Alzheimer’s Support Groups

Caregivers Support Groups

I started leading a Spouses Caregiver's Support Group in 1985. I took a hiatus to complete my pre-doctoral and post-doctoral internships at Yale University School of Medicine, Department of Psychiatry and resumed them in 1992.  I added an Adult Children Caregiver's Support Group at that time.  In September of 2017, I stopped facilitating these support groups because I knew I was starting to burn out after 25 years as a support group leader.  I currently facilitate a group at Villa Gardens in Pasadena, but this is a closed support group, i.e., not open to the public.

Let me briefly give some suggestions to those who are looking for a Support Group.  If possible, make sure that the group is affiliated with the local Alzheimer's Association Chapter.  The Alzheimer's Association will have a directory of the types of dementia support groups under their affiliation.  The support group should be free, and the support group leaders should have attended the mandatory training programs and continuing education to claim membership with the Alzheimer's Association.  Also, I believe that it is essential that the leader has had personal experience in working with patients with dementia as well as their caregivers.  

It makes so much of a difference if the facilitator has or had a loved one with dementia.  He or she "gets it" having lived with and cared for someone who has dementia.  Beware of facilitators who spend all of the time talking about their own experience or allow one person to dominate a group session.  Before you join the support group spend some time on the phone with the group leader, so s/he has some background about you and the person with dementia.  It is also an opportunity for you to ask about the group and their experience working with caregivers and patients with dementia.

I also separated Spouses Caregivers Support Groups and Adult Children Caregivers Support Groups.  I did not have a combined group because the dynamics are so different as a spouse versus an adult child.  Spouses have spent literally a lifetime together, they are often soul mates and when a spouse cares for someone with dementia I believe it is the ultimate fulfillment of the couple’s promise “for better or for worse, and in sickness and in health.”  Spouses who are caregivers witness “the ongoing funeral” or “the long goodbye” more intensely because of the time they spend with their demented spouse.

Adult Children Caregivers are usually the daughter(s) within the family.  They will have their parent move in with them if s/he is widowed.  If the parent is placed it is often the daughter who takes care of the placement, prescriptions, and bill paying.  She often will have Health Care Power of Attorney and Power of Attorney for Estate.  The dynamics within the Adult Children Support Group may include both parents one who suffers from dementia, but may also include dynamics between siblings.  Unless the caregiver is a single child, there is often at least one person who refuses to help with any aspect of caregiving including just visiting his or her parent.  When my Mom went into Assisted Living at the Catholic Care Center it was the last time that my oldest brother saw her until her funeral.  I would ask him over and over again and his classic response was:  “I just can’t go and see her in a nursing home!” 

Here is the link to Alzheimer's Association Support Groups: http://www.alz.org/apps/findus.asp

"The Alzheimer's Association addresses the needs of caregivers in vital ways, beginning with a special section on our website, the Alzheimer's and Dementia Caregiver Center (alz.org/care).  The site provides strategies and, tips and tools to help with all aspects of caregiving, including daily care, stages and behaviors, safety concerns, care options and planning for the future."  Source http://www.alz.org.