Volunteering as Therapy for Individuals with Dementia of the Alzheimer’s Type
The following post is a lengthy exposition on a possible link between volunteering and Alzheimer’s disease. This post is more social psychology then neuroscience (actually, it has very little to do with neuroscience). I am not asserting that volunteering can be a useful therapy for someone with Alzheimer’s disease, rather I am making the case that there is enough evidence for research to be conducted along those lines. In other words, I see a need for someone to research whether or not volunteering is beneficial for people with Alzheimer’s disease.
Alzheimer’s disease (AD) is a serious condition that affects an estimated four million people in the United States. Most of these people are over the age 65, since the risk of developing AD increases with age. It is also estimated that there are currently over 400 thousand new cases of AD each year in the United States alone (Rodgers, 2002). The prevalence rate of Dementia of the Alzheimer’s Type (DAT), according to the Diagnostic and statistical manual of mental disorders–fourth edition (DSM-IV) is “between 2% and 4% of the population over the age 65 years…[and] the prevalence increases with increasing age, particularly after age 75 years” (American Psychological Association [APA], 1994). (In this post, the terms AD and DAT are used as interchange terms, even though DAT is the Axis I code and AD is the Axis III code in the DSM–IV. This is done because most articles about Alzheimer’s use the term “AD” in lieu of “DAT”). For this post, I will first give the DSM-IV diagnostic criteria for DAT. Then, I will discuss the effects of that volunteering has on older people. I will also provide some background theories about why volunteering has the effects that it does. Next, I will make the connection between AD and voluntarism.
DSM-IV Criteria for DAT
There are six main criteria associated with DAT as found in the DSM-IV. The first is:
“The development of multiple cognitive deficits manifested by both (1) memory impairment (impaired ability to learn new information or to recall previously learned information) [and] (2) one (or more) of the following cognitive disturbances: (a) aphasia (language disturbance), (b) apraxia (impaired ability to carry out motor activities despite intact motor function), (c) agnosia (failure to recognize or identify objects despite intact sensory function), (d) disturbance in executive functioning (i.e., planning, organizing, sequencing, abstracting)” (APA, 1994, p. 142).
So, there needs to be pervasive cognitive deficits, beyond what would be expected from normal aging. Memory, and mainly the ability to store new memories, usually is the most affected component of life, at least at first. This memory problem correlates with the shrinkage of the hippocampus, which is implicated in memory formation. The second criterion is: “The cognitive deficits in Criteria A1 and A2 each cause significant impairment in social or occupational functioning and represent a significant decline from a previous level of functioning” (APA, 1994, p. 142).
The third criterion is that the dementia has a “gradual onset and [a] continuing cognitive decline” (APA, 1994, p. 142). The next criterion is that the dementia is not a result of other medical conditions. Further, the dementia must not happen solely during a delirious state and it cannot be better explained by some other Axis I disorder. Any onset of DAT before age 65 is coded as early onset and anything after 65 is late onset. There are also four levels under each onset code: with delirium, with delusions, with depressed mood, or uncomplicated (APA, p. 143).
Since AD is a very severe and impairing condition, it is important to research its underlying causes and thus be able to understand possible cures. Further, it is important to increase the quality of life of those afflicted with AD. This is done increasingly through pharmaceuticals; however, psychosocial therapies should not be neglected.
There are a number of biological changes associated with AD: the formation of amyloid plaques, neurofibrillary tangles, and the atrophy of certain brain areas. There are also some enzymes and neurotransmitters implicated in AD, however, causal time-order relationships have not been established between the disease and the chemicals. The drugs available for people with AD are not effective for very long and do not cure AD (Rodgers, 2002). While medical research on AD is important, it is not the focus of this post. I will first explore the effectiveness of volunteering as a psychosocial therapy for DAT.
Extensive background research into the topic yielded no results on the effects of volunteering on DAT patients; however, there is numerous research on the effects of volunteering on aged people and so this paper will make the connection between Alzheimer’s and volunteering. First, I will explore how volunteering is beneficial to people and then I will discuss different theories of why it is beneficial to older people. Then, I will make the association between current volunteering research and DAT.
Effects of Volunteering
Numerous studies demonstrate the positive effects that volunteering has on the well-being of older Americans (e.g., Morrow-Howell, Hinterlong, Rozario, & Tang, 2003; Musick, Herzog, & House, 1999; Van Willigen, 2000; Krause, Herzog, & Baker, 1992; Young & Glasgow, 1998; Thoits & Hewitt, 2001). In this paper, the term “older Americans (or people)” is limited to people than 65 years of age or greater. Also, volunteer work or service was defined by the President’s Task Force on Private Sector Initiatives as:
“The voluntary giving of time and talents to deliver services or perform tasks with no direct financial compensation expected. Volunteering includes the participation of citizens in the direct delivery of service to others; citizen action groups; advocacy for causes, groups, or individuals; participation in the governance of both private and public agencies; self-help and mutual aid endeavors; and a broad range of informal helping activities” (as cited in Thoits & Hewitt, 2001, p. 116).
Volunteer work includes everything from informal helping to working for formal national organizations. Most studies do not differentiate between various forms of volunteering, whether formal (e.g., being a member of the rotary club) or informal (e.g., raking the neighbor’s leaves or taking cookies to people), so I will not make the differentiation. What is important to this research is that volunteering is doing things for others without expectation of monetary reward. One study about volunteering by Young and Glasgow (1998) showed that instrumental social participation (which includes volunteering and is community-oriented rather than self-oriented) was a good positive predictor for perceived health in both women and men. This means that those who participate in voluntary social settings, including volunteering, have higher perceived health. Perceived, or self-rated, health is a statistically significant predictor of mortality (Young & Glasgow). If perceived health is high, then the rate of mortality is low. Therefore, people who are more involved socially tend to have higher health as a result. This study did not limit social participation just to volunteering so there could be other mediating effects between volunteering and increased health. However, other studies demonstrate the link between volunteering and enhanced health and longer life.
Musick, Herzog, and House (1999), found that older Americans who volunteered during the past year had lower mortality rates than their non-volunteering peers. This means that people who volunteer tend to be living longer than those who do not volunteer. This pattern is curvilinear, though; the strongest effects were for people who volunteered less than forty hours per year or for only one organization. The authors controlled for social integration, physical activity, health, sex, race, age, education, and household income and found that volunteering still had an effect on mortality rate after all these factors were controlled. This demonstrates that volunteering, when it is done in moderation, has a protective effect on life. In other words, the authors established that volunteering does provide some buffer against death and helps people live longer. Too much volunteering does lead to decreased benefits and even can be detrimental to health. I will discuss the theories about why this happens later.
Van Willigen (2000) studied the effects that volunteering has across the life course. She found that “older adults who did not volunteer reported significantly worse health than did their volunteering counterparts in 1986 and 1989…. Senior volunteers also reported higher levels of life satisfaction than nonvolunteers at both time points, although the difference was only significant at Time 2” (p. S312). Further, Van Willigen’s research indicates that volunteering always is positively correlated with self-perceived health and life satisfaction among older Americans. She also found that volunteers who volunteered for more than one organization had increased health and life satisfaction compared to those who volunteered for only one organization. Similarly to the results other researchers found (e.g., Musick, Herzog, and House, 1999), the benefits for older adults (but not for younger) who volunteer decreased “after 100 hours per year” (Van Willigen, p. S313). Because a majority of older people volunteer for religious organizations, Van Willigen wanted to see if the increases in health were due merely to religious participation. She discovered that the increase in health and life satisfaction is not due to religious attendance alone, that volunteering has benefits above what religious participation has. “Church-based voluntarism” is “the most psychologically beneficial type of volunteer work” (Van Willigen, p. S317) though. The author also controlled for physical activity and found that volunteering explained the increased health beyond what the physical exertion associated with volunteering did.
Moen, Dempster-McClain, and Williams (1992) used data from a 1956 study and a follow-up one in 1986 to study what affected successful aging for women. They define successful aging as “living both healthy and active, involved lives” (p.1633). The authors found that “social participation, as members of clubs or organizations or as unpaid, volunteer workers, seems especially conducive to subsequent health and integration;” and further that “participation in volunteer work, intermittently or at any time in adulthood, not the duration of volunteering, is what seems to matter for successful aging. And labor-force participation, while conducive to multiple-role occupancy later in life, does not appear to promote subsequent health” (p.1633). So for older women at least, what seems important in promoting subjective healthy living, is volunteering regardless of amount.
In another study, Morrow-Howell et al. (2003) found that nearly 35% of people over the age of 60 volunteer, with the average time spent per year at about 70 hours. Like other researchers, Morrow-Howell et al. found that volunteering more than 100 hours per year actually reduced the positive benefits of volunteering. Also, the authors discovered that volunteering had similar effects for males and females, which extends the findings of Moen et al. (1992) to men. Further, there appeared to be no difference in the effects of volunteering between non-Whites and Whites (Morrow-Howell et al.). Therefore, there are no significant differences for the effects of volunteering between gender and race. In order to age successfully (psychologically and physically) volunteer work is an important part of life.
Ward (1979) studied if volunteering for meaningful reasons (e.g., pure altruism or just helping others without even the thought of doing good) was more beneficial than volunteering or participating in social groups merely for the company or for self-benefit. While he did not establish a time-order causal relationship, Ward found that people with worse health or lower socioeconomic status had less “meaningful” group participation (p. 443). This demonstrates some sort of connection between meaningful group participation and health, although again, the author did not determine what caused what. In other words, people who volunteer for “meaningful” reasons (i.e. the ones who find meaning in their volunteering), rather than self-centered ones, tend to have higher health than those who are not as selfless. If these results are combined with those from the other studies, it can be demonstrated that not only does volunteering increase psychological and physical well-being—it also can add meaning to life, which is an important part of aging well.
Now I will explore the theoretical foundation for the findings of these research studies of why voluntarism helps increase the well-being of older people. One of the most prominent theories is role theory. Role theorists have shown that feeling in control of life and having social power and prestige is associated with better health (Krause et al., 1992). With aging, adults tend to lose roles they had previously (e.g., jobs and children) and as a result feel less control over their lives and have less contact with others which causes their social networks to shrink. This in turn leads to poorer health. Role theory is divided into three components by Morrow-Howell et al. (2003). It “offers a useful perspective by suggesting that participation in volunteer roles will increase well-being outcomes  (role enhancement), at least up to a point  (role strain). However, we are in need of a more refined research agenda that seeks to understand the personal circumstances  (role context) and the nature of the volunteer experience that lead to the most positive outcomes” (Morrow-Howell, et al., p. S138). A discussion of each of the three components of role theory follows.
Krause, Herzog, and Baker (1992) explain the effects of volunteering by means of the theory of role enhancement: “There are at least three reasons why help-giving may promote the salubrious effects. First, the realization that one has helped an individual in need is a fulfilling and self-validating experience that can bolster feelings of psychological well-being…. In addition, giving aid to others fosters intimacy and trust, thereby strengthening existing social bonds…. Finally, giving support to significant others increases the probability that one’s own need for assistance will be met in the future” (p. P300). Further, Krause et al. state how volunteering fills the void created by role loss in later life. Morrow-Howell et al. (2003) also explain how role enhancement theory helps explain somewhat the effectiveness of volunteering: “In fact, evidence suggests that occupying the role versus not, that is, engagement versus no engagement, is related to well-being…. The role engagement associated with volunteering implies that programs and policies that bring older adults into volunteer roles, even at modest amounts of commitment, will be beneficial” (p. S142). So, according to role enhancement theory, volunteering increases the number and quality of social bonds and roles. As these roles are enhanced, then over-all well-being is increased. Therefore, if older adults volunteer, they are doing productive activities, as they were doing before they retired or when they had children at home. Their current roles are enhanced (with means greater prestige and power in their current state) and that affects their well-being. This works only up to a point, however.
A number of studies demonstrate a lessening of the positive benefits of volunteering after about 100 hours per year (Van Willigen, 2000; Morrow-Howell et al., 2003). William Goode (1960), a proponent of role strain theory, believes that role strain, or difficulty filling different social roles is an ineradicable part of life and the self (ego) must participate in a number of activities to lessen this strain as much as possible. Some of these devices include: compartmentalizing (separating and sorting out life into various distinct categories), delegating (passing on responsibility and roles to others), putting up barriers (defense mechanisms), and even elimination of relationships (Goode, 1960). People have limitations on what and how many social roles they can handle and still function well. So, if older adults volunteer too much then their roles become strained too much—they do not have enough energy (psychological and physical) to fill all of them, and their well-being starts to suffer. This conflict between roles is theorized to lead to lower health when some roles become overbearingly demanding. There are individual differences though, in what people can handle. This idea leads in to role context.
Even though researchers such as Musick, et al. (1999) and Van Willigen (2000) found that there is an optimal number of volunteer hours per year that is beneficial to older Americans, there is a slight discrepancy between their numbers: 40 hours versus 100 hours, respectively. Whatever the amount is, it is just an average and individuals will have different amounts they can handle. This is role context. People have different life experiences and different capabilities, including educational attainment, marital status, and age (Moen et al., 1992). These are considered different role contexts and so peoples’ performances need to be viewed in light of their personal context. This leads to the conclusion that volunteers may all find different benefits from volunteering (Morrow-Howell et al., 2003). Even though different activities may be beneficial to different people, overall, volunteering (which is often self-chosen activities and thus ones that an individual is interested in) appears to be beneficial to older Americans, regardless of context. The key is finding the right volunteer activity for each person; which just takes knowledge of what a person is interested in.
Volunteering and AD
Volunteering appears to be beneficial to older Americans in general but what about for AD patients specifically? Most people with AD are over the age 65 and so these research studies all apply to them as older Americans. The various studies I have reviewed all showed positive effects from volunteering regardless of health of the person volunteering. For example, Young and Glasgow (1998) showed that those who volunteer have better health than those who do not volunteer. They also demonstrated that not only do those with better health to start with volunteer more but also that volunteering further increases their health. Other studies also show that regardless of initial health, volunteering is beneficial (Morrow-Howell et al., 2003; Musick et al., 1999; Van Willigen, 2000). What may be most applicable for AD patients is what Morrow-Howell et al. (2003) found about volunteering and people with functional limitations. “In some exploratory analyses of other potential moderating conditions, we found that there was a significant interaction between volunteer status and previous measures of functional dependency (b = -.12, t = .3.10, p = .002); the same interaction existed for volunteer hours (b = -.0009, t = -2.20, p = .034). These findings suggest that volunteering may be more beneficial to older adults with functional limitations” (p. S143; emphasis added). Those with greater limitations on their abilities to function well may benefit more from volunteer work. A logical extension of this to people with DAT would be that they would greatly benefit (and maybe even more than older adults without DAT) due to their largely limited functioning.
People with AD start withdrawing from social relationships in the early stages of the disease. Their social functioning is limited and progressively deteriorates. This is generally true of older people but not to the extent that it is in people with AD. According to social theory, voluntarism is theorized as a way to increase social networks and that increase in turn leads to greater well-being. So, those in the early stages of DAT could greatly benefit from having the increased social networks and thus having enhanced social roles often associated with volunteering (cf. Morrow-Howell et al., 2003). Not only would voluntarism possibly help slow down the effects of AD, it could also be a beneficial therapy for those who are in advanced stages of the disease since volunteering appears to increase well-being and decrease mortality rates for all older adults (Krause et al., 1992; Musick et al., 1999).
There are some cautions in making these extensions of current research. Just as there appears to be an optimal amount of volunteering per year that is most beneficial (i.e. if someone volunteers too much it could actually be detrimental to her or his health) for old people in general, then there would be an optimal amount for people with AD. This may be lower or higher than for other people but is probably lower, since, especially in the advanced stages of AD, people with AD have severely limited functioning. Thus, they may receive role strain in greater amounts and sooner than people would without such limitations. This does not mean that volunteering is not beneficial to them; rather, it just means that their service work may need to be limited more than for others without AD.
Using volunteer work as a therapy would not replace other therapies like psychopharmacological and cognitive-behavioral therapies; however, it would be used in conjunction with these other therapies. The volunteer work should be tailored to what a DAT patient can handle. If the person with DAT is still living at home and is in the early stages of the disease, then it would be possible for him or her to participate in formal volunteer activities like working at a food bank or other similar activities. This would probably still need to be under the close supervision of someone else though. As the illness progresses the activities would need to change and become more informal, such as decorating cookies to take to others or comparable activities. If the DAT patient is living in an assisted-living facility, then the volunteer activities could be very informal, even having the person do things for other residents at the facility, such as drawing them a picture or helping make cookies for them. The key is having the DAT patient participate in altruistic activities that she or he is capable of doing without receiving too much role strain. Future research needs to be conducted about the effectiveness of volunteering as a therapy for people with DAT.
AD is a condition that affects millions of Americans and the numbers of people with the disease is expected to grow at an ever increasing rate. While medical interventions are providing some success, there is still a need for therapies to help increase the quality of life of those with AD. Psychosocial interventions may prove to be the most effective at this. Many studies show the positive effects that volunteering has on the health and overall well-being of older adults (e.g., Morrow-Howell, Hinterlong, Rozario, & Tang, 2003; Musick, Herzog, & House, 1999; Van Willigen, 2000; Krause, Herzog, & Baker, 1992; Young & Glasgow, 1998; Thoits & Hewitt, 2001). Role theory (i.e. that people’s lives are made up of different roles and that having various roles is associated with positive health) is the major foundation for most of these studies. DAT patients may also benefit physically and psychologically as well by participating in volunteer work. However, there is still need for further research into this area.
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