LBDA

More Caregiver Resources

General

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 on Aging - is a federally funded site with information about caregiving, working with and providing services to people with dementia, and where to look for support and assistance. 

Alzheimer’s Disease Education and Referral Center (ADEAR) - Current, comprehensive information and resources on dementia from the National Institute on Aging (NIA).

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.

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.

Long Distance Caregiving, by the National Institute on Aging - The booklet is organized in a question/answer format. Each of the 20 commonly asked questions has a brief, stand–alone answer. There’s also a resource list at the end that can help you find more information.

National Association of Professional Geriatric Care Managers - a membership organization of 2,000 geriatric care managers (health and human service specialists who act as a guide and advocate for families who are caring for older relatives or disabled adults). Members must meet stringent education, experience and certification requirements.

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.

VA Special Pensions – Educational resource on benefits available to wartime veterans and their spouses through the Veteran’s Administration.

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. 

End-of-Life

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.

Driving and Dementia

Driving safety is an important issue to be addressed when a person is diagnosed with dementia. LBDA has assembled a number of helpful resources on the topic.

For families:

NIH Senior Health – Older Drivers

For physicians:

Guidelines from the American Academy of Neurology help physicians and families determine when people with dementia should give up driving

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