6 Books for Alzheimer's & Dementia Caregivers

By Michelle Cemental

Caring for a senior with Alzheimer's or dementia is a demanding task. To make caring for a loved one easier, we have compiled a list of amazing books that can help family and professional caregivers alike. Many of these books are written from the perspective of a caregiver and can provide insight to help you. 

1. The Inheritance by Niki Kapsambelis

Kapsambelis captures the reality of Alzheimer's disease, simultaneously telling the story of the DeMoes family and their battle with the disease and instructing readers about the disease. Beyond the symptoms, Kapsambelis dives into the human reality of how those symptoms affect the lives of those around them. Kapsambelis educates about the statistics, treatments, and realities of living with Alzheimer's and gives outsiders a window into the lives of those who live this reality every day.

This book is effective at raising awareness about the disease and creating an appreciation of what those who deal with this disease experience. From treatment options to heredity, Kapsambelis provides a comprehensive look at Alzheimer's and its devastating effects. Perhaps the biggest benefit of The Inheritance is that readers can walk away with knowledge, hope, and a feeling that they are not alone.

2. Fractured Memories by Emily Page

Using an elephant as her symbol of dementia, Emily Page turns to art and words to get through the diagnosis of her father in 2009. She recounts the heartbreaking realities and sheds light and laughter where she can. Page, being a young caregiver, fills 118 pages with the ups and downs as her father progresses with the disease. She documents the emotional journey, including insights to the personal fear of dementia it created for herself, as well as her father's transition in everyday tasks.

Her father was a jazz musician before being diagnosed with frontotemporal dementia. FTD is a degenerative disease that causes progressive nerve damage in the cells behind the frontal or temporal lobes. This form of dementia, as Page describes in her book, progresses more rapidly than Alzheimer's with no current treatment to slow the process.

3. Strange Relation: A Memoir of Marriage, Dementia, and Poetry by Rachel Hadas

Hadas gives the personal account of her journey after her husband is diagnosed with early onset dementia at only 61 years old. Following his diagnosis, Rachel's husband, George, begins to disappear before her eyes. Though he is there physically, she loses him in every other way day by day. Strange Relation gives readers a window into the time when George lived at home with Rachel caring for him and all the trials they encountered along the way.

It ends when he is moved to a dementia care facility, with Rachel now living alone and the new challenges that come her way. This heartbreaking story is deeply moving. For those who have had their lives touched in some way by dementia, Rachel's story provides insight and will help them feel that they are not alone. Her wisdom and gifted storytelling help those who have not experienced this difficult road begin to understand what it is like for others who have been there.

4. Dementia Beyond Drugs by G. Allen Power

This book is a useful read for caregivers of people with dementia. In the book, Dr. Power describes how modern treatment approaches fail to improve the lives of patients. He explains why the current paradigm is inadequate and suggests a better one focusing on patient experience. He identifies problems with traditional approaches, such as relying too much on medication and institutionalization. 

Dr. Power lays out a new model for approaching dementia in the second part of the book. In this model, caregivers and doctors should focus on improving patient well-being. He suggests that instead of trying to fix specific cognitive deficits, they should focus on the way deficits affect patient well-being. Quality of life for dementia patients is better when they have opportunities to improve well-being with ways besides medication. This book elaborates on treatment for dementia patient  and how to help them live more meaningful lives.

5. Voices in Dementia Care by Anna Dirksen

Voices in Dementia Care is based on extensive interviews with dementia care experts in the United States and in Europe. With the number of seniors with dementia increasing each year, there is much to learn from these experts. Learn more about the heavy financial burden of dementia care and treatment and look at dementia from an economic point of view. Dirksen explores how difficult it is to care for dementia patients with limited resources.

In addition to these insights, the book also provides analysis of dementia best practices and explores how they can be adapted by caregivers, both family and professional. 

6. Diary of a Caregiver: The Dementia Journey by Rex T. Young

Diary of a Caregiver chronicles the inner workings of one of the most painful yet important roles a person can play: a caregiver for a patient who may have difficulty with communication and memory. In the book, Young conveys his experiences caring for his beloved wife Marla, who was diagnosed with dementia in 2009. Initially, he was able to manage the necessary care at home; however, eventually, Marla's care became too much for him to manage on his own.

Even after Marla was admitted to hospice in 2013, Young remained the primary caregiver for her, contributing almost 24/7 care. As such, the book is a deeply personal, detailed account which sheds some light on what a primary caregiver can expect when their loved one is suffering from dementia. There are a lot of complications that come with the task, some obvious and others unexpected; Young explains them all, providing key advice which can make those tough times a bit easier. This book, along with many of the books mentioned, are available on Kindle.

For more information about resources for dementia and Alzheimer's patients, contact your local Caring Senior Service! Or refer to any of our Alzheimer's and dementia resources, including our infographic on common dementia behaviors

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Tags: Alzheimer's & Dementia, Caregivers