By Robyn Yale, MSW, LCSW
Introduction
Most of what you read, hear, and think about Alzheimer’s disease (AD) typically focuses on the long-term course of the illness. In the early stages, however, people have only mild memory loss and confusion. While significant challenges arise, there are also many remaining capabilities. Now, a specialized support group program brings hope and help to individuals in the early stages of AD and their family members. These support groups teach people how to live, not how to die with AD — and help family members to grieve and go on.
People diagnosed early in the course of the disease rarely have opportunities to get their questions and concerns addressed. They often become isolated and stigmatized, even though they may be quite healthy and functional for a number of years. For example, while many can no longer work, they typically live at home, do their own personal care, and continue to enjoy many pleasurable activities.
Support Groups for Individuals With Alzheimer’s
In support groups, these individuals get information, share feelings, and experiences with others in a similar situation, and learn coping strategies — much like people facing any other illness. Issues in common include losing a driver’s license, adjusting to increasing dependency, and changes in relationships with family and friends. They also discuss what is going well in their lives, and how to maintain that for as long as possible. As one gentleman put it, “I want people to know — I’ve got a lot of life left!”
Support Groups for Family Members
Family members of those with early AD meet in a separate support group at the same time and location. They focus on caregiving issues unique to the beginning of the illness, such as restructuring household responsibilities and questioning when to assist the person with AD and when to encourage independence. Occasionally the concurrent support groups meet jointly, allowing all participants to interact together.
People with AD have reported an increased understanding and acceptance of memory loss, and improved mood and morale from the camaraderie of support groups. Family members report feeling less isolated, gaining knowledge about coping, and realizing the need for future planning that includes the person with the disease, which is no longer possible in its later stages. Additionally, caregivers learn about the range of services available throughout the course of the disease sooner than they might otherwise.
To join the group, people must be aware that they have AD and be willing and able to discuss their experiences. A careful screening process is recommended to select appropriate participants. In addition to the cognitive and social skills required for the group, an accurate diagnosis is important. Dementia refers to symptoms of confusion and memory loss, and may be caused by such treatable things as depression, vitamin deficiencies, or medication interactions. Only those with a progressive, irreversible dementia would be eligible for this support group, which in addition to AD may be caused by conditions like Parkinson’s disease and stroke.
Support Groups Led by Social Workers
While many self-help groups can be capably led by volunteers or paraprofessionals, this specialized support group is best led by professional social workers. The complex group dynamics, communication challenges, understanding of the disease, and discussion of intimate issues are most effectively facilitated by someone with experience in group work, dementia care and mental health. Licensed professionals or those with access to clinical supervision (as well as specialized orientation and training) are typically the most capable leaders of early stage support groups.
Some people may choose not to participate in support groups, so other early stage program models have developed, including cultural, recreational, educational, and vocational opportunities. This reflects the many ways in which a person with early AD has multidimensional needs and talents. Additionally, as people progress beyond the early stages of the disease, they can transition into day programs, which provide supervision and activities for those who are more impaired. Ideally, this transition is handled gradually, involving and continuing to respect the person with dementia, and offering ongoing support.
