How to Find Support Groups for Those With Early-Onset Alzheimer’s

Last Updated: March 1, 2019

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

Learn more about early-onset Alzheimer’s, support groups for the disease that are available now and their benefits.

Early-Onset Alzheimer’s Support Groups and Their Benefits

Of more than five million people diagnosed with Alzheimer’s disease in the United States, an estimated 5% have early-onset Alzheimer’s with symptoms occurring before the age of 65. Unfortunately, early-onset Alzheimer’s is still rare enough that there are not many resources available for people struggling with the diagnosis.

Support groups are one way for people with early-onset Alzheimer’s and their caregivers to find that they’re not alone. Support groups allow caregivers and people with the disease to share frustrations and grieve with others, as well as share advice, tips and victories.

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 empathetic and thoughtful participants are with each other. They are always quick to offer advice, reassurance and support, 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.”

How to Find Alzheimer’s Support Groups

When searching for early-onset Alzheimer’s 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 peer-led and professional 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 in-person and online group may be beneficial to those coping with a diagnosis.

The Top 5 Alzheimer’s Caregiver Support Groups

These Alzheimer’s caregiver support groups can give assistance and comfort to those who are navigating early-onset Alzheimer’s caregiving responsibilities:

1. Alzheimer’s Association Local Support Groups

The Alzheimer’s Association offers these in-person support groups for caregivers and loved ones living with the disease. These support groups are facilitated by trained individuals and many offer groups that are specialized for caregivers, children, those coping with early-onset Alzheimer’s and other specialized needs.

2. Alzheimer’s Association Online Support Groups

The Alzheimer’s Association also hosts ALZConnected, a free online community where people who are living with Alzheimer’s, caregivers, family and friends can get advice, ask questions and find the help they need.

3. Alzheimer’s Foundation of America

The Alzheimer’s Foundation of America (AFA) has support groups for both caregivers and for people diagnosed with the disease. The caregiver support groups are free, weekly telephone-based groups that are facilitated by AFA’s licensed social workers and give caregivers a place to connect.

4. Family Caregiver Alliance CareJourney

The Family Caregiver Alliance (FCA) CareJourney is an online resource for family caregivers of adults with chronical cognitive or physical conditions like Alzheimer’s. It includes caregiver education resources, an e-newsletter and online support groups.

5. Memory People

Memory People is a closed Facebook group founded by Rick Phelps, who was diagnosed with early-onset Alzheimer’s at the age of 57. A Facebook awareness and support group, Memory People provides assistance, information and support around the clock.

Have you or a loved one experienced the benefits of a support group for early-onset Alzheimer’s? We’d like to hear your stories 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..



    • 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.

  • chris Erickson

    In 2007 My wife was diagnosed with Alz at the age of 57, I
    was 46,

    In 2009 she lost her job due to Memory loss she was there
    for over 25 years, she was a marketing director. For the last year I tried to
    help her organize her duties every morning as far as putting her notes in the
    right file. I also made notes for her to do for the day as far as calling
    future residents and what she needed to ask as far as questions. Her job was in
    a marketing department in a retirement community. We both worked there I worked
    for 8 years so I was familiar with Alzheimer’s and dealt with it daily for

    In 2011 I had to close my business I was struggling to keep
    it going. At that time it was basically 24/7 care giver. I did get help from
    the county as far as support to help pay for a companion so I could still coach
    hockey. Coaching hockey was a job as well as a thing that is and was very
    important to me and I have done for over 30 years.

    In 2013 I was told by her Dr to look for a Memory Care
    facility soon. This is where it gets difficult, I always thought and still do
    that it is up to 2 of us Vonnie and myself. I was going to take care of her as
    long as I could. If it got to the point where I was a detriment to her or too
    hard on me that is when I would make the move. We went through numerous medications;
    anger depression and sadness were very frequent visitors. It did get to the
    point where it was taking its toll on me, I could not sleep for fear of her
    getting up and falling or trying to leave. Placing her was a very hard decision
    (the hardest I have ever had to make) My sister helped find places and visited
    them for me and dwindled down the list and then I went to visit a few and found
    what I thought was the right fit. She lasted 5 months there and the community
    cut staff and their were billing issues but most importantly the staff was not
    as experienced as I had hoped. I had moved her to a different facility last
    April and am more satisfied with this place. The thing to think about is for
    all of you that are caregivers you know it is the hardest job you have ever
    done, when you think about it the aides in a MC have 6-10 residents during the
    day. Granted they do not have the emotional attachment that we do but some do. My
    opinion is most of them are saints just think what they deal with every day, it
    is not easy!

    I facilitate a group with Early Onset Alzheimer’s and one of
    the main things people ask about is the guilt. This is my feeling but I would
    imagine that most everyone that deals with this will feel it. I still to this
    day feel guilty and deep down I know in my heart that it got to be too much for
    me but it does not get any easier at least for me. I also know that she is in a
    good place and I am in constant contact with them and visit every day. I found
    a routine that worked for me as far as getting my time where she enjoyed me being
    there. One of the issues I dealt with in the beginning was the longer I stayed
    the more anxious she got and started to get nervous and want to come home with
    me so it was hard to go for only a hour a day but that worked best for her.

    In December of last year she went on Hospice she got very weak
    and was not eating like she should she lost 20 pounds in 2 months. I lost my
    dad to cancer and when her went on Hospice it was pretty much on schedule as to
    the next couple days leading up to his death. My thoughts and what I found out
    is Hospice with Alzheimer’s patients is so much different some people graduate
    so to speak off of it. But I tell you one thing from my experience is it is so
    nice to have her have the extra attention and eyes on her. She has gotten stronger
    in the last month and a half and maintained her weight the last to months.

    I have been told I am stubborn by a few people but one of
    the things I learned is it is too much to handle by yourself. Reach out for
    help support groups are out there, it
    makes me feel better to talk about it and it will for you as well. I am open to
    talk to anyone going through this to offer my help! It is a terrible disease
    for the loved one and also for the family I wish all of you going through this
    the best of luck!

    [Link Removed]

  • jill

    Yes. There is no information pertaining to support groups “specific” for early onset. Please advise. I am at jill m bedard g m a i l Thanks.

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