According to the Alzheimer’s Association, around 6.2 million adults in the U.S. over the age of 65 have Alzheimer’s disease. Data compiled by the Centers for Disease Control and Prevent (CDC) indicates that Alzheimer’s is the fifth leading cause of death for people over the age of 65. A growing number of support groups and related services have emerged to help meet the rising needs of people who have been affected by the disease. Support groups are a group of individuals that share a similar concern, experience, or problem. Such groups meet regularly, either online or in person, where they can share stories, make connections, provide encouragement, and get advice from people who are facing the same challenges. Because of the amount of care that people with the condition require, it is normal for caregivers to experience symptoms of burnout, fatigue, anxiety, and stress. Joining a support group can provide an outlet where caregivers can connect, share tips, and feel more empowered. Let’s learn more about how to find an Alzheimer’s support group, including the places where you can look for groups either online or in your community. Exploring what these groups can offer can help you feel inspired to find one that is right for your needs.
Finding an Alzheimer’s Support Group
The first step in finding an Alzheimer’s support group is to scout out some of the resources that are currently available. While support groups were often limited to in-person, local meetings in the past, the coronavirus pandemic played a role in increasing online access to virtual support groups, including those devoted to Alzheimer’s disease. There are a number of places where you might begin your search for an Alzheimer’s support group. If you are interested in finding a group in your local community, start by talking to your doctor or therapist for tips. They may be able to connect you with supportive resources in your community. Other places where you can search locally include a social worker affiliated with a hospital, outpatient psychotherapy centers, faith organizations, and aging agencies and services in your area. In addition to looking in your local community, there are also Alzheimer’s disease and caregiver organizations that offer online and in-person support groups, including the following:
Alzheimer’s Association
Check with the Alzheimer’s Association to see if there is a local support group chapter in your area. Start by searching their site for the closest chapter to you or call 800-272-3900. The Alzheimer’s Association also hosts virtual support groups led by professionals and peers. They offer support for individuals living with the condition as well as caregivers of all ages.
Veteran’s Administration Caregiver Support
If you are caring for a family member who is a veteran, the VA Caregiver Support Line is a resource you can call at 1-855-260-3274 if you need information or more information about local support services. You can also access the online forum, Caregiver Connections where you can meet other caregivers who can offer support and advice.
Family Caregiver Alliance (FCA)
The Family Caregiver Alliance provides a range of information and resources for caregivers, including in-person and online support groups. In addition to an unmoderated online support group for partners, family members, and other caregivers, there is a closed group for young adult caregivers under age 40 who live in the San Francisco Bay area, a phone-based Spanish language support group for Bay Area residents, and an online group for LGBTQ+ adults caring for someone with a chronic illness
Benefits of Joining a Support Group
Accessing information and resources online can be beneficial for caregivers, but support groups can be an additional source of encouragement and strength. Being able to connect with others who are dealing with the same issues, experiencing the same emotions, and struggling with similar stresses provides a valuable outlet for caregivers. Support groups can also be a place to vent some of your more difficult or distressing emotions. Rather than say something to your loved one that you might later regret, you can share those feelings in the safety of the group—and often get advice on how to cope with these emotions or frustrations. Group members can help validate your emotions, which may make it easier for you to accept these feelings. While these groups can sometimes be a place to talk about the most difficult aspects of caregiving, they can also be a place to find inspiration and encouragement. Such groups can:
Leave you feeling better able to cope with your situation.Help you feel more empowered and in controlBecome a source of practical advice for specific or unique challengesProvide information about services and resources in your community that can help you and your loved oneTeach you new coping skills that can make daily living more manageable
Caring for someone full-time leads to major changes in a person’s living situation, job, social life, and recreational activities. This can be an isolating experience that is compounded as a loved one’s cognitive status continues to deteriorate.
What to Expect
f you’ve never been a part of a support group in the past, getting started might seem a bit daunting. It’s understandable to feel nervous, but learning more about how the group works can help put you more at ease. While you can introduce yourself and share your story, you can also start by observing and listening. Talk to the group’s facilitator or leader, whether that person is a mental health professional or a peer-mentor, and talk about how you would like to begin. The format and events of each meeting can vary from one group to the next. Meetings may start with introductions and each session may focus on a specific theme such as:
How to cope with difficult behaviorsWays to deal with relationship changesHow to handle feelings of anger or impatienceTips for transitioning a family member into a care facilityAdvocating for a family member with Alzheimer’s disease
Things to Consider
Being a caregiver can be difficult, frustrating, and stressful at times. It is normal to feel tired, distressed, irritable, or sad at times. Support groups can be there to remind you that you are not alone. Before joining a support group, it is important to consider what you’re looking for and what you hope to gain from the experience. A successful Alzheimer’s support group will provide:
A safe place to share what you are feeling without judgment A caring and trusting atmosphere Information that will help you develop or strengthen your coping strategies Advice on what you can expect in the future Practical tips that can help you solve problems, manage daily challenges, and relieve stress Opportunities to make new friends An agreement about the rules of the group, including guidelines around confidentiality and privacy A facilitator to guide the group, whether it is led by a professional or peer mentor
Other factors you might want to consider before joining an Alzheimer’s support group include :
The group’s sizeThe group’s focus (for example, some groups may be for caregivers only, while others might welcome people with Alzheimer’s disease)The group’s meeting scheduleThe group’s location
If you have any questions or concerns, be sure to talk to the facilitator. They can answer questions or point you to other resources if the group doesn’t work for your needs or schedule.
A Word From Verywell
Alzheimer’s support groups serve a critical need by serving as a source of connection, information, and advice. Talking to other people who are or have been in your place can help you better prepare for the future and understand what to expect as your loved one’s disease progresses. These groups can also provide some much-needed emotional support during what is often a difficult and isolating time.
