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Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief
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. 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.
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.
256 pages, Paperback
First published January 1, 2011
209 people are currently reading
528 people want to read
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Displaying 1 - 30 of 66 reviews
March 3, 2013
This book introduced some language which is very powerful and helpful for me. It speaks of 'ambiguous loss'. When one's partner is disappearing into the fog of dementia, the term ambiguous loss is incredibly meaningful and powerful. I find that having a name for something helps me understand and accept it. Pauline Boss also speaks of 'complex grief' - again an expression that makes a lot of sense to me and helps me come to terms with my grief that has agonised for over 4 years with the worst yet to come.
I also found the concept of 'both-and' as opposed to 'either-or' to be helpful as a way to come to terms with the ambiguities I face - I both have my partner and have lost her, I want her to live for a long time but I want this horror to be over.
I suspect Boss' book would not mean much to someone not living with someone with dementia but for me it is very powerful and helpful.
I also found the concept of 'both-and' as opposed to 'either-or' to be helpful as a way to come to terms with the ambiguities I face - I both have my partner and have lost her, I want her to live for a long time but I want this horror to be over.
I suspect Boss' book would not mean much to someone not living with someone with dementia but for me it is very powerful and helpful.
February 20, 2022
I don’t regret reading this, but I also probably wouldn’t recommend it. I have read several positive reviews, though, of it and so if this book has helped people, that is great.
Most of it I found vague, repetitive and unhelpful. It also includes a lot of unnecessary detail. Many sentences start with something like “When I was sitting in a crowded plane on my way to Alaska…” or “When I was in New York City one winter evening…” and it has nothing to do with what she’s about to say. The amount of valuable information (and there was some) could have been translated in a few pages, not an entire book. Felt like a student trying to reach a minimum word count.
To it’s credit, there were several concepts that the book addresses that I think are good to remember:
1. Caregivers are human. They have their own needs and can get burnt out. Let’s help alleviate some of their load if able.
2. Caregivers can suffer from isolation and chronic sadness or anxiety. Let’s visit them and check in with them regularly.
3. It’s possible to grieve the loss of someone who is still alive. If someone has a parent, spouse or friend with dementia, don’t assume they’re okay because their loved one is “still here” - in some ways, they aren’t “here” anymore and that can be devastating.
One thing I’d like to say I did appreciate about the author: It is obvious that she values relationships, family, service, loyalty and kindness. And for that I am grateful.
Most of it I found vague, repetitive and unhelpful. It also includes a lot of unnecessary detail. Many sentences start with something like “When I was sitting in a crowded plane on my way to Alaska…” or “When I was in New York City one winter evening…” and it has nothing to do with what she’s about to say. The amount of valuable information (and there was some) could have been translated in a few pages, not an entire book. Felt like a student trying to reach a minimum word count.
To it’s credit, there were several concepts that the book addresses that I think are good to remember:
1. Caregivers are human. They have their own needs and can get burnt out. Let’s help alleviate some of their load if able.
2. Caregivers can suffer from isolation and chronic sadness or anxiety. Let’s visit them and check in with them regularly.
3. It’s possible to grieve the loss of someone who is still alive. If someone has a parent, spouse or friend with dementia, don’t assume they’re okay because their loved one is “still here” - in some ways, they aren’t “here” anymore and that can be devastating.
One thing I’d like to say I did appreciate about the author: It is obvious that she values relationships, family, service, loyalty and kindness. And for that I am grateful.
September 3, 2012
This is the best book that I have ever read! I want to buy a case to distribute to others who might know a caregiver for a loved one with dementia. I just finished it but want to immediately start over and read it again. I have never said that about a book. You should see all my markings already filling the pages. Please take time to read this fabulous book.
October 18, 2020
This book was very well written, and I found it encouraging, as I care for my mother who has dementia. The author put in writing many of the frustrations and feelings I have. Chronic sadness, loneliness, grief, coming to terms with and accepting the duality of presence and absence - these are all parts of the "ambiguous loss" dementia caregivers experience. This journey is long and complicated and stressful and sad. Pauline Boss encourages caregivers to take care of their own health, seek support of friends and family, and find peace and even joy while living with the uncertainty of dementia. She gives practical advice on how to accomplish that. I would definitely recommend this book for anyone who is living with a loved one with dementia or Alzheimer's.
December 20, 2025
“Most of us will eventually become either a caregiver or a care receiver….” everyone should read this book.
June 8, 2013
I gave this book three stars only because of my personal experiences. The first six chapters of the book are pretty basic and for anyone, like me, who has been through therapy (several times!) none of the information is particularly new or enlightening. It would be, however, very useful to someone confronting any disease, but specifically dementia, in a loved one for the first time. For the novice to self-reflection or dealing with the significant changes occurring because of dementia, I would definitely recommend the book. It is practical in its outlook and the author gives many examples of caregivers, one of which it is likely the reader will relate to.
Starting with chapter seven, entitled "Seven Guidelines for the Journey," however, I found the information very useful. I am just beginning this journey into dementia and caretaking and it is frightening and bewildering. The second half of the book was more relevant to my situation and I found solace and some good advice within its pages. For the second half of the book I would give four stars, so I guess we end up at a 3.5 in the end.
Starting with chapter seven, entitled "Seven Guidelines for the Journey," however, I found the information very useful. I am just beginning this journey into dementia and caretaking and it is frightening and bewildering. The second half of the book was more relevant to my situation and I found solace and some good advice within its pages. For the second half of the book I would give four stars, so I guess we end up at a 3.5 in the end.
February 24, 2019
At almost every page, I said aha. Indeed it is how I felt and the advice offered was wonderful.
February 23, 2018
This book was recommended in a Caregiver's Seminar. It is for all of us who are "caregivers" not just those whose loved ones are facing dementia. Good reasoning tips as well as "you aren't alone" ideas that have raced through all of our minds while doing the job that has a 63% higher death rate than non-caregivers.
February 21, 2023
Pauline Boss's work around "ambiguous loss" is really insightful. The writing style of this particular book is very, very simple and straightforward -- sometimes to an annoying extent.
March 11, 2024
Very helpful!
September 8, 2021
Very good, will recommend to pts
August 5, 2022
My husband was diagnosed 3 years ago with dementia after he began to lose things. He would accuse someone of stealing, even in the night. He was on medication but his symptoms progressed to anger and short fuse over little things. This was a man who was soft spoken, slow to anger and gentle. It was such a change for us to try to manage a whole new way of living. He is 67, I'm 66 and I felt so stressed sometimes. I didn’t know what each day will start with. I retired in April that year and was with him 24/7. I have been researching for a while now, and I think this has helped. Have you ever come across Health herbs clinic Dementia HERBAL FORMULA (just google it). It is a smashing one of a kind product for reversing Dementia completely.4 months into treatment he has improved dramatically. the disease is totally under control. No case of dementia, particularly the hallucination, weakness, and his mood swings. visit their website healthherbsclinic .com I Just wanted to share for people suffering from this horrible disease
July 19, 2019
This book has really helped me understand what I was experiencing dealing with the early stages of dementia in my mother - the anger, grief, hopelessness, did I mention anger?? Introducing “ambiguous loss” as an ongoing situation on this journey and explaining its role, as well as finding a therapist specializing in the dementias and Alzheimer’s, has been remarkably helpful to set my feet in the right direction on this path.
Pauline Boss has written an exceptional resource that is easy to understand and applicable to the layperson and medical professional, alike. It was engaging and I truly felt understood and not-so-alone while reading this book. I look forward to reading another book by Ms. Boss titled “Ambiguous Loss”.
Pauline Boss has written an exceptional resource that is easy to understand and applicable to the layperson and medical professional, alike. It was engaging and I truly felt understood and not-so-alone while reading this book. I look forward to reading another book by Ms. Boss titled “Ambiguous Loss”.
March 3, 2023
Recommended by the friend of a friend. I went into this book with low expectations --most of what I've read about dementia care focuses on adult children caring for elderly parents (as is the case with the person who recommended this book.) However, Boss has many helpful things to say to spouses who are losing their partners to dementia. The idea of "ambiguous loss"--the idea that it's possible to lose someone who's still physically present--has been really helpful to me, as has "both/and thinking." If you're living up close and personal with dementia, I highly recommend this book.
December 19, 2024
I found this book difficult and often needed breaks because I was feeling overwhelmed and sad. I am looking forward to a class I will be taking over the next three months to help manage my own feelings and challenges as a caregiver.
October 3, 2016
An excellent book. Good for whatever stage you are at.
December 14, 2024
I was privileged to take a ten week class and attend a group with Duet and thee VA. I can not put into words what a help this was. If you ever get the chance make sure you do this.
March 12, 2025
Excellent! I learned so much!
August 29, 2025
I was diagnosed with Multiple Sclerosis (MS) four years ago. For over two years, I relied on conventional medications, but unfortunately, the symptoms kept getting worse. The fatigue became overwhelming, my mobility declined, and daily activities became more difficult. Last year, out of desperation and hope, I decided to try an herbal treatment program from NaturePath Herbal Clinic. Honestly, I was skeptical at first, but within a few months of starting the treatment, I began to notice real changes. My energy levels improved, mobility became easier, and I felt more stable and confident in my movements. Incredibly, I also regained much of my independence and quality of life. It’s been a life-changing experience I feel more like myself again, better than I’ve felt in years. If you or a loved one is struggling with MS, I truly recommend looking into their natural approach. You can visit their website at www.naturepathherbalclinic.com
October 19, 2021
Something I really appreciated in this book is how they recognize the Ambiguous Loss and long-term grieving process that comes with a dementia diagnosis. Throughout the progression you are constantly grieving new losses while your loved one is "both here and gone". It is not a tidy "closure", it is long and drawn out, and the continuous grief creates a continuous sadness that can easily be misdiagnosed as depression. It is not the same as depression and the therapies differ, whereas with depression they may prescribe an antidepressant, with continuous grief you need emotional support.
Upon spending three weeks in the caregiver roll I was diagnosed with depression and given Zoloft, but upon leaving the environment and caregiving roll the "depression" disappeared. Reading this book gave me the "ah-ha!" moment that I needed, recognizing how that applied to my situation.
Upon spending three weeks in the caregiver roll I was diagnosed with depression and given Zoloft, but upon leaving the environment and caregiving roll the "depression" disappeared. Reading this book gave me the "ah-ha!" moment that I needed, recognizing how that applied to my situation.
December 2, 2025
This book really helped me change my look on dementia. Instead of focusing on what’s lost, we should be looking at what we had before and what we do still have.
The idea of ambiguity opened my eyes. The book talks about having a positive outlook rather than a negative one.
The book also mentions one piece of advice that I found insanely helpful: grieve each loss. Don’t wait to grieve everything at once. Grieve every little loss.
The author provides many resources for caregivers within the book. I truely find the advice helpful. The book also offers real stories from caregivers who have given testimonies. These stories helped me feel less alone in this time of confusion.
The idea of “both-and” thinking opened my eyes as well. The idea that two realities can be true at once: our reality and the patients reality. This eased so much guilt, frustration and anxiety for me.
The idea of ambiguity opened my eyes. The book talks about having a positive outlook rather than a negative one.
The book also mentions one piece of advice that I found insanely helpful: grieve each loss. Don’t wait to grieve everything at once. Grieve every little loss.
The author provides many resources for caregivers within the book. I truely find the advice helpful. The book also offers real stories from caregivers who have given testimonies. These stories helped me feel less alone in this time of confusion.
The idea of “both-and” thinking opened my eyes as well. The idea that two realities can be true at once: our reality and the patients reality. This eased so much guilt, frustration and anxiety for me.
August 27, 2021
This is a wonderfully compassionate discussion for caregivers of a loved one with dementia. I like the way the author presents bite-sized bits of advice, with headings and chapter summaries that allow the reader to read through the book in an order that meets his/her immediate areas of concern. Chapter 8 has many gold nuggets. The author summarizes the chapter this way, “Being able to see the good side of the ambiguity in your relationship gives you the resiliency to endure the emotional and physical work of caring for someone with dementia. Live each day as it comes, make the best of it, and laugh when you can. In some cases there is no good side, so consider other options.” I made many notes to revisit these ideas again and again.
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December 29, 2023I didn’t find a lot of ideas that were new to me, but I appreciate the attention given to what caregivers face: besides the idea of ambiguous loss, the risk of feeling isolated and of being ignored by health care providers focused on the dementia patient. I particularly liked a small section at the end that discussed why people give care:
‘What we know is that a caregiver’s journey is psychologically painful, physically exhausting, and long. […] What is it then that makes caregivers continue even when their own finances and health are in jeopardy? […] What is born out of love and empathy, even if they are mixed with obligation, is called caring, and it’s one of the most valuable resources we have in an aging society.’
‘What we know is that a caregiver’s journey is psychologically painful, physically exhausting, and long. […] What is it then that makes caregivers continue even when their own finances and health are in jeopardy? […] What is born out of love and empathy, even if they are mixed with obligation, is called caring, and it’s one of the most valuable resources we have in an aging society.’
February 27, 2024
Sending Prayers and Support. My mom was diagnosed with Dementia disease when she was 62 years old 2 years ago. The Donepezil did very little to help her. The medical team did even less. Her decline was rapid and devastating. It was Hallucinations at first, then Walking difficulties. Last year, a family friend told us about Natural Herbs Centre and their successful Dementia Ayurveda TREATMENT, we visited their website natural herbs centre. com and ordered their Dementia Ayurveda protocol, i am happy to report the treatment effectively treated and reversed her Dementia , most of her symptoms stopped, she’s able to walk again, sleep well and exercise regularly.she’s active now, I can personally vouch for these remedy but you would probably need to decide what works best for you.
January 2, 2025
I did like this book because it clarified the concept of people being both/either physically/emotionally present/absent, but after this first "a-ha" moment everything else was simply repetition. It's easier to deal with people who are absent physically yet present emotionally than with those who are absent emotionally yet present physically. I appreciated that it was based in reality and science rather than the usual woo-woo self-help tropes, but I was hoping for more in-depth neurological explanations about why the brain insists on searching for certainty and how to use that tendency to learn to accept uncertainty and ambiguity.
September 6, 2023
My husband who had been diagnosed with Dementia for 2 years at the age of 62 had all his symptoms reversed with Ayurveda medicine from natural herbs centre. com after undergoing their Dementia natural protocol, he’s now able to comprehend what is seen. God Bless all Dementia disease Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you💜.
December 16, 2021
Insightful, I read as someone who works with those in the situations described and I feel now more in tune with what they deal with, more able to offer help, and more able to be there for them. This book takes a tough subject with difficult psychological answers and makes it digestible for those without a background in the subject. I am immediately passing this book on to a friend who is currently caretaking for her mother.
May 14, 2024
I read this book to help me understand what a close friend was dealing with as she looks after her partner with dementia. She had found the book enormously helpful.
I found the first few chapters particularly useful - ‘both/and’ and ‘ambiguous loss’. For me this fitted into a framework of dialectics. As the book goes on the tone becomes more therapeutic and a little spiritual/religious, which I’m less comfortable with. It’s interesting and useful, though, and I’d definitely recommend it.
I found the first few chapters particularly useful - ‘both/and’ and ‘ambiguous loss’. For me this fitted into a framework of dialectics. As the book goes on the tone becomes more therapeutic and a little spiritual/religious, which I’m less comfortable with. It’s interesting and useful, though, and I’d definitely recommend it.
September 10, 2024
Fantastic! Rather than a how-to book telling the reader how to care for their loved one, this book helps you come to terms with your thoughts and emotions. The author describes out inner turmoils and gives us resources to accept those feelings. I highlighted a lot of passages and I’m sure I will keep coming back again and again for refreshers. If you are caring for a loved one with dementia , this is a must read!
November 25, 2024
There were not a lot of new ideas to me in this book, but I appreciate the author’s exploration of ambiguous loss in the experience of caregivers. Boss has contributed a lot to help caregivers with videos on YouTube along with her books. Her clear empathy and calm, soothing voice as she read this book made it a pleasure to listen to and it was full of helpful reminders about how caregivers should care for themselves along with the ones they care for.
Displaying 1 - 30 of 66 reviews