Resources for Alzheimer's Support

This following list represents some of the major resource sites for information on Alzheimer's disease and other dementias associated with aging. Your local library, government sources, private foundations such as the Kaiser Family Foundation, and internet search engines such as Google will reveal more. 

Alzheimer's Association

http://www.alz.org/

24 hour hot line telephone: 800-372-3900

The Alzheimer's Association is a world leader in Alzheimer research and support and is the first and largest voluntary health organization dedicated to finding prevention methods, treatments, and an eventual cure for Alzheimer's. Alzheimer services and support for patients and caregivers are located in all states including U.S. territories.

Alzheimer's Disease and Education Referral Center (ADEAR)

https://www.nia.nih.gov/health/alzheimers

ADEAR was created by the National Institutes of Health in 1990 to compile and disseminate the most current information about Alzheimer' disease to health professionals, patients, and their families.

Toll free numbers are 1-800-222-2225 and 1-800-438-4380

National Institute of Mental Heath

http://www.nimh.nih.gov   

The National Institute of Mental Health is the largest federal agency devoted to research into the prevention, recovery, and cure of mental illnesses. Its Website contains detailed information on all mental illnesses currently under research.

National Institute of Neurological Disorders and Strokes (NINDS)

http://www.ninds.nih.gov/

NINDS is the leading federal agency that supports and conducts research on the healthy and diseased brain, spinal cord, and peripheral nerves. Some of the more common disorders afflicting the nervous system that the NINDS investigates include Parkinson's disease, Alzheimer's disease, multiple sclerosis, stroke, epilepsy, and autism.

Caregivers Support Services

The American Medical Association has published a caregiver self-assessment tool for people who are caring for a person with Alzheimer's disease. The impetus for developing such a tool is to help identify caregivers who are at risk from developing physical and mental health disorders as a result of the daily demands of care. The Caregiver Self-Assessment tool can be obtained in multiple languages from the American Medical Association among other sites.

REACH (Resources for Enhancing Alzheimer's Caregiver Health)

REACH makes it possible for people with Alzheimer's disease to live at home longer by empowering and equipping caregivers with the proper education and resources. Many caregivers sacrifice their own health and well-being to look after their loved one during the long trajectory of Alzheimer's disease. REACH provides education and counseling to help caregivers manage the many stresses that are encountered in day-to-day care. REACH also provides one-on-one dementia care specialists to help caregivers deal with challenging behaviors, home safety, depression, and self-care.

Please check with your state to locate the toll-free number of your local REACH office.

The Fisher Center for Alzheimer's Research Foundation

Located at Rockefeller University in NYC, the foundation is dedicated to finding the cause of Alzheimer's disease and to public education about the disease. Its website contains information for the layperson and resources for people and families dealing with Alzheimer's disease. For access you may go to their website at http://www.alzinfo.org/.

U.S. National Library of Congress. Pub Med Health.

PubMed is a publication of the U.S. National Library of Congress containing information on the all the disease conditions that are known to medical science. It publishes research into the cause and treatment of diseases.

Information can be obtained by mail from:

U.S. National Library of Congress

8600 Rockville Pike

Bethesda, MD 20898

Or from their Website at:

https://pubmed.ncbi.nlm.nih.gov/

Alzheimer's Books

The following books are only a few of many that discuss Alzheimer's disease and its effect on individuals, families, and society.

A Better Way of Dying written by a physician Dr. Jeanne Fitzpatrick and a lawyer Dr. Eileen Fitzpatrick and published by Penguin Books in 2010 provides a framework for the difficult ethical and legal problems encountered in end-of-life care. It contains useful information about how to put in writing end-of-life wishes and defines terms that are often used interchangeably but have different ethical and legal meanings.

Alzheimer's in America: The Shriver Report on Women and Alzheimer's is a compilation of essays and reports edited by Maria Shriver and the Alzheimer's Association published by Simon and Shuster in 2011. It discusses the latest Alzheimer research on prevention and cure, and most importantly examines the effect of caregiving on society and in particular women who are the primary caregivers for all older adults who need help in living independently.

Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia was written by Nancy Pearce a licensed medical social worker who specializes in working with persons with dementia. It was published in 2007 by Forrason Press in Taylors, SC. It contains Ms. Pearce's personal experiences over the course of her practice career and her teaching.

Passages in Caregiving by Gail Sheehy was published in 2010 by William Morrow and describes her caregiving journey during the time her husband was treated for terminal cancer. Like Kubler-Ross' stages of grief, Sheehy sketches out the passage from disbelief and shock to acceptance. It is a personal account of the toll of caregiving for those we love who cannot care for themselves as life ends. There is also a chapter on dementia. The appendix to this book contains many helpful resources for use by caregivers.

Still Alice (2008) by Lisa Genova, published by Pocket Books, is the story of Alice Howard, a Harvard psychology professor, who first shows signs of Alzheimer's disease when she loses her Blackberry, gets lost on familiar routes, and forgets appointments. The story is told from Alice's point of view. This book is also available as a sound recording (CD).

The Forgetting: A Portrait of Alzheimer's was written by David Strenk in 2001 and published by Anchor Books. It was made into a documentary by Public Broadcasting Company. Both the book and the television documentary discuss the disease's causes, course, and treatment and its effect on people, and their families. 

The 36 Hour Day: A family Guide to Caring for People with Alzheimer's disease, other Dementias, and Memory Loss in Later Life (2006) is the fourth edition of a book written by Nancy L. Mace and Peter V. Rabins published by Johns Hopkins University Press. It is considered an excellent source for information about family caregiving.

The Troubled Man (2011) was written by Henning Mankel and tells the story of Kurt Wallender, a talented policeman, whose last case is marred by Kurt's inexplicable lapses of memory. As he struggles with solving a complicated and intellectually challenging crime, he begins to understand that something is not right with the way his brain is functioning.

Alzheimer's Videos

A search of the Internet will reveal the many numbers of films and documentaries on Alzheimer's disease that have been made over the last several decades. The following is a sample of documentaries available on PBS, HBO, and other TV channels, and a few of the commercial films, which reveal the struggles of people and caregivers as Alzheimer's disease takes over their lives.

Alive Inside (2014) is a documentary that explores the healing power of music. It follows numerous visionaries in healthcare including social worker Dan Cohen, founder of the nonprofit organization Music & Memory, as he fights against a broken healthcare system to demonstrate music’s ability to combat memory loss and restore a deep sense of self.

Alzheimer's Disease: Facing the Facts (2009) is a documentary about Alzheimer's disease including current research and the problems in funding.

Alzheimer's: Every Moment Counts (2017) is a PBS documentary meant to be urgent wake-up call about the national threat posed by Alzheimer’s disease, one of the most critical public health crises facing America. The film illuminates the social and economic consequences for the country unless a medical breakthrough is discovered.

Away from Her (2006) directed by Sarah Pollay is a film about a woman who turns away from her husband and marriage as her symptoms of Alzheimer's disease worsen and she enters a long-term care facility. Available on DVD.

Can Alzheimer's be Stopped? (2016). A Nova production that aired on April 13, 2016 on PBS that discusses the biology and chemistry of the disease and the latest research findings.

Iris (1990) directed by Richard Eyre follows the true events of Iris Murdock, an intellectual, philosopher, and novelist who loses all sense of herself as she moves through the stages of Alzheimer's disease. The portrait of a marriage under stress is handled well. Available on DVD.

Iron Lady (2012) stars Meryl Streep in a portrait of Prime Minister Margaret Thatcher's struggle with dementia in the years after resigning from Parliament in 1990. Available on Blue Ray and DVD.

Poetry (2010) directed by Chang-dong Lee is the story of a South Korean grandmother who is diagnosed with Alzheimer's disease, but because of life's circumstances must find her way toward solving the problems of a wayward grandson and an indifferent daughter by herself. She does it through poetry, compassion, and determination to live life fully despite her encroaching symptoms. Available on DVD.

Still Alice (2014) is a movie based on the novel Still Alice. It is available in DVD for rent or from Netflix and streaming.

The Alzheimer's Project (2009). Produced by HBO is based on the work done by Maria Shriver and the Alzheimer's Association containing a number of essays by people directly affected by the disease and experts in the treatment and study of this disease. The project includes four documentaries and 15 short films.

The Forgetting: A Portrait of Alzheimer's (2004) is described under books and can be seen on the PBS Website and is available in a DVD.