10 Resources for Parkinson’s Disease Dementia
Many people with Parkinson’s disease eventually develop changes in memory and thinking. When those changes become serious enough to affect daily life, doctors call it Parkinson’s disease dementia. It is closely related to dementia with Lewy bodies, and together they are known as Lewy body dementias. Symptoms can include slowed thinking, trouble with attention and planning, visual hallucinations, sleep problems and changes in mood, along with the movement symptoms of Parkinson’s.
No family should have to figure this out alone. Here are ten trusted resources for information, support and care.
1. Parkinson’s Foundation Helpline
The Parkinson’s Foundation Helpline connects you with Parkinson’s specialists who can answer questions about symptoms, treatment, dementia and caregiving, and point you to local resources. Call 1-800-4PD-INFO (1-800-473-4636). The Foundation also offers resources for care partners.
2. The Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson’s Research funds research and offers easy-to-read guides, webinars and podcasts on living with Parkinson’s, including thinking and memory changes. It also helps people find clinical studies to join.
3. American Parkinson Disease Association, Florida Chapter
The APDA Florida Chapter provides education programs, exercise classes, support groups and events across the state, including groups for care partners.
4. Lewy Body Dementia Association
Because Parkinson’s disease dementia is a form of Lewy body dementia, the Lewy Body Dementia Association is a valuable resource. It offers information on symptoms and treatment, caregiver guides, support groups and a helpline for families.
5. UF Health Fixel Institute for Neurological Diseases
Close to home in Gainesville, the UF Health Fixel Institute is designated a Parkinson’s Foundation Center of Excellence. Its team of movement disorder specialists, neuropsychologists, therapists and social workers cares for people at every stage of Parkinson’s.
6. Alzheimer’s Association
The Alzheimer’s Association supports families facing every kind of dementia, not just Alzheimer’s. Its free 24/7 Helpline at 1-800-272-3900 offers guidance on behavior changes, care planning and caregiver stress.
7. National Institute on Aging
The National Institute on Aging’s Lewy body dementia pages offer free, research-based information on diagnosis, treatment and caregiving, written for families.
8. Family Caregiver Alliance
Family Caregiver Alliance offers fact sheets, online support groups and practical advice for family caregivers, including tips on managing stress and planning for long-term care.
9. Florida Elder Helpline
Call 1-800-96-ELDER (1-800-963-5337) to reach your local Aging and Disability Resource Center through the Florida Department of Elder Affairs. They can help with in-home services, respite care, caregiver support programs and screening for Florida Medicaid’s long-term care program.
10. ClinicalTrials.gov
ClinicalTrials.gov, run by the National Library of Medicine, lists research studies on Parkinson’s disease and Lewy body dementia, including studies in Florida. Talk with your doctor about whether a trial might be a good fit.
When more care is needed
As Parkinson’s disease dementia progresses, people often need help with safety, medications, mobility and daily routines around the clock. A memory care home with caregivers trained in dementia can help, while families stay closely involved.
Generations Senior Living is not affiliated with these organizations. Phone numbers and programs may change; check each website for current information.
Have questions about memory care for someone you love? Call Generations Senior Living at (352) 474-2696 or schedule a tour of one of our three homes near The Villages.
