Alzheimer Disease Support Groups

I am a retired public school principal. I started observing my late wife’s symptoms of what would eventually be diagnosed as early or young-onset Alzheimer disease (AD) 15 years ago. There were many frustrations, especially about misdiagnoses for several years. As my wife was treated first for stress, then anxiety, and then depression, I continued seeing her AD symptoms worsen. Another frustration was that we were not informed about available support groups, which led me to become an advocate and share my frustrations in written publications.

In my first article, published in the American Journal of Alzheimer’s Disease and Other Dementias in 2010, I noted the need for doctors to be more helpful in finding support groups for their patients, “Doctors as well as local/national AD organizations should also be working together to provide patients with ready access to support groups as patients progress through the stages of this fatal disease—and helping to better meet the needs of those who are diagnosed at a young age and/or are in the very early stages of the disease.”¹

My Support Group Experience

At the time of my wife’s diagnosis, I could not find a single support group on Long Island specifically designed for those with early onset AD. I did find a group for people in early-to-moderate stages of AD, and my wife was accepted into that group. The Long Island Alzheimer’s and Dementia Center also had a support group for spouses of people with AD, but I didn’t think that I needed a support group at the time. I was so focused on my wife’s needs that I hadn’t yet begun to understand what my needs were, or would be, as her disease progressed.

My wife, however, insisted that she would only join her support group if I attended at least 1 meeting of the spouse’s support group. So, as she went to meet with her group, I went to what I thought would be my only meeting with the spouse’s support group. To my surprise, within minutes, I realized that group was where I needed to be. My wife’s insistence may have been her final gift to me because I don’t know how I would have coped during her illness without assistance from that spouse’s group. I was too naive back then to realize that support groups for AD care partners may be even more important than support groups for those with AD.

I learned more important practical and helpful information from members of the support group than from all the doctors we met, all the books I read, and all the internet searches I did. They helped me become a better care partner and learn how to deal with my own needs as my wife’s disease progressed.

Importantly, it was just blind luck that led me to my essential support group because the neurologist caring for my wife never mentioned how support groups might be helpful for either of us. Shortly after I joined the spouse’s support group, I asked everyone how they had learned about our group; out of 15 of us, only 1 had learned about our support group from a neurologist.

In another article I wrote that was published in 2011, I noted, “Some cities and some states have local and state associations that provide a multitude of support groups for both the patients, their spouses/caregivers and for non-spouse caregivers, often through branches of the Alzheimer’s Association, the Alzheimer’s Foundation, or hospitals. If there are such groups near where your patient and spouse live, please refer them to those groups or organizations. If not, please consider speaking with leaders of your state’s associations to have such groups formed. Also, become aware of the excellent online support groups available that you can recommend.”² Some resources for finding support groups are provided in the Box; you can use the QR code there to access a stand-alone version of this that you can print and share with your patients and their care partners.

Increase in Support Groups, But Not Neurology Referrals

Within 2 years, more support groups were forming on Long Island for people with various stages of AD and for their care partners, and more online groups were becoming available. Neurologists, however, were still not routinely discussing the existence and importance of support groups with their patients with AD or those patients’ care partners. In a 2013 article published in the Journal of the American Geriatrics Society , I wrote, “Doctors working with someone who is caring for a spouse, parent, grandparent, friend, or other family member with Alzheimer’s disease should urge them to join a support group. Let them know that they can learn many practical suggestions from those who have ‘been there’ and how important it is to have a place where they can talk openly about their feelings, fears, and concerns while receiving emotional support from others ‘who get it.’ Caregivers should not have to ‘go it alone’ when a loved one is declining from an incurable disease, but unless doctors inform them of the existence and value of support groups, many who would find emotional and practical help there will lose out on this wonderful source of information and comfort.”³

The increasing number of AD support groups on Long Island and elsewhere, both for people with AD and their care partners, is a sign of progress. However, neurologists are still not routinely referring patients and care partners to such groups.

For the past 2 years I have been a member of the Geriatric Emergency Care Applied Research Network 2.0 (GEAR 2.0) Task Force. GEAR is “a National Institutes of Health funded program working to advance the science supporting emergency care for people with dementia.”⁴ During many zoom meetings and online exchanges, care partners and people in early stages of AD have told me that their neurologists have not discussed support groups with them.

I have also had many interactions with AD care partners and people with early onset AD as a member of several AD research panels sponsored by the Center for Information and Study on Clinical Research Participation (CISCRP).⁵ Through this work, I have again been told many times by people with AD and care partners that neurologists are not routinely discussing the importance of support groups, let alone where to find such groups.

Research Supports Referral to Support Groups

Last summer, citing a 2015 study reported in the International Journal of Geriatric Psychiatry, medical writer Sherry Christiansen wrote: “Support group members often give each other tips on how to manage the various challenges that arise. Not only can Alzheimer’s support groups provide information, but studies have shown that they can help reduce depression and improve the quality of life and self-esteem for people with AD who have mild cognitive impairment (early Alzheimer’s), as well as those in the later stages of the disease (ie, Alzheimer’s dementia).”^6,7

According to the online “Caregiver’s Corner” section of the Fisher Center at Rockefeller University website, “Research shows that when family members and caregivers are educated about the disease and involved in the person’s care, the person who has Alzheimer’s benefits. When the family and caregiver of a person with Alzheimer’s understand the disease and learn how to communicate and interact with the person in ways appropriate to the disease stage, they are better able to reduce behavioral problems and improve the quality of life for all involved.”⁸

Conclusion

Support groups for patients with AD and their care partners can improve their quality of life, but many neurologists are not referring to support groups. This leaves patients and care partners without an essential part of treatment. I urge all neurologists to find out about support groups in their area and inform their patients not only of these groups’ existence, but also of how such groups can be helpful to their treatment. To do otherwise is to provide less than the best care.