Understanding the complex trajectories of disability and aging requires a biopsychosocial approach that considers disability in the broader context of later adulthood. Although disability service researchers and gerontologists have many shared interests and a similar mission, the fields are relatively new to one another and have had little historical interaction. The purpose of this article is to increase and improve collaboration among investigators in these fields by providing some background in social gerontology to the disability researcher, and by applying key theories in aging to the issue of growing older with physical disability. The article discusses particular problem areas for older adults, including social support, and also discusses the parallel paradoxes of aging and disability.
“True terror is to wake up one morning and discover that your high school class is running the country.” ∼Attributed to Kurt Vonnegut Jr
The term “older adult” has a complicated history, and is associated with more than a little political and public health controversy. Although in the broadest sense of the word, aging is a process that begins at birth, most researchers who describe aging are really talking about changes that come about after physical maturity and in later adulthood. In this sense, growing older is often seen as a time-dependent series of irreversible and progressive declines in functioning that manifests at reproductive maturity and eventually ends in death. In this purely biological model of aging, these processes are seen as normal, cumulative, and inevitably associated with loss and decline.
Given the historical dominance of this conceptualization of aging and later adulthood, it is no wonder that researchers and health care professionals have for many years associated being older with sickness, frailty, and depression. Media and popular opinion contribute to this view by emphasizing the losses that occur with age, which include loss of spouse, friends, relatives, sensations, cognitive functioning, finances, independence, work, and physical ability. Younger adults, caregivers, and families project their own fears onto their elders, and presume that in the face of such overwhelming losses, older individuals must experience depression and chronic grief. Older adults are therefore often depicted either as isolated and depressed, or paradoxically, as gentle and noble creatures who somehow transcend suffering and dispense timeless wisdom. Between these extremes, there is little room for an older adult to be a genuine person, and to experience the wide range of emotions and social changes associated with living into old age. Even more importantly, such stereotypes downplay the incredible heterogeneity of the older adult population; older individuals have tremendous variability in terms of physical, cognitive, and emotional functioning, and adequate approaches to aging must take into account this heterogeneity.
One place that this vast variability manifests is in physical disability. Older adults vary greatly in their abilities to perform activities of daily living and instrumental activities of daily living, and in their responses to disability. Concurrent to the trajectory of aging (in chronologic years) is the trajectory of disability, and these trajectories interact in complex ways across the life span. People who are free of disability until late in life experience disability with age. This group includes individuals who experience sudden disability resulting from stroke or spinal cord injury (SCI) late in life and those who experience a more gradual decline in function associated with the cumulative effects of multiple health conditions (eg, osteoarthritis, diabetic complications, complications from cardiovascular or pulmonary disease). At the same time, those growing older with long-standing, early-onset disabilities (such as polio and multiple sclerosis) are said to age with disability. In fact, owing to improvements in the medical care and rehabilitation of persons with disabilities, individuals with physical disabilities acquired in early adulthood are now living a near normal life expectancy, and this group is representing more and more of the older adult population. These individuals also face a unique array of stressors. For example, there is evidence that the organ systems of persons with physical disabilities age faster than in their nondisabled peers, and that this increase in aging rate results in faster and more severe onset of health conditions (such as heart disease and obesity), mobility limitations, perceived symptoms (such as pain and fatigue), and other secondary conditions (such as depression). These secondary conditions can have profound negative effects on the quality of life, including community participation and employment.
Individuals aging with disabilities and those aging into disability may therefore ultimately arrive at similar places in terms of physical functioning, but take vastly different routes to get there. These individuals vary in terms of age at disability onset (including whether this disability was on time or off time in terms of expectation), age cohort (including the available medical treatments and the social environment at the time of disability onset), biologic age (because long-standing disabilities are often associated with early organ decline), and duration of disability (which includes the sum of experiences an individual has acquired in terms of managing disability). In a sense, older adults with long-standing disabilities (ie, those aging with disability) may have much to teach their age cohort in terms of coping with declines in physical functioning and generally getting around as a disabled person. Despite this, although a large body of research has now investigated a range of topics within aging into disability, little attention has been paid to older adults with long-standing physical impairments.
Although it is increasingly clear that the fields of social gerontology and disability services research have considerable overlap, the research and service networks of these groups typically have been fragmented and loosely organized. In disability research, investigators have focused on describing disabilities in certain specific age groups (eg, children or the very old) and have focused on cross-sectional methodologies with short time frames. On the other hand, gerontologists are interested primarily in understanding the experience of older adults, which includes (but is not limited to) disability. Neither group has traditionally emphasized that age and disability are trajectories that interact across time, requiring research that looks forward for children with disability and looks back for older adults with new impairments.
The purpose of this article is to tackle this disconnection from the perspective of the disability services researcher, by providing researchers and clinicians working in this area with a primer in aging and gerontology as they relate to disability. By doing so, the authors hope to provide some tools to better understand the complex interaction of biologic, social, and psychological factors for older adults living with long-term and newly acquired disabilities.
To accomplish this, this article first describes the social environment of the older adult, with an emphasis on social support, grief, and bereavement. There follows a discussion on the primary theories on aging, with special relevance to aging with disability, including a review of what is known about coping with chronic illness in older individuals. Finally, the authors use these theoretical approaches to confront an important (and on the surface puzzling) finding in aging and disabilities literatures, which is the reported high quality of life in the context of poor physical function and decline.
Social support, bereavement, and the older adult
Human beings are social creatures, and having a group of people who can consistently provide reciprocal emotional and tangible support is an essential part of quality of life. Although the desire for meaningful relationships does not appear to change with age, the availability and flexibility of the available network does.
Changes in social support network size and organization are one of the best-documented effects in the aging literature. However, although younger people are more likely to have larger social support networks than older adults, it is important to remember that among older people, quality is more important than quantity in terms of preserving well-being. Although earlier work in this area tended to emphasize an involuntary decrease in social network size due to the loss of loved ones and isolation associated with physical decline, more recent work has proposed that older adults may also intentionally restructure and downsize their social support networks, such that there is an age-related decrease in the number of peripheral social partners, while the number of close social partners remains essentially stable throughout the life span. Essentially, older adults appear to be more selective in their choice of social partners, and prefer to be with people who are like themselves and who provide information that is consistent with their beliefs.
This process of downsizing is most pronounced from early to middle adulthood, suggesting that (contrary to popular belief) whatever emotional distress may exist in later adulthood is not clearly related to involuntary changes in social support. Rather, as people grow older they become more aware of mortality and reductions in time left, and appear to become increasingly thoughtful about who they want to spend their time with. In support of this hypothesis, recent studies have shown that social selection is influenced by perception of time restraint. For example, in one series of studies, participants of all ages were asked to imagine that they had half an hour of free time with no pressing time commitments and that they had decided to spend that time with another person. The subjects were given 3 potential choices: a close family member (ie, an emotionally close connection), an acquaintance with whom they seem to have much in common (ie, a potential new social partner), or the author of a book they had just read (ie, a novel and exciting social partner). Older adults were more likely to prefer the familiar social partner, whereas younger adults showed no preference. This finding has also been shown to generalize in samples of adults in China, Hong Kong, and Taiwan. Importantly, these effects disappeared when all participants experienced a sense of foreshortened future (ie, when they were asked to imagine that they would soon be moving across the country); individuals of all ages preferred an emotionally close partner (a family member) to novel or potential social partners.
Gender differences are also well documented in older adult social support networks, with women tending to have larger networks and being more likely to receive support from multiple sources. Across the life span, women tend to base friendships on intimacy resulting from emotional sharing, whereas men tend to base friendships on shared activities.
In summary, normally aging older adults appear to change their social networks through an intentional process and have networks typified by fewer members, but greater emotional closeness to social partners. Moreover, networks based on emotional intimacy are associated with greater social satisfaction, more frequent exchanges of tenderness, and less loneliness.
Although the kind of social network trimming described earlier does not appear to be a function of involuntary factors (such as the death of friends), it does leave older adults at greater risk for absorbing tremendous social support losses when a member of this (now smaller) social support network passes away. Thus, bereavement is a real issue for older persons. Over the age of 65, 51% of women and 13.6% of men in the United States have been widowed at least once. Although grief reactions in older adults tend to be more flat or subdued, particularly if the partner died of an illness that was lingering, there is little evidence to suggest that the loss of a partner is less distressing for the elderly compared with younger adults. In fact, normal bereavement is associated with a broad range of poor outcomes in the elderly, including chronically decreased mood, increased use of prescription medicine, greater likelihood of being placed in a nursing home, and even risk of mortality. One famous set of studies from 1988 to 1989 followed 503 elderly men for 6 years after the loss of their spouses, and found that the death rate for widowers over the age of 75 years was significantly higher than for their same-aged, nonbereaved peers. In addition to the painful loss of the loved person, a bereaved individual also loses an important source of interaction and tangible support. Perhaps because these losses can be so impacting, the remaining social network of bereaved older adults appears to take on greater importance at the time of bereavement. Given that many older adults reduce their social network to a few key friends, the remaining social support structures can become strained, leaving older adults at risk for social isolation.
The social support network in older adults living with physical disability
Individuals who are aging with or into disability have unique social support needs. Although little research has been done in this area, the general literature on disability documents the importance of social support in fulfilling a range of important needs. These include providing instrumental help (physical assistance such as help with meal preparation, bowel or bladder management, transfers), emotional support, anxiety reduction through empathic interactions, and a measure for progress and comparison to others. Furthermore, the literature on individuals with long-standing disabilities such as SCI emphasize the importance of the disabled person’s spouse in fulfilling many of these needs, often to the exclusion of other forms of support. For example, in one study by Decker and colleagues, 41% of the sample with SCI reported only a single source of support, and that support was a spouse. Research has also found that individuals with disabilities, such as SCI, are more likely to remain unmarried after injury and have higher than average divorce rates (eg, 21.2% compared with 12.6% in the general population). Therefore, individuals aging with disabilities can face several interrelated problems in terms of social support; they are more likely to be unmarried or divorced because of their disability, and for those with a spouse, they are more likely to rely on that person exclusively for care. In terms of aging, this latter tendency leaves individuals with disabilities vulnerable to losing virtually all of their tangible support networks when their spouses develop age-related health problems or pass away.
In a series of focus groups involving disabled older adults conducted by the authors’ research team, social support emerged as a key factor in qualitative analyses (Yorkston and colleagues, unpublished data, 2009). As expected, the participants in this study often referred to the aging of their own social support network. For example, one participant (with post-polio syndrome) had a husband who had developed advanced Parkinson disease, and this had a dramatic effect on his ability to care for her. Another man (with SCI) reported: “As I’m getting older, so is my spouse and my friends. Every friend I have lives upstairs and they haul you up the steps. They’re getting older and they have their aches and pains and say, ‘My back’s out, I can’t help’.” Individuals with long-standing disabilities may also feel frustrated by friends and family who are now developing their own limitations, and are working to “push through” them. A comparison process may begin, in which those with more normative limitations (ie, those aging into disability) may misunderstand disability resulting from conditions such as multiple sclerosis or post-polio syndrome, and put unfair expectations on the aging disabled person. Normally aging individuals may not understand that issues such as fatigue, memory problems, and chronic pain are subjectively different for individuals with a long-standing disability. One participant in the authors’ group described this process of comparison by saying, “You’re doing things they want you to do, maybe not as much, maybe not as often, but they don’t quite understand the fatigue and the fact that the pain is always there”. From these qualitative data and published studies, it would seem that the normal trimming process of aging intersects with increasing disability for these individuals, such that social support may be more limited, more vulnerable, and at times more stressful for the adult aging with disability. However, there are to date virtually no quantitative studies investigating this area.
The social support network in older adults living with physical disability
Individuals who are aging with or into disability have unique social support needs. Although little research has been done in this area, the general literature on disability documents the importance of social support in fulfilling a range of important needs. These include providing instrumental help (physical assistance such as help with meal preparation, bowel or bladder management, transfers), emotional support, anxiety reduction through empathic interactions, and a measure for progress and comparison to others. Furthermore, the literature on individuals with long-standing disabilities such as SCI emphasize the importance of the disabled person’s spouse in fulfilling many of these needs, often to the exclusion of other forms of support. For example, in one study by Decker and colleagues, 41% of the sample with SCI reported only a single source of support, and that support was a spouse. Research has also found that individuals with disabilities, such as SCI, are more likely to remain unmarried after injury and have higher than average divorce rates (eg, 21.2% compared with 12.6% in the general population). Therefore, individuals aging with disabilities can face several interrelated problems in terms of social support; they are more likely to be unmarried or divorced because of their disability, and for those with a spouse, they are more likely to rely on that person exclusively for care. In terms of aging, this latter tendency leaves individuals with disabilities vulnerable to losing virtually all of their tangible support networks when their spouses develop age-related health problems or pass away.
In a series of focus groups involving disabled older adults conducted by the authors’ research team, social support emerged as a key factor in qualitative analyses (Yorkston and colleagues, unpublished data, 2009). As expected, the participants in this study often referred to the aging of their own social support network. For example, one participant (with post-polio syndrome) had a husband who had developed advanced Parkinson disease, and this had a dramatic effect on his ability to care for her. Another man (with SCI) reported: “As I’m getting older, so is my spouse and my friends. Every friend I have lives upstairs and they haul you up the steps. They’re getting older and they have their aches and pains and say, ‘My back’s out, I can’t help’.” Individuals with long-standing disabilities may also feel frustrated by friends and family who are now developing their own limitations, and are working to “push through” them. A comparison process may begin, in which those with more normative limitations (ie, those aging into disability) may misunderstand disability resulting from conditions such as multiple sclerosis or post-polio syndrome, and put unfair expectations on the aging disabled person. Normally aging individuals may not understand that issues such as fatigue, memory problems, and chronic pain are subjectively different for individuals with a long-standing disability. One participant in the authors’ group described this process of comparison by saying, “You’re doing things they want you to do, maybe not as much, maybe not as often, but they don’t quite understand the fatigue and the fact that the pain is always there”. From these qualitative data and published studies, it would seem that the normal trimming process of aging intersects with increasing disability for these individuals, such that social support may be more limited, more vulnerable, and at times more stressful for the adult aging with disability. However, there are to date virtually no quantitative studies investigating this area.
Theoretical perspectives
The Life Span Developmental Approach
Perhaps the most dominant theoretical model of aging in contemporary Western thought is the life span developmental approach, a theoretical orientation of aging that is concerned with the description, explanation, and modification (optimization) of developmental processes in the human life course from conception to death. This theoretical orientation was based on early work of several investigators, including Carl Jung, but really took shape after the coinciding publication of several important longitudinal aging studies that began before World War II and the resulting inception of gerontology in the 1950s. This orientation provides a biopsychosocial framework for understanding the aging process, and is often described as a counter model to more traditional approaches based on loss, decline, and the abnormal psychology of aging.
In brief, the life span developmental approach proposes that development occurs throughout the life span, and not just during the formative years of childhood and adolescence. Individuals are seen as continually making adaptations to changing external demands, including (but not only to) physical and mental decline. As a result, the magnitude of individual differences and the variability of functioning are seen to be greatest during infancy and then again in older age. The life span developmental model also emphasizes the interaction of biologic, social, and psychological factors, and takes into account the influence of cohort effects (ie, the impact of shared experiences that occurred at a set point of time and during a particular period of development for a group of people).
In the life span developmental perspective the following propositions about the nature of human aging have been described:
- 1.
There are major differences between normal, pathologic, and optimal aging, the latter defined as aging under development-enhancing and age-friendly environmental conditions.
- 2.
The course of aging shows much interindividual variability.
- 3.
There is much latent reserve capacity in old age.
- 4.
There is aging loss in the range of reserve capacity or adaptability.
- 5.
Individual and social knowledge can compensate for age-related decline in fluid intelligence.
- 6.
With age, the balance between gains and losses becomes increasingly negative.
- 7.
The self in old age remains a resilient system of coping and maintaining integrity.
Key to the life span developmental model are 2 concepts: successful aging and the notion of on-time/off-time events. Successful aging in itself is thought to involve 3 elements: (1) selection, or an increasing restriction of one’s life to fewer domains of functioning due to of age-related losses in adaptability; (2) optimization, or the engaging in behavior that enrich and augment life; and (3) compensation, or the use of adaptive behaviors to compensate for losses in functioning. Therefore, one can be seen to have aged successfully when one is able to continue to perform life tasks that are personally meaningful and important despite decreases in skills, memory, and performance. On-time/off-time events refer to the sequence of experienced life events as compared with individual expectations. For example, if an event occurs at a time or at an age that is considered normal for most people, then it is on time. A woman giving birth to children in her late twenties is an example of an on-time event. Alternately, events are considered off time when they occur out of the expected sequence or at a time or chronologic age that is unusual; the same woman giving birth to children in her late forties might be considered off time. Importantly, the use of the terms on and off do not imply that being different from the expected time schedule is “good” or “bad”, merely that these events have unique impacts on the psychosocial trajectory of aging based on when in the life span they occur. It has been suggested, for example, that older adults are less bothered by physical health problems such as chronic pain if they perceive them as occurring on time or being normal.
Clearly, the orientation or model described earlier was developed in normally aging individuals, including those aging into disability, and has rarely been applied to adults aging with disabilities acquired in young adulthood. For these individuals, physical impairments and limitations have occurred off time with expectation. Although difficulties in ambulation might seem normal (and be therefore less threatening) in an 80-year-old individual, the same impairments are not expected to occur in a person’s thirties and forties. The effect of this off-time disability is not well studied. Does having significant physical limitations in younger adulthood inoculate or prepare one for the kinds of limitations that are inevitable in later life? Successful aging is said to occur when an individual is able to compensate for limitations in losses of functioning, actively selects activities that are within his or her realm of abilities, and actively seeks behaviors that enrich quality of life. Clearly, these same processes are present in younger and middle-aged adults facing disabilities. If that is the case, are these individuals better prepared for later adulthood? If so, then the trajectory of adults aging with disabilities would likely include stable or increasing quality of life despite rapid declines in functioning, and this would be greater than would occur in adults aging into disability. However, little research has applied this well-known aging model to adults with disabilities.
Socioemotional Selectivity Theory
A second major model designed to account for age-related changes in social support, coping, and engagement is socioemotional selectivity theory (SST). SST posits that with increasing age, perceived limitations on time lead to reorganizations of goal hierarchies, such that goals related to here-and-now emotional meaning are prioritized more than goals associated with an improved future. Generally speaking, individuals are guided by the same set of social and emotional goals throughout life, such as feeling needed, seeking novelty, and expanding one’s horizons. However, the relative importance of these goals changes as a function of perceived time left to live. For those with decades ahead of them, goals aimed at knowledge acquisition, career planning, the development of new social relationships, and other endeavors that will pay off in the future are adaptive. On the other hand, for older adults (or those who perceive little time left) it is thought to be more adaptive to emphasize the positive emotional aspects of here-and-now situations and to prioritize emotion-focused strategies more than problem-focused strategies. Older adults are hypothesized to therefore focus more on emotion regulation, on the pursuit of emotionally gratifying interactions with social partners, and other pursuits whose benefits can be realized in the present. These individuals will emphasize alleviation of present suffering to maximize emotionally meaningful activities, including quality time with loved ones.
According to SST, it is time perspective (ie, perceived time left as an independent being), rather than actual chronologic age, that drives this reorganization. In fact, in several studies of younger people with presumably limited futures (eg, young males with symptomatic HIV infections), a reorganization of goals similar to that seen in older people occurs. Additional support of SST comes from studies that have shown that older adults have a distinctive bias in attention and memory, such that older people attend to and remember positive information more than negative information.
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