More than four million Americans suffer from Alzheimer's, and as many as twenty million have close relatives or friends with the disease. Revolutionizing the way we perceive and live with Alzheimer's, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between carepartners and patients and has proven successful with thousands of people living with dementia. Learning to Speak Alzheimer's also offers hundreds of practical tips, including how to - cope with the diagnosis and adjust to the disease's progression - help the patient talk about the illness - face the issue of driving - make meals and bath times as pleasant as possible - adjust room design for the patient's comfort - deal with wandering, paranoia, and aggression
Joanne Koenig Coste was pregnant with her fourth child when her husband was diagnosed with Early-Onset Alzheimer's. This was 1971, a time when very little distinguished the disease from the rather amorphous categories of dementia and senility. A hard road followed, down which she was compelled to draw her own conclusions and formulate her own strategies to contend with what might well be termed Reason's Armageddon. Once her husband passed, she took work in assisted living facilities, became chairperson of the Massachusetts chapter of the Alzheimer's Association, and eventually came to run an organization called Alzheimer's Consulting Associates which has her deeply immersed in the field and lecturing around the country on a subject she now knows quite well.
Learning to Speak Alzheimer's is a highly-regarded guide aimed toward those caring for Alzheimer's patients - be they spouses, children, or professional support staff. This is a gentle introduction to the disease, followed by methods of care that focus on human connection and understanding. It is Coste's contention that, as words begin to jumble and disappear, emotional realities rise to the fore to provide access to routes of productive communication. Say, for example (and this is quite common), a sufferer of Alzheimer's begins to talk about theft and money being stolen. The emotional reality is one of loss. She is saying something very important is being taken away from her. And this is true. It's not money, though. It's memory and mental capacity. Understanding the emotional context allows an authentic exchange to occur, which can lead to the alleviation of her distress. This is another language for us to learn, and one that is directly applied toward the reduction of suffering in the world.
Additional chapters cover ways to make the physical environment less confusing, activities that build mental pathways around those in the process of closing down, and the many practical concerns of caregivers who deal with the declining mind on a day-to-day basis. It's a heart-wrenching subject to be sure, and one none of us wishes to deal with until we absolutely have to.
When you absolutely have to...this is a book to choose.
Helpful tips for living with a person who has Alzheimer’s or a senior with a failing memory or abilities. For example:
1. Make the physical environment work (e.g., eliminate clutter, reduce choices to avoid over-stimulation/confusion – limit a choice to 2 items, avoid too much noise)
2. Know that communication remains possible (e.g., establish eye contact when possible, speak slowly in a low tone using simple sentences, avoid asking open-ended questions, give the person time to think, listen to the emotion behind the patient’s words, humor remains the best way to communicate)
3. Focus on remaining skills (e.g., balance independence with avoiding failure, focus on repetitive tasks that can be done successfully)
4. Live in the patient’s world / habilitation (e.g., avoid too much alone time, don’t “test” the person with questions, may interpret sounds differently as frightening or agitating)
- When the patient asks the same question repetitively, he doesn’t [may not] want the question answered; rather he wants to articulate some feeling behind the question. Example: "What time is it?!" may be asking for something to occupy his time. "Where is my mother/father?" may be seeking comfort and reassurance.
5. Enrich the patient’s life (e.g., routine underscores a patient’s feelings of security, activities to stimulate verbal, visual and motor skills)
- Don’t reason with someone who has lost the ability to do so. - Don't hesitate to use white lies to keep the situation manageable. - Distract the person with another task, situation, or thought, instead of dwelling on the problem. - Getting lost in memories: If the patient mistakes someone for a person from the past or thinks he is in a different place entirely, allow him to take you where he wants you to go. However, if the memories are unpleasant, distract the patient and remove the trigger of the unhappiness. - Follow the patient’s logic or thought pattern, entering his sense of reality. Then gently lead him back to your world. - Guide the person through or take over as inconspicuously as possible a problematic activity to allow him to maintain a sense of control for as long as possible. Help the person get started with the activity if appropriate.
I have given this the converted 5 star review because of the absolute wealth of information written in an easy to read style with many examples and anecdotes. I am very glad I purchased a paper copy as many many pages are full of notations and underscoring. This book will be referred back to frequently now as our family walks this journey with a loved one. It is actually an amazing compliment to the free University of Tasmania MOOC course called Understanding Dementia that I tell everyone about and recommend highly. My copy with be shared with family and on hand for interactions with our loved one. This insidious disease is impacting on the lives of more and more people every year. Since I began walking the path with my family member I have been very open in discussing the diagnosis with others and have discovered the reality that about 80% of people I have contact with have also been touched by this same disease but have been reticent to speak out. Education and openness is the only way to raise awareness and survive this journey. I hope this review may help others seeking information to read this book and look for help, educational and support and therefore make the experience better for everyone involved. Good luck everyone
I think what drives my five-star rating for this book was my five-star need to find a roadmap into the Alzheimer disease which is taking my 92 year old mother from me slowly, by inches and by days. I hope you never need a resource like this, because I wouldn't wish the burden of a loved one with Alzheimer's or dementia on any other soul. However, if your time comes, you will be better able to function as a caregiver if you have read this book and kept it as a readily accessible resource.
I'm going with 4 stars: I have nothing yet to compare it to re: subject matter, utility or accuracy, so all I can rate is "was it a good read for ME?" Yes, it was.
I think it's safe to assume that no one browsing through Barnes & Noble suddenly says "Wow! That book on Alzheimer's looks riveting, let me add that to my pile along with the new Jack Reacher and Stephen King novels." You don't buy a book on a disease unless you're starting a new journey into unfamiliar lands and you're desperate for any kind of roadmap.
I chose Learning to Speak as the first read from a pile because it "looks" like a simple primer: hopefully providing a good starting point of foundational knowledge and broad context, which can serve as an informational cornerstone upon which I can build.
From that lens, this book was a good (and perchance lucky) choice. Informative, easily digested and understood, and emotionally relatable, Learning is a good "Alzheimer's 101" book offering an introduction to the disease from the human, behavioral and care perspective. It provides helpful academic and personal examples of changes, behaviors, and coping mechanisms for patients and caregivers. In many ways (though not as complete), I am reminded of reading "What to Expect When You're Expecting": You're about to embark on a new course of life which is unknown, terrifying, and ultimately in which the life, care and well-being of another human being will be in your hands - what now???
It does NOT deal with medical causes, therapies or treatments. For this read that's a good thing: medical research and therapies change rapidly and it's impractical to commit it to a book. This read is not about the medicine, it's about the care.
Also of great help was the list of resources, support & educational groups, care & feeding suggestions, and additional research assets listed in the appendices. As a first read, I'd recommend it as a good starting point.
Joanne Koenig Coste's experience with Alzheimer's disease predates the National Alzheimer's Association! Her husband was diagnosed with what we now know to be Early Onset AD when she was pregnant with their 4 child.
Quickly coming to grips with the reality of what was turning her life upside down, she did what she had to do.
Luckily she was near Rush Medical Center in Illinois, which pioneered the U.S. early work in the dementia field -- and is why the Alzheimer's Association is also based in Chicago.
This book reads like a novel, but is FULL of support and practical advice on what to do first, how to get-it-together and take the demon AD by the horns while loving and caring for the whole family -- with LOTS and LOTS of help.
If you ever have a chance to hear her speak -- do so -- she is awe-inspiring, and right there with all of us.
Not a bad book but: 1. Too simplistic for me. I’m not a fan of the examples or the way the material is presented. 2. Too late in our journey with dementia. 3. Don’t need the section on self care for the caregiver.
That being said, the concept is spot on. You have to meet the person with dementia where they’re at and live in the moment with them. Don’t correct them or try to get them to remember. Treat them with dignity and try to understand the root of what they’re asking or saying instead of the surface words. I could see how one could write a book on the subject, but a significantly shorter book.
In the early 1970's, the author's young husband demonstrated memory issues and was ultimately diagnosed with Alzheimer's disease, a disease with few resources for patients or families. With four children, including a toddler, Joanne Koenig Coste, developed an approach that she labeled "habilitation" and herself as "care partner." Focused on maintaining the patient's independence, the approach is practical and respectful, mindful of all that the patient has, not lost. The book is for laymen, organized in three sections: Learning about Alzheimer's; Five Tenets of Alzheimer's; and Beyond Habilitation and also includes a glossary, an appendix, and further resources. This is an accessible resource addressing the countless questions and concerns that surface and is a good "primer" for those new to this devastating disease.
Joanne Koenig Coste's groundbreaking book helped many people whose loved ones have the disease to view Alzheimer's, not as a scourge to combat, but as a language to learn. It was a major shift. For many, including health professionals, it was a relief. At last, they could stop the futile attempt to reason with someone whose reason is declining, for physical reasons currently beyond anyone's control. They could focus instead on habilitation, Koenig Coste's term for making the patient as capable as possible.
Her five tenets of habilitation are:
1. Make the Physical Environment Work. Simplify the environment. Accommodate perceptual loss by eliminating distractions.
2. Know that Communication Remains Possible. Remember that the emotion behind failing words is far more important than the words themselves and needs to be validated.
3. Focus Only on Remaining Skills. Value what abilities remain. Help the patient compensate for any lost abilities without bringing them to his or her attention.
4. Live in the Patient's World. Never question, chastise, or try to reason with the patient. Join her in her current "place" or time, wherever that may be, and find joy with her there.
5. Enrich the Patient's Life. Create moments for success; eliminate possible moments of failure, and praise frequently and with sincerity. Attempt to find humor wherever possible.
Koenig Coste's approach makes sense, and in the book, she reinforces it with stories, checklists, practical tips, and appendices like "Good Food for People with Alzheimer's." It's no wonder that her philosophy has become mainstream.
This book was recommended by my brother's doctor for me to read to help me find a better way to interact with him while he is living with Dementia with Lewy Bodies. Maybe it's because I've been dealing with this for more than 3 years with him, or maybe it's just the differences between Alzheimer's disease and DLB, but I found most of the book to be condescending and blaming of the "care partners".
One passage that really stands out deals with how to deal with aggressive behavior. In the example, the caregiver walked up behind a patient and put a bowl of soup on the table. The patient then reacts badly, throws the bowl of soup at the caregiver, along with a magazine. The author goes on to explain that the patient's behavior was *obviously* the fault of the caregiver (a recurring theme throughout the book) and if the caregiver had just behaved differently, the patient wouldn't have acted aggressively.
Another example of really bizarre advice is about a patient who tries to open the car door while the car is going down the road. The solution? Don't take the patient anywhere in the car. Now...this begs the question...how do you get the patient to Doctor appointments, daycare, etc, if you can't drive them? Even if bus service were available everywhere, putting a person with dementia onto a bus full of people is a terrifying thought.
The book did have some good things--it laid out a timeline of Alzheimer's progression, and it discussed the different types of long term care in a better, clearer way than I have seen before.
Very good description of Alzheimer's from the point of view of person whose husband had the disease set in while she was pregnant with their last child. This is a realistic almost harsh reality look at the disease and its effects. How to deal with the day to day issues that arise with Alzheimer's patients and what resources may be needed are laid out clearly. The term "habilitation" is coined to describe what the person who is the caregiver/partner is doing to deal with the patient. Very helpful in understanding what the problem is for the Alzheimer's patient.
Every occupational therapist working with patients with neurodegenerative disorders should read this book. The habilitation approach breaks down domains and areas of the patient's life similar to the OTPF and many other OT theories. The book offers hundreds of examples on how to modify tasks or the environment in order to optimize the patients current level of functioning in order to maintain/preserve independence.
This is a great book to have on hand as a reference. It does a great job explaining how to meet your loved one at their level and to live in their world. Why tell someone with Alheizmers that their mother died when they ask for her? Don't cause them more pain. Instead, tell them that their mother is out shopping and will return later. Understand that wanting their mom means they want comfort (in most cases) and to provide that in some way, like tea or a warm meal.
This book is easy to read with many practical tips. It also allows us to peer into the patient’s world and to meet them where they now reside. I wish there had been more help regarding the paranoid aspect of this illness. However, I have highlighted so much with my yellow marker and I am sure I will refer back to this in the years to come.
This wasn't very helpful for me personally. I have a dear friend who was recently diagnosed with Alzheimer's whom I'll be visiting in a couple of months, and I wanted to get an idea of what to expect and how to behave with her. This is more of a practical guide for care-givers of Alzheimer's patients.
Truth be told, I did not read this cover to cover! Not because it wasn’t well written or engaging, but it was a bit difficult (emotionally) to read. Im still giving it five stars because I think this is a fantastic resource with a wealth of information and I’d highly recommend for anyone who has a loved one with Alzheimer’s.
This was an excellent book! Joanne did a great job explaining what is happening inside the mind of someone with Alzheimer's without getting to technical and confusing. I could tell from her writing that she had personal experience living with and caring for someone with this disease. Her explanations, advice, and tips were all helpful. I ended up buying multiple copies of this book to share with family as we travel this journey with my grandfather.
This was an VERY helpful book. It's practical describing the stages one goes through who is experiencing the disease,it provides very helpful strategies for caregivers on providing creative and positive physical, psychological and spiritual guidelines, and it also gives the caregiver ways in which they can cope with their circumstances on a personal level. I would HIGHLY recommend this book for anyone who is a caregiver to one experiencing this devastating disease.
A must read for those with loved ones with Alzheimer's. I love how the book helps you understand what is happening, and how to treat your loved ones with respect and dignity as they and you face this difficult, slow death. Bittersweet, I had to read small portions at a time, as it brought up emotions and thoughts that had to be dealt with as I thought of my own father. So thankful for the insight and the love this book brings to this disease.
I listened to the audiobook in preparation for a blog post on Alzheimer’s resource books. This book is the most practical. The author developed “habilitation”, a way for caregivers to manage to Alzheimer’s patient. Examples and anecdotes illustrate the bullet points of habilitation, and physical, spiritual, financial, and emotional concerns are all discussed in a succinct manner. Recommended.
Although perhaps parts are dated (copyright 2003), there is much useful information and insight for those this horrible disease is touching. I read it as a Pastor making the journey with several of my congregation, and especially found Chapter 9 on behavioral changes very helpful. Praying one day this book and others like it will no longer be needed because this disease where you lose the person before you lose the person will have a cure.
I wish I had found this book three years ago after my husband's Alzheimer diagnosis. Some of the lessons we have already gone through, and many more nuggets of wisdom offered will help as this awful disease continues to take up more real estate in his brain.
I would recommend this book for anyone dealing with Alzheimer's, as a caregiver, family members, and especially those who work with Alzheimer's patients.
Simply written, but incredibly helpful and insightful nonfiction guide to caring for a loved one with the disease. You will learn how to understand the patient's new world and how to help keep him/her engaged in life as much as possible. I personally will need this when helping to care for my sister in a few weeks.
I got this book ages ago, but couldn't bare to read it. I finally forced myself and still don't think I was ready for it. Coste did an outstanding job of making Alzheimer's easy to understand. The stories she told made it relatable to where you would know what to do if those situations arise. Highly recommend for anyone who has Alzheimer's in their life. :)
An absolutely essential read for anyone dealing with Alzheimer's in any capacity. Coste offers a first-hand account of her life dealing with her husband's disease and it was very moving and practical.
Really useful advice and tricks of trade for Alzheimer's care and how to successfully interact with patients. Give this to anyone whose loved one in is late mild to moderate stages. A giant step beyond the 36 Hour Day.