Many support groups offer an educational component to address the questions that people who are newly diagnosed may have. Support group members often give each other tips on how to manage the various challenges that arise. Not only can Alzheimer’s support groups provide information, but studies have shown that they can help reduce depression and improve the quality of life and self-esteem for people with AD who have mild cognitive impairment (early Alzheimer’s), as well as those in the later stages of the disease (i.e. Alzheimer’s dementia).
Finding the right support group can help people bridge the gap between the initial shock of learning they have Alzheimer’s disease, knowing what to expect, and, eventually, accepting a diagnosis so they can lead a meaningful life. But there are many variables to note during this search: Communities are offered online, in-person, and more, and each option has its own benefits and drawbacks. There is no right answer when it comes to which group is best; in the end, it’s the group that works for you that really matters.
The organization offers communities for people with Alzheimer’s disease, caregivers, and friends and family members. Each group is facilitated by an experienced and trained moderator, such as a person who has been a caregiver for a person with AD or a professional in the field.
The Alzheimer’s Association offers an early-stage, social engagement program to help people feel comfortable about meeting and interacting with people. The group engages in activities such as bowling, baseball games, and more.
Participants of the early-stage social engagement groups are encouraged to speak on the phone; they can chat with someone who is also living with AD confidentially, connect with others who can answer their questions, and provide encouragement and inspiration.
The Alzheimer’s Association’s support groups are all free of charge, and some are offered in different languages. The online program includes a message board (where members share information such as practical tips), Local chapters can be found by using the site’s online search tool.
The AFA offers professionally facilitated groups run by licensed social workers, allowing caregivers a chance to connect with others and share their stories, questions, answers, emotions, and more. The sessions are scheduled at various times during the week, and cover general caregiver support, family interactions, and conflict resolution. There are also options for caregivers to speak with each other one on one.
Register for a free caregiver support group by calling the organization’s toll-free helpline. A social worker is available on weekdays and weekends to help with enrollment or answer any questions.
The nonprofit coordinates a national network of support groups and does everything from facilitating a mentor program to publishing a newsletter to keep people informed. Its website offers resources for coping and survival skills, which includes a chat forum for spousal caregivers.
The Well Spouse Association also provides continuing support for members whose spouses have died, advocates on behalf of caregivers, and is always looking for new tools to help caregiver spouses and their families cope with the emotional and financial stresses associated with chronic illness and/or disability.
The service offers recreational activities to give group participants much-needed respite opportunities because breaks are important for caregivers. There are respite weekend activities, but the fee varies, depending on the location.
In-person support groups are offered by state, while telephone-based support is also offered.
Dementia Mentors provides a platform for people living with dementia of all types, including Alzheimer’s disease. Support is offered via educational videos that chronicle what it’s like to live with dementia.
The website offers a free mentorship program for people with the disease. The mentors are all volunteers who have dementia themselves.
To request a mentoring session, users will need to fill out an online form about the dementia-related illness they have and where they live. Next, Dementia Mentors will match them with a mentor who also has Alzheimer’s disease, and send a link that will open an online video chat window.
Dementia Mentors also offers virtual Memory Cafes, which are online groups for socializing and sharing information or experiences. Five to six of these cafes are hosted by a mentor every week.
Group members and participants are free to discuss their Alzheimer’s disease battle, ask questions, give each other tips, and share stories. The primary goal of the organization is to simply provide a way for people living with dementia to make social connections and support one another.
All services offered by Dementia Mentors are free.
Each Memory Cafe has a different focus and format. Some aim to provide education, while others are activity-based, offering group activities such as music, dance, and art. There are even communities that offer guided forums for brain exercises that help improve memory by encouraging reminiscence. In addition, Memory Cafes provide a place for mutual support and social interaction.
Not only do people with dementia or MCI (and other memory problems) benefit from Memory Cafes, but caregivers can participate in the activities as well. It’s a great way to socialize, find enjoyment, and add group interaction into a routine.
Memory Cafes can be offered as an online group activity (via some sort of video chat platform such as Zoom) or as in-person meetings that often add some perks like potlucks or art projects. Check the website for the various meeting offerings.
According to the Alzheimer’s Association, approximately up to 5% of people with Alzheimer’s disease (AD) develop symptoms before age 65. This indicates that approximately 250,000 people in the U.S. have been diagnosed with the younger-onset form of AD.
If you live in the San Francisco area, however, there’s a local community sponsored by the UCSF Memory and Aging Center Clinic. It was created specifically for those who have been diagnosed with young-onset AD and their caregiver or spouse/significant other. For group members to qualify, they must: be in the mild or early stage of Alzheimer’s disease, have been diagnosed before age 65, or have a significant other or caregiver who will participate in the group.
It is free to join and participate in, meets bi-monthly, and offers education on Alzheimer’s disease and new research developments. The community aims to provide support and validation for the struggles the families are going through, while also teaching coping skills and discussing emotional challenges.
If a group setting is not something that helps you, perhaps you could try a one-on-one supportive environment or chat webinars that offer an opportunity to watch and listen to others with AD. If a group that is facilitated by a layperson is not structured enough, a professionally led support group, such as those offered by a licensed mental health professional, counselor, or a therapist, might be ideal.
