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.
Caregivers Are Not Alone
Long Island Alzheimer’s and Dementia Centers Caregiver Support Groups are tailored to the unique needs and experiences of spouses, adult children, loved ones, and the bereaved. Every one of our groups are facilitated by our professional, licensed masters level social workers. In addition to providing support and hearing from other caregivers, our Caregiver Support Groups are designed to:
- Reduce caregiver stress
Online Family Caregiver Support Groups
Caregiving questions of all sorts are quickly answered on this active forum, or message board, from A Place for Moms partner site, AgingCare. Users can select from three separate tabs: Recent Activity, Most Popular, and Needs Answers. Anyone can read the Q& As though you must to post your own questions or answers.
FCAs online caregiver support group focuses on family caregivers for patients with both physical and cognitive disorders like Alzheimers, stroke, Parkinsons, and brain injuries. This FCA group offers a safe place to discuss the stresses, challenges, and rewards of providing care for a loved one.
Caregivers Connect allows the voices of family caregivers to be heard. This support group aims to inspire caregivers and provide helpful resources to better care for senior loved ones. It welcomes new people and encourages members to invite anyone who may benefit from these discussions.
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What To Expect At The Meeting
A facilitator from ADRC guides the meeting, which lasts between one and two hours. We are always happy to follow up with information about questions that arise during the meeting. Each group meeting is unique, depending on the needs of those present, but they have some common elements:
- Everyone gets a chance to speak.
- Challenges are shared and emotions are validated.
- Suggestions are shared if they are asked for.
- No one sits in judgment on anyone elses experience.
- Sometimes there are tears, but there is always some laughter, too.
Around any holiday, the dates or locations might change, so please check with us in November and December. If you have questions about attending a support group, please contact us at 436-7750 or
Lewy Body Dementia Association
- 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.
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Caregiver & Dementia Support Groups Beyond Uc San Francisco
If there is not a disease-specific support group in your area, you can try some of these groups that focus on dementia or caregivers. You can also check with a social worker at your hospital, adult daycare centers, your local Alzheimers Association chapter or community organizations for recommendations. You can find help and good ideas from people dealing with similar issues.
- The Alzheimers Association is a voluntary health organization supporting caregivers and people living with Alzheimers disease and related dementias. It is also a private, nonprofit funder of Alzheimers and related dementias research. Explore the Northern California and Northern Nevada chapter.
- The ARCH National Respite Network includes a search function to help caregivers and professionals locate respite services in their community and advocacy for respite in policy and programs at the national, state and local levels.
- Caregiver Action Network provides education, peer support and resources to family caregivers across the country free of charge.
- CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends.
- CJD Support Network provides emotional and practical support for all strains of CJD and for those who are at greater risk of CJD.
American Parkinsons Disease Association
- 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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Websites And Books On Dementia
- or call their 24-hour helpline to talk with someone who can help you get services and support.24-Hour Toll-free: 1-800-848-7097 or 206-363-5500
- or call their 24-hour helpline to talk with someone who can help you get services and support.24-Hour Toll-free: 1-800-272-3900 or email at
- Alzheimers.govAn official U.S. government website managed by the US Department of Health and Human Services
- Helpquide.org is a website for the general public that includes detailed information on the signs, symptoms and treatment of a variety of different types of dementia and detailed caregiving information.
Talk With A Senior Living Advisor
Our advisors help 300,000 families each year find the right senior care for their loved ones.
The American Cancer Societys Search for Resources page enables users to find local support groups for particular types of cancer. Enter in your ZIP code or city and state, then select support and the specific cancer in the program field.
The U.S. Department of Veterans Affairs created The National Caregiver Support Line to assist caregivers, veterans, and others seeking caregiver information to speak with licensed, caring professionals. They can connect you with a Caregiver Support Coordinator at a VA Medical Center near you, or simply offer a listening ear. You can reach the support line at 1-855-260-3274, Monday through Friday 8:00 a.m. to 8:00 p.m. EST.
Find local support for people with mental health conditions and their caregivers at this comprehensive site. Some support groups are peer-led while others may be led by a mental health professional.
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Legal And Financial Support
Caring for a person with dementia can affect your legal and financial situation in a number of ways. For example you may be deciding whether to give up work. Check whether you can get support to stay in work, such as flexible working arrangements or help from your local authority. Carers have the right to request flexible working arrangements and employers have to give a good business reason to refuse their request.
If you do give up work but you dont qualify to receive Carers allowance, you may still be able to claim Carers credit so that your pension wont be affected. Carers credit is a National insurance credit for carers. For more information contact the Carers Allowance Unit .
Make sure you and the person you are caring for receive all the benefits youre entitled to. Age UK can give you advice about this. Or you can visit an advice centre like Citizens Advice to get a full benefits check. For more information see our pages on ‘Benefits for people affected by dementia‘.
Think about things that could help you manage your health and finances in the future, such as setting up a Lasting power of attorney . For more details see our pages on ‘Lasting power of attorney‘ , and ‘Enduring power of attorney and controllership‘ .
The Alzheimer’s Foundation Of America
If you are caring for a person with dementia, the Alzheimers Foundation of America is a place to get connected with a support group. The AFA specializes in providing educational and supportive services for people who are caregivers for a person with Alzheimers disease and related dementias.
The organization provides a National Toll-Free Helpline at 866-232-8484, staffed by licensed professional social workers, who are trained to provide answers to questions and point caregivers in the right direction via its 24/7 helpline.
Additionally, the AFA offers free weekly telephone support groups that are professionally facilitated by licensed social workers. AFA provides an opportunity to receive professional help in connecting and sharing with other caregivers across the country.
The groups are held on Mondays and Thursdays, 7 pm8 pm . To register for a caregiver support group, call the AFAs National HelpLine from 9 a.m.-9 p.m. on weekdays and 9 a.m.-3 p.m. on weekends.
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How Can Caregiver Support Groups Help
Caregiving can be an isolating and difficult experience. How can anyone actually understand your emotions unless theyve gone through it themselves? Our caregiver support groups are facilitated by licensed Masters level social workers to help reduce the caregiver isolation, stress, and depression. These sessions are attended by other caregivers who are going through or have been through similar situations.
Our support groups are in a supportive atmosphere where youll find validation for your own experiences. It will be a relief to know what youre going through is normal, and youre not the only person with similar feelings whether positive or negative. Our support groups are the excellent environment for you to share openly without concern of being judged. Most importantly, you can find solutions to your problems not based on what you should do but based on what other caregivers have done to make it through a similar situation or problem.
Simply put, there are no instruction manuals for caring for a loved one with Alzheimers disease. At the same time, being forced to learn everything through trial and error can be trying especially when it comes to someone you love. The best solution is to utilize the caring, structured, and professional support groups for caregivers we offer.
Support For Families And Carers
Family members and friends often find themselves in the role of a carer when a loved one is living with dementia. While caring for your loved one can be rewarding, it can also have its tougher days. As you care for someone with dementia, you may not be taking as much care of your own emotional, mental or physical wellbeing.
Whether youre the husband, wife, partner, daughter, son, brother, sister or friend of the person, your relationship will change. Dementia Australia offers support for families and carers so you dont feel alone.
Services offered through Dementia Australia can help you:
- support the person to live well at home, for as long as possible
- support the person to continue with their hobbies, activities and interests
- learn about dementia, so youre better equipped to manage changes
- access support services and programs to maintain your health and wellbeing.
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When Are Caregiver Support Groups
Currently, our support groups are held virtually due to the COVID-19 pandemic:
- Spousal Caregiver Support Group meets weekly on Tuesdays 1 – 2 pm
- Spousal Caregiver Support Group meets weekly on Thursdays 1-2pm
- Adult Children Caregiver Support Group meets weekly on Thursdays 3-4 pm
- Second Wednesday of each month, meets monthly 3-4pm, in partnership with Long Island Jewish Valley Stream
- Third Thursday of each month, meets monthly 10-11am, in partnership with Northwell Huntington Hospital
If you would like to register or request more information on Caregiver Support Groups contact Melissa Katz, LCSW 767-6856 ext. 14 or firstname.lastname@example.org.
Support From Local Authorities
Local authorities including social services departments and health and social care professionals can help people with dementia and their carers.
Your local authority may provide some or all of the following:
- homecare visits
- respite care
- support from professionals, such as a dementia specialist nurse
- support groups
- information that is tailored to your needs.
You might have to pay for some of these services. Ask your local authority social services department for details. Make sure you get all the support youre entitled to. Youll find more information on the pages ‘Paying for care and support in England‘, ‘Paying for care and support in Wales‘, and ‘Paying for care and support in Northern Ireland‘.
Consider registering as a carer with your local authority. Some local authorities have a Carers Card or Carers Passport scheme. These identify you as a carer and allow you to access support services and other benefits like discounts. Ask your local authority or your GP, or look online for more information.
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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.
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.
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.
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Best Caregiver Support Groups Online And In
If youre responsible for caring for an elderly loved one, caregiver support groups are a way for you and other caregivers to share your experiences, which can include information, insight, advice, or words of encouragement. Whether youre an in-home caregiver, caring for someone with Alzheimers or another form of dementia, or have a family member in an assisted living community, each person in a caregiver support group can learn from others who face similar challenges
Why Join A Support Group
Talking to other people with similar experiences can help reduce your stress, frustration and isolation. Plus, other caregivers often have helpful advice on what worked for them. A support group can provide a safe place to express your own needs and deal with painful emotions, including aggression, anger, mourning and guilt. It is a relief to know youre not alone.
The best groups for caregivers tend to be groups focused on the specific disease that is causing dementia and provide a safe, trusting environment with a clear structure and facilitator. That said, your area may not have a disease-specific support group, yet you might find other caregivers like you in a dementia-related support group. Try the groups that appeal to you and meet your needs. It might help to talk to the facilitator or leader before the first meeting.
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How Can I Join A Closed Facebook Group
You can find comfort in knowing that closed Facebook groups are private. All posts and comments can only be seen by other members of the group. Your activity will not show on your personal Facebook page.
Follow these steps if you are looking to join a closed Facebook group:
Before requesting to join a Facebook group, read the description section. If available, check the special instructions to join or the community guidelines, and assess if this group is the right fit for you.
If at any time you want to after your request has been accepted, there are simple steps you can take to do so.