Support Groups for Those with Early Onset Alzheimer’s

An early onset Alzheimer’s disease diagnosis can be devastating for everyone involved. As more attention is brought to the disease by movies like “Still Alice,” we hope more awareness, funding and support will be given to those coping with this disease.Support Groups for Those with Early Onset Alzheimer's

Learn more about support groups available now, their benefits, and how to find one that can help you or a loved one.

Benefits of Support Groups for People with Early Onset Alzheimer’s

Of the five million people diagnosed in the United States, an estimated 5% have early onset Alzheimer’s with symptoms occurring before the age of 65. Early onset Alzheimer’s is rare enough that there are not many resources available for people struggling with the diagnosis. At the same time, the estimated 250,000 people living with the disease in the U.S. have great need for research funding, treatment options and more importantly, emotional and physical support.

Support groups are one way for people with early onset Alzheimer’s to find that they’re not alone. The group provides a unique support in that the people in it are experiencing the same things, often at the same time. They can openly share frustrations while also asserting some control over their memory loss.

In addition to sharing frustrations and grieving with others, people in support groups can share advice, victories and tips to living with dementia. They can discuss how they cope with forgetting the names of old friends, and how to handle daily living with early onset Alzheimer’s.

Alicia Seaver is the executive director at a memory care community, as well as a facilitator for early onset Alzheimer’s support groups. Ms. Seaver noted of the support groups that:

“It’s encouraging to see how thoughtful and empathetic participants are with each other. They are always quick to offer support, advice and reassurance, and I’ve found that while participants meet each other for the first time in the support group, they quickly go on to forge friendships that are active outside of the group.”

Finding Support Groups

When searching for support groups, consider whether a peer or a professionally led group would be a better fit. A peer led group is led by people who have also been diagnosed and are in the early stages of the disease, whereas a professionally led group has a highly trained person leading.

The Alzheimer’s Association has chapters throughout the U.S. that hosts support groups for people in all stages of Alzheimer’s, including younger people with early onset, as well as adult caregivers and even groups for children. They offer both professionally and peer led groups and all leaders receive training specific to the group he or she is leading.

In addition to support groups that meet in person, there are online communities that offer support in a forum setting. People can ask questions, share their experiences and give advice the same way as in a group setting, but there is a degree of anonymity as well as convenience.

In some cases, both an online group and an in person group may be beneficial to the person coping with a diagnosis.

Have you or a loved one experienced the benefits of a support group for Alzheimer’s? Share your story about your experience with us in the comments below.

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Please leave your thoughts and comments

  • Jeffrey Adler

    You leave no information about support groups for spouses or those suffering with a loved one under 47 diagnosed with Alzheimer’s and in end stages..

    I NEED YOUR HELP. YOU SAY IT IS THERE.. WHERE?? PLEASE GIVE ME SOME DIRECTION…PLEASE!!

    THANK YOU

    • Hear ya. Wife diagnosed at 54, now 58. Not much help for us EOAD CGs.

      • Canada111

        I am a woman diagnosed with early onset Alz in the New York City area. I received a diagnosis from neurologists at 2 major teaching hospitals. Yesterday I was rejected from the only early stage support groups in New York City- Caring Kind. The reason given was that because I can use a cell phone and a computer, my presence might be intimidating to those in the groups who can no longer use these devises, or can not even read or write. The person responsible for this decision was Lauren Volkmer, the director of programming. There is no recourse to appeal this decision. I am writing here to protest the lack of support that exists for people with early onset Alzheimer’s in general and in my case in New York City. I will aim to alert the board of directors of Caring Kind that there has been injustice committed against a person who has a diagnosis and is being denied access to support groups, by one individual in their hire.

    • Antproofcase

      Same here…the link there is for online support communities goes to an “a place for mom” retirement website. Not very well put together. Still looking for myself.

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