The most recommended books on dementia

I loved everything about this book, from the story arc to Alison McGhee's turn of phrase and use of language.

Her descriptions of people and scenes range from hilarious to tear-inducing, with a side of quirky.

The best thing, though, is the story itself, Clara going back to the place she was never going back to, and dealing not only with her mother's dementia but with the things that made her leave town in the first place.

In this story, the dog is named Dog and he died before the story begins. The blue ceramic urn with his ashes is one of the very few things her mother kept for her – a talisman.

Soul-searching, gripping, and so very well written, this is one of my favorite books of this century. 

Kitwood’s seminal work was first published in 1997. This new edition, just over 20 years later, contains commentaries on each of Kitwood’s chapters to bring the work up to date. But, candidly, the original remains compelling. I gobbled it up, even if I disagreed with bits of it. It introduced me to the new culture of dementia care. It was refreshing, with its talk of a ‘malignant social psychology’, which is sadly still pervasive. It also introduced many people to Dementia Care Mapping, an observational technique now used all over the world to improve the care of people living with dementia. At the centre of Kitwood’s considerations was the importance of the person, seen as a psychosocial being, not simply a biomedical one. What a surprisingly revolutionary idea!

The title poem in this collection, (made from lines spoken by the poet’s mother,) manages to embody both caregiver and loved one as Constantine gives gentle structure to a string of seemingly disconnected utterances. Each poem in the book explores themes of loss, memory, and family through a different lens, creating an almost kaleidoscopic vision of the world. The collection is a rumination, a celebration, and a beautiful example of how poetry can expand our perspectives and teach us to speak and hear new rhythms.  

I first picked this up in a bookshop in Bangalore, knowing nothing about it or the (now very famous) author.

I was unprepared for a novel that managed to evoke the lush and intense vibrancy of South Pacific Islands, the depravity of a real-life Nobel Prize winner who was accused of heinous crimes, and the heartbreak of losing someone to dementia – all at the same time.

This is an uncomfortable but unputdownable novel, and one that affected me so deeply I now have a tattoo of it; on my thumb is the symbol carved into wood to signal that the ’people in the trees’ live there, in memory of my beloved grandmother. 

As a kid, I loved this funny and frightening book about the terrible things that happen to bratty children (the same could be inferred for bratty octogenarians).

I’m sure my parents hoped these tales would encourage more reasonable behavior. Instead, these tales set me on a path to writing dark stories. In this case, the contrast of humor and the horrifying is addictive, and characters in any kind of book that combine these traits are always compelling.

The illustrations in the version published by John C. Winston Company are particularly quirky, increasing the impact of each story. This book probably had more influence on my book than I realized during the writing.

Moments of joy are often all that can be had by people in the later stages of dementia when life is lived moment by forgotten moment. What people may not realize, though, is that while the memories of joyful moments (an ice cream cone, petting a dog, looking at pictures, taking a walk) may be quickly forgotten, the emotion of joy will linger.

Brackey tells us how to create moments of joy for our loved ones with dementia and that people with dementia have much to teach us about ourselves.

This first-person account of living with a biomarker-defined diagnosis of Alzheimer’s disease is a clearly written story of two very distinct, even antagonistic experiences. There’s the highly subjective experience of being a patient and the highly objective experience of being a physician who has diagnosed and cared for persons with the same disease. In one book is one narrative of two perspectives embodied in one person. The result is an unadorned account of what it’s like to lose one’s mind just a little bit at a time. Case in point is his account of apathy. I’m routinely prescribing this book to my patients. 

Sensitive and insightful, The Validation Breakthrough is an essential resource for families, friends, neighbors, home health aides, doctors, nurses, social workers, and long-term care staff.

I learned as I read this book the necessity of walking beside the elderly in the final life stage. I learned empathy and to listen and talk with them, rather than patronizing them or telling them what to do. And I learned a very different understanding of why those with dementia symptoms do the things that they do-how the decline in cognitive abilities affects them in a very individual way, and to better understand the reasons behind their disorientation and sometimes challenging behavior.

The Validation Breakthrough was the foundation for my dementia care programs and method, and I often recommend this to all my family and professional clients to help raise their dementia awareness.

Corkin, a research psychologist, presents a fascinating case study of her patient, Henry Molaison, a man with no memory. Molaison—or H.M., as he was known in the scientific literature until his death in 2008—was a 27-year-old with severe epilepsy when he underwent radical brain surgery in 1953 to cure his intractable seizures.

Though Molaison’s seizures largely abated after the operation, he developed an even bigger problem, which manifested almost immediately after his surgery. Daily events vanished from his mind almost as soon as they had occurred.

Like most patients living with dementia, he could form no new long-term memories. With no new memories, he lived in a perpetual present, disconnected from his past (or at least the past after his surgery) and his future.

I loved this book because it challenged ideas about relationships and motherhood.

For me, the issues around guilt and feelings of self-worth came through strongly. I loved this book because the writing was lyrical and clear, and made me suspend my disbelief to the point where I totally believed the premise that one could inhabit another’s body—and made me wonder if the burden of guilt can actually cause such dire consequences.