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In Person & Online Support for Those with Dementia & Persons Providing Care

Last Updated: September 17, 2018

How Support Groups Work

Many caregivers, as well as friends and family, of persons with Alzheimer’s disease or another type of dementia find support groups to be a wonderful source of information, encouragement, and inspiration. In addition, many persons who have recently been diagnosed with dementia or are in the early stages of the disease, find support groups helpful. 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 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.

 

List of Online Support Groups

Online Support Groups for Caregivers of People With Dementia
Name How to Join Description
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.
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.
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.
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.

 

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.
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.
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.
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.

 

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.