Many people ranging from caregivers to friends and family of people with Alzheimer’s disease (or another type of dementia) find support groups to be a wonderful source of information, encouragement, and inspiration. In addition, those who have been recently diagnosed with dementia or are in the early stages of the disease find support groups helpful. With the advancement of technology there is more, easy access to support groups. They can be accessed in-person, virtually or on-line.
Local Alzheimer’s Association chapters and Area Agency on Aging (AAA) chapters generally are the coordinators of dementia support groups. Other organizations, such as the Huntington’s Disease Society of America (HDSA), Lewy Body Dementia Association (LBDA), and the Association for Frontotemporal Degeneration, also coordinate support groups. Such groups are free to attend and are usually held once or twice a month at nationwide community locations, such as churches, hospitals or even assisted living centers or senior centers. A group will usually meet for 1-2 hours. Caregiver support groups are usually organized and led by a moderator who first welcomes everyone and makes general announcements or distributes articles or information. Afterwards, each caregiver has the opportunity to introduce him/herself and to talk a little bit about his/her situation and their loved one with dementia. Caregivers are encouraged to discuss problems and frustrations, share positive experiences, and express their emotions, whether it be crying or laughing. Other group members will often offer suggestions or solutions and share similar stories. It can be very comforting to learn that you are not alone in your experience. Some caregivers may prefer to listen rather than share their story, which is also fine. Guest speakers may occasionally speak to a group, such as an ombudsman who will discuss legal issues or a nurse who will explain new medications for dementia. However, most caregivers find that the biggest benefit of attending a support group is sharing their story with people who “get it”, as well as receiving strong support and encouragement from other caregivers.
This is a hybrid model that mirrors in-person format. Done virtually, meetings are held on platforms like zoom. Meetings are held with moderators leading in a discussion that could be question based or lead from an email chain. While face-to-face support can be beneficial, this option is easily accessible only requiring internet. One can gain the same benefits of help and compassion but done easily without having to leave the house. This is an accessible tool that can easily offer support for someone who has less time, difficulty with transportation or wants a support group that they can attend from the comfort of their home.
The online community can vary in how much interaction is generated. It covers forums that offer a place for questions and answers by its community. It also includes chat rooms where people can have virtual discussions on a number of subjects and shared experiences. It even includes public and private Facebook groups. Online support groups are an option for more privacy so one can vent or to easily check in to know they are not alone in their journey with their loved one. Ranging from helpful and practical to inspirational or faith based, this venue can be easily accessed and covers all topics.
|Support Groups for Caregivers and/or People With Dementia|
|Name||How to Join||Description||How to Participate? In-Person, Virtual or Online|
|Dementia Care Central Forums||For more information, visit our virtual caregiver community.||The Dementia Care Central Virtual Caregiver Community includes a Message Board that allows caregivers to discuss their problems and concerns and receive feedback from their peers.||Online|
|LBDA Living with Lewy||For more information, please visit the Living with Lewy Facebook Support Group.||This support group is restricted to only those who have Lewy Body Dementia.||Online|
|Lewy Body Dementia Association Care Partner Facebook Support Group||For more information, please visit the Lewy Body Dementia Online Association Care Partner Support Group.
|This forum provides a place for caregivers of people with Lewy Body Dementia to receive support and share information.||Online|
|Lewy Body Dementia Caring Spouses Forum||For more information, please visit the LBD Caring Spouses website.||This forum provides a place for spouses of persons with Lewy Body Dementia or Parkinson’s Disease Dementia to support one another and share experiences.||Online|
|ALZConnected Online Message Boards||For more information, please visit ALZConnected||This message board offers thousands of posts on a variety of topics, including “I Have Alzheimer’s or Another Dementia” “Alzheimer’s under age 65,” “Caregivers Forum,” “Musings,” and others. There is also a section for discussion in Spanish.||Online|
|FCA Caregiver-online Support Group||For more information, please visit the Family Caregiver Alliance website.||This unmoderated forum is for relatives, spouses, and caregivers of persons with Alzheimer’s disease, strokes, and other serious health conditions.||Online & Virtual|
|alt.support.alzheimers||For more information, please visit the Alzheimer’s group website.||This newsgroup provides a forum for sharing information on all topics related to Alzheimer’s disease. New messages can be set to arrive to you directly in your inbox.||Online|
|AFA Live Chat||Alzheimer’s Foundation of America’s live chat.||This message board offers support, counsel, and education for caregivers through live chat with licensed social workers who are trained in dementia care.||Online|
|The FTD Support Forum||For more information, please visit The Association for Frontotemporal Degeneration FTD Support Forum website.||This forum is for persons with FTD and caregivers of persons with FTD to express their thoughts, concerns, triumphs, and to receive support.||Online|
|Alzheimer’s Association||Nationwide local information via 24/7 hotline (800-272-3900) or online search by clicking the link to their website||Alzheimer’s Association offers support groups for both patients and caregivers. Meetings are led by trained individuals virtually and in-person.||In-Person Nationwide & Virtual|
|Parkinson’s Foundation||Local information by searching their website||Nationwide local chapters & resources by searching their website||In-Person Nationwide|
|VA Caregiver Support Groups||Information available at local VA medical center or by calling 855-260-3274||VA founded the National Caregiver Support hotline and support groups for veterans and caregivers to speak with professionals.||In-Person Nationwide & Phone|
|Mental Health America||Information for all their programs and resources available on their website||Offer a wide variety of support options for addressing mental health with patients, caregivers and family members.||Online & In-Person Nationwide|
|Dementia Mentors||Information on how to connect with them on their website||Their goal is to help patients with dementia socialize through group memory cafes or one-on-one virtual meetings||Virtual & Online|
|Memory People||Link to Facebook group||This is a private facebook group that offers support and guidance for memory loss.||Online|
|Caring for Spouse with Dementia||Link to Facebook group||This is a private facebook group who focuses on caring for spouses’ with memory loss.||Online|
|Working Daughter||Link to Facebook group||This private group focuses on supporting the challenges of caregiving for a parent with dementia and balancing their daily life.||Online|
|Dementia Support Group||Link to Facebook group||Public Facebook group who posts a range of topics from articles about caring for a patient with dementia to tips and personal stories so you know you are not the only one trying to deal with a situation.||Online|
|Caregivers Connect||Link to Facebook group||Joins together all caregivers from professionals to family members through similar stories, support and advice.||Online|
|Caring for Elderly Parents||Link to Facebook group||Private group who offers a safe space to get support for caring for a parent though sharing and advice||Online|