Additional Resources
LBDA is working to provide relevant resources to assist Lewy body dementia patients, their families, and physicians. It is our aim to make LBD as common a term as Alzheimer’s some day. Here you will find additional resources to assist you.
Other Resources | Caregiver Resources
COVID Resources
The Global Council on Brain Health (GCBH) has released a Special Edition report COVID-19 and Brain Health: The Global Council on Brain Health’s Recommendations on What to Do Now. The report discusses the impact of coronavirus on the brain as well as indirect effects on mental well-being due to social isolation. Download the report and infographic here.
Links to Other LBD Resources
Español
Como enfrentar Juntos la DCL
Introducción a la demencia por cuerpos de Lewy
Indicaciones
Coloque una marca de verificación junto a cualquier síntoma nuevo o que le
preocupe relacionado con la demencia por cuerpos de Lewy. Escriba sus
comentarios o preguntas para el médico en el campo de comentarios. Lleve este
formulario a su próxima consulta o envíelo al médico con anticipación.
Lewy body dementia: Information for Patients, Families, and
Professionals
A 40-page booklet that helps people with LBD, their families, and
professionals learn more about the disease and resources for coping. Developed
in collaboration with LBDA, published by the National Institutes of Health.
Navigating Cognitive Changes in Parkinson's Disease
A 30-page booklet by the Michael J. Fox Foundation on the potential changes in
thinking and memory skills in Parkinson's disease.
Mind, Mood & Memory (PDF)
A 100-page booklet from the National Parkinson's Foundation on Lewy body
dementias.
Dementia with Lewy Bodies
From the Family Caregiver Alliance, National Center on Caregiving.
Lewy Body Society
A British LBD charity dedicated to raising awareness of dementia with Lewy
bodies (DLB) in the general public and educating medical professionals and
decision makers about all aspects of the disease, and to support research.
The Movement Disorder Society
An international society of medical professionals interested in movement
disorders.
National Institute of Neurological Disorders and Stroke
This page covers basic facts about Lewy body dementia and provides links to
relevant professional organizations.
Advocating for Dementia-Friendly Airports
TSA agents in airports across the nation were given guidance on screening
passengers living with dementia and their care partners/traveling companions.
More Caregiver Resources
General
AARP — Commentary, video, and other resources on caregiving from Gail Sheehy, author of Passages and other best-selling books on aging and caregiving.
Administration for Community Living — Supports the needs of the aging and disabled populations, and improves access to health care and long-term services.
Alzheimer’s Disease Education and Referral Center (ADEAR) — Current, comprehensive information and resources on dementia from the National Institute on Aging (NIA).
Aging Life Care Managers — Professional expertise and knowledge about the costs, quality, and availability of resources in local communities to help families navigate the aging process. Includes a nationwide directory of Aging Life Care Professionals.
Find an Aging Life Care Expert
American Academy of Neurology (Patient site) — Searchable database to help find a neurologist, including filters for key sub-specialties like dementia and movement disorders.
Bureau of Consumer Financial Protection — Guides for managing money for those you care for.
Caregiver Guide — A comprehensive manual published by the National Institute on Aging, especially valuable for new caregivers.
Eldercare Locator — Nationwide directory assistance service helping older people and their caregivers locate local support and resources. Funded by the U.S. Administration on Aging.
Help Starts Here — Online directories to jump start your search for the right therapist, listing clinical social workers, psychologists, psychiatrists, and other licensed mental health professionals.
National Adult Day Services Association — Guidance on how to find and choose a day center for adults, with a searchable database of 5,000 providers by ZIP code.
National Family Caregivers Association — Educates, supports, empowers and advocates for family caregivers.
National Institute on Aging — The primary federal agency supporting and conducting Alzheimer's disease research; provides extensive educational content on aging issues.
National Institute on Neurological Disorders and Stroke — Supports and conducts research on the nervous system; provides overviews on many neurological disorders.
Veterans Affairs — Aid & Attendance/Housebound
The Well Spouse Association — National nonprofit providing peer support to those caring for a chronically ill or disabled spouse/partner.
Dementia
Alzheimer's Association — Dementia information and local support groups.
Alzheimer's Disease International — Alzheimer's chapters in many countries.
Alzheimer's Europe — Overview of the different types of dementia.
Alzheimer's Foundation of America — Focuses on dementia care; holds events and screenings in November.
The Association for Frontotemporal Degeneration — Resource for information and support on frontotemporal degeneration.
Driving and Dementia
Driving safety is an important issue to be addressed when a person is diagnosed with dementia.
For physicians: Guidelines from the American Academy of Neurology — Help physicians and families determine when people with dementia should give up driving.
End-of-Life
Planning for the end of life can be a valuable activity for any family. The links below offer general guidance and suggestions for families who face the burden of a disease such as Lewy body dementia.
Caring Connections — Consumer website about hospice and palliative care managed by the National Hospice and Palliative Care Organization.
Palliative Doctors — Consumer website managed by the American Academy of Hospice and Palliative Medicine about palliative care.
Movement Disorders
American Parkinson's Disease Association — Focuses on research, patient services, education, and raising public awareness.
Dystonia Medical Research Foundation — Medical research foundation.
Michael J. Fox Foundation — Dedicated to ensuring the development of a cure.
The Movement Disorder Society — International society of medical professionals interested in movement disorders.
MSA Support Group — Multiple System Atrophy (MSA) / Shy-Drager resources.
National Parkinson Foundation — Promotes research, outreach, and education on Parkinson's disease.
PSP Society — Society for Progressive Supranuclear Palsy (PSP); local support groups.
Other
Area Agencies on Aging — Local resource information and Ombudsmen.
Family Caregiver Alliance — Information including availability of local resources (by state), caregiving tips, and end-of-life issues.
MedlinePlus — Patient issues and resource links.
National Council of Certified Dementia Care Practitioners — Alzheimer's training, dementia training, and professional dementia certifications for health care employees and staff.
National Hospice and Palliative Care Organization (NHPCO) — The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States.
NORD — National Organization for Rare Disorders.
Learn about LBD
Educational resources to assist individuals with LBD, their families and healthcare providers.
