Research-based advice for people who care for someone with dementia

Nearly half of U.S. citizens over the age of 85 are suffering from some kind of dementia and require care. Loving Someone Who Has Dementia is a new kind of caregiving book. It's not about the usual techniques, but about how to manage on-going stress and grief. The book is for caregivers, family members, friends, neighbors as well as educators and professionals—anyone touched by the epidemic of dementia. Dr. Boss helps caregivers find hope in "ambiguous loss"—having a loved one both here and not here, physically present but psychologically absent.

Outlines seven guidelines to stay resilient while caring for someone who has dementia Discusses the meaning of relationships with individuals who are cognitively impaired and no longer as they used to be Offers approaches to understand and cope with the emotional strain of care-giving

Boss's book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

Q&A with the Author

Author Pauline Boss

What is meant by the term "ambiguous loss"?
Ambiguous loss is simply an unclear loss. It is a term I coined in the 1970's to label the all too common experience of having a loved one disappear without evidence of whereabouts or being dead or alive. Such disappearance can be physical, as in the case of a loved one gone missing, or psychological, as in the case of dementia when memory and emotion fade away. Ambiguous loss ruptures meaning, that is, it is immensely distressing to make sense of this kind of loss.

In order to cope one has to know what the problem is, so I gave it a name—ambiguous loss. Knowing what the problem is the first step to managing it. In the case of dementia, the ambiguity will likely not lessen, but in this book, I tell you how to increase your tolerance for it.

How did you come to be interested in the concept of ambiguous loss?
I came to be interested in the idea of ambiguous loss early in my life—living in a Swiss immigrant community where everyone seemed to be pining for the homeland across the sea. I grew up living with a Swiss grandmother (maternal) and a father, both of whom were homesick for the families they left behind. In our farm home in New Glarus, Wisconsin, she was the oldest and I the youngest, so we spent a lot of time together, doing the lesser tasks such as setting the table and shucking peas. Later on, that grandmother, Elsbeth Hammerlie-Elmer, to whom I dedicate this book, suffered from what was then called senile dementia. I felt I lost her in yet another way. She, like my father, was often dreaming of another family across the sea, and now she had dementia on top of the melancholy of homesickness.

Because I lived with ambiguous loss, I became curious early in my life about the mystery of loved ones being gone psychologically. My favorite radio program back then was, “Mr. Keen, Tracer of Lost Persons.” And my interest has never stopped.

Is it possible—and ethical—to continue to have a sex life with a loved one who has dementia?
For couples who already have diminishing pleasure in life, automatically saying “no more sex” is unfair. First, individuals and couples vary widely in their desire to continue or stop having sexual relations. However it is viewed, stopping sex is one more loss in the midst of so many other losses. Second, there are vast differences in what couples consider “sex.” Third, there are vast differences in dementia, ranging from mild to severe, and this may be the most important decider for whether or not sex should continue after dementia.

While research is slim, and more is surely needed to break the no-talk taboo, clinicians know that many couples affected by dementia continue to be intimate. But how they do this varies. Their sex life may still be what it was in their younger years, before dementia set in. Or it may be spooning in bed, or tender touching and hugging during the day before going to separate bedrooms.

The bottom line is that there must be no exploitation, no forcing, no intimidation, no coercion, and no abuse. There must be some awareness—and acceptance—of what is going on. Neither person can feel entitled to sex just because he or she is married or simply has desire.



Author: Pauline Boss
Paperback: 256 pages
Company: Jossey-Bass (2011-08-09)
ISBN: 1118002296
List Price: $18.95
Amazon Price: $11.64
Used Price: $11.87

This book includes vital information on Frontotemporal Dementia (FTD). Foreword is given by John Q Trojanowski, MD, PhD, Director, Alzheimer's Disease Center, University of Pennsylvania Hospital. Although the public most often associates dementia with Alzheimer's disease, the medical profession now distinguishes various types of 'other' dementias. This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer's dementias. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD sufferers. Beginning with a focus on the medical facts, the first part defines and explores FTD as an illness distinct from Alzheimer's disease. Also considered are clinical and medical care issues and practices, as well as such topics as finding a medical team and rehabilitation interventions. The next section on managing care examines the daily care routine including exercise, socialisation, adapting the home environment, and behavioural issues. In the following section on caregiver resources, the contributors identify professional and government assistance programs along with private resources and legal options. This newly revised edition follows recent world-wide collaboration in research and provides the most current medical information available, a better understanding of the different classifications of FTD, and more clarity regarding the role of genetics. A completely new chapter 5 enlightens the reader about the various drugs that are now being used with FTD patients and also delves into a number of non-medical options. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from frontotemporal dementia.

Paperback: 360 pages
Company: Prometheus Books (2008-03-27)
ISBN: 1591025842
List Price: $22.98
Amazon Price: $11.54
Used Price: $11.21

With more than five million people in the United States living with Alzheimer's disease and nearly ten million loved ones caring for them, addressing the concerns of these elders and their caregivers is a matter of increasing importance. Relying on their many years of experience in this area, Jane Thibault and Richard Morgan offer this book to provide a fresh, hopeful model of dealing with life and death in the realm of Alzheimer's and other forms of dementia. Caregivers have two basic needs: affirmation that caregiving is not in vain and reassurance that the lives of those for whom they care are not being lived in vain. Care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God. When patient and caregiver regard this shared experience as a "mutual spiritual path," each plays a role in deepening the spiritual life of the other. No Act of Love Is Ever Wasted is an excellent resource for individuals caring for loved ones as well as for counselors, support group leaders, pastors, and other professionals. In addition to offering practical ways to help, this book serves as a reminder that every act of love brings positive transformation to the recipient, to the giver, and to the world.

Author: Richard L. Morgan, Jane Marie Thibault
Perfect Paperback: 176 pages
Company: Upper Room (2009-09-01)
ISBN: 0835899950
List Price: $16.00
Amazon Price: $10.44
Used Price: $8.18

Eighty percent of persons with dementia live at home, and the family members caring for them are often overwhelmed by the enormous responsibility and the complexities of care. This book is designed to support the caregivers and help them understand the needs and feelings of the person for whom they are caring. A central focus is the goal of sustaining a loving family relationship between the caregiver and the patient.

Developed from a training program for professionals and family caregivers, this book teaches the basics of dementia care while emphasizing communication, understanding and acceptance, and personal growth through the caregiving experience. The result is a guide that integrates the practicalities of caregiving with the human emotions that accompany it.

Author: Joy A. Glenner, Jean M. Stehman, Judith Davagnino, Margaret J. Galante, Martha L. Green
Paperback: 152 pages
Company: The Johns Hopkins University Press (2005-05-10)
ISBN: 0801881145
List Price: $19.00
Amazon Price: $10.25
Used Price: $8.64

Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the "bible" for families caring for people with Alzheimer disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care.

The new edition includes:

- new information on diagnostic evaluation
- resources for families and adult children who care for people with dementia
- updated legal and financial information
- the latest information on nursing homes and other communal living arrangements
- new information on research, medications, and the biological causes and effects of dementia

Author: Nancy L. Mace, Peter V. Rabins
Paperback: 352 pages
Company: The Johns Hopkins University Press (2006-10-09)
ISBN: 0801885094
List Price: $17.95
Amazon Price: $15.50
Used Price: $1.75

This book offers an accessible and sympathetic introduction for relatives, carers and professionals looking after or training to work with people with dementia. Drawing on the two 'laws of dementia', the author explains the causes of communication problems, mood disturbances and 'deviant' behaviours, with particular emphasis on how these are experienced by dementia sufferers themselves. Case examples demonstrate the typical symptoms and progression of dementia, and clear guidance is provided on how to support dementia sufferers at every stage and help them deal with the challenges posed by their condition. Relatives and carers will find this book a source of essential information and encouragement to deal confidently with the difficulties posed by the condition both for people with dementia and those around them.

Author: Huub Buijssen
Paperback: 176 pages
Company: Jessica Kingsley Pub (2005-03-30)
ISBN: 1843103214
List Price: $21.95
Amazon Price: $18.88
Used Price: $16.18

Although very little can be done to alter the course of dementia, much can be done to maximize the quality of life of people with the condition. Research as well as practical experience suggest that behavior management, especially through programs that provide meaningful and constructive activity, is currently the most effective treatment.

In Keeping Busy, James Dowling describes a variety of activities designed to bring meaning and enjoyment to the lives of persons with dementia. The activities are organized by general categories such as music, exercise, horticulture, pets, humor, and social events. The largest section deals with communication and includes word games that help people strengthen their remaining verbal skills. The description of each activity includes step-by-step instructions, as well as tips on how to adapt it for small or large groups, for individuals at home or in an organization, or people who are bedridden.

Author: James R. Dowling
Paperback: 200 pages
Company: The Johns Hopkins University Press (1995-05-01)
ISBN: 0801850592
List Price: $22.00
Amazon Price: $12.49
Used Price: $11.50

This book is suitable for people with dementia, their relatives and for healthcare professionals alike.


(Author) John David Baker RN MIfL Dip.RSA PGCE BSc DipHE Cert Man Care Cert Dementia Care LCGI



This book explains Dementia, Alzheimer’s disease and Vascular Dementia.


This book is a bestseller. It previously reached the top spots for dementia books and psychiatric nursing books on the bestselling list on Amazon (during 2011).




Relatives that have read this book have said:

“I cried when I read this book. I never understood what had actually happened to my dad when he got dementia, until now”

“Now I understand what is happening to my mum and what to expect in the future”

“A book that I wish that I had read a long time ago, it is so helpful”

“I can see my granddad in this book. The things that this book talks about happened to him”

“Simple and clear English…..anybody can follow it…even me!”




Nurses and care staff that have read this book have said:

“I work in a hospital. We get many people in with dementia. Having read the book, I now understand this subject a lot better. I think I will be able to care for them a lot better”

“Very enjoyable”

“An excellent book for all nurses and carers working in hospitals and the community”




The book covers:

1. Overview of Dementia
2. What is dementia?
3. The Four Common Components of Dementia
4. Types of Dementia
5. Alzheimer’s Disease
6. Vascular Dementia
7. The Stages of Dementia
8. Medication for people with dementia
9. Abuse within Care Homes and the NHS
10. The Social and historical context of dementia



The author of this book is a practicing Nurse Specialist in Dementia Care, Care of the Older Person and Nursing Home Practice. He is also a relative of a person that had Vascular Dementia before she died.

He has spent decades working with people with dementia. He understands the theories and the realities of dementia extremely well. The author lives and breathes the world of dementia; he does not live in an ivory tower of academia or practice without understanding the theories of the academic world.

The author presents his knowledge in a clear and understandable way for all to read and enjoy.


**************************************************************************************
Other books by John David Baker
RN MIfL Dip.RSA PGCE BSc DipHE Cert Man Care Cert Dementia Care LCGI



The Nurse Explains: How to Choose a Care Home


*****(To find this book click on the author’s name at the top of this page or type “John David Baker” into the Amazon search box)*****


Published 2011, print page equivalent 32 pages (6,800 words).


Finding the best care home to live in can be one of the biggest decisions of your life. It can also be an extremely difficult one. Often people do not know where to start or what questions they need to ask.

Just how do you tell a good care home from a bad one?

This guide will answer this question, and much more, in just 32 precise pages.

This book is written by a Clinical Nurse Specialist in Care Home Practice. He understands all too well that when selecting a care home time is often of the essence, hence this invaluable quick reference guide. The book covers:


1. Things That People Need To Know Before Visiting A Care Home

2. Types and Categories of Care Homes

3. How to find a care home

4. How to Make Contact with the Care Home

5. Tips for visiting Care Homes

6. A checklist of questions to ask when visiting a care home, and things to lookout for and to reflect upon later

7. Useful Organisations




Author: John David Baker, John David Baker RN MIfL Dip.RSA PGCE BSc DipHE Cert Man Care (Open) Cert HP (Open) LCGI
Kindle Edition: 59 pages Kindle eBook
Company: John Baker Independent publishing (2012-01-24) (2012-01-24)
List Price: $0.99
Amazon Price:

Originally published in 1981, The 36-Hour Day was the first book of its kind. Thirty years later, with dozens of other books on the market, it remains the definitive guide for people caring for someone with dementia. Now in a new and updated edition, this best-selling book features thoroughly revised chapters on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Author: Nancy L. Mace, Peter V. Rabins
Hardcover: 384 pages
Company: The Johns Hopkins University Press (2011-10-05)
ISBN: 1421402793
List Price: $45.00
Amazon Price: $33.22
Used Price: $35.00

Dementia: From Diagnosis to Management - A Functional Approach is a comprehensive description of a functional and behavioral approach to assessing and treating persons with dementia. While very practical, the information is embedded in a scientific context of the causes, neuropsychological manifestations, and complications of dementia. The management of the impairments of dementia is centered on its functional consequences and impact on daily living. The chapters describe behavioral interventions and environmental strategies that aim to improve daily activities and quality of life from a proactive communication and memory basis. Specific suggestions are provided to enhance family involvement and staff relationships, interdisciplinary cooperation, reimbursement, and documentation across various home and institutional settings.

The book is written in a straightforward style and is evenhanded in its critical analyses of the evidence available to inform practice. The extensive clinical backgrounds of the authors allow them to use ‘real world’ case studies to illustrate common challenges of persons with dementia and potential solutions for caregivers. Further resources and clinical materials are included in comprehensive appendices.

The volume provides essential reading for clinicians and administrators who seek to improve the lives of people with dementia and those who care for them. It is also an invaluable reference for beginning students in adult language disorders and gerontology.

Author: Michelle S. Bourgeois, Ellen Hickey
Hardcover: 432 pages
Company: Psychology Press (2009-02-17)
ISBN: 0805856064
List Price: $80.00
Amazon Price: $70.76
Used Price: $71.57