Lewy-Specific Grief Support
Life After Lewy Online Forum
This is a private online forum for people who have lost someone to Lewy body dementia. Members can post messages and respond to others. There are over 150 members.
To learn and request to join, visit this link: https://groups.io/g/LifeafterLewy
Beyond Lewy Facebook Group
This is a private Facebook group for people who have lost a loved one to Lewy body dementia. About 1,400 members from across the U.S. are part of this group. Members can share posts and offer support. LBDA staff also monitor the group and share helpful resources.
To learn more and request to join, visit this link: https://www.facebook.com/groups/lbdabeyondlewy/
Virtual Grief Support Group for Former Lewy Caregivers
Hosted by the Lewy Body Dementia Resource Center (LBDRC)
This free virtual group is for former caregivers who have lost someone to Lewy body dementia. The group meets on Zoom twice a month.
When: 1st and 3rd Tuesday every month,
Time: 1:00-2:00PM Eastern Time
To learn more and register, email Norma Loeb with the LBDRC at: norma@lbdny.org.
Other Dementia Grief Resources
Alzheimer’s Association Support Group Search Tool
The Alzheimer’s Association offers many support groups across the country. Some are in person. Others are online. You can search for grief groups for former caregivers by typing the word “grief” into their search tool. There are currently 11 virtual grief groups available.
To learn more, visit:
https://www.alz.org/event-search?query=grief&category=Support+Groups
General Grief Resources
Center for Prolonged Grief
The Center for Prolonged Grief studies and supports people with long-lasting grief, sometimes called prolonged grief. Prolonged grief is when grief causes you to feel stuck and makes daily life difficult.
The center offers:
- Educational webinars
- A short self-assessment to see if you may be experiencing prolonged grief
- A list of therapists trained in prolonged grief across the U.S.
To learn more, visit:
https://prolongedgrief.columbia.edu/
To find a therapist trained in prolonged grief, visit:
https://prolongedgrief.columbia.edu/find-a-therapist-contact-us/
Center for Loss & Life Transition
The Center for Loss & Life Transition provides education and support after loss.
They offer:
- Webinars and workshops
- Books and other grief resources
To learn more, visit: https://www.centerforloss.com/
GriefShare
GriefShare is a nationwide network of grief support groups. Groups meet in person and online. Most groups run for 13 weeks.
Topics include:
- Common feelings during grief
- Ways to cope
- Building resilience
These groups are not specific to dementia, but many people find them helpful.
To learn more and find a group near you, visit: https://www.griefshare.org/
HealGrief
HealGrief is a nonprofit that offers online grief support.
They provide:
- Podcasts
- Webinars
- Online classes
- A mobile app for support on the go
To learn more, visit: https://healgrief.org/
National Hospice Foundation
The National Hospice Foundation offers free grief guides and written resources. Some materials are designed for former dementia caregivers.
To learn more, visit: https://hospicefoundation.org/category/grief/
What’s Your Grief?
What’s Your Grief is an online grief education and support platform.
They offer:
- Articles about grief
- Online communities
- Courses
- A bookstore
To learn more, visit: https://whatsyourgrief.com/
Other Recommended Resources
Hospice Programs
If your loved one received hospice care, you may qualify for free grief counseling or support groups. Contact the hospice provider to ask about services. If your loved one did not receive hospice care, local hospice programs often offer events and grief groups that are open to the public.
Finding a Grief Therapist
If you would like one-on-one counseling, you can search for a grief therapist in your area. You can use an online search or visit the Psychology Today website to search by your ZIP code:
https://www.psychologytoday.com/us/therapists/
“988” Crisis and Suicide Hotline
If you’re struggling and you need crisis support, dial 988 to get connected to a crisis center near you. It’s always best to call, even if you’re not completely sure you need the support. The support personnel on the line are always ready to help