Book Review: "Inside the Dementia Epidemic"
Inside the Dementia Epidemic. A Daughter's Memoir. Martha Stettinus. 2012. Horseheads, NY: Dundee-Lakemont Press. 978-0-9849326-0-3. 351 pages.
This book is a wonderful addition to the growing library of literature on dementia, primarily because it is a memoir. The trail of this personal story invites readers to explore the range of feelings that, I believe, are the most difficult part of the journey of caregiving. This emotional landscape is usually missing from even the best caregiver manuals and handbooks.
In my work as a Caregiver Trainer, I labor to pass on knowledge and skills, but the questions that surface repeatedly are those with the same emotional vocabulary in the author's narrative: numb, disappointed, shell-shocked, embarrassed, fear, loss, etc. "I feel guilt about leaving Mom alone all weekend and worry that she's mad at me, or scared." I've tasted the depths of these questions myself in that, I, too, was a caregiver for my father who died with Alzheimer's disease.
The storytelling format is rendered even more inviting by the short chapters (the size one can read in the brief moments of respite caregivers usually gain). The reader can jump to the appendices and resource list as needed anytime during the storyline.
The chronological progression of the storyline provides a gentle but persuasive portal into understanding the progression of the disease. The storytelling paints how easily caregiving can so completely swallow us up. Yet, the forward movement does not shield us from the encroaching confusion of the care-recipient. As the story unfolds one gets to witness the buildup of pressures and stresses, as well as the development of caregiver knowledge, skills and outlook.
I am grateful the author was willing to expose the impact of caregiving on her marriage and family life. As the storyline moves forward we are witnesses to the effects on her relationship with husband and children. She recounts how the progression of the disease opens doors for her to explore the roots of her family of origin. It never ceases to amaze me how the loss of one family member's "memory" can deepen a passion to pursue the full and healthy integration of family stories. These dynamic processes that ride with the disease are well worth more detailed discussion and study.
Because the stories of caregiving for dementia are legion and at the same time unique, there is the possibility that the sharing of a personal narrative can be too easily dismissed because it is so unlike "my story." If we provide a book like this for caregivers, we need to be attentive that resources and directions taken by one family might not necessarily work for another. While I endorse most of the book references the author provides, I realize that how families use these ideas has often precipitated conflict within family systems and their doctors, insurance and care institutions.
A key example of this conflict and confusion is the staging system she puts forward in the front of the book. It is a well-regarded staging system (pages 17 – 20), but it is one among many used by the medical and research establishment. Caregivers need to be aware of the multiplicity of staging paradigms lest they assume false conclusions at hearing numbers. It is a full class in itself to understand the array of staging systems, yet without some nod to the variety, one could easily be led astray.
I applaud the author on inserting a promotion for the newer modalities of the Eden Alternative and Green House. Thank you! She does an excellent job of laying out the internal and external problems dealt with when exploring "moving into a care facility." Money is certainly one part of it, but certainly not the only segment capturing our worries and anxieties. Next to taking away the car keys this tale is one shared by many caregivers.
All in all this is a great addition to any caregiving library!
Reviewed by Tom Rinkoski, M.Ed., CFLE. Tom currently serves as Caregiver Support Coordinator for Elder Options, The Mid-Florida Area Agency on Aging at which he leads evidence based trainings for family caregivers of persons with Dementias and Alzheimer's Disease. Tom recently celebrated the arrival of his sixth grandchild!