Caregiver Support Groups: Dementia
The role of a caregiver is often a complex one. Caregivers may find support in speaking with others in a similar role. Support groups for caregivers who are caring for someone living with dementia are listed by county.
Before joining a support group for the first time, we recommend that you reach out to the facilitator or location to check if any details have changed, or to be notified if an emergency arises. Additionally, some facilitators like to learn about new members ahead of your first meeting to prepare a welcome packet or notify the group of a new member, and in general to learn more about your caregiving role and journey.
If you are unable to find what you are looking for, please contact UPMC Senior Services at 866-430-8742 or . We will do our best to check for a support group that will meet your needs and is located close-by.
Descriptions For Our Support Groups Are Below:
Lunchtime Support Group for Family Caregivers
Meets on the second and fourth Thursday of each month from 12 1:30 PM. Pre-registration required.
This support group is for spouses, partners, adult children, and others who are coping with the emotional and physical challenges of caring for an older adult.
Adult Child Thursday Evening Caregiver Support Group
Meets on the first and third Thursday of every month from 6:30-8 PM. Pre-registration required.
Being a caregiver for an older adult in your family is a very difficult job. If you are caring for an older adult with a chronic or acute illness , you might benefit from this group. You will have the chance to share what youre experiencing, gain support from other adult children, and connect with resources, programs, and services.
Support Group for Caregivers of Spouses/Partners with Dementia
Meets on the second and the fourth Tuesday of each month from 12:30-2 PM. Pre-registration required.
This support group for spouses/partners of individuals with dementia meets to share concerns, achievements, frustrations, and losses involved in caring for partners who are coping with dementia.
Iona/Alzheimers Association Support Group for Adult Children Caring for Parents with Memory Loss
Meets on the second and fourth Wednesday of every month from 6 7:30 PM. Pre-registration required.
Iona/Capitol Hill Village Support Group for Caregivers of Individuals with Dementia
Memory Loss Support Group
Transitions in Aging Support Group
Who To Ask About Dementia Carer Resources
If you feel you would like more access to resources to support you in your role as a carer, the following guides provide some great information on where to access additional support.
However, you could also approach your GP, who will act as a sign post for support such as a carers assessment, counselling, and respite care. Alternatively, you can contact your local council to enquire about a carers assessment and request further information on the financial resources available to you.
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Caregiver Support Is A Phone Call Away
Talk to caring people for practical caregiving information and help finding local resources/services.
If the person you care for asks questions repeatedly, has trouble performing simple tasks, or forgets recent events, he or she may have a form of dementia.
There are several causes for dementia, so you should have the person diagnosed by a doctor.
Some dementia may be caused by factors that can be treated, such as drug interactions, severe diabetes, vitamin deficiencies, or depression. The most common kind of dementia is Alzheimer’s Disease. It is not curable.
There are many helpful resources for family caregivers coping with dementia, including:
Caregivers Of Alzheimers And Dementia Support Chat Group
Jean OConnor, who was looking for a community for caregivers as she cared for her father with dementia, founded this Facebook support group, which now has over 9,600 members. People with dementias family members, caregivers, and friends can request to join the group to share their experiences and learn from one another. Medication management, hospice care, and treatment alternatives are among the subjects discussed in the support chat group.
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Lewy Body Dementia Association
Key Specs
- Membership fee: Most groups are free, some may collect voluntary donations
- Structure:Online, phone, video conferencing
- Details: Offers support groups specifically for spouses and has active Facebook support groups.
- Things to consider: Support groups are not available in all states
Lewy Body Dementia is a condition involving abnormal protein deposits in the brain called Lewy bodies. These deposits affect brain chemical levels, which may result in abnormal thinking, movement, and behavior, as well as mood disorders.
Lewy Body Dementia Association offers several types of virtual groups, internet discussion forums, and more. Its offers virtual, meetings for anyone living with LBDeven those who are not yet diagnosed but are seeking information.
If you’re seeking a combined support group for people diagnosed with Lewy body dementia and their care partners, Living Together with Lewy is another Facebook group that is available. This one aims to help those who are newly diagnosed, people with early symptoms of the condition, and others who are seeking advice around a possible diagnosis.
LBDA also offers an online support group if you have a spouse with Parkinsons disease dementia or Lewy body dementia : LBD Caring Spouses.
Financial Dementia Caregiver Resources
Many dementia carers will reduce their working hours in order to have more time to provide care to a family member. Some will eventually stop working altogether in order to become a full-time caregiver to the person with dementia. Of course, this will have a huge impact on your finances, but there are resources out there to help you with that.
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Events For Alzheimers Awareness
If youre not quite ready to commit to joining any particular Alzheimers support group, you may consider attending an event first.
While many in-person events have gone virtual in response to the COVID-19 pandemic, some areas are still holding outdoor walks and other fundraising events. For example, you can find or start a team for Walk to End Alzheimers here.
Other events may be held online, such as conferences, group chats, and more. These also allow you to connect with others in a shared space.
The Alzheimers Foundation of America, for example, has daily virtual events like educational classes, arts and crafts, movement activities, and more. Check out the monthly calendar for more information.
Additionally, you may find more events throughout the month of June, which is considered Alzheimers and Brain Awareness Month.
American Parkinsons Disease Association
Key Specs
- Membership fee: Free
- Structure: In-person and online support groups, fitness classes
- Details: Offers a network of local chapters and virtual events, resources created specifically for veterans and first responders, and fitness and dance classes on YouTube and via Zoom.
- Things to consider: There are minimal fees for some classes.
The American Parkinsons Disease Association provides a variety of support groups and resources for Parkinsons disease patients and their family members and caregivers, everything from a support forum called Smart Patients to an Ask the Doctor section aimed at answering any question or concern you may have.
The APDA offers a nationwide search page to find local, in-person support group meetings for Parkinsons patients and their caregivers. Fitness classes for people with Parkinsons are available nationwide and, although there’s a fee involved, the APDA can help those who need financial assistance.
There are also resources for those with early-onset Parkinsons, veterans with Parkinsons, Spanish speakers, and more.
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Mindfulness Meditation For Caregivers
In general, meditation practice has been shown to be helpful with improving concentration, attention, creativity and decreasing anxiety and depression.
First and third Tuesdays of the month 1 2 p.m. ET
For more information or to register, email or call . The meeting password will be provided upon registration. All meetings are password protected.
Family Caregiver Alliances Online Caregiver Support Group Caregiver
Caregiver-Online is a Family Caregiver Alliance email-based caregiver support group. To join the debates, new users simply need to provide their name, email address, and password. You can choose to receive a daily roundup of current subjects or individual emails as each debate progresses after you join. This is a simple and low-pressure approach for caregivers to communicate with one another and share questions, concerns, and ideas.
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Understanding Dementia And The Diagnosis
Dementia is a progressive illness, so the symptoms of the condition will gradually worsen over time. Diagnosis is key to providing early intervention, ensuring that the person with dementia is given the support they need as soon as possible.
The following resources provide some more information on understanding dementia as a carer:
This guide provides statistics about dementia, common symptoms, how to get a diagnosis, treatments and more.
Benefits Of A Caregiver Support Group
Benefits of joining caregiver support groups include:
- Forming friendships, which can reduce feelings of loneliness, isolation, anxiety, or distress
- Getting advice from other caregivers regarding practical solutions, treatment options, and what to expect in the future caregivers can also share their tips and improve or learn new healthy coping skills
- Gaining a sense of empowerment and control
- Giving a better quality of life to your senior loved one
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Dementia Support Group Facilitators Toolkit Project
Link to Resource:
This toolkit, developed by the Rush Alzheimers Disease Center, is designed for dementia support group facilitators who want to learn and grow in their practice. The Toolkit Project was developed based on insights gained from a dementia support group for adults with younger-onset Alzheimers disease and their caregivers. The toolkit includes information about support group facilitator skills, common themes expressed by people living with dementia and their family members, topics for encouraging discussions, and resources to share with support group members. Resources also cover how dementia support group facilitators can stay connected with their members and encourage members to stay connected with each other during the COVID-19 pandemic.
Emotional Support Groups For Alzheimers
Caregivers take on tremendous responsibilities that can easily overwhelm them. Ongoing anxiety, guilt and sleeplessness can lead to problems with physical health. You may eventually withdraw from friends and social activities and soon find yourself feeling alone, depressed and exhausted.
The National Alliance for Caregiving indicates that more than 65 million Americans care for a chronically disabled, ill or senior family member or friend. Those caregivers provide an average of 20 hours of care per week, often while still managing a full-time job and caring for their family.
Finding a support group to share stories with, seek advice from and simply have available to listen to you on a regular basis can help lower caregiver stress and alleviate the health risks that caregivers face. Plus, support groups have information on community resources for adult day care services, Alzheimers education and other programs that can ease some of the workload.
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Online Memory Caregiver Support Groups
If your loved one has Alzheimers, another form of dementia, or other memory-impairment illnesses, Memory People may be a helpful group to join. It was created by Alzheimers patient Rick Phelps as a way for dementia patients and caregivers to share their stories and find understanding.
The Purple Sherpa Basecamp
Alzheimers and Dementia Caregivers Support Chat Group
This chat group supports friends, family, and caregivers of Alzheimers and dementia patients. The members value brutal honesty and occasional humor during discussions. If youre focused strictly on gaining information regarding memory care, this group may not be the right fit.
Dementia Caregivers Support Group
A dementia patients daughter-in-law, who also served as primary caregiver, created this dementia caregiver support group. Caregivers in this group which now has more than a whopping 43,000 members support each other by posting caregiving suggestions, ways to de-stress, and new discoveries in dementia treatments and preventions.
Parkinson’s Disease Caregiver Support Group
Taking care of yourself is one of the most important things you can do as a caregiver. In partnership with the American Parkinson Disease Association, HopeHealth is pleased to present a support group for caregivers of individuals living with Parkinsons disease. This group offers an opportunity to share personal experiences, feelings, and coping strategies while providing education and support to empower caregivers and their loved ones to live their best life.
Third Monday of the month 5 6:30 p.m. ET
For more information or to register, email or call . The meeting password will be provided upon registration. All meetings are password protected.
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How To Find An Alzheimers Support Group Online
Online Alzheimers support groups offer flexibility in terms of time and travel, as well as safety due to COVID-19 concerns. Depending on the type of online group, sessions may be in a synchronous format where everyone joins at the same time, such as live group talks or meetings.
Other groups, such as message boards and community chats, may be asynchronous. This means you can log on whenever you want, which gives you a bit more flexibility in terms of time.
Some Alzheimers organizations, such as the Alzheimers Association, offer virtual resources as well. Here, along with support groups, you can find online message boards for people living with Alzheimers disease, plus their friends, family members, and caregivers.
The Alzheimers Associations free message boards are offered via ALZConnected. One message board called I Have Alzheimers or Another Dementia is designed specifically for people affected with this brain condition.
This is a public forum, though, so be careful about sharing any personal information. And because message boards are intended for information only, not medical advice, its best to check with your doctor before trying any recommendations you read.
You may also decide to join one Alzheimers support groups on Facebook, such as:
Another virtual option to support caregivers is the Alzheimers Foundation of America helpline.
Support Groups For Caregivers On Facebook
Does your loved one struggle with symptoms of memory loss or cognitive function? Whether your loved one is touched by dementia, Alzheimers or another memory loss illness, this group of over 23K active users is ready and able to assist with questions and concerns. They also regularly offer event details, educational opportunities and awareness discussions to help the community stay up-to-date on new developments in the fight against memory loss. It is a community open to both those struggling with dementia and memory impairment, and those who know them.
2. Dementia Caregivers Support Group
This group also supports caregivers of those affected by dementia and Alzheimers. They pride themselves on being a safe space for anyone, and membership in the group guarantees a judgment-free place for learning and comfort. With over 15,000 members, the discussions stay lively and the topics timely.
3. Alzheimers and Dementia Caregivers Support
This support group was created by a woman who was caring for her mother-in-law with dementia. While her loved one has passed on since then, the group has gained traction as a loving and encouraging destination for over 41,000 caregivers to learn and listen. The group also has over 100 new posts a day from members, making it a place to get answers to your caregiving questions quickly.
4. Caregivers Hub Support Group
6. Caregiver Support Community
7. Alzheimers and Dementia Caregivers Support Chat Group
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Alzheimers And Dementia Caregivers Support Group
Join us for this support group and discuss the various issues facing caregivers of loved ones with Alzheimers disease and other dementias. Caregivers will also receive education and information on resources and interventions that are available throughout the course of care for patients with dementia and Alzheimers disease. Our group is affiliated with Alzheimers New Jersey . We will have guest speakers on different topics once every three months.
All support group meetings are currently taking place virtually through Zoom. The link to the meeting will be emailed about 30 minutes prior to the start of group.
How Support Groups Work
Many people ranging from caregivers to friends and family of people with Alzheimers disease find support groups to be a wonderful source of information, encouragement, and inspiration. In addition, those who have been recently diagnosed with dementia or are in the early stages of the disease find support groups helpful. With the advancement of technology there is more, easy access to support groups. They can be accessed in-person, virtually or on-line.
In-Person
Virtual
This is a hybrid model that mirrors in-person format. Done virtually, meetings are held on platforms like zoom. Meetings are held with moderators leading in a discussion that could be question based or lead from an email chain. While face-to-face support can be beneficial, this option is easily accessible only requiring internet. One can gain the same benefits of help and compassion but done easily without having to leave the house. This is an accessible tool that can easily offer support for someone who has less time, difficulty with transportation or wants a support group that they can attend from the comfort of their home.
Online
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General Caregiver Support Group
The support of caregivers during these particularly trying times brought by COVID-19 is essential to their wellbeing and that of their families.
Tuesdays 6 – 7:30 p.m.
For more information and to register, please email or call . The meeting password will be provided upon registration. All meetings are password protected.
Find A Group To Share The Journey
Whether you are caring for your parents, a spouse, or another loved one, meeting and talking with other caregivers can be an opportunity to learn, connect, get ideas and be understood.
When choosing a caregiver support group, you may want to visit more than one to make sure the group is the right fit. Most groups are facilitated by a social worker or other professional who specializes in caregiving.
There are caregiver support groups located throughout the six counties that that Area Agency on Aging 1-B serves Please call before attending to confirm that the group is still active and accepting members.
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