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Dancing with Dementia: My Story of Living Positively with Dementia
Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences. This book is a vivid account of the author's experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life nevertheless, and explains how professionals and carers can help. Christine Bryden makes an outspoken attempt to change prevailing attitudes and misconceptions about the disease. Arguing for greater empowerment and respect for people with dementia as individuals, she also reflects on the importance of spirituality in her life and how it has helped her better understand who she is and who she is becoming. Dancing with Dementia is a thoughtful exploration of how dementia challenges our ideas of personal identity and of the process of self-discovery it can bring about.
- GenresNonfictionPsychology
200 pages, Paperback
First published January 1, 2005
21 people are currently reading
252 people want to read
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Displaying 1 - 18 of 18 reviews
October 16, 2017
This was a very important book for me to read as my wife was diagnosed with Early Onset Alzheimers a year ago at the age of 53 years old.
We have seen doctors,neurologists,occupational therapists,psychologists,done courses,had PET Scans,MRI Scans,Lumbar Punctures,second opinions all for a clear diagnisis.
But to understand and learn how best to live with this diagnosis and learn how to give my wife quality of life and to understand how to communicate effectively was what i really wanted to learn and this book is a great help towards understanding in a very real and meaningful way what my wife is going through and how to help her all i possibly can.
The author is a really inspirational lady and is herself a person who suffers with this disease.
Its really incredible how much she has done to help people understand this illness and has made a big impact globally on the way people view and understand dementia.
I highly recommend this book as there is so much information and helps you to understand what the person with Alzheimers is feeling and how they see the world.
My words are not great really for describing this book but anyone how is living with Alzheimers as a person diagnosed or as a carer will find it invaluable.
We have seen doctors,neurologists,occupational therapists,psychologists,done courses,had PET Scans,MRI Scans,Lumbar Punctures,second opinions all for a clear diagnisis.
But to understand and learn how best to live with this diagnosis and learn how to give my wife quality of life and to understand how to communicate effectively was what i really wanted to learn and this book is a great help towards understanding in a very real and meaningful way what my wife is going through and how to help her all i possibly can.
The author is a really inspirational lady and is herself a person who suffers with this disease.
Its really incredible how much she has done to help people understand this illness and has made a big impact globally on the way people view and understand dementia.
I highly recommend this book as there is so much information and helps you to understand what the person with Alzheimers is feeling and how they see the world.
My words are not great really for describing this book but anyone how is living with Alzheimers as a person diagnosed or as a carer will find it invaluable.
June 2, 2015
I have an unusual response to this book, for a couple reasons, some of which have to do with my own family experience and some which come from the questioning that my scientific training demands. The author, Christine Bryden, has been diagnosed with dementia, from a full battery of tests that include brain scans, cognitive tests, and so on. She notes a number of alarming memory symptoms. Her doctors are convinced she has dementia, and they remind her of that frequently.
Here's the thing, though. Bryden gets somewhat better (her doc is reluctant, but eventually believes her). The dementia seems to come and go, and in fact she has been improving or at least steady for awhile, to the extent that she even went back to driving after a hiatus. I don't recall her mentioning what type of dementia she has, but she's had it for many years, so here's my first question: does she really have dementia or some other some other, more treatable neurological condition?
Let me tell you what dementia looks like to me. My mother died of it, and it wasn't pretty - a steadily downhill slide that went from minor forgetfulness to the inability to recognize her own children, from taking care of herself to incontinence to the inability to even know why she was wet, from active to wheelchair-bound to bedridden and comatose. Now I understand that there are multiple types of dementia - the beloved fantasy author Terry Pratchett recently died of a type different from Mom's - but I didn't know of any that might go into remission. Is Bryden's illness the latter and how common is it?
Bryden attributes her improvement to prayers from her church and to God, but if that worked, Mom would still be here - she was an active and unflagging Christian, too, and it didn't help. A better way to look at the church angle is to suggest that some people (Bryden) may be better able to refute the psychological pressure from the medical profession to "be sick" by utilizing the counterweight of prayer. If that's the case, if the severity of the condition maps closely to the intensity of patient hopelessness - how can we exert similar counterpressure in more and different ways? (I get a newsletter from Harvard Medical School that recommends physical exercise, continuous learning, socialization, proper diet, and lowered stress, among others).
After all, dementia is still after all this time not a well-understood set of conditions. Some of the "diagnostic tests" are laughable in their crudity: parlor games like "can you remember five words fifteen minutes later" and sniff tests such as "how close to the jar do you have to be to smell the peanut butter." (I'm not making this up. Google it.) There is even a contingent of dementia researchers who are questioning whether current science is looking at the correct problem. Are tangles found on brain scans indicative of the condition - some people with such tangles have no other symptoms at all - or just an immune response to something else?
Bryden does include some excellent insight into what it's like to have such a condition, and the book is worth a read for that even without answers to these questions.
Recommended.
I received a free copy of this book from NetGalley in exchange for a review.
Here's the thing, though. Bryden gets somewhat better (her doc is reluctant, but eventually believes her). The dementia seems to come and go, and in fact she has been improving or at least steady for awhile, to the extent that she even went back to driving after a hiatus. I don't recall her mentioning what type of dementia she has, but she's had it for many years, so here's my first question: does she really have dementia or some other some other, more treatable neurological condition?
Let me tell you what dementia looks like to me. My mother died of it, and it wasn't pretty - a steadily downhill slide that went from minor forgetfulness to the inability to recognize her own children, from taking care of herself to incontinence to the inability to even know why she was wet, from active to wheelchair-bound to bedridden and comatose. Now I understand that there are multiple types of dementia - the beloved fantasy author Terry Pratchett recently died of a type different from Mom's - but I didn't know of any that might go into remission. Is Bryden's illness the latter and how common is it?
Bryden attributes her improvement to prayers from her church and to God, but if that worked, Mom would still be here - she was an active and unflagging Christian, too, and it didn't help. A better way to look at the church angle is to suggest that some people (Bryden) may be better able to refute the psychological pressure from the medical profession to "be sick" by utilizing the counterweight of prayer. If that's the case, if the severity of the condition maps closely to the intensity of patient hopelessness - how can we exert similar counterpressure in more and different ways? (I get a newsletter from Harvard Medical School that recommends physical exercise, continuous learning, socialization, proper diet, and lowered stress, among others).
After all, dementia is still after all this time not a well-understood set of conditions. Some of the "diagnostic tests" are laughable in their crudity: parlor games like "can you remember five words fifteen minutes later" and sniff tests such as "how close to the jar do you have to be to smell the peanut butter." (I'm not making this up. Google it.) There is even a contingent of dementia researchers who are questioning whether current science is looking at the correct problem. Are tangles found on brain scans indicative of the condition - some people with such tangles have no other symptoms at all - or just an immune response to something else?
Bryden does include some excellent insight into what it's like to have such a condition, and the book is worth a read for that even without answers to these questions.
Recommended.
I received a free copy of this book from NetGalley in exchange for a review.
October 14, 2019
Inspiring - a thank you to Christine and her family for sharing her personal journey with dementia.
To have been diagnosed at the age of 46 must be life-changing and frightening. Christine writes that for people with dementia, their main fear is the 'loss of self'
Christine is intelligent, able to research this illness, from the beginnings to later stages, what may likely happen and how it will be. Christine shares her findings worldwide and has promoted the needs of the person themselves, rather than the carers around them. This book does not beat around, it is factual and unpretentious.
It highlights a common failing in most peoples idea of dementia, we question how Christine is still able to deliver talks and write books. Not only does Christine have to justify her diagnosis but she herself feels there was a time the illness was holding steady and questioned if she was getting better
This is the first time I have read about 'spirituality' for the person with dementia. Clearly Christine is supported and loved by family but it is her spirituality that gives strength, her awareness of her faith in God and writes 'we can find meaning in life in our own spiritualty'
My mother has vascular dementia mixes with Alzheimers which is why I was drawn to reading this book. Again thak you Christine for opening up more in-depth feelings that are not often spoken around
To have been diagnosed at the age of 46 must be life-changing and frightening. Christine writes that for people with dementia, their main fear is the 'loss of self'
Christine is intelligent, able to research this illness, from the beginnings to later stages, what may likely happen and how it will be. Christine shares her findings worldwide and has promoted the needs of the person themselves, rather than the carers around them. This book does not beat around, it is factual and unpretentious.
It highlights a common failing in most peoples idea of dementia, we question how Christine is still able to deliver talks and write books. Not only does Christine have to justify her diagnosis but she herself feels there was a time the illness was holding steady and questioned if she was getting better
This is the first time I have read about 'spirituality' for the person with dementia. Clearly Christine is supported and loved by family but it is her spirituality that gives strength, her awareness of her faith in God and writes 'we can find meaning in life in our own spiritualty'
My mother has vascular dementia mixes with Alzheimers which is why I was drawn to reading this book. Again thak you Christine for opening up more in-depth feelings that are not often spoken around
February 7, 2018
Touching, inspiring, honest and enlightening. After being diagnosed with dementia, Christine Bryden rang up the Alzheimer's Association only to find that they had very little information for people with dementia as most of their resources were aimed at carers and families. The stigma and judgement surrounding this disease means that the very people we should be empowering and respecting are the ones who sink away into the background.
Christine Bryden's journey with dementia is a deeply meaningful and incredibly moving one and it was amazing to get an insight into her life. She's made an active choice not to give up and to believe in her own worth. It was fascinating to hear the various stories of things she, and others living with dementia, have gone through and live with every day. This book talks of how Christine's religion relates to her attitude and world view which was mostly enjoyable but towards the end, the eternal life and more Christian ideas were a bit too much for me. Overall this book is important and a fantastic read.
Christine Bryden's journey with dementia is a deeply meaningful and incredibly moving one and it was amazing to get an insight into her life. She's made an active choice not to give up and to believe in her own worth. It was fascinating to hear the various stories of things she, and others living with dementia, have gone through and live with every day. This book talks of how Christine's religion relates to her attitude and world view which was mostly enjoyable but towards the end, the eternal life and more Christian ideas were a bit too much for me. Overall this book is important and a fantastic read.
April 22, 2021
Similar to Kate Swaffer’s book, much of this book was a slog to get through. The structure is a bit of a collage, with pieces from talks, articles, and emails pasted together. The primary goal seems to be to prove that a person with dementia can write a book, which overshadows the readers’ needs a bit. I went into this book looking to learn a first-hand experience of dementia, which thankfully the author addressed in Chapter 3. But first I had to get through the first two chapters, which quickly unraveled into into a mundane eighty-seven page travelogue of the author’s travels and conversations at DASNI conferences. I kept wondering where the editor was in this process.
Chapter 3 and the Frequently Asked Questions would have helped me when my mom was first diagnosed twenty years ago so they are worth getting the book.
Chapter 3 and the Frequently Asked Questions would have helped me when my mom was first diagnosed twenty years ago so they are worth getting the book.
September 3, 2021
No offence to the author but I couldn't get on with this one. It's the sequel to an earlier book which might have been better. A lot of it is just taking up with a narrative about the author going on a world tour to raise dementia awareness which is fair enough but not really what I was looking for (really something about the hands-on day-to-day business of living with dementia). I ended up skimming it for the most part although there are some more in-depth and personal passages about the effects of this awful disease littered throughout.
December 2, 2025
Christine Bryden’s “Dancing with Dementia: My Story of Living Positively with Dementia” is packed with helpful insights from the perspective of those on the journey “deep into the core of their spirit, away from the complex cognitive outer layer that once defined them, through their life experiences, into the centre of their being, into what truly gives them meaning in life.” Would that we all have the clarity of insight to “know that in this journey towards my true self, with dementia stripping away the layers of cognition and emotion, I’m becoming who I really am”!
April 20, 2018
While I don't agree with her language about dementia being a gift from God, this book should be a must-read for anyone who has just been diagnosed or anyone taking care of someone with dementia. invaluable insights on what living like dementia is like and how to be a care provider for them and meet their needs. It also touches on the importance of including those with dementia in on the conversation about their care and their future.
August 12, 2023
This is a book written by a dementia sufferer. In my view it is written by a very talented author who happens to suffer from dementia. Excellent insight into some feelings and experiences around this illness.
December 22, 2017
Really helped me understand what my mum was going through.
July 4, 2020
Christine Bryden is not fully recognised as the important activist for social justice she is.
Loved this.
Loved this.
April 2, 2015
I received this book via NetGalley, to read and provide an honest review.
I already knew quite a bit about dementia when I started this book, but have always wondered how we know as much as we do about its effects on those affected. I've read about the experiences of carers, but it was really interesting to read a first-hand account. The author has done so much to raise awareness of what it is like to live with dementia, and is a positive role model. Her account of life with dementia supported what I already knew about dementia, and enhanced my awareness. The author has literally defied the odds in terms of her prognosis. I found the book 'wordy' at times, with descriptions of the anatomical and physiological changes, and with lots of reference to the author's faith. However, there was a wealth of information about how those with dementia might perceive the world around them, and how care-givers can help them to live well with dementia. I admired the author's positivity in the face of a terminal illness, and her enthusiasm for sharing with others. Reading this book was quite emotional at times, and I would recommend it to anyone who wants to know more about dementia, professionally or on a personal level.
I already knew quite a bit about dementia when I started this book, but have always wondered how we know as much as we do about its effects on those affected. I've read about the experiences of carers, but it was really interesting to read a first-hand account. The author has done so much to raise awareness of what it is like to live with dementia, and is a positive role model. Her account of life with dementia supported what I already knew about dementia, and enhanced my awareness. The author has literally defied the odds in terms of her prognosis. I found the book 'wordy' at times, with descriptions of the anatomical and physiological changes, and with lots of reference to the author's faith. However, there was a wealth of information about how those with dementia might perceive the world around them, and how care-givers can help them to live well with dementia. I admired the author's positivity in the face of a terminal illness, and her enthusiasm for sharing with others. Reading this book was quite emotional at times, and I would recommend it to anyone who wants to know more about dementia, professionally or on a personal level.
October 12, 2016
If I was recommending this book to someone looking to learn more about dementia I would probably advise them to read the book's third chapter, where the author gives advice on how to be a care partner for someone with dementia, and the FAQs at the end of the book, because I think these are the most educational parts of the book. The rest of the book is a nice insight to Christine's own experiences and is fairly pleasant to read, though if you're in any way uncomfortable with mentions of religion and the healing power of prayer and so on I can see it being a bit difficult to get through!
The main thing I loved about this book was that it made me aware of self-advocacy in the context of dementia; I've read a lot about self-advocacy movements in relation to other disabilities, particularly autism, but I realised while reading this book that I had made the harmful assumption (which is discussed in the book) that people with dementia either can't speak for themselves or don't want to. Despite finding some parts of the book a bit uninteresting, I am very grateful to it for opening my eyes in relation to this issue.
The main thing I loved about this book was that it made me aware of self-advocacy in the context of dementia; I've read a lot about self-advocacy movements in relation to other disabilities, particularly autism, but I realised while reading this book that I had made the harmful assumption (which is discussed in the book) that people with dementia either can't speak for themselves or don't want to. Despite finding some parts of the book a bit uninteresting, I am very grateful to it for opening my eyes in relation to this issue.
November 21, 2012
My mum has Alzheimer's Disease, and this book has been a great help in understanding some of what she is going through, as she comes to terms with the diagnosis and as her brain physiology changes. Christine Bryden has written a very insightful and honest book. I particularly appreciated the appendices, listing the different types of dementia and their treatments. I feel that, having read about the effects of dementia from a sufferer's perspective, I can now be of more help to my mum - more patient with her, and more able to encourage her to retain as much of her independence as she can for as long as possible. It should be required reading for any healthcare professional working with dementia patients, and I highly recommend it for anyone who has dementia and is still able to read, as well as for people who are caring for someone with dementia.
February 24, 2015
Far too much of this book is taken up with the story of the author's world-wide book tour. A world-wide tour that, incidentally was paid for by the pharmaceutical company that makes one of the top (alleged) dementia-slowing drugs on the market. Hm.
January 24, 2013
Fascinating insight into someone with dementia and their thoughts
July 7, 2014
As a dementia patient myself, Christine's writing is terrifically inspirational. She is absolutely amazing!!
Displaying 1 - 18 of 18 reviews