I once made a presentation at an Alzheimer's caregiver support group. One gentleman - let's call him John - had long insisted to his son and daughter-in-law that he didn't need any help from a support group (or any other source) to better deal with his wife's dementia. But somehow they had convinced him to attend anyway.
After my talk the participants began to share their feelings about the situation in which they found themselves. After a few minutes John spoke up. It was as if a fountain had been turned on. The words tumbled out ever so quickly as he talked about his true feelings and cried for the first time since his wife's diagnosis three years earlier.
After the meeting was over John came up and told me how helpful the group had been to him and that he was going to continue attending it. I have since heard from the group's facilitator that he hasn't missed a single meeting over the past year.
What Is a Support Group? A support group is a regular meeting (usually once a week or once a month) of people with the same illness or life situation (such as being a caregiver). Sometimes called a "Self Help" Group or a "Mutual Support" Group, it is not group therapy. Group therapy, led by a psychologist, social worker or other mental health professional, is a specific type of treatment for mental health problems that all members of the group have.
Support Group Formats: Some groups are structured and educational, bringing in speakers; in others the primary purpose is for members to share their feelings and experiences as well as give encouragement and practical advice to each other. Some groups meet in person, others meet online, and still others meet via phone.
Who Leads the Group? In some cases groups name their own leaders; other times a trained professional facilitates the meeting. Some Alzheimer's caregiver groups provide free care for the person being cared for so that caregivers can be free to attend the meetings.
Meeting 'Rules:' In most groups at least three rules are established. The first is that any information shared is confidential and not to be shared outside the group. Secondly, only one person is allowed to talk at a time. Finally, members are instructed not to be judgmental. An additional rule for caregiver support groups is that the focus is on the caregiver - not the person being cared for.
General Benefits of Support Groups: It can be helpful just to talk with other people who are in the same situation you are in. Although some people may not feel like speaking up, according to an article on the Area Agency on Aging website, it can be helpful just to listen in.
Specific Benefits: According to a Mayo Clinic website article, some benefits of participating in support groups include:
- Feeling less lonely, isolated or judged
- Gaining a sense of empowerment and control
- Improving your coping skills and sense of adjustment
- Talking openly and honestly about your feelings
- Reducing distress, depression or anxiety
- Developing a clearer understanding of what to expect with your situation
- Getting practical advice or information about treatment options
- Comparing notes about resources, such as doctors and alternative options
Reasons People May Avoid Support Groups: Some people have objections to attending a group. According to an article on the AARP website, the most common ones are: 1) They don't feel comfortable talking in front of a group, 2) They say they don't need outside help, and 3) They are so busy caring for their loved one that they don't have time to participate.
Let's look at each of these. As far as not feeling comfortable speaking, as stated above, it can be helpful just to listen to the discussion. With regard to not needing help, most people with this opinion who have attended a group have soon realized that - like John in my opening story - the experience turned out to be helpful after all. The issue of being too busy to attend can be mediated either by participating in a group that offers care for the care recipient or else by participating in an online support group.
I would add to the list of reasons people decline to participate in a group is that, in the case of online groups, people may believe that an online format could not be personal enough to be of help. However, research cited in the AARP article has shown that "online groups provide the same positive effects as in-person groups when it comes to emotional support and validation."
How to Find a Support Group: To find a support group ask your doctor, check with your friends or acquaintances who are Alzheimer's caregivers, or call your local Area Agency on Aging or your chapter of the Alzheimer's Association. You can also go to the Alzheimer's Association website (alz.org) and search for a group near you or sign up for one of the online support groups the Association operates.
A Word of Caution: Each group has its own 'personality,' depending on the personalities of the attendees and leader. If you attend a group and it doesn't seem helpful to you it would be wise to try a different one. Don't give up. You're likely to find one that meets your needs. Give it a try. It could make a significant improvement in your life.
Is anyone attending a support group? If so, is it helpful to you?
Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, available on Amazon. Her website, ComeBackEarlyToday.com, contains a wealth of information for Alzheimer's caregivers.