Inside the Dementia Epidemic: Book Review

Published 21 September 2012.

Mother-daughter relationships are already complex.

Add to the mix, the mother's history of alcoholism and mental illness as well as her emerging dementia, and the relationship threatens to complicate beyond the bureaucratic nightmares of a Kafka novel.

But not so for Martha Stettinius and her mother Judy.  In the pages of her memoir, Stettinius describes a tender relationship with a focus on the seven years spent caregiving since her mother's minor car accident in 2005 until just months before Judy's death in December of 2012.

That minor slip into a ditch signaled significant changes to Judy's cognition, leading to a diagnosis of Alzheimer's Disease.

(A review copy was provided by the author in exchange for a fair and honest review.) 

And in order to establish context, Stettinius reaches back to describe her childhood memories of her mother--some happy, some decidedly not. The author also spends time extolling her mother's strengths as a school teacher, as a member of a recovery group, and as a nature enthusiast who lived for decades alone in an idyllic lake house.


But the bulk of the book chronicles Judy's moves from one level of care to the next as her dementia progresses and as she battles other health issues ranging from fractures to lacerations to intestinal problems. Always at her side, Judy's daughter takes on more and more responsibility for managing paperwork and researching options.  Thankfully, Stettinius includes 10 appendices of information gleaned over her seven years of caregiving.

Yes, it's extremely informative to see how much dementia requires doing leg work to gather information and  wrestling with red tape. However, the more instructive part of the memoir unfolds as Martha and Judy must redefine their relationship with each change in Judy's cognition and mobility.

Like awkward dance partners trying to work together as the music constantly changes, this mother-daughter pair must constantly negotiate and renegotiate the terms of their relationship.  But each is determined to keep reaching for the other.  It's inspiring, heart breaking and heartwarming to watch.

While I do value reading evidenced-based articles about dementia, I do recognize that the memoir is a more fitting genre for exploring the impact of this disease. Dementia affects personality, identity and relationships, so each experience is unique.

As a former English teacher, I see the power that the field of humanities has to describe phenomena in ways that scientists and social scientists cannot grasp because of the limits of their methodologies.   I applaud Stettinius for having the courage and the skill for sharing the journey she and her mother are taking together. And for telling a story full of hope and triumphs even amid the frustrations and challenges inherit in the disease.

I have read just a few memoirs about dementia, but Stettinius' Inside the Dementia Epidemic: A Daughter's Memoir earns it place as a compelling view into the challenges and triumphs of maintaining a relationship with a person with dementia.

Read more about this book, the author and Alzheimer's Disease at www.insidedementia.com

Related: 

The Ultimate Performance Art: Love
Movies Depicting Alzheimer's Disease
Books on Aging