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.
Learn more about early-onset Alzheimer’s, support groups for the disease that are available now 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.”
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.
These Alzheimer’s caregiver support groups can give assistance and comfort to those who are navigating early-onset Alzheimer’s caregiving responsibilities:
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.
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.
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.
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.
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.