We know all too well that the journey with Alzheimer’s and dementia is not easy, but it’s helpful to know you are not alone. While there are many resources available to individuals and families facing Alzheimer’s or dementia, it can be hard to know where to begin. However, many find solace in reading about others’ shared experiences and learning about their process after a new diagnosis through books.
The Care & Support Team at the Alzheimer’s Association Washington State Chapter has compiled a list of 7 of their favorite “must-read” books about Alzheimer’s and dementia.
Ice Cream in the Cupboard: A True Story of Early Onset Alzheimer’s
by Pat Moffett
EARLY ONSET ALZHEIMER A LOVE STORY. It started with strange behavior a hostile outburst here, a peculiar lapse of memory there. Then it became violent. The beautiful, vivacious Carmen Moffett was behaving in ways her husband Pat could not understand. Their marriage had been a long love affair. Together, they raised five beautiful children in Great Neck, New York, and were looking forward to planning their retirement together. Then came the outbursts, both verbal and physical, and the forgetting. Confused and increasingly nervous, Pat consulted doctors, but no one could find anything physically wrong with Carmen. Worse yet, she could not remember doing the things that rattled Pat. Finally, several years later, incidents at Carmen s work forced her to another doctor, Gisele Wolf-Klein, who diagnosed the devastating illness. As she slipped away, Carmen reached out for Pat. He was the one she could remember, even if she did not always know exactly who he was. With remarkable grace and an incredibly strong will, Carmen accepted that she was fading, that she would disappear. But through all of it, she managed to reserve three words for Pat. These three words exemplify the theme of their lives together, to this day. (goodreads.com)
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Learning to Speak Alzheimer’s
by Joanne Koenig Coste
Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between care-partners and patients and has proven successful with thousands of people living with dementia.
Learning to Speak Alzheimer’s also offers hundreds of practical tips, including how to
-Cope with the diagnosis and adjust to the disease’s progression
-Help the patient talk about the illness
-Face the issue of driving
-Make meals and bath times as pleasant as possible
-Adjust room design for the patient’s comfort
-Deal with wandering, paranoia, and aggression
“A true godsend to anyone caring for those afflicted with dementia.”—Rudolph E. Tanzi, coauthor of Decoding Darkness: The Search for the Genetic Causes of Alzheimer’s Disease (goodreads.com)
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Still Alice
by Lisa Genova
Still Alice is a compelling debut novel about a 50-year-old woman’s sudden descent into early-onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University.
Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early-onset Alzheimer’s disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what’s it’s like to literally lose your mind… (goodreads.com)
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My Two Elaine’s: Learning, Coping and Surviving as an Alzheimer’s Caregiver
by Martin J Schreiber
Former governor of Wisconsin Marty Schreiber has seen his beloved wife, Elaine, gradually transform from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognizes him as her husband. In My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, Marty candidly counsels those taking on this caregiving role. More than an account of Marty’s struggles in caring for his wife, My Two Elaines also offers sage advice that respects the one with Alzheimer’s while maintaining the caregiver’s health. As two-thirds of those with Alzheimer’s are women, he offers special guidance for men thrust into an unexpected job. With patience, adaptability, and even a sense of humor, Marty shows how love continues for his Second Elaine. (goodreads.com)
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The Validation Breakthrough
by Naomi Feil
Arguing that as the elderly lose contact with the outside world, they turn inward and to the past to work through unresolved emotional issues from their lives, Naomi Feil presents her method for therapeutically dealing with patients with Alzheimer’s and other dementias. (goodreads.com)
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Dementia Beyond Drugs
by G. Allen Power
If you could provide a life more affirming and meaningful than current care practices provide, would you do it? Of course, you would! But how? Now the resource you need to make this possible is within your grasp. Dementia Beyond Drugs will enable you to change the way you provide care. Learn what it takes to effect real culture change within residential care settings while reducing the administration of psychotropic drugs in the symptomatic treatment of dementia. (goodreads.com)
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The 36-Hour Day
by Nancy L Mace and Peter V Rabins
Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the “bible” for families caring for people with Alzheimer’s disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that has made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care. The new edition – new information on diagnostic evaluation
– resources for families and adult children who care for people with dementia
– updated legal and financial information
– the latest information on nursing homes and other communal living arrangements
– new information on research, medications, and the biological causes and effects of dementia (goodreads.com)