Ron Berger —
Most anyone who lives long enough can expect to have an experience with disability before they die. Moreover, as people live longer, on average, we are witnessing a process of what gerontologists Jeffrey Kahana and Eva Kahana call the “graying of disability.” Thus, US Census data indicate that about 25% of individuals 65-74 years live with an identifiable disability, as do about 50% of individuals 75 years and older. Additionally, Social Security Administration data indicate that about 17% of individuals 65 years and older have a nonsevere disability and about 42% have a severe disability.
At the same time, the elderly who acquire their disability later in life are less likely than those who were born with or acquire their disability earlier in life to identify with the disability rights movement or the cultural notion of disability pride, and they are more likely to view their impairments solely in terms of a medical condition rather than of the need for social advocacy or institutional and legal reform. Though people with disabilities, regardless of age, experience more loneliness and sense of social isolation than the general population, this is especially true of the elderly. On the other hand, the disability rights movement has tended to ignore the needs of the elderly when advocating on behalf of disability rights or the disability community.
The elderly who live in nursing homes, about 85% of all nursing home residents, face particular challenges. They typically suffer from multiple chronic illnesses and physical and cognitive impairments, including those that interfere with the management of daily personal care. Disabled seniors and their families typically try to delay a nursing home placement as long as possible, but once making the move, continued family involvement remains a key to an optimal outcome. Nursing home staff are notoriously underpaid, receive minimal training, and work under stressful conditions. Residents whose family members visit often, establish a good relationship with the staff, and alert them to their needs will tend to receive better care. If necessary, the family needs to advocate on behalf of their loved one, even if it means confronting nursing home personnel. Of course, such family involvement also decreases the social isolation of the residents themselves.
Of all the debilitating conditions experienced by the elderly, Alzheimer’s disease (AD) has arguably received the most attention. AD is an irreversible condition and one of the leading causes of death among elderly Americans. While the causes of AD are unclear, it is likely due to a mix of genetic, environmental, and lifestyle factors.
The discovery of AD is credited to Alois Alzheimer, a German psychiatrist and neuropathologist, who first wrote about the condition in 1906. In his autopsy of a 51-year-old woman, according to Martha Holstein, Alzheimer found “atrophy and lesions in the area of the cerebral cortex and an unusual clumping and distortion of cortical neurofibrils.” These are now known to be amyloid plaques and neurofibrillary tangles that progressively attach themselves to and destroy cells in certain parts of the brain, causing cognitive symptoms that, according to William Cabin, may include “memory impairment, speech and language comprehension problems, and impaired judgment,” and behavioral symptoms that may include “personality changes, irritability, anxiety, depression, delusions, hallucinations, aggression, and wandering.” AD is also accompanied by functional symptoms that may include “difficulty with eating, dressing, bathing, toileting, walking, grooming, getting in [and] out of bed, meal preparation, shopping, moving within and outside the house, money management, and using the telephone or computer.”
Alzheimer did not actually believe he had discovered a new disease outside of what is commonly referred to as senile dementia, and it was not until the 1970s that a medical consensus emerged that recognized AD as a special category of dementia. Still, the diagnostic criteria that distinguish AD from dementia remain unclear, with dementia being considered both a broad diagnostic category covering AD and a symptom of AD and other diagnoses associated with cognitive impairments. Nevertheless, researchers estimate that AD represents about 60% to 80% of all cases of dementia in the United States. AD progresses with age, with an estimated 10% of all persons over age 65, and as many as half over age 85, exhibiting the condition. The average length of time between the onset of symptoms and a medical diagnosis is 2.8 years. The average age of diagnosis is about 75 years, with men living an average of 4.2 years and women 5.7 years following diagnosis.
The symptoms of AD come on gradually and not all patients get to the point of being unable to recognize loved ones. But many do, and this can be emotionally painful for family members. Filmmaker Deborah Hoffmann recounts how her first reaction to her mother’s confusion and forgetfulness was to try to correct her, but she eventually learned to just go with the flow. When her mother thought Deborah was one of her mother’s sorority sisters, for example, Deborah decided to just play along and they had a joyful interaction. Similarly, actress Kimberly Williams-Paisley said that at first her mother seemed “like a ghost of the person that brought me up, and . . . there was this new person that looked different, acted different.” But then she realized she “was missing an opportunity to get to know this new person. . . . It was a great lesson for me in embracing the person in front of me and being strictly in the moment. . . . I realized she was still my teacher in so many ways.”
Seniors living with Alzheimer’s, as well as other disabling illnesses, tend to do best when they focus on small units of time and accept the fact they will have some good days and some bad days. Ultimately, however, the defining experience of disability in old age is connected to its proximity to death. All too often in contemporary societies, where youth is valued and aging is dreaded, people live in fear of death, and this is one reason younger generations may avoid their elders and socially isolate them. On the other hand, in societies where the elderly are valued for the wisdom they have to offer, there is more of a connection between the generations and a sense that the meaning of life involves the older generation “passing the torch” to the next. Moreover, as sociologist Morrie Schwartz told Mitch Albon in the best-selling book, Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Great Lesson, during his final days living with amyotrophic lateral sclerosis:
Everyone knows they’re going to die, but nobody believes it. If we did, we would do things differently. . . . But there’s a better approach. To know you’re going to die, and to be prepared for it at any time. . . . That way you can actually be more involved in your life while you’re living. … Do what the Buddhists do. Every day, have a little bird on your shoulder that asks, “Is today the day? Am I ready? Am I doing all I need to do? Am I being the person I want to be?” . . . The truth is, once you learn how to die, you learn how to live.
Mitch Albom, Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Great Lesson, 1997.
William Cabin, Phantoms of Home Care: Alzheimer’s Disease Patients as Victims of Medicare’s Designed Neglect, 2010.
Rosalyn B. Darling and D. Alex Heckert, “Orientations Toward Disability: Differences over the Lifecourse,” International Journal of Disability, Development and Education 57, 2010: 131-143.
Deborah Hoffmann, Complaints of a Dutiful Daughter, documentary film distributed by PBS, 1994.
Martha M. Holstein, “Alzheimer’s Disease and Senile Dementia, 1885-1920: An Interpretive History of Disease Negotiation,” Journal of Aging Studies 11, 1997: 1-13.
Jeffrey S. Kahana and Eva Kahana, Disability and Aging: Learning From Both to Empower the Lives of Older Adults, 2017.