Those who live to an older age are much more likely than those who die at younger ages to be disabled in basic activities of daily living, and thus dependent on caregiver assistance months or years prior to death. Over one third of all older adults can expect to experience need assistance with ADL disability a year prior to death, and over a quarter two years prior to death. Nearly all older adults will have difficulty walking or climbing stairs two years before death. Half of all older adults who live to their tenth decade will be disabled in activities of daily living two years prior to death, and over two-thirds six months prior to death, and thus be dependent on the help of family or paid caregivers for a protracted period of time. Among women and men who live to the same age, women will be disabled substantially longer before death. The poor bear a greater burden of functional impairment and disability in the two years prior to death than the wealthy.
Many persons are now living independently into their 9th and 10th decades. While we often can not exactly predict when these individuals are entering their last two years of life, we know with certainty that all will have an end of life experience, and in most cases, will need assistance with basic activities a protracted period of time before death. From a societal perspective, the number of persons living with disability prior to death will balloon as the population ages.
Our data do not directly address the compression of morbidity hypothesis which suggests that as life expectancy increases on a societal level, the amount of time spent in disabled states will decrease, although we found no time trend in rates of disability over the most recent 10 years.18
Our data do question whether it is currently reasonable to sell the public a view of aging that purports that it is reasonable to expect to both live a long life and remain free of disability throughout life.4
Our findings add to the evidence that those who live to advanced ages will spend greater periods of time in states of disability prior to death than those who die at younger ages.6,7
One response to the information we present is to increase resources directed at the prevention of disability prior to death. Many people fear living in a state of disability prior to death, and some fear living in a prolonged state of disability prior to death more than death itself.19
Yet previous research suggests that once older adults become disabled, they often report that they maintain a good quality of life.20
Younger, non-disabled persons underestimate their ability to adapt to disability in advanced age. Efforts directed at prevention of disability are important. For many older adults, however, disability is part and parcel of life. Our findings suggest that many older adults have a prolonged period of time to learn to adapt and cope with disability prior to death.
Another response to this information is an acknowledgement of the inevitability of disability at the end of life, and support for formal and informal care systems that promote a high quality of life for disabled persons nearing the end of life.20
Our current system is too focused on disease-specific outcomes, such as gycoslyated hemoglobin levels for patients with diabetes, or survival in patients with heart failure.21
But these outcomes do a poor job of capturing the goals of older adults, who often live with disability, multiple chronic conditions, and cognitive impairment for months or years prior to death. Our health care system needs to be redirected toward the meeting goals of the many older adults whose priority is maintaining physical function and a high quality of life in their last years.21
The needs for ADL assistance in the last years of life we describe are often provided by unpaid family caregivers, resulting in a considerable savings to our society.22
Our current health system does an inadequate job of supporting family caregivers, many of whom, untrained and unprepared, struggle for months and years providing in-home care for disabled older adults with little support from our health or social systems.2,23,24
Caregiving is a duty for some and a gift for others. But caregiving also places a significant physical, psychological, and financial strain on families.25,26
Successful healthcare innovations that incorporate family caregivers have been developed,27-30
but in comparison to drug and device innovations designed for older adults, these healthcare innovations have not been widely implemented and disseminated.
While previous research demonstrated that women are more likely to become disabled then men,5,31
to our knowledge, this is the first national study to demonstrate that women are at risk for increased disability at all time points during the last two years of life, independent of age of death. The combination of higher life expectancy and higher rates of disability at any given age at death makes end of life disability a crucial yet generally unrecognized women's health issue. As with many issues in geriatrics, the etiology of this gender gap is likely multifactorial, attributable to some mix of gender differences in rates of disabling conditions (e.g. depression, osteoarthritis), geriatric syndromes (e.g. falls), and predisposing physiologic factors (e.g. body fat composition and sarcopenia).31
Furthermore, women disproportionately bear the burden of providing care for disabled older adults. Whereas disabled older men are likely to be cared for by a spouse, disabled older women are more likely to be living alone, with few financial resources, cared for by a daughter.31
Policy makers need to account for these gender disparities when designing interventions to support women in their last years of life.
Our estimates of disability during the last two years of life are likely conservative, for two reasons. First, according to next-of-kin after the subject's death, the 1,989 excluded subjects without an interview in the last two years had 4% higher rates of disability than subjects included in our sample. Second, next-of-kin of subjects included in our sample report higher rates of any disability during the last 3 months of life (74%) than subjects reported themselves in the last month of life (56%). This is likely because disability continues to increase during the final month, and next-of-kin report their last recollections of their loved ones from the final days of life, when rates of disability are highest.
Older age disability is known to be a dynamic process and older persons have episodes of recurrence and remission of disability before becoming permanently disabled.11,12
Our study design is not able to capture individual trajectories of function. While our analyses do not provide data about the disability trajectories individuals may experience in the last months of life,6
they do provide detailed estimates of the proportion of persons who will have ADL disability, and thus need caregiving assistance at some point during the last two years of life. It also provides national estimates of the disability burden in men and women, and how the risk of disability varies by wealth. These detailed estimates, which did not previously exist, provide essential data that provide insights into population health and caregiving needs in the last two years of life.