Rethinking functional disability among community-dwelling older adults: The implications for families, caregivers, and home-care policy

Behavioral risk factors for disability in later life invariably focus on self-reported limitations, the use of special equipment, and the number of ADLs (activities of daily living) that are “difficult” or require “assistance.” State and federal programs are also increasingly moving to a “two-plus” standard (i.e. requiring limitations in at least two ADLs). Missing from these statistics are data on the social and cultural factors shaping the meaning and experience of disability for many older adults. This study gathered both quantitative and qualitative data on ADLs and IADLs, self-reported difficulty, family support, and care preferences were gathered from 64 community-dwelling adults in New York City (42 women and 22 men). Ages ranged from 69 to 91 (mean 79 and SD 5.6). Data revealed important discrepancies between ADL and IADL limitations. While 91 percent needed no help preparing meals, 64 percent had moderate to advanced difficulty shopping for groceries. While 91 percent needed no help with mobility at home, 31 percent said mobility was difficult and 25 percent used canes or walkers at home. With only 19 percent having any amount of paid home help, 56 percent felt that family would be unable to help with ADLs over time. In qualitative data, individuals also set limits for when and how they would accept help from home attendants and family members. Thus, mixed methods can reveal important and often overlooked dimensions of disability and support that can challenge accepted ideas about independence, the need for assistance, and home care policy.