Here’s a list of useful books and DVDs to understand dementia and related caregiving. Links are provided for the Amazon.com pages, where you can read more about them, view reader comments, and order the books. If you are in India, you may be able to order them using an Indian book store such as Amazon.in or Flipkart.com or any other online or physical store in India.
Most of these books are aimed at Alzheimer’s Disease, but most caregiving tips are helpful even for other dementias. Some books/ DVDs on home nursing are included. A couple of books written by patients, describing their experiences of dementia, are also included. Books listed include some that can help explain dementia to children.
- Indian books on dementia and care (including Bengali, Gujarati and Marathi books).
- More books on dementia and related caregiving (International).
- Books written by persons with dementia, describing their experiences of living with dementia.
- Books written specifically to explain dementia to children.
- DVDs on dementia, caregiving, and home nursing.
Handbook of Dementia (eds: Nilamadhab Kar, David Jolley, Baikunthanath Misra): “This is a 438 page medical textbook (second edition: 2010) with chapters written by various experts. It is a good reference text for a range of dementia topics like dementia-causing diseases, behavior changes, person-centric care, etc., and includes many chapters directly useful for caregivers, with topics like handling behaviors, occupational therapy, legal issues, caregiver well-being, etc.” Available at Amazon.in or any other vendor.
Understanding Dementia: Disease, Treatment & Care (ed. Prof Shyamal Kumar Das): This relatively slim 2009 book has chapters by different authors and provides a useful overview of various types of dementia, the diagnosis process, changed behavior, etc. It explains the symptoms well and includes many relevant illustrations. Coverage on how to care is low, however. Available through the ARDSI Kolkata chapter.See their page.
Dementia Paricharyya ডিমেনশিয়ায় পরিচর্যা (Ed. Nilanjana Maulik): This slender, modestly-priced Bengali book explains day-to-day dementia care to caregivers. Topics covered include description of dementia, Alzheimer’s Disease, comparison of dementia with aging, how to interact with someone who has dementia, explanations and tips for several topics like communication, bathing and cleaning, various daily activities, healthy living, and also problems like depression, hallucinations and delusions. Coverage is good, but the book does not have any illustrations. Available through the ARDSI Kolkata chapter. See their page.
Dementia Paricharyya (Part 2) ডিমেনশিয়ায় পরিচর্যা (দ্বিতীয় ভাগ)( (Ed. Nilanjana Maulik): This is part 2 of the caregiver manual from ARDSI Kolkata. It expands on topics like communication, general/personal care, behaviour, pain management, falls, wandering, home safety, emergency preparedness, outings, medication management, abuse & neglect, hospital stay, and end of life care. Available through the ARDSI Kolkata chapter.See their page.
Chitadu Chorayu - Dementia Ni Duniya ચિત્તડું ચોરાયું ( ડિમેન્શીયાની દુનિયા) (Daksha Bhat): This small book, with a modestly priced paperback, briefly covers dementia and its symptoms and types, diagnosis, medication overview, impact of dementia, caregiving, caregiver stress, daily routine, challenges, etc., and has some explanatory figures.Available from Flipkart and also from this page.
Jyesthanchi Kalji ani Sewa ज्येष्ठांची काळजी आणि सेवा (Ed. Dr. Nigavekar, Dr. Kadam, Dr. Gokhale): This book addresses various topics of geriatric care and also has several helpful sketches to show how to do some important care activities. It also includes explanations of the ageing process and related challenges, including a description of dementia, its symptoms, stages, etc.Available through ILC, Pune. See their page.
In the line of Alzheimer’s: The Mission Continues (Brig (Retd.) S P Bhattacharjya):This first-person account by Brig Bhattacharjya, 84 years old, who looked after his wife Sukla, then 72 years old. The book covers many incidents from the pre-diagnosis stage, narratingaround fifteen years of Sukla’s decline, sharing incidents, mistakes, missed symptoms, things that worked and that did not. The anecdotes are shared with honesty, placed in context, and accompanied by Brig Bhattacharjya’s own analysis.Available through the ARDSI Kolkata chapter.See their page.
Krishna: Living with Alzheimer’s (Ranabir Samaddar): This is a first-person account by a social scientist who cared for his wife (who had Alzheimer’s Disease). The book has several chapters detailed his experiences. The late-stage care chapters, especially, are extremely valuable in our Indian context where late-stage dementia is handled at home and often requires multiple interactions with health care professionals and hospitals. The book is sometimes heavy on medical details, and also has a lot of social analysis, with discussions on ‘quality of life’. The book also contains several chapters about the earlier years of dementia, both the personal side and the social side. Caregivers looking after persons in earlier stages can skip the late-stage dementia part in their first read and return to these parts later.Available at Amazon.in or Flipkart or any other vendor.
A World Within: a remarkable story of coping with a parent’s dementia (Minakshi Chaudhry): This book is by a caregiver daughter who describes her father’s decline. It has many honestly-narrated, touching anecdotes that show various sides of the father–in some he remembers and talks about the past, in some he shows mild confusion, in some where he deteriorates further. The writing style is personal, and includes personal musings, regrets, and insight.Available at Amazon.in or Flipkart or any other vendor.
For more detailed reviews of the books from India, as well as for some more books from India, see this blog entry: Information and stories on dementia and care: Books from India.
The books/ DVDs listed in various sections below are not created specially for India, and assume a different cultural context and level of support systems. The article: Applying available dementia/ caregiving material to the Indian context may be useful while considering how to apply the advice in the context of India. Another useful article is: The Cultural Context of India and its Impact on Dementia Care
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Nancy L Mace, Peter V Rabins): In my opinion, this is a must-read book, and covers an impressive range of topics. It is a classic, almost like a definitional book, so much so that doctors involved with caregivers often tell them, ‘we know you have a 36 hour day.’ For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver(Susan M McCurry): Another great, absolute must that will give you very clear ideas on what to expect from a dementia patient and how to handle them. The book focuses on changes a caregiver can make to be more supportive and also enjoy more activities with the patient, to be more resilient while coping with the difficulties of dementia care. The focus here is improving quality of life by using the tools explained, nurturing oneself, and being open to creativity and enjoyment. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
American Medical Association Guide to Home Caregiving: The title says it all–a good starting point to get the basic understanding of what is involved in caregiving for elderly persons. Includes topics like adapting homes for patients and preventing falls. Discusses caregiving skills like bed making for patients, preventing/ handling wounds and bed sores, moving immobile persons on bed and transferring them, etc. Has a chapter specifically for persons who have Alzheimer’s Disease. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
The Comfort of Home: A Complete Guide for Caregivers (Maria M Myers, Paula Derr): A practical guide for caregiving, well-written and worth having a look at. Discusses how to prepare for caregiving. Describes how to support persons who need help, including bedridden persons. Includes section on range of motion exercise, and on positioning, moving, and transferring persons to and from bed, with plenty of illustrations. Discusses various types of problems and possible approaches. Though not specifically for dementia care, it has a lot of very useful information for home caregivers, caregiving, including late-stage care. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
The Comfort of Home for Alzheimers Disease: A Guide for Caregivers (The Comfort of Home) (Maria M Myers, Paula Derr): This book has the same authors as the above book, but is geared specifically for dementia patient caregiving. It has plenty of tips on how to adapt the home for safety and comfort of care receivers and describes various types of equipment that can help patients remain mobile. Discusses communication approaches, helping with activities of daily living, and how to understand and cope with various behavior challenges (including the ABC approach). Includes discussions on topics like creating a daily routine. Have a look! For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
Understanding Difficult Behaviors: Some practical suggestions for coping with Alzheimer’s disease and related illnesses (Anne Robinson, Beth Spencer, Laurie White):This book looks at each ‘difficult behavior’, explains possible causes, and gives several practical tips for both preventing and handling the behavior.
Alzheimer’s: A Caregiver’s Guide and Sourcebook, 3rd Edition (Howard Gruetzner): his book is particularly good for its discussions on caregiver emotions and stress, and for its discussions on how families can coordinate for care. It also discusses how to understand changed behavior in dementia and how to adjust to it and respond positively. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
While I Still Can (Rick Phelps, Gary Joseph LeBlanc): Rick Phelps was diagnosed with Early Onset Alzheimer’s and has been sharing his personal story through multiple forums. He also manages various support groups for persons with dementia and their carers. Through this book, we read about his experiences of being diagnosed with dementia and the impact dementia has on his life. Comments and quotes from other persons with dementia and their caregivers are included. Rick’s story is narrated by co-author, LeBlanc, who has been a caregiver himself and also includes his experiences and tips as a caregiver, making this book more comprehensive. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or any other vendor.
Alzheimer’s from the Inside Out (Richard Taylor): Very valuable to understand the experience of dementia from the viewpoint of Richard Taylor, an articulate professor who was diagnosed with early onset Alzheimer’s when in his initial stage, and has spent several years explaining what it feels like to have dementia. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
Me And My Alzheimers: Me and My Alzheimers, join me as fight the fight of my life against this awful illness (Volume 1) (Norman McNamara): Norman McNamara is a person who has dementia. He is deeply concerned about awareness of dementia and actively shares his experiences and thoughts in various forums to help others understand the impact of dementia. In this book, he chronicles his experiences of suffering from dementia, and provides us with some very valuable insights into what it is like to live with dementia. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or any other vendor.
Why Did Grandma Put Her Underwear in the Refrigerator?: An Explanation of Alzheimer’s Disease for Children (Max Wallack, Carolyn Given): This is an excellent book to explain Alzheimer’s Disease to children. This sensitively-told story is written from the viewpoint of a seven year old girl and uses the sort of vocabulary a child would use. We see Julie struggle to understand what is happening as she watches her grandmother change because of Alzheimer’s. The book is fully illustrated and is light-hearted, engaging, and very informative. Max Wallack, the co-author, currently a student and researcher, was a child when he became a caregiver for his great grandmother, and has been passionately involved in Alzheimer’s since then. For the large-print paperback version, see Amazon.com, or, if you are in India, you can see Amazon.in or Flipkart or any other vendor.
Green Kitty (Alexandra Frae Bryan):The author of this award-winning children’s book has seen several family members living with dementia, and has woven her love for pets along with her knowledge to create this story, where each chapter contains its own story, usually involving a pet or farm animal, and there is a central story of a grandchild growing closer to her grandmother. The tone is light and the stories humorous. The book would probably work well to introduce Alzheimer’s to children who like reading/ hearing about pets/ animals. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
What’s happening to Grandpa? (Maria Shriver): Maria Shriver is known for her passion for the Alzheimer’s cause, and also for her sensitively-written children’s books. In this book, she introduces Alzheimer’s to children using the story of a young girl, Kate, who is puzzled because of the way her grandfather is changing. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or any other vendor.
The Alzheimer’s Project (Maria Shriver): HBO has created an excellent set of DVDs on Alzheimer’s as part of their Alzheimer’s project. This set includes stuff for patient, caregivers, friends, relatives, and is extremely sensitively made. Definitely worth buying. Read about it on/ order it on Amazon.com or any other vendor.
The Family Guide to Alzheimer’s Disease: 5 Volume Set (Leeza Gibbons, Mike Merryman): The Family Guide to Alzheimer’s Disease: 5 Volume Set (Leeza Gibbons, Mike Merryman) amazon” dvddesc=” A good set of DVDs to understand what Alzheimer’s Disease and its caregiving involves. Read about it on/ order it on Amazon.com or any other vendor.
The Educated Caregiver, Three DVD Set: This DVD set is great for giving you an idea of what caregiving involves and requires. Read about it on/ order it on Amazon.com or any other vendor.
Page/ post last updated on: March 6, 2017