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What If It's Not Alzheimer's?: A Caregiver's Guide To Dementia 3ed
by GARY RADIN (Author) Format: Paperback
4.4 4.4 out of 5 stars (103)
Although the public most often associates dementia with Alzheimer's disease, the medical profession now distinguishes various types of oothero dementias. This book is the first and only comprehensive guide dealing with frontotemporal degeneration (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, socialization, adapting the home environment, and behavioral issues. In the following section on caregiver resources, the contributors identify professional and government assistance programs along with private resources and legal options. The final section focuses on the caregiver, in particular the need for respite and the challenge of managing emotions.
This new, completely revised edition follows recent worldwide 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. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from frontotemporal degeneration.
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Review
""What If It’s Not Alzheimer’s? is a must-read for anyone dealing with a diagnosis of dementia, especially FTD. The practical information, the resources, and the depth of understanding reflected in this book provide a comprehensive reference to guide and accompany a person throughout the journey.” ―Susan L.-J. Dickinson, MS, CGC, executive director of the Association for Frontotemporal Degeneration “I am certain that no other lay writers have been more dedicated to updating the vital information to help caregivers navigate the emotionally trying, ever-evolving landscape of early-onset, non-Alzheimer’s dementia. These caregivers remain underserved, highlighting the importance of this book and of finding each other.” ―Dr. Tiffany Chow, behavioral neurologist, author of The Memory Clinic Praise for the first edition: “[A]n updated handbook packed from cover to cover with tips and information for caregivers and sufferers alike." -- Bookwatch “[D]eals with a topic about which little has been written. ...an excellent resource....makes an important contribution to the family caregiving literature because of the biomedical and professional insight it offers into an important but rarely discussed type of dementia.” -- Canadian Journal on Aging
About the Author
Gary Radin (Mullica Hill, NJ) and his mother, Lisa Radin (Las Vegas, NV),provided complete in-home care for father and husband Neil Radin over a four-year period. In 1998, they established the Neil L. Radin Caregivers Relief Foundation. They are both support-group facilitators and have been involved in planning and coordinating FTD caregiver conferences.
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What If It's Not Alzheimer's?: A Caregiver's Guide To Dementia 3ed
What If It's Not Alzheimer's?: A Caregiver's Guide To Dementia 3ed
Product details
Publisher : PROMETHEUS BOOKS
Publication date : 15 October 2014
Edition : 1st
Language : English
Print length : 340 pages
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From other countries
A Baker
5.0 out of 5 stars Excellent total reference book...
Reviewed in the United States on 27 July 2016
Format: PaperbackVerified Purchase
FTD - fronto-temporal dementia - is the second-most common dementia after Alzheimer's disease, yet few seem to realize not all dementias are the same. An exceedingly tough subject to write about - Radin is informative, candid, and clear. He makes good use of research, statistics, case studies, and includes experiences from people in the field, both professional and non-professional. Most of all, his tone is never condescending: there is an underlying warmth but an overall practicality that is perhaps more useful than anything else to the FTD caregiver. There are a lot of compassionate books out there, and a lot of people write about the emotional and psychological struggles in dealing with FTD; equally, there are a lot of publications that are pitched to those in the medical field, articles and books full of specialized jargon and obscure references. Few books hit the middle zone of no-nonsense advice, clear information about what to expect, and information on resources, organizations, online groups, etc. If you're a caregiver, if you know someone who is, if you know someone in the throes of FTD and want to learn more, this is the best comprehensive guide I've seen.
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S.
5.0 out of 5 stars Extremely precise and useful
Reviewed in Italy on 13 October 2016
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The book delivers what it promises. Very insightful and definitely the best in the topic nowadays. I'm glad I've purchased it, gave me a whole lot of information about a disease that's not quite well treated elsewhere
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Esther
5.0 out of 5 stars Five Stars
Reviewed in the United Kingdom on 20 April 2017
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Tough love.
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DMillikan
5.0 out of 5 stars At last: someone who gets it!
Reviewed in the United States on 1 August 2016
Format: PaperbackVerified Purchase
An excellent "up close and personal" look at FTD (fronto-temporal-temporal dementia), a form of dementia too few members of the public, caregivers, and medical professionals recognize or understand in its subtleties. It should be required reading. Written in a no-nonsense but compassionate tone by a woman whose brilliant husband slowly disappeared before her eyes. So many helpful suggestions from a wise author who obviously wants to help lessen the suffering of others who are grappling with this cruel disease.
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H. Ossareh
4.0 out of 5 stars Four Stars
Reviewed in the United States on 26 November 2017
Format: PaperbackVerified Purchase
Good book, and informative. BUT: too many words...WAY too many words...get to the point!!! Sometimes I feel like I read 5 pages of text without learning anything.
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Marie S. Reynolds
5.0 out of 5 stars Very good information regarding FrontoTemporal Degeneration
Reviewed in the United States on 28 February 2016
Format: PaperbackVerified Purchase
Very good information regarding FrontoTemporal Degeneration, a little known dementia. The authors share knowledge, based on their experience as caregivers, including how to prepare for the inevitable end, including legal guidelines on how to guard family financial resources. They advise how to deal with social agencies and many more things that the average person wouldn't even think of. It's a must read for families dealing with this terrible disease.
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S. Nelson
5.0 out of 5 stars A great resource
Reviewed in the United States on 4 July 2016
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I really liked how this book is a great resource book including an index to go back and refer to as different symptoms arise. Along with that being said it also goes into the emotional changes and physical changes of the patient and the caregiver. It also has countless ideas for each situation you might be facing. Although easier to read on kindle I am considering getting a paper copy just for reference.
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Mary
3.0 out of 5 stars Three Stars
Reviewed in the United States on 27 March 2017
Format: PaperbackVerified Purchase
Most everything I order from Amazon is perfect. Books the subject is hard reading.
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pam
5.0 out of 5 stars Very well written and filled with some of the best information I have found
Reviewed in the United States on 31 December 2016
Format: PaperbackVerified Purchase
This is not a book I wanted to have to order, but since I needed to learn about this, of course I got it. I was impressed with how well laid out the contenct was and how well it answered so many of the questions I had. If you are facing a future with Frontotemporal Dementia, I highly recoment this book for you. The more you learn, the easier it will be. Very well written and filled with some of the best information I have found.
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Jan L
5.0 out of 5 stars A must read for FTD Caregivers or Early Stage Patients
Reviewed in the United States on 30 August 2019
Format: PaperbackVerified Purchase
Lots of useful information in this book. I bought it used and it just had some pages with underlined passages. Did not detract from this being very helpful as you navigate this horrid disease.
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Christina L. Bogle
1.0 out of 5 stars Too technical.. too jargon laced
Reviewed in the United States on 17 February 2023
Format: PaperbackVerified Purchase
Too technical. Too focused on drugs. Too focused on blaming the patient in the early stages. All dementia “care” books repeatedly advise to “take cate of yourself,” ad nasueum for both patient and caregiver.
Caregivers should be more aptly named: “Guardian.” That can’t be done. As someone with the early stages of FTD and trying to work out the rest of my life right now, the chapters on planned dumping of the patient terrify me. Like the annoying and then aggressively behaviors will become too much for the family to handle, hence all the talk about drugs coming into the picture and possible restraints.
With this horrible disease you practically will have to hire a guardian to stay nearby 24/7 in the home to get any relief. Try to do it all then. Cry when you have to dump off your recalcitrant family member in a care home and pay some custodian to take care of the mess at the end. Wait. Don’t visit. At the final end say , “Well, at least she had a good life when she was young”
Move on and forget. At least it’s over now.
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T. Alexander
5.0 out of 5 stars Very informative
Reviewed in the United States on 4 June 2022
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For anyone dealing with a loved one having frontal temporal lobe dementia this book is a necessity. It has helped me keep my sanity, increased my patience hence enabling me to be a better caregiver for my husband. Highly recommend.
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Mich
5.0 out of 5 stars Hope, at last
Reviewed in the United States on 26 May 2017
Format: PaperbackVerified Purchase
My mother has had many years of symptoms that just don't seem to get her the help she needs. Her neurologist told us her issues are not neurological because she doesn't fit their examination of memory issues. This book gave me hope that someone out there might understand and help us. Her problems are centered on executive functioning. I hope to contact the resources mentioned in this book.
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Amazon Customer
5.0 out of 5 stars It is useful for trained and untrained readers
Reviewed in the United States on 13 January 2018
Format: PaperbackVerified Purchase
Very helpful book. It is useful for trained and untrained readers. Very comprehensive. The price was very reasonable. I would recommend this to professionals and to those who find themselves in the difficult position of caring for someone with any type of dementia.
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marta pont geis
4.0 out of 5 stars a practical and precise book for those who take care ...
Reviewed in the United States on 6 January 2015
Format: PaperbackVerified Purchase
a practical and precise book for those who take care of patients with fronto temporal disease.
this book explains all the items of care FTD.
it is a reference book.
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Pooh Cooper
1.0 out of 5 stars Waste of time reading and money
Reviewed in the United States on 14 July 2019
Format: PaperbackVerified Purchase
I wish I had paid closer attention to the 3rd edition’s date instead of assuming it would be less than five years old.
I found the writing too elaborate with not enough detail.
Specific issues only had one perspective, for example, eating: there are three pages on how to manage too much eating, but no mention of what to do when your loved one refuses to eat.
Financial information is outdated and incorrect, and the caregiving section, like many, does not include discussion of how to find respite when one is working full time and caregiving.
Another reviewer mentioned the FTD spouse Facebook page. That is a much better resource than this book is if you have a partner with any type of dementia.
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Jerry
5.0 out of 5 stars Very helpful and reassuring
Reviewed in the United States on 1 August 2016
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This book could be titled, "Everything you wanted to know about FTD, but were afraid to ask". It is packed with helpful information and resources. A must read for every FTD caregiver, it paints an accurate picture of what every caregiver experiences.
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L. Brown
3.0 out of 5 stars This book does not solve my problem
Reviewed in the United States on 4 December 2014
Format: PaperbackVerified Purchase
This book is about one specific dementia problem. It didn't help me. I was looking for a summary of all possibilities if not Alzheimer's.
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Amazon Customer
5.0 out of 5 stars Learn about FTD
Reviewed in the United States on 17 September 2019
Format: PaperbackVerified Purchase
This book is full of useful Information about FTD, it is the most comprehensive I've seen.
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joan rodgers
5.0 out of 5 stars Five Stars
Reviewed in the United States on 11 June 2015
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Very good, my dad has Picks and it really helped understand what his brain is up to.
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Gardening Girl
5.0 out of 5 stars Five Stars
Reviewed in the United States on 27 May 2017
Format: PaperbackVerified Purchase
Important read
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B schab
5.0 out of 5 stars Five Stars
Reviewed in the United States on 8 December 2016
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Very informative
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Sheryl
5.0 out of 5 stars Five Stars
Reviewed in the United States on 27 March 2017
Format: PaperbackVerified Purchase
Excellent!
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Kindle Customer
5.0 out of 5 stars Five Stars
Reviewed in the United States on 11 December 2014
Verified Purchase
Supported my through a rough year!
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Sandra Fellman
5.0 out of 5 stars Five Stars
Reviewed in the United States on 26 May 2016
Format: PaperbackVerified Purchase
Great
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Amazon Customer
5.0 out of 5 stars Five Stars
Reviewed in the United States on 11 February 2016
Format: PaperbackVerified Purchase
Very informative.
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세진님, 요청하신 Gary Radin의 <알츠하이머가 아니라면?: 치매 간병인을 위한 가이드 (What If It's Not Alzheimer's?: A Caregiver's Guide to FTD)> 제3판에 대한 요약과 평론입니다.
요청하신 지침에 따라 본문은 <해라>체로 작성했으며, 가독성을 위해 별표 사인 대신 기호를 사용하여 정리했습니다.
책 개요 및 핵심 요약
1. 전두측두엽 치매(FTD)라는 낯선 괴물
많은 이들이 치매라고 하면 으레 알츠하이머병을 떠올린다. 그러나 65세 미만, 특히 45세에서 64세 사이의 초로기 치매 환자들에게 가장 흔하게 나타나는 질환 중 하나는 전두측두엽 치매(Frontotemporal Degeneration, FTD)이다. 이 책은 알츠하이머와는 전혀 다른 양상으로 전개되는 FTD 환자들을 돌보는 간병인들을 위한 독보적인 가이드북이다.
알츠하이머병이 기억력 감퇴에서 시작된다면, FTD는 인간의 인격, 사회적 행동, 감정 조절, 그리고 언어 능력을 담당하는 전두엽과 측두엽이 손상되면서 시작된다. 따라서 환자는 기억력은 멀쩡함에도 불구하고 완전히 다른 사람처럼 행동하게 된다. 충동 조절 능력을 상실하여 갑자기 도벽을 보이거나, 타인에게 극도로 무관심해지고, 부적절한 성적 발언을 하거나, 특정 행동을 강박적으로 반복하는 증상이 나타난다. 간병인들이 이 질환을 이해하지 못하면 환자의 행동을 병증이 아닌 인격의 파탄이나 의도적인 악행으로 오해하여 깊은 상처를 받기 쉽다.
2. 진단의 어려움과 하위 유형의 이해
FTD는 초기 진단이 극도로 어렵다. 기억력이 유지되는 경우가 많아 표준 인지 기능 검사를 통과하기도 하며, 종종 우울증, 조현병, 혹은 중년의 위기나 성격 장애로 오진된다. 이 책은 FTD의 세 가지 주요 하위 유형을 명확히 구분하여 설명한다.
<행동 변이형 전두측두엽 치매 (bvFTD)> 가장 흔한 형태로, 사회적 규범을 상실하고 감정적 공감 능력이 고갈된다. 무기력증이나 충동적인 행동이 번갈아 나타나며, 식욕 변화(특히 단 음식에 대한 집착)가 두드러진다.
<진진성 비유창성 실어증 (nfPPA)> 말을 유창하게 하지 못하고 문법적인 오류가 늘어나며, 언어 표현 자체가 힘겨워지는 유형이다.
<의미 치매 (svPPA)> 단어의 뜻 자체를 망각하는 유형이다. 말은 유창하게 하지만 사물의 이름을 대지 못하거나 타인의 말을 알아듣지 못한다.
3. 간병인을 위한 실천적 관리 전략
저자는 의학적 설명에 그치지 않고, 일상에서 맞닥뜨리는 기이한 행동들에 대한 구체적인 대처법을 제시한다.
첫째, <행동 조절과 환경 수정>이다. 환자와 말싸움을 하거나 논리적으로 설득하려는 시도는 아무런 소용이 없다. 이성적 판단을 내리는 전두엽이 이미 기능을 상실했기 때문이다. 환자의 공격적이거나 강박적인 행동을 유발하는 자극을 미리 차단하고, 안전한 환경을 조성하는 것이 최선이다. 단 음식에 집착한다면 집안의 모든 간식을 숨겨야 한다.
둘째, <법적 및 재정적 대비>이다. FTD 환자들은 판단력 상실로 인해 무분별한 소비를 하거나 사기를 당해 가산을 탕진하는 경우가 흔하다. 저자는 증상이 악화되기 전 법적 위임장(Power of Attorney)을 확보하고 재정적 접근권을 제한하는 것이 환자와 가족 모두를 지키는 필수적 조치임을 강조한다.
셋째, <간병인의 자기 돌봄>이다. FTD 간병은 알츠하이머 간병보다 심리적 고통과 소진(Burnout)의 속도가 훨씬 빠르다. 사랑하던 가족이 나를 전혀 공감하지 못하고 냉담하게 대하는 모습을 견뎌내야 하기 때문이다. 저자는 간병인이 죄책감 없이 외부의 도움을 요청하고, 주간 보호 서비스나 지원 그룹을 적극적으로 활용하여 자신만의 휴식 시간을 확보해야만 장기적인 간병이 가능하다고 역설한다.
평론: 절망의 심연에서 건져 올린 이정표
Gary Radin의 <알츠하이머가 아니라면?>은 의학계와 간병 현장 사이의 거대한 공백을 메우는 기념비적인 저작이다. FTD라는 질환은 환자 본인보다도 그를 둘러싼 가족들의 삶을 먼저 파괴하는 잔인한 특성을 지닌다. 이 책은 그 잔인한 현실을 회피하지 않고 정면으로 마주하며, 슬픔에 잠긴 간병인들에게 차가운 의학 용어가 아닌 따뜻하고도 실질적인 구성을 제공한다.
1. 다학제적 접근과 생생한 현장성의 조화
이 책의 가장 큰 미덕은 구성의 입체성에 있다. 신경과 전문의, 정신과 의사, 사회복지사, 법률 전문가 등 각 분야 전문가들의 학술적 조언과 더불어, 실제로 FTD 환자를 돌보았던 수많은 간병인들의 생생한 수기가 융합되어 있다. 이는 독자로 하여금 질환의 생리학적 메커니즘을 이해하는 동시에, "내일 당장 환자가 마트에서 물건을 훔치면 어떻게 해야 하는가?"와 같은 극단적인 실천적 질문에 대한 해답을 찾을 수 있게 한다.
2. 제3판의 가치: 진화하는 의학과 제도적 보완
치매 연구는 하루가 다르게 발전하고 있으며, 이번 제3판은 최신 신경화학적 발견과 유전학적 연관성(C9orf72 유전자 변이 등)을 보완하여 전문성을 높였다. 또한 초판 발행 이후 축적된 FTD 지원 네트워크와 제도적 자원들을 꼼꼼히 업데이트하여, 간병인들이 사회적 고립에서 벗어날 수 있는 실질적인 통로를 넓혀주었다.
3. '상실'을 수용하는 철학적 태도
저자는 기술적인 간병 스킬만을 전수하지 않는다. FTD 간병의 본질은 <살아있는 사람을 두고 행하는 점진적인 장례식>과 같다. 육체는 그대로 존재하지만, 내가 알던 그 사람의 영혼과 인격이 먼저 소멸해 버리기 때문이다. 본 도서는 이러한 비극적 상황 속에서 간병인이 겪는 슬픔과 분노, 죄책감을 자연스러운 감정으로 인정하고 위로한다. 환자의 기이한 행동이 나를 괴롭히려는 고의가 아니라, 부서진 뇌가 보내는 통제 불가능한 신호임을 받아들이게 함으로써 간병인에게 심리적 해방감을 선사한다.
4. 한계점
다만 책에 제시된 사회 복지 시스템, 법적 위임장 절차, 의료 보험 및 장기 요양 시설에 대한 구체적인 안내가 주로 미국의 제도와 환경에 기반하고 있다는 점은 아쉬움으로 남는다. 미국 외 지역의 독자나 간병인이 이 책을 읽을 때는 제도적 안착 과정을 각국의 현실에 맞게 변형하여 이해해야 하는 번거로움이 존재한다.
총평
결론적으로 이 책은 FTD라는 거칠고 예측 불가능한 바다를 항해하는 간병인들에게 단순한 위로를 넘어선 정확한 나침반이 되어준다. 알츠하이머라는 거대한 그늘에 가려져 제대로 된 지원과 이해를 받지 못했던 전두측두엽 치매 가족들에게, 이 책은 <당신의 잘못이 아니며, 당신은 혼자가 아니다>라는 강력한 구원의 메시지를 던진다. 치매를 다룬 수많은 서적 중에서도 현장성과 전문성이 이토록 완벽하게 결합된 가이드는 찾아보기 어렵다.
혹시 이 책에서 다룬 전두측두엽 치매(FTD)의 특정 하위 유형이나, 간병인을 위한 구체적인 재정·법적 대비책에 대해 더 자세히 알고 싶으신 부분이 있으신가요?
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