Additional Resources for Lewy body dementia
The Lewy Body Dementia Association (LBDA) provides resources to help people with Lewy body dementia (LBD), their families, and care partners.
General LBD Resources
Lewy body dementia (National Institute of Neurological Disorders and Stroke)
Provides basic facts about Lewy body dementia, information for care partners, and provides links to a variety of resources.
A 30-page booklet explains potential changes in thinking and memory skills in people with Parkinson’s disease.
Dementia with Lewy Bodies (Family Caregiver Alliance, 2018)
An online fact sheet explains dementia with Lewy bodies, including its symptoms, diagnosis, and treatment, as well as similarities to and differences from other types of dementia.
Care Partner Resources
Articles, videos, and other resources for caregivers are available on this website for older adults. Members have access to certain AARP publications.
Administration for Community Living
A federal agency that supports the needs of older adults.
Alzheimer’s Disease and related Dementias Education and Referral Center (ADEAR)
Find comprehensive information and resources on Alzheimer’s disease and other types of dementia.
This organization represents Aging Life Care Professionals, who work with families to ensure quality care and an optimal life for loved ones.
This organization offers tools, news, networking, and help for family caregivers.
Consumer Financial Protection Bureau
A federal agency that offers easy-to-understand guides for people who manage money or property for a loved one.
Eldercare Locator (U.S. Administration on Aging)
Nationwide directory assistance service helps older people and their caregivers locate local support and resources.
Family Caregiver Alliance (FCA)
FCA provides services to family caregivers of adults with physical and cognitive impairments.
National Adult Day Services Association
Adult Day Services is a system of home- and community-based therapeutic and social services.
Federal agency providing information to support healthy aging.
U.S. Department of Veterans Affairs
Learn about the VA aid and attendance benefit, which helps wartime veterans and family members receive long-term care.
This resource serves spouses and partners who care for loved ones with chronic illness or disability.
Dementia Resources
Resource and advocacy organization for people with Alzheimer’s or other dementias.
Alzheimer’s Foundation of America
The Foundation provides support, services, and education to individuals and families affected by dementia.
Advocating for Dementia-Friendly Airports
Guidance for TSA agents on screening passengers living with dementia.
Association for Frontotemporal Degeneration
Dedicated to improving the quality of life for people affected by frontotemporal dementia.
Movement Disorders Resources
American Parkinson Disease Association
Focuses on research, patient services, education, and support groups.
Dystonia Medical Research Foundation
Information, research news, and support for people with dystonia.
The Michael J. Fox Foundation for Parkinson’s Research
Supports research, patient advocacy, and resources for the Parkinson’s community.
Supports and advocates for people with multiple system atrophy.
Promotes research, outreach, and education on Parkinson’s disease.
Awareness and community for progressive supranuclear palsy and related movement disorders.
End-of-Life Resources
CaringInfo (National Hospice and Palliative Care Organization)
Guides for understanding topics like advance directives and hospice care.
International Neuropalliative Care Society
Dedicated to improving care for neurological disorders using a palliative framework.
Palliative Doctors (American Academy of Hospice and Palliative Medicine)
Helps people understand palliative and hospice care and find a professional team.
Healthcare Professionals
Guidelines from the American Academy of Neurology
Helps determine when people with dementia should give up driving.
International Parkinson and Movement Disorder Society
International society of clinicians and scientists interested in movement disorders.
National Council of Certified Dementia Care Practitioners
Professional dementia certifications for health care employees.
Spanish Resources
Como enfrentar Juntos la DCL (LBDA, 2022)
Introduccion a la demencia por cuerpos de Lewy.
Indicaciones (LBD Diagnostic Symptoms Checklist)
Formulario de síntomas para consultas médicas.
Other Helpful Resources
Brain & Life (American Academy of Neurology)
Information on brain health and brain science in English and Spanish.
COVID-19 and Brain Health (AARP and Global Council on Brain Health, 2021)
Report on the impact of COVID-19 on brain health and mental well-being.
Help Starts Here (National Association of Social Workers)
Directories to search for clinical social workers and psychotherapy resources.
Learn about LBD
Educational resources to assist individuals with LBD, their families and healthcare providers.
