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 as a term as Alzheimer’s some day. Here you will find some additional resources to assist you.
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
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 Institute of Health.
A 30 page booklet by the Michael J. Fox Foundation on the potential changes in thinking and memory skills in Parkinson’s disease.
A 100 page booklet from the National Parkinson’s Foundations on Lewy body dementias.
From the Family Caregiver Alliance, National Center on Caregiving.
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.
An international society of medical professionals interested in movement disorders.
This Web page covers basic facts about Lewy body dementia and provides links to relevant professional organizations.
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
AARP– offers a site with commentary, video, and other resources on caregiving from Gail Sheehy, author of Passages and other subsequent best-selling books on aging and caregiving.
Administration for Community Living– support 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® bring their professional expertise and extensive knowledge about the costs, quality, and availability of resources in their communities to help families and their loved ones successfully navigate the aging process. For more information or to access a nationwide directory of Aging Life Care Professionals®.
American Academy of Neurology (Patient site) – Has a searchable database to help find a neurologist. Includes filters for key sub-specialties like dementia and movement disorders.
Bureau of Consumer Financial Protection – This resource has guides for managing money of those you care for.
Caregiver Guide– a comprehensive manual published by the National Institute on Aging especially valuable for new caregivers.
Eldercare Locator – is a nationwide directory assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging.
Help Starts Here– features online directories to help jump start your search for the right therapist. These sites list thousands of clinical social workers, psychologists, psychiatrists and other licensed mental health professionals.
National Adult Day Services Association – a membership organization of adult day service providers, and provides guidance on how to find and choose a day center for adults. Their website includes a searchable database of 5,000 providers by zip code.
National Family Caregivers Association– educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness, disability, or the frailties of old age. The association reaches across the boundaries of diagnoses, relationships, and life stages to help transform family caregivers’ lives by removing barriers to health and well being.
National Institute on Aging– NIA leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life and is the primary Federal agency supporting and conducting Alzheimer’s disease research. Provides a wealth of educational content on aging issues.
National Institute on Neurological Disorders and Stroke– NINDS supports and conducts basic, translational, and clinical research on the normal and diseased nervous system. The Institute also fosters the training of researchers and seeks better understanding, diagnosis, treatment, and prevention of neurological disorders. Provides overviews on a wide variety of neurological disorders.
The Well Spouse Association – The Well Spouse Association is a national 501(c)3 non-profit providing peer support to those caring for a chronically ill or disabled spouse/partner. They offer face-to-face support groups, a bimonthly member-written newsletter, telephone support, Facebook closed group, respite weekends and a national conference, as well as a few other member benefits.
Alzheimer’s Association – Dementia information and local support groups.
Alzheimer’s Disease International – Alzheimer’s chapters in many countries.
Alzheimer’s Europe – A good overview of the different types of Dementia.
Alzheimer’s Foundation of America – The organization focuses on Dementia care, and holds candle lighting and Dementia screening events 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.
Guidelines from the American Academy of Neurology help physicians and families determine when people with dementia should give up driving
Planning for the end of life can be a valuable activity for any family. The links below offer general guidance and some specific suggestions for families who face the burden of a disease such as Lewy body dementia.
Caring Connections– home page of consumer Web site about hospice and palliative care managed by the National Hospice and Palliative Care Organization.
Palliative Doctors– a Web site for consumers managed by the American Academy of Hospice and Palliative Care about palliative care.
American Parkinson’s Disease Association – Focuses on research, patient services, education and raising public awareness.
Dystonia Medical Research Foundation – A medical research foundation.
Michael J. Fox Foundation – Dedicated to ensuring the development of a cure.
The Movement Disorder Society – An international society of medical professionals interested in movement disorders
MSA Support Group – Multiple Systems Atrophy: MSA / Shy-drager
National Parkinson Foundation – Promotes research, outreach and education on Parkinson’s disease
PSP Society– Society for Progressive Supranuclear Palsy (PSP); local support groups
Area Agencies on Aging – Local resource information & Ombudsmen.
Family Caregiver Alliance – Excellent site for information including availability of local resources (by state), caregiving tips, and end of life issues.
Medline Plus – Patient Issues – Resource Links
National Council of Certified Dementia Care Practitioners – Alzheimer’s Training, dementia training and professional dementia certifications for all health care employees and line 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 Diseases