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Alzheimer’s Association Support Groups: Finding Hope and Community
Overwhelmed by Alzheimer’s? Visualize a community of supportive people who understand what you are going through. In 2024, the Alzheimer’s Association, and several other organizations, will offer the most valuable support groups across the United States to give emotional support, practical advice, and information on the latest about Alzheimer’s care. Be the one living with Alzheimer’s or your loved one, or be a caregiver-there is something for everyone. Below are nine of the best Alzheimer’s Association Support Groups available today for each specific category. You do not have to walk alone; just find the perfect support group for your needs.
3 Alzheimer’s Support Groups for Family Members
A) Memory Café Network
Background: The idea of the Memory Café Network, which began in 2008, is an adaptation of the Alzheimer’s Café developed in Holland. The concept has since caught on throughout the United States as a comfortable place for those diagnosed with memory loss and their families to gather. Many cafés are hosted at community centers, libraries, or area restaurants, creating a non-threatening atmosphere where one can always socialize and show support.
Pros
- Socializing with others facing similar challenges
- Activities, including music, art, and games, that are appealing to every cognitive level
- No diagnosis is required for participation
Cons:
- Availability not as accessible in all parts of the country, especially rural
- May not receive clinical or medical support for patients.
- The frequency of the meetings could be highly variable depending on location
Contact: To locate a Memory Café in your area go to www.memorycafedirectory.com. The website has a searchable database of over 900 memory cafés nationwide.
Location: Locations vary nationwide. For example, the New York Memory Café meets once a month at the 14th Street Y, 344 E 14th St, New York, NY 10003.
B) ALZConnected
Background: ALZConnected is an online community that was initiated in 2012 and is supported by the Alzheimer’s Association. Development was facilitated by the growing need for more flexible, accessible supportive options for those affected with Alzheimer’s disease. Several forums and chat rooms are set up on this website through which a member can communicate with others from around the country.
Pros:
- Support anytime, anywhere, if one has access to the internet
Multiple forums on everything from early-stage issues to end-of-life care
- Anonymity, which often creates even more significant openness. Professional moderation to maintain a safe and non-judgmental environment
Cons:
- This system is not suitable for people who rely on face-to-face interaction. Volume of posts and threads may be too difficult to navigate through for some users. Basic computer and internet skills are needed to navigate this site easily.
Contact: Sign up at www.alzconnected.org. Joining is both simple and free. As a member, immediately start to post in the forums and build relationships with others.
Location: Online community accessible from anywhere within the United States.
C) Family Caregiver Alliance Support Groups
Overview: Family Caregiver Alliance was founded in 1977 as the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Support groups are available in person and online, with an emphasis on caregiver well-being.
Pros:
- Professional facilitation by licensed social workers or experienced group leaders
- Emphasis on well-being of caregiver, including self-care strategies and stress management
Resources for all types of caregiving situations, not just Alzheimer’s General and specific groups offered-for example, adult children caregivers, LGBT caregivers
Cons :
- Cons May have waiting lists for popular groups in metropolitan areas Some groups require membership or have fees attached Only inperson groups offered within the San Francisco Bay Area Contact: Find a group at www.caregiver.org/support-groups or call their National Center on Caregiving at (800) 445-8106 for more information.
Location: Headquarters at 101 Montgomery Street, Suite 2150, San Francisco, CA 94104. Online groups are available nationwide.
3 Online Alzheimer’s Support Groups
A) Alzheimer’s Foundation of America Telephone Support Groups
Background: The Alzheimer’s Foundation of America has offered the telephonic support groups since 2010. These groups serve as an alternative method to eliminate geographic boundaries and reach individuals that are hindered from attending face-to-face support groups because of caregiving issues or concerns about mobility.
Pros:
- Log onto a teleconference support group from anywhere using a phone – no internet required
- Sessions are professionally led by licensed social workers
- No computer or internet skills required, suitable even for aged persons Groups are mainly both general and specific, for example, early-stage Alzheimer’s, adult children caregivers
Cons
- Lack of visual clues during the process of communication may be very frustrating to some
- Limited session time (if) may not fit into everyone’s schedules. To ensure quality interaction, this group size is limited due to which registration may be filled quickly
Contact: For more information and to enroll in a group, call 866-232-8484 or visit www.alzfdn.org. Registration required to participate.
Location: Accessible via phone from anywhere in the United States. AFA’s headquarters are at 322 Eighth Avenue, 16th Floor, New York, NY 10001.
B) AARP Online Community: Caregiving Forum
Overview: AARP was founded in 1958 and finally created its community website in 2010 to provide a platform for older adults and family caregivers who desired to communicate and share various issues relevant to them. Its community forum has really acted as an asset in its Caregiving Forum for people to care for those with Alzheimer’s and other diseases.
Pros:
- Diverse community-large membership from all over the nation
- Discussion topics range from practical caregiving tips to emotional support
- Access the enormous resource base that AARP has on aging, caregiving, and health. Available 24/7-which enables users to participate at any time that is most convenient for them.
Cons
- General to Alzheimer’s disease. Given the general nature of this community, there may be much less focused discussion on Alzheimer’s disease compared to other communities. It is most likely going to be overwhelming to new users because of the number of posts and sub-forums. The moderation may be less specialized compared to forums set up specifically for Alzheimer’s.
Location: This is an online forum and can therefore be accessed from any location within the United States. The AARP national office is situated at 601 E Street, NW, Washington, DC 20049.
C) Alzheimer’s Speaks Radio
Background: Alzheimer’s Speaks Radio was founded by Lori La Bey in the year 2011 and is a unique approach to support and education. Not being a support group per se, this online radio program provides a lot of useful information and functions to provide community to its listeners who are affected one way or another by Alzheimer’s disease.
Pros:
- Expert guests- Researchers, clinicians, and people living with dementia are featured on a variety of topics, including current up-to-date Alzheimer’s research, care strategies, and personal stories. Hear them live or at one’s own convenience through archived shows. Interactive questions and comments can be done through calling in or chat functions during live broadcasts.
Cons :
- Not a direct peer-to-peer support environment, which may be desired by some. Programming is scheduled and could conflict with personal availability. Requires internet access and general technology skill level for full participation.
Contact: Hear at www.alzheimersspeaks.com. Website lists upcoming programs and how to listen to archived ones.
Location: Maplewood, MN, but the website is accessible from anywhere. Mail is received at 1480 Kennard Street, Maplewood, MN 55109.
3 Alzheimer’s Support for Caregivers
a) Alzheimer’s Association’s 24/7 Helpline
Overview: The Alzheimer’s Association was initiated in 1980. In 1982, this organization began operating its 24/7 Helpline to provide around the clock support for persons living with Alzheimer’s disease. Although this is not a support group per se, immediate one-on-one support is available to the caregiver at any hour of the day or night.
Pros:
- Available 24 hours a day, 7 days a week, 365 days a year
- Staffed by trained professionals including master’s level clinicians
- Some of the strengths include: multilingual support in over 200 languages; crisis counseling, active listening in decision-making processes, and referral to local resources.
Cons
- It is not a peer support format for those who might wish to share experiences with peers. Sometimes, especially during peak hours or evening times, there is waiting. It cannot provide medical advice or diagnosis.
Contact: Call 800-272-3900 anytime for support.
Location: Available by phone anywhere in the United States. The national office of the Alzheimer’s Association is located at 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601.
B) Support Groups-Well Spouse Association
Background: Well Spouse Association was incorporated in 1988, is an organization that coordinates support for spousal caregivers. In-person and online support groups offer an opportunity to share experiences of those caring for their partners who have incurable illnesses like Alzheimer’s disease.
PROS:
- Specifically addresses spousal caregiving issues. • Offers in-person and virtual options, depending on preference and need. • Peer-led groups are fabulous for camaraderie and empathy. • Additional resources include respite weekends and mentoring.
CONS
- Limited to spousal caregivers
Some activities, such as respite weekends, may have a fee associated
Contact: Find a group at wellspouse.org or by calling 732-577-8899 for more information.
Location: Groups in various locations nationally in person. Virtual groups can be accessed from anywhere. Mailing address: 63 West Main Street, Suite H, Freehold, NJ 07728.
C) Lewy Body Dementia Association Caregiver Support Groups
Background: Lewy Body Dementia Association was established in 2003 and offers in-person and virtual support groups focused on Lewy Body Dementia, but it also welcomes caregivers of individuals with other types of dementia, like Alzheimer’s. Support groups offer specialized knowledge of dementia caregiving.
Pros:
- Specialized knowledge about caregiving in dementia, including less common forms
- Availability of both in-person and virtual options to meet different needs
- Educational resources and access to the latest research regarding dementia care
- Connects caregivers with others sharing similar challenges in dementia care
Cons:
- Initially designed for Lewy Body Dementia and may not be as directly relevant for caregivers of individuals with Alzheimer’s
- Availability is limited, with some groups only being available in-person
- Basic technology skills are required to participate in the virtual groups
Contact: Find a group at www.lbda.org/lbda-support-groups or call 404-935-6444 for more information.
Location: Various locations nationally to accommodate in-person groups. Virtual groups can be accessed from any location. Administrative office: 912 Killian Hill Road, S.W., Lilburn, GA 30047.
4. Things To Never Say to Someone with Dementia
When talking to a dementia patient, it is equally critical to watch your words. This includes refraining from the following utterances:
- “Don’t you remember?”-this is sure to frustrate and embarrass the person.
- “I just told you that” – Repetitions are very often necessary and should be patiently repeated.
- “You’re wrong” – Direct confrontations tend to agitate and distress.
- “Your husband/wife died years ago” – Reminiscing on painful losses creates unnecessary grief.
- “Why can’t you try harder?” – The person is most probably already trying as hard as they can.
Instead, practice patient, empathetic communication. Use simple, clear language and always approach interactions with kindness and respect. Try redirecting conversations when necessary, focusing on feelings rather than facts.
5. What Does the Alzheimer’s Association do and Offer?
The Alzheimer’s Association, established in 1980, is the nation’s leading voluntary health organization in Alzheimer’s care, support, and research. They provide:
- 24/7 Helpline (800-272-3900) for information and support in more than 200 languages
- Patient, family, and professional educational programs via online courses and in-person workshops 3. In-person and online support groups in many parts of the country 4. State-of-the-art research funded through investing over $455 million into more than 2,750 scientific investigations 5. Advocating for policies related to Alzheimer’s disease and funding of research at federal and state levels 6. Online resources such as the Alzheimer’s Navigator, to help create personalized action plans
- Safety services-Such as MedicAlert + Alzheimer’s Association Safe Return program
- Local chapters that offer community-specific programs and support
Their holistic approach includes improving the quality of care, advancing research, and supporting everyone affected by Alzheimer’s. This Alzheimer’s Association Support Groups is present in communities nationwide and has a national office at 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601.
Conclusion of Alzheimer’s Association Support Groups
Keep in mind that seeking help is a positive sign of strength, not weakness. Whether you are the one in care because of Alzheimer’s or caring for your loved one, these support groups will avail many resources, understanding, and community to you. Please don’t hesitate to reach out and be in touch with people who have gone through much of what you’ve been through. You might be surprised to find a whole community wanting to walk with you on your journey with Alzheimer’s.
