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How to Find Support Groups for Those With Early-Onset Alzheimer's
Written by Alissa Sauer
about the author
3 minute readLast updated April 21, 2023
An early-onset Alzheimer’s diagnosis can be devastating for everyone involved. Many people think of dementia as a condition that only seniors face, but it can affect people of all ages. While some diagnoses occur as early as 30, most happen once a person is in their 50s or early 60s. Someone diagnosed with early-onset dementia may still be working their job, raising a family, serving their community, and more. Support groups dedicated to those with early-onset Alzheimer’s can help families cope.
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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.”
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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. TheAlzheimer’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.
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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.Recommended For You
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