Having a written source of best practices, stories, and experiences from those who’ve been there can be enriching and useful to add to one’s set of skills.
The list here comprises scientific, medical books as well as fictional accounts that have inspired, counseled and influenced those who participate in the selfless actions of encouraging the well-being of those living with Alzheimer’s or dementia.
For instance, there is a wonderful, practical Canadian book called Doris Inc.
Author Shirley Roberts struggled mightily when she was first thrust into the role of caring for her mother Doris, who was suffering from Alzheimer’s Disease. But instead of throwing up her hands in surrender, she went to work on a solution.
She and her brother, both business school graduates, developed a model to help cope with the situation. The result is detailed in Doris Inc.: A Business Approach to Caring for Your Elderly Parents (Wiley, 2012), a one-size-fits-all process on how to provide top-notch care without burning yourself out.
Doris Inc. sets the bar high. It’s not just strategy; Shirley Roberts constantly refers back to her mother, so that the information resonates with warmth. But there are many other approaches that will appeal to different readers, at different stages on the caregiving path.
The Bear Came Over the Mountain
Nobel Prize winner Alice Munro’s short story The Bear Came Over the Mountain appears in her collection Hateship, Friendship, Courtship, Loveship, Marriage. It follows the lives of an elderly married couple who struggle to maintain the connection in their imperfect yet loving marriage, after the wife, Fiona, is diagnosed with Alzheimer’s.
Fifty-year-old Alice Howland has been living what she deems a successful life: she is married with children, and has a strong career and a home on the Cape. But with the onset of her Alzheimer’s, she struggles to maintain her lifestyle. As her mind begins to change, she starts to wonder, is she still Alice? Author Lisa Genova, who holds a Ph.D in neuroscience from Harvard University, draws from her personal experience in this deeply touching novel.
Jake feels as though he’s lost everything. His wife has died, his son is in jail and his mind is slipping away as a result of his Alzheimer’s. As he struggles to hold on to the memories he still has, Jake tries to look back on his life: he wonders where his daughter is, he questions how his son took such a bad turn, he questions how much he is responsible. All the while, he is distracted by the images of a cherry tree and a red dress—though he can’t remember their meaning. This novel by Samantha Harvey is a story of fear, reflection and redemption.
Codi Noline returns to her hometown of Grace, Arizona, to find that things are at once exactly as she remembers, and unfathomably different. Now, her father is living with Alzheimer’s disease. While he is still self-sufficient, things are changing. And so too is Codi’s relationship to her family and her hometown. Animal Dreams by Barbara Kingsolver is a story of finding oneself, and navigating changing relationships with loved ones.
by Jonathan Franzen At once devastating and hilarious, The Corrections is the story of a dysfunctional family struggling to spend one last Christmas together. The book is not specifically about Alzheimer’s: Franzen explores a number of themes, from his take on the power struggles within American families, to his sharp critique of capitalism. But through his character Alfred Lambert—a man increasingly affected by dementia—Franzen humanizes the disease, treating it with compassion.
Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias
Created in partnership with the Alzheimer’s Association, this book by Amy Newmark and Angela Timashenka Geiger includes 101 stories to help caregivers learn about and cope with a loved one’s AD or dementia. Other caregivers share their personal stories about everything from learning to accept diagnoses, to coping with early-onset, to helping grandchildren understand. All royalties go to the Alzheimer’s Association.
Doris Inc.: A Business Approach to Caring for Your Elderly Parents
Proven strategies for finding balance in your life and career while maximizing the quality of life for an elderly person. Using her business prowess, author Shirley Roberts, with the help of her financial advisor brother, developed Doris Inc., a system to maintain their lives and careers while ensuring that their mother received top-notch care.
Healthy Starts Right Here!
Geared toward busy families, Health Starts Right Here! by Mairlyn Smith features recipes for both classic favorites and new spins on old standbys.
Understanding difficult behaviors: Some Practical Suggestions for Coping with Alzheimer’s Disease and Related Illnesses
Caregivers can use this book by A. Robinson, B. Spencer, and L. White as a resource in order to better understand challenging behaviours. The book covers why difficult behaviours happen, and offers practical advice on how to communicate and cope. It has been recommended by the American Alzheimer’s Association, Family Caregiver Alliance and the NC Department of Health and Human Services.
Alzheimer’s Disease: Unraveling the Mystery
Anyone interested in this book can download it as a free PDF from the National Institutes of Health or order a print copy from the NIH’s website. The book covers the similarities and differences between health aging brains, and those affected by Alzheimer’s. It gives a detailed roundup of research about diagnostics and treatment, and explores the need to better caregiver supports, particularly for those who are family members.
The Forgetting. Alzheimer’s: Portrait of an Epidemic
by David Shenk This book is an accessible look at the history of Alzheimer’s and dementia research. NPR commentator David Shenk’s book explores the history of Alzheimer’s and the nature of memory. He looks at the historical and evolving roles of researcher, caregivers and policymakers in treating the disease, and gives examples of household names who have lived with it.
Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers
by Daniel Kuhn and David A. Bennett For caregivers beginning to deal with Alzheimer’s in a loved-one, this book focuses specifically on the early stages of the disease. Its goal is to help carers cope with cognitive and behavioural changes in their loved ones. It provides information about how to deal with the stress of caregiving, and a section filled with first-person accounts from other family members and caregivers who have dealt with dementia.
The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems
by P. Murali Doraiswamy; Lisa Gwyther This book offers a wealth of information on different types of diagnosis and treatment methods. It also recommends strategies for how to cope after diagnosis, including a detailed guide to what to expect during different stages of Alzheimer’s.
Tangles: A story about Alzheimer’s, my mother and me
This may be one of the only graphic novels out there that deals specifically with Alzheimer’s. Sarah Leavitt captures the changes Leavitt’s family endures as they watch her fiery, quick-witted mother fade into a forgetful, fearful woman. Through her simple black-and-white illustration and candid prose, Leavitt her denial, anger and frustration, as she and her family learn to cope, and how to find moments of happiness.
The Story of my Father
by Sue Miller In the decade following her father’s death, Miller attempted to write this memoir three times. In the book, she ultimately details her struggle watching her father, once a devoted church historian, ironically become confused by time and chronology. Miller’s memoir shows the evolution of her thinking about the disease, and how she finally makes peace with her ever-changing relationship to her father.
The Last of His Mind: A Year in the Shadow of Alzheimer's
by John Thorndike Joe Thorndike worked as a managing editor at Life magazine, at the peak of its popularity following the Second World War. He edited dozens of books, wrote three of his own, and helped to found American Heritage and Horizon magazines. Then, at 92, he suddenly lost his ability to read, write and carry out nuanced conversations in the span of six months as a result of Alzheimer’s. Thorndike’s greatest wish was to stay living in his home. After moving in to the upstairs bedroom of his father’s house, Thorndike’s son John sifts through filing cabinets, photos and letters to piece together his father’s mind, his mother’s secrets and the truth about their divorce.
Remembering the Music, Forgetting the Words: Travels With Mom in the Land of Dementia
As a young adult, author Kate Whouley often felt she had to care for her eccentric mother, Anne – an accidental feminist with a weakness for alcohol and unreliable men. Decades later, when Anne begins to develop Alzheimer’s, Whouley must return to the caregiver’s role. Using humour and candour, Whouley captures the healing of her fractured mother-daughter relationship. She works to let go, insisting that Alzheimer’s doesn’t always have to be the “long goodbye” everyone fears.
Through the Wilderness of Alzheimer’s: A Guide in Two Voices
by Robert and Anne Simpson In this 1999 book, husband and wife Robert and Anne Simpson share their experiences from each of their perspectives after finds out he has Alzheimer’s disease. The book uses conversations, journal entries, letters and prayers to show their journey from onset to diagnosis to treatment.
Jan's Story: Love Lost to the Long Goodbye of Alzheimer’s
by Barry Petersen Petersen, a CBS news correspondent spent his life covering difficult stories—from wars, to genocides, to natural disasters—still he was unprepared for the struggle of caring for his wife, Jan, after she was diagnosed with early-onset Alzheimer’s at 55. Jan, also a journalist, had travelled the world throughout her career. As her Alzheimer’s progressed, and her personality changed drastically, writing Jan’s Story is how Petersen coped.
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