needed more help (similar to Allen and Mor 1997). Moreover, the relatively low rates of unmet need reported by Tennstedt and colleagues 1994 may reflect the fact that their analysis focused on a select subsample of study participants who were still alive and community-dwelling 2 years following baseline interview. The higher rates of unmet need reported by Allen and Mor 1997 may, in part, be attributed to their assessment of need in the past month (1-month period prevalence) as opposed to need at the present time (point prevalence).
Consistent with other studies (Allen and Mor 1997; Manton 1989; Tennstedt et al. 1994), on the other hand, was the finding that level of ADL disability (defined as the number of ADLs an individual had difficulty performing) was the strongest predictor of unmet need. The positive association between severity of disability and prevalence of unmet need for assistance likely reflects the fact that elderly persons with more ADL difficulties require more personal care, thereby increasing the likelihood that caregivers will not be able to satisfy all needs. The importance of the observed association between level of ADL disability and prevalence of unmet need is underscored by findings that increased disability and caregiver burden often precipitate the transition from community living to institutionalization (Chenier 1997).
In this study, we also found that disabled elderly persons whose annual household income was less than $20,000 were more likely to report receiving inadequate personal assistance with ADLs. Although Tennstedt and colleagues 1994 did not find an association between income and unmet need, Allen and Mor 1997 reported that the number of routine expenses one could not afford (a proxy for income) was positively associated with the number of unmet ADL needs (OR = 1.14, 95% CI = 0.99-1.30). Similarly, in a study of cancer outpatients (Siegel, Raveis, Houts, and Mor 1991), unmet needs were significantly more likely among those eligible for Medicaid or public assistance. In these data, we did not find an association between insurance status and unmet need. More than 95% of the sample had Medicare; in addition, 21% had Medicaid and 64% had private insurance. Prevalence of unmet need for personal assistance with one or more ADLs did not differ according to presence or absence of Medicaid (21.2% vs. 20.6%, respectively, p = .84) or presence or absence of private insurance (19.8% vs. 23.0%, respectively, p = .23). These data suggest that elderly persons living in lower income households are less likely to be able to pay for formal care when the level of informal caregiving is insufficient. There is longitudinal evidence that increased access to formal in-home services may contribute to continued community living among disabled elderly persons (Tennstedt, Crawford, and McKinlay 1993b).
Older adults with multiple ADL difficulties and limited financial resources were at increased risk for not only having unmet needs but also experiencing negative consequences of unmet needs. It is of great concern that nearly half of those with unmet needs experienced one or more negative consequences, because many of the negative consequences (such as not being able to eat when hungry and experiencing a burn or scald when bathing) had the potential to seriously threaten the health and safety of those with unmet needs.
Our finding that older adults who lived alone were twice as likely as those who lived with others to report an unmet need for personal assistance is consistent with an extensive body of literature on instrumental social support (e.g., Langford, Bowsher, Maloney, and Lillis 1997) and informal caregiving (e.g., Robinson 1997). As expected, in the majority of cases, a disabled respondent's spouse or child was the primary caregiver. A more detailed analysis of household composition, marital status, and availability of children supported the findings of Chappell 1991 and Tennstedt, Crawford, and McKinlay 1993a that coresidence is often more important than kinship tie per se in determining patterns of informal care and use of formal services. The fact that those who live alone are especially vulnerable to having unmet needs is important in light of the fact that, over time, an increasing proportion of the oldest-old, particularly women, are living alone (U.S. Bureau of the Census 1996).
We also found that participants with a proxy respondent were less likely to have unmet needs. Although we believe this likely reflects the fact that those with an available proxy are more likely to need and, indeed, receive personal assistance with ADLs, the association may stem from proxies' greater unwillingness to report unmet need, fearing that doing so would negatively reflect on their own caregiving adequacy. To the extent that the latter is true, unmet need for ADL personal assistance would be underestimated. Notably, the same correlates of unmet need and negative consequences of unmet need were found when we restricted the sample to self-respondents only.
Although the majority of older adults who have difficulty performing basic ADLs have either no need or met need for personal assistance, a substantial proportion of disabled elderly persons continue to have unmet needs and experience negative consequences as a result. Most of the assistance that a community-dwelling elderly person receives is provided informally by family caregivers; in some instances, this care is supplemented by formal services. Because individuals whose needs for assistance go unmet may be at risk for a variety of adverse outcomes, it is important that the likelihood of having unmet needs be minimized. Greater, targeted efforts are needed to identify at-risk older persons living in the community and to provide services (e.g., home care, community-based services, assistive devices, and residential modifications) that may reduce the burden of unmet need. In the present study, we identified broad sociodemographic and health status factors associated with unmet need and negative consequences of unmet need for ADL personal assistance. Further studies are needed to identify and overcome specific barriers to receiving help and services (e.g., inability to pay and lack of accessibility or availability in one's area). Future work should consider the effectiveness of targeting potentially vulnerable populations, such as older adults living in low-income housing or poor rural communities.
Follow-up data are currently being collected on SOA II respondents. In future studies, we will be able to examine the longitudinal effects of having unmet needs for ADL personal assistance in terms of outcomes such as functional decline, medical visits, hospitalizations, institutionalization, and mortality.
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Dr. Desai is currently with the Yale University School of Medicine, Department of Epidemiology and Public Health, New Haven, CT.
Received for publication March 7, 2000. Accepted for publication August 22, 2000.
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