Top Dementia Forums for Families and Caregivers

In this article:

• The benefits of dementia forums
• Popular dementia forums
• Finding the best dementia forum for you

Caring for someone who has dementia can present a variety of challenges that can often lead to burnout and to caregivers neglecting their own personal health. In the United States, over 40% of caregivers report having multiple chronic diseases, according to the Centers for Disease Control and Prevention (CDC).

To avoid burnout, it is important for caregivers to monitor their own well-being. Building a support network can be helpful, and technology-based interventions may decrease depression, according to a study in The Gerontologist.

Dementia forums can offer:

• A buffer against the stresses of caregiving
• Opportunities to give and receive advice
• The potential for support at any time
• Connections to useful caregiving and medical resources
• An outlet to express concerns and challenges
• A way to share experiences with other individuals who can relate
• Activities that caregivers and their loved ones can participate in together
• Information and educational resources for individuals who are at the early or middle stages of the disease
• Connections to other people living with dementia
• Meaningful and cognitively stimulating activities

Read related article:What is the Sandwich Generation? Unique Stress and Responsibilities for Caregivers Between Generations

Many popular dementia forums are connected to organizations that also provide resources related to dementia caregiving and living with the condition. Other forums were created by individuals who were affected in some way by dementia. While the following list is not exhaustive, it is a good overview of the different types of dementia forums available.

AgingCare

This active forum offers support and information for caregivers on a variety of subjects. 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 quick on this A Place for Mom-owned site.

Alz Connected

A resource provided by the Alzheimer’s Association, Alz Connected offers 10 online, 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.

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Dementia Care Central

Developed with funding provided by the National Institute on Aging (NIH), Dementia Care Central offers a wealth of information about dementia in a well-organized, easy-to-navigate format. The forum section is aimed at providing a space for caregivers 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.

Dementia Talking Point

A resource provided by the Alzheimer’s Society, Dementia Talking Point offers four main forums: Support from other members; Information and resources; Alzheimer’s Society news, notices, and videos; and Archive. Users are quite active and include caregivers as well as persons living with dementia. It should be noted 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.

Dementia Unplugged

While not promoted as a dementia forum, this unique Facebook page does allow users to discuss their experiences with dementia, post questions, and request advice. The responses can be somewhat scattered, but members are thoughtful and supportive. The page is also connected to the Dementia Society of America’s monthly live online webcasts that cover a variety of educational topics for individuals living with dementia, as well as their caregivers and families.

Lewy Body Dementia Association

The Lewy Body Dementia Association forums are good examples of online spaces where users can receive information and support while sharing their experiences around specific forms of dementia. Users can choose from three different forums that focus on both caregivers and those diagnosed with Lewy Body Dementia:

• Care Partner Support Group is a closed Facebook group reserved for caregivers or family members of individuals living with LBD. To join the group, click the “join” button and answer a list of three questions.
• Living with Lewy is a Facebook group for individuals living with LBD. The group asks that only individuals who are diagnosed or expect a positive diagnosis join. If you are interested, click the “join” button and answer the accompanying questions.
• Living Together with Lewy is for individuals who are in the early stages of LBD and for their caregivers. To join this closed Facebook group you will need to answer a series of questions after clicking the “join” button.

Memory People

This popular Facebook forum has over 25,000 members and was created by Rick Phelps, who was diagnosed with early-onset Alzheimer’s disease in 2010. Phelps designed the group because he wanted 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 posting guidelines.

Reddit Dementia

Officially titled, “Dementia, Alzheimer’s, brain disease, head injuries, concussions and cognition,” this forum offers information, support, and a space for users to share their experiences. The posts include anecdotes that can range from sad to humorous. In addition, users ask questions, offer comforting advice, and post tributes to loved ones who have passed away.

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 who are navigating their role as a caregiver. If you feel your loved one who is living with dementia may require more care and support, consider reaching out to A Place for Mom. Our Senior Living Advisors offer their services free and can help you find a memory care community that best fits the needs of you and your loved one.

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Sources:

Eisdorfer, C., Czaja, S. J., Loewenstein, D. A., Rubert, M. P., Argüelles, S., Mitrani, V. B., & Szapocznik, J. (2003, August). The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist.

Lewy Body Dementia Association. What is Lewy body dementia. 

National Association of Chronic Disease Directors. (2018) Caregiving for family and friends: A public health issue. Centers for Disease Control and Prevention.

National Institute on Aging. (2019, December 24). Getting help with Alzheimer’s caregiving. U.S. Department of Health & Human Services.

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

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