Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End by Tia Powell, MD

Dementia Reimaginedis both medicine and memoir. Tia Powell is a medical doctor who was drawn to study dementia because of its prominence within her own family of origin. The likely chance that she will suffer some level of dementia should she live into expected old age prompted her to write about dementia for her own generation, those on the cusp of their own senior years.

The historical information surrounding dementia is anything but accurate. It came into its own as an area of serious scientific study in the early 1970s only to be replaced shortly after by a focus on Alzheimer’s. Soon the latter drew the lion’s share of dollars allocated to research as well as marketing and political attention. Today dementia is once again receiving more research as the baby boomers enter this stage of life, desiring to determine the future of their own care.

As interesting as the clinical studies and the advances made are, the heart of this book is the author’s reflections on ensuring joy and dignity for anyone in their later years. Powell discusses how a deep desire to stay in one’s home longer and insisting on independence often leads to difficult transitions when an emergency requires a marked change in care needs. Fear of the future often prevents planning realistically for that future. Powell also discusses the flaws in having extensive advanced directives for one’s own care.

Powell holds caregivers in high esteem, whether family or care providers. Caregiving can become increasingly glamourless, dull and relentless. Yet caregivers are the safety net and key to living well with dementia.

Although memory is often considered the main focus of dementia loss, Powell contends that it is often less disturbing for the person than other symptoms that require care and attention: wandering, agitation, confusion, incontinence, inability to drive, loss of sexual understanding and financial uncertainty.

Powell ends by highlighting music and food as two elements of life that give joy well beyond the diminishing of many other abilities: “The capacity to enjoy and respond to music outlast many other cognitive functions.” Songs learned as a child and young adult long outlive coherent language. Powell suggests making playlists at intervals as you move into your senior years. Comfort feeding also triggers memory and offers joy. Favorite foods might not nourish the body but certainly, they lift the spirit even as understanding is fading. Powell’s desire is for those in dementia care to be offered a way to live well.

A great companion to Atal Gwande’s Being Mortal, this is a recommended read for anyone who desires a better understanding of the world of care for people who develop dementia. (Penguin Random House)