Support Groups and Other Services for Individuals with Early-Stage Alzheimer's Disease

By Yale, Robyn | Generations, Fall 1999 | Go to article overview

Support Groups and Other Services for Individuals with Early-Stage Alzheimer's Disease


Yale, Robyn, Generations


Starting earlier, a range of programs that never existed before.

I want people to know -I've got a lot of life left. -Herm, age 72, a person with early-stage Alzheimer's disease

This is an exciting time in the field of Alzheimer's disease. There has been a significant shift in professional awareness and response to the mental health needs of the newly diagnosed person, an area that has traditionally been overlooked and underserved. At the beginning of the illness, people have not only challenges to face, but also many strengths and capabilities to use. A movement is under way to establish a service infrastructure, including support groups and other services for patients and families, starting earlier in the course of the disease and offering a range of programs that never existed before.

CHALLENGING THE STEREOTYPE

The prevailing stereotype of people with Alzheimer's portrays them as quite impaired and largely unable to think, feet, or communicate. Unfortunately, as the disease progresses, more and more abilities do become compromised. However, symptoms at the time of diagnosis vary from person to person, and the disease advances at a different rate for each individual. The terms early, middle, and late-stage Alzheimer's are commonly used to refer to mild, moderate, and severe impairment in Alzheimer's patients. These are not precise points in time, but rather constitute a continuum, with a range of functioning within each stage. People with early-stage Alzheimers are those of any age who are only mildly affected by symptoms of dementia. (People who have early-onset Alzheimer's are those who are younger than 65 at the onset of dementia.)

At the beginning of the illness, memory loss and confusion may be significant enough to cause disruption in day-to-day roles, relationships, and such activities as working at one's job. However, at this time, individuals have only mild cognitive and functional impairment, can often live in the community, care for themselves, be aware of what is happening to them, and communicate relatively well with others (Cohen, 1989; Goldstein et al., 1991). Perhaps this fact is one reason many people don't want to admit they have Alzheimer's-the stereotype of incapacity does not fit with how they see themselves.

While there is great individual variability@ many people seem to reach a plateau at this level of health and high functioning; for instance, some have been in support groups for people with early-stage Alzheimer's for as long as four years. There has traditionally been a huge service gap between the time of diagnosis and the time that other services like daycare and homecare are needed. Clinicians, people with Alzheimer's, and families have all become frustrated with it (Morhardt and Johnson, 1998). Many individuals with Alzheimer's become depressed due to isolation, awareness of declining abilities, and decreased self-esteem (Goldstein et al., iggi), and depression can cause "excess disability," which can be alleviated in some cases by antidepressants or psychotherapy (Cohen, 1989). Now, new medications with the potential of delaying disease progression are available, and the possibility of a future cure for Alzheimer's is on the horizon. However, current medications only work for some people and for a limited period of time, and other people do not want to take, cannot tolerate, or do not benefit from them. As with all other diseases, information and support must be an integral part of treatment, along with medication. Innovative new psychosocial, recreational, and educational interventions like those described below are critical.

THE ROLE OF SUPPORT GROUPS

In the early stages of Alzheimer's, some people cope by denying that they have any problems. However, many more people have been willing and able to express their feelings and concerns about having the illness, but have not had the opportunity to do so. Keady and Gilliard (1999) detail a process of transition in which people may move from awareness that something is wrong, through a period of secrecy, to the point of wanting to make sense of the symptoms they are experiencing. …

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