Quality of Life in Late-Life Disability: “I Don't Feel Bitter Because I Am in a Wheelchair”

It is likely that quality of life assessments will be critical in helping the healthcare system address the needs of a rapidly growing and diversifying geriatric population, especially those living with late-life disability.1,2 Eighteen million people aged 65 and older in the United States are currently living with a disability.2 Late life is a term used to describe a period near the end of life (typically ≥ 65) and distinguishes this population from people who develop disability earlier in life.3,4 As people move into late life, their level of disability increases dramatically.5,6 In one study of individuals aged 85 to 89 and 90 and older, only 15% and 3%, respectively, were able to perform all activities of daily living (ADLs) and instrumental activities of daily living (IADLs) independently in their last year of life.7 In general, many older adults are living with disability for years before death, and this proportion rises dramatically during the last years of life.8 Despite the growing population of elderly adults with late-life disability, little is known about their experience or quality of life. Most nondisabled people fear living in a state of disability before death and are potentially unprepared to manage declining function and dependence.9,10 Previous research on quality of life in the general population has assumed that quality of life decreases as people age and become more disabled,11 but the best source for information about quality of life is not the projection of healthy individuals about quality of life in hypothetical states of disability but the perspectives of the elderly adults who are living with late-life disability. This research is lacking. To address the lack of information about this population in quality-of-life research, a qualitative study was conducted to characterize the factors that contribute to quality of life in a diverse population of elderly adults with late-life disability. It was decided to study this question in a diverse population because culture can greatly influence many of the factors that influence quality of life, and it was desired to examine a range of perspectives that reflects the diversification of the elderly population in the United States. If the quality of life that elderly adults with late life disability experience is better understood, it will be possible to develop better assessment tools to measure quality of life accurately in the future and, as a result, to target interventions to improve quality of life for a growing population of elderly adults with late-life disability and significant health needs.