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Top Dementia Forums for Families and Caregivers

6 minute readLast updated August 19, 2024
Written by Kevin Ryan
fact checkedby
Tori Newhouse

Caring for someone living with dementia can prove both mentally and emotionally taxing. Dementia forums offer an outlet to express concerns and challenges caregivers often face, as well as connecting to others who can relate. Many popular dementia forums align with organizations providing resources on dementia caregiving and assistance to those living with the condition. Others were created by individuals affected by dementia and give support through discussion and advice.

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Key Takeaways

  1. Dementia forums provide caregivers a place to express concerns, share experiences, and receive advice from others who can relate to the stresses dementia brings.
  2. Social media platforms such as Facebook and Reddit offer support in easily accessible ways, like Facebook groups dedicated to dementia.
  3. Dementia forums differ in size and the type of support they provide, so be sure to explore and find the perfect one for you.

1. AgingCare

AgingCare offers support and information for caregivers on a variety of subjects while maintaining several sections of the forum dedicated to different stages of dementia. Posts are categorized in three easy-to-navigate tabs: “Recent Activity,” “Most Popular,” and “Needs Answers.” Users can read through questions and answers, and, when they are ready to create their own posts, signing up is easy. Responses usually come pretty quickly on this A Place for Mom-owned site.

2. Alz Connected

A resource provided by the Alzheimer’s Association, Alz Connected contains many dementia-related message boards. From its popular caregiver forum to a specific forum for discussions in Spanish, the platform offers numerous opportunities for caregivers, as well as individuals living with Alzheimer’s, to connect.

3. Mayo Clinic Dementia Support Group

The Mayo Clinic Dementia Support Group forum is comprised of more than 2,600 members and allows users to post after registering on the website. A single click is all it takes to begin a new discussion or contribute to an existing one, making it effortless to communicate with other caregivers. The board is also quite active, with conversations often receiving dozens of comprehensive responses.

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4. Dementia Care Central

Developed with funding from the National Institute on Aging (NIH), Dementia Care Central provides a wealth of information about dementia in a well-organized, easy-to-navigate format.[01] The forum section aims to give caregivers space to ask questions and share details of their unique circumstances. While many of the posts may be older, the discussions provide relevant perspectives on caregiver experiences.

5. Dementia Support Forum

A resource provided by the Alzheimer’s Society, the Dementia Support Forum offers three main forums, as well as an archive to view discussions that concluded years ago. The main forums consist of: Support from other members, Information and resources, and Alzheimer’s Society news, notices, and videos. Users are fairly active and include caregivers and people living with dementia. Note that the Alzheimer’s Society is based in the United Kingdom, so discussions that relate to the health care system and specific treatments may differ from what is available in the United States.

6. Dementia Unplugged

While not technically a dementia forum, this unique Facebook group allows users to support one another by thoughtfully discussing their experiences with dementia, posting questions, and requesting advice. It’s also connected to the Dementia Society of America’s monthly live online webcasts, which cover a variety of educational topics for individuals living with dementia, caregivers, and families.

7. Lewy Body Dementia Association

Affecting more than one million people in the United States, Lewy body dementia (LBD) is the second most progressive type of dementia after Alzheimer’s disease.[02] The Lewy Body Dementia Association offers several Facebook groups as forums for those caring for individuals with LBD. Users can access four different groups, after answering a few questions, that focus on both caregivers and those diagnosed with LBD:

  • Care Partner Support Group is a closed Facebook group reserved for caregivers or family members of individuals living with LBD.
  • Living with Lewy is a Facebook group for individuals living with LBD. The group asks that only individuals with a diagnosis or who expect a positive diagnosis join.
  • Living Together with Lewy is for individuals in the early stages of LBD and their caregivers.
  • Beyond Lewy is a private Facebook group designed to offer support to bereaved family and loved ones who lost a loved one to LBD.

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8. Memory People

This popular Facebook group has tens of thousands of members and was created by Rick Phelps, who was diagnosed with early-onset Alzheimer’s disease in 2010. Phelps started Memory People to provide an online space where individuals with dementia and their caregivers could go for connection and support. Anyone can join, and each member is asked to respect the list of post guidelines.

9. Dementia subreddit

Officially titled, “r/dementia,” this subreddit serves as a Reddit hub for information, support, and a space where users can share their experiences, whether it be on their computer or through the mobile app. The posts include anecdotes ranging from sad to humorous. In addition, users ask questions, offer advice, and share tributes to loved ones who passed away.

Finding the best dementia forum for you

Dementia forums consist of users who come from a diverse set of backgrounds and experiences. Finding a forum that fits your expectations may be a matter of trial and error. Consider reading through other peoples’ answers and questions before posting yourself. While maintaining openness can be beneficial when trying something new or engaging with people about a challenging topic, try to remain realistic and clear about your needs.

Forums can be a helpful resource for those navigating their role as a caregiver. However, if you feel your loved one living with dementia may require more care and support, consider reaching out to A Place for Mom. Our Senior Living Advisors can help you find a memory care community that best fits the needs of you and your loved one, all at no expense to your family.

SHARE THE ARTICLE

  1. National Institute on Aging. (2017, May 2). Taking care of yourself: Tips for caregivers. U.S. Department of Health & Human Services.

  2. Lewy Body Dementia Association (2024). What is Lewy body dementia.

Written by
Kevin Ryan
Kevin Ryan is a content specialist at A Place for Mom, focused on home care topics that include defining the differences between home care and other senior care types, home care costs, and how to pay. Kevin’s desire to support seniors and their families stems from his previous career as a teacher, plus his experience as a writer and community journalist.
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Edited by
Tori Newhouse
Tori Newhouse is a Manager of Content Strategy at A Place for Mom. She has more than 15 years' experience in publishing and creating content. With a background in financial services and elder law, her passion is to help readers to plan ahead and plan for their ideal retirement. She holds a bachelor's degree in English from Gordon College.
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