Older patients with caregivers and assistance for activities of daily living: 1998 and 2000

by Lisa L. Dwyer, M.P.H., Division of Health Care Statistics


Many older community-dwelling adults reside with a caregiver, either family or nonfamily members. This living arrangement may result from one or more of the following situations: marriage, cultural norms (1), or the financial need or functional impairment of the care recipient (2). Combined data on discharged patients from the 1998 and 2000 National Home and Hospice Care Surveys reveal that 76 percent of those 65 years and over usually lived with their primary caregiver during the episode of care. A primary caregiver is an individual who is responsible for providing personal care assistance, companionship, and/or supervision to a patient (3). Over 80 percent of the primary caregivers in our sample were informal caregivers: spouses or children (including daughters-in-law or sons-in-law). More males than females lived with their primary caregiver, 90 percent versus 68 percent (p < 0.001), most likely due to men being cared for by their spouses who outlived them.

Oftentimes, coresidence with a primary caregiver is initiated when an older adult shows signs of activities of daily living (ADL) or instrumental activities of daily living (IADL) limitations that require caregiver involvement (2). Moreover, having a caregiver and receiving assistance with ADLs are strongly associated with using home health services (4). This analysis uses data from the 1998 and 2000 NHHCS to examine ADL assistance received by home health patients ages 65 years and over and the extent to which receipt of services is related to sex. The NHHCS collects data about characteristics of home health care and hospice agencies and their patients using agency reports and medical records. The surveys collected information about the primary caregiver the patients had during the episode of care. It also collected information on the receipt of services for ADLs during this episode.

Table 1. Percentages of older home health patients living with a primary caregiver and receiving assistance with activities of daily living from the agency, by sex: National Home and Hospice Care Survey, 1998 and 2000
Activities of daily living Percent male Percent female p-value
Any activity of daily living 41.7 52.7 <0.05
Bathing or showering 35.3 45.2 <0.05
Dressing 33.4 38.6 >0.05
Eating 5.6 10.0 <0.05
Transferring 28.1 35.3 >0.05
Walking 27.0 32.6 >0.05
Using toilet room 16.4 25.3 <0.05

NOTE: Responses “Don’t know,” “Not applicable,” and “Blank or invalid” were excluded from the analysis.

Significant differences were found between the sexes in the receipt of ADL assistance. Specifically, more women than men received assistance with any activity of daily living overall, 53 percent compared to 42 percent, respectively. Almost half of the female patients (45 percent) received assistance from a home health agency to bathe or shower compared to more than one-third of male patients (35 percent). Eating assistance was almost twice as likely among female patients as male. In addition, 25 percent of females received assistance from the agency in using the toilet room compared to 16 percent of males.

What does this data tell us?

The NHHCS data reveal that although men were more likely to live with their primary caregiver, women were more likely to receive formal services related to personal care. This demonstrates that informal caregivers, particularly of older women, do not provide all the necessary assistance; therefore, the patient still requires the help of formal care services. Although one would presume that women’s older age caused them to receive more help, the data show that the difference in mean age was statistically, but not clinically, significant: 78.66 (standard error (S.E.) = 0.39) for women versus 77.39 (S.E. = 0.41) for men. On the other hand, the data reveal a significant difference in the percentage of females, 85 years and over, compared to males: 25 percent versus 18 percent, respectively (data not shown). Generally speaking, receiving assistance suggests more functional limitation or impairment, whether acute or chronic, among women for which the primary caregiver is unable or unwilling to provide. In fact, a recent publication emphasizes the importance of informal caregivers in our long-term care system and also reveals that many of them have health problems themselves (5). This may explain, in part, why many informal caregivers do not provide assistance in all personal care activities, such as bathing or showering, eating, or using the toilet room. Future NHHCS surveys (the next one will be administered in 2007) that collect information on who assisted the sampled patients with each ADL will provide data to address these issues more. Such data will also provide information about the potential needs of and the subsequent services necessary for patients after discharge from a home health agency.


There are significant differences between community-dwelling older men and women living with a primary caregiver in the services they received from home health agencies. A greater percentage of women than men received assistance for personal care activities, such as bathing or showering, eating, or toileting, even while residing with a primary caregiver. This underscores the importance of community resources (i.e., formal care services) that provide older women and their caregivers with ADL assistance and other services to help alleviate the burden of care due to functional limitations.


  1. Himes CL, Hogan DP, Eggebeen DJ. Living arrangements of minority elders. Gerontology: Social Sciences 51B(1): S42–S48. 1996.
  2. Mickus M, Stommel M, Given CW. Changes in living arrangements of functionally dependent older adults and their adult children. Aging Health 9(1): 126–143. February 1997.
  3. Haupt BJ. Characteristics of hospice care discharges and their length of service: United States, 2000. National Center for Health Statistics. Vital Health Stat 13(154). 2003.
  4. Kadushin G. Home health care utilization: a review of the research for social work. Health So Work 29(3): 219–244. August 2004.
  5. Ho A, Collins SR, Davis K, Doty MM. A look at working-age caregivers’ roles, health concerns, and need for support. Commonwealth Fund pub. #854, August 2005.

Page last reviewed: November 6, 2015
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