Finding Dementia Support Groups For Individuals And Families

The term “dementia” refers to a set of serious psychological and cognitive symptoms caused by abnormal brain changes or an underlying disease. In addition to having debilitating effects on the individual, dementia often impacts the emotional, physical, and even financial well-being of their loved ones as well. Navigating dementia can seem overwhelming, but support groups for caregivers and family members may help. Below, we’ll share resources to help you find such groups.

What is dementia?

Dementia is not a single disease, but a broad term used to describe a range of symptoms that occur when someone has any of a number of serious brain disorders, such as Alzheimer's disease. These symptoms are usually caused by abnormal changes in the brain, like the formation of plaques or protein deposits. Dementia leads to a decline in cognitive abilities, such as problem-solving, language, memory, and related skills. These effects can eventually become severe enough to interfere with daily life and independent functioning, impacting behavior, emotions, and relationships.

Alzheimer's disease is the most common cause of dementia, making up 60–80% of cases. The second most common cause is vascular dementia, which happens due to small bleeds and blockages in the brain's blood vessels. Or, some people may experience mixed dementia, where they have changes in the brain associated with more than one type of dementia. There are also many conditions that can cause cognitive impairment but are not classified as dementia—including some that are reversible—such as thyroid issues and vitamin deficiencies.

Dementia symptoms are progressive, meaning they start out as mild and gradually worsen over time. If you or someone you know is having memory problems or other changes in thinking skills, it may be important to see a doctor. A professional evaluation might reveal a treatable condition. Or, if the symptoms do suggest dementia, early diagnosis can often help a person benefit from available treatments, participate in clinical trials, and plan for the future.

Finding dementia support groups

Whether you have a disease that causes dementia or are caring for someone with dementia, finding a community that can provide support may be highly beneficial. 

Dementia support groups can provide a valuable opportunity to connect with others with similar experiences, ask questions, find information about local resources, and learn strategies for managing the challenges of living with or caring for someone with dementia. In fact, research suggests that joining a dementia support group can positively impact mental health and improve quality of life for both people with dementia and their caregivers. The organizations listed below offer resources related to dementia support.

National organizations

National organizations that offer help finding dementia support groups in your area include:

• The Alzheimer's Association offers a support group locator tool to find local support groups as well as online communities and resources.
• The Alzheimer's Foundation of America (AFA) provides a support group finder, a national toll-free helpline, and various resources for caregivers and families.
• The Lewy Body Dementia Association (LBDA) provides resources and information on support groups specifically for those affected by Lewy body dementia.
• The National Institute on Aging (NIA) has information and resources on Alzheimer's and related conditions on its website, including links to support groups.
• The National Council on Aging (NCOA) offers a variety of resources for older adults and caregivers, including support group information.

Virtual forums and support groups

Some examples of groups and organizations that offer virtual support include:

• Memory People, a social media community offering support and information for patients, caregivers, and family members
• Dementia Alliance International (DAI), an organization run by and for people with dementia, with support groups held virtually

Local organizations

Many local organizations also offer support groups for patients and caregivers. Check with your healthcare provider for recommendations, or consider exploring the following in your area:

• Community centers and senior centers, which often host support groups or can direct you to local resources
• Religious organizations, which sometimes offer religious or spirituality-based support groups on certain themes like illness or grief
• Local nonprofits focused on senior care or specific health issues, which often have support groups; check for local chapters of larger organizations

Emotional support for caregivers is available

Reach out to an online therapist

Finding individual support 

According to research, certain forms of talk therapy may benefit some individuals with dementia by helping them manage symptoms of anxiety and depression. Through structured, professionally led sessions, patients can learn coping strategies to deal with cognitive decline and emotional challenges, potentially enhancing their quality of life. 

Additionally, cognitive behavioral therapy (CBT) in particular can be a useful avenue of individual support for family members and caregivers of people with dementia. CBT may help equip them with the emotional skills to handle caregiving responsibilities more effectively, reduce and manage stress levels, and prevent burnout. 

In either case, online CBT can often offer additional benefits over in-person therapy for those who prefer this format, such as more flexible scheduling and the ability to receive support in a familiar environment. With a platform like BetterHelp, you can get matched with a licensed therapist and meet with them from home or anywhere you have an internet connection. Research suggests that online therapy can be as effective as in-person therapy in many cases.

Takeaway

Dementia support groups can offer a sense of community, valuable information, and coping strategies that may significantly improve quality of life for dementia patients, caregivers, and family members. Whether through national organizations, local resources, or virtual platforms, these groups can be helpful to those navigating the complexities of dementia-related illnesses. Additionally, individual or family therapy can potentially enhance the well-being of both dementia patients and caregivers. Through these resources, individuals and families may be able to find the support they need to face challenges with resilience and hope.