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.

Age With Confidence - offers free weekly audio podcasts on legal, medical, and other issues related to aging.

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. 

Caregiver.com - the Web site of Today's Caregiver, offering links to a broad range of practical caregiving resources.

Caregiver Guide - a comprehensive manual published by the National Institute on Aging especially valuable for new caregivers.

Caregiving.com - a resource created by caregivers for caregivers, offering practical information, easy-to-use tools, and personal support to caregivers.

Caring.com - offers advice from trusted experts in geriatric medicine, legal matters, finances, housing, and family issues, as well as community support from other caregivers.  

Children of Aging Parents - provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer’s disease also may find this information helpful.

Dementia Care Central - offers information on coping with common problems in dementia, managing financial and legal issues, providing hands-on care, finding short- and long-term care and living options, and caring for the caregiver.

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.

Family Caregiver Alliance - The National Center on Caregiving - offers programs at national, state, and local levels to support and sustain caregivers.

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.

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.

Advanced Directives - a Caring Connections site with state-specific advanced directives.

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.

Blogs and Web sites by LBD Families

To families facing LBD, it’s invaluable to hear from other people who have lived with LBD. Not only is it educational, but it can be comforting to hear how others are facing LBD’s challenges with dignity and humor.

The following personal Web sites and blogs have been recommended by LBD caregivers. If you know of a great site that tells the story of living with or caring for someone with LBD, please send it to us using the email form below.

Featured Sites
(in alphabetical order)

Lewy Body Dementia - One family's journey with LBD

Lewy Body Dementia, Dad and Me - A daughter's diary of caring for her father

Thomas Graboys, MD - Author of Life in the Balance: A Physician’s Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia

A Psychiatrist with LBD - Dr. David Thomas' blog about his personal LBD diagnosis

More Personal Sites
(in alphabetical order) 

The Caregiving Calling - A retired pastor writes cares for his wife with Parkinson's disease

Doing Dementia: A Daily Journey with Lewy Body - A daughter’s journey of caring for her mother, who passed away in April 2008 from Lewy body dementia

Lewy Body Journal - A family’s story of LBD, from the earliest detectable symptoms through the passing of their mother in 2006

Life with Dad - A blog dated from 2004 and 2005 about the sandwich generation – caring for a parent with dementia while also raising your own children

Living With Lewy Body - The story of a former professor diagnosed with Lewy body dementia in 2008 and his family

Living with Lewy Body ebook - A couple’s story of caregiving for a father with LBD who passed away in 2008

My Journey - A man’s blog about his life with possible Alzheimer’s or Lewy body dementia

The Pragmatic Caregiver - A blog on caregiving for an elderly parent, written from the perspectives of two self-described engineering-and-technology types

Rocky Mountain Writer - A writer’s blog that has a section exclusively for LBD