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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, July 09, 2013

Contented Dementia

Washington DC
I’ve just finished James Oliver’s Contented Dementia, a book that describes a teachable method for caring for people with moderate to severe dementia.  
The emphasis is on reducing the “client’s” (Oliver’s word, even if it’s your mother) fear and anxiety by discovering the context to which they are responding and then entering into that context as completely as possible.  Imagine our context as a series of pictures in a scrap book.  If all the pictures are there, we respond out of “reality.”  The primary “difference between the person with dementia and the person you used to know is a single disability: they can no longer store information [the pictures] efficiently” and must often, therefore, respond based on the few pictures that remain.  So as the person with Alzheimer’s tries to respond to the question, say, “What did you have for lunch?” but can’t find the picture for today’s lunch, some other picture has to be chosen.  And in that other picture lies the problem.  But if the caregiver can discover the set of pictures from which the client is acting, problems can be avoided and wonderful opportunities for new life can arise.

Out of that understanding come three rules:
  1. Don’t ask questions.  Almost any question requires the client to retrieve new information.  If they’re unable to do so, they can become anxious and fearful.
  2. Learn from them as the experts on their disability.  Assume that everything the client says or does has meaning within their world of limited memory and perception.  If we don’t understand the pictures they’re acting from, their responses won’t make sense, but if we enter into their world with them and discover the meaning of their behavior, then we can act in a way that responds to their needs as they perceive them.
  3. Always agree with everything clients say, never interrupting them. First of all, disagreeing with clients requires them to access the pictures they no longer have, which can arouse significant anxiety.  Second, it precludes our entering into their world, preventing us, the caregivers, from gathering information about their reality.

I noticed a simple example in Quartet, a movie about a nursing home for retired professional musicians.  At the movie’s decisive moment, when they’re about to go on stage, the quarter’s demented member heads for the door because she “has to catch her train.”  Two of the others try to dissuade her by telling her how important the moment is, pleading with her, reminding her how much they need her.  But she becomes increasingly agitated and insistent on leaving.  The fourth member of the quartet, however, recognizes what’s happening, enters into her world and tells her simply that she has plenty of time to catch the train. 

My immediate reaction was that never contradicting the client is just enabling her disoriented behavior.  But my reaction, I think, is based on my judgment that she has some control over the pictures that go missing and, that if I just insist she find them, she can.  There’s too much of the parent in me: I shouldn’t let her “get away with it,” I think.  It’s just plain dishonest and disrespectful of her, my judgment tells me, to pretend that her world makes sense.  And I don’t want to look silly to others by entering into a farce.

My initial reaction, however, ignores the fundamental fact that she perceives her current-day world within pictures that I can’t see.  The opera singer is desperately trying to understand what’s happening to her (the other members of the quartet are holding her back) in the context of her other pictures (the need to get to the train).  They can help her make sense of her experience only by entering it, acknowledging its validity, and offering her a response that simultaneously satisfies both the “real” world and hers.

It is a remarkable book, detailing unique insights and their implications for the care of a person with moderate Alzheimer’s.  I can imagine some point in my journey when I will appreciate a person who can join me in my world and see my pictures rather than insist I respond to pictures I don’t have.

18 comments:

  1. Good post. You have a lot of good common sense. Working with dementia patients for the past 20 years, its important to work in the same context they are in. Knowing them well enough to know their families, their children, etc. If an old farmer is wandering around, raving that he can't find the key and its time to plow or plant, I know his son's name and can say, "Jr. took the key so he could take the tractor home to change the oil." It makes sense to the patient, and he calms down. If Jr. walks in, I usually would walk by and quietly say, "Remember you took the tractor key so you could change the oil." And when Dad said, "Where's my key?" Jr.
    was ready for it.

    The things that are important now, are things that were important then. the things that they valued, that gave them their meaning in life, they still want in their life. It was important to the farmer to plant or plow. It was what he did. What he wants to do. When we would get a new patient, we would also get a small bio, with what was important and the things he likes to do or talk about.

    If the patient is saying, "I'm going home right now!" I have been known to say, "You can't. The snow is so bad, the plows were taken off the road until tomorrow." The old farmer will blink, think for a few minutes, then go sit back down. Its something they under stand (even in JULY LOL).

    I enjoy reading your posts. It definitely gives one something to think about and ponder.

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  2. Oh, how I wish I had read this when my father or my mother-in-law was so confused. I look back now and realize how foolish my young self was, to try to convince them of what was "real" instead of just entering their worlds. Thanks for this post! I hope if I need to remember this again for someone else, I WILL remember. And if I never need it, someone else undoubtedly does!

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  3. I agree with Judy. I remember trying vainly to reason with my parents, and how their confusion became anger. This way is so much easier.

    My husband and I just watched "Quartet" last weekend. I really liked it.

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  4. I worked for 10+ years on and Alzheimer's unit and constantly had to counsel families on this. Arguing with an Alzheimer's patient is like arguing with a toddler (no disrespect intended) - you will never win, because the client has no ability to make the mental connections that are required. The dignity issue is tough - but you have to join the client in his or her reality, because s/he'll never be able to join you in yours.

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  5. Just as there is no sense in continuing to reorient the person to the death of their spouse or children. Why should the patient have to go through that over, and over and over again. If a patient says they are waiting for their husband, it helps no one to reorient them, "Honey, remember George died last year." "Oh no! I am alone. George can't be gone." etc. The mourning is real. Its as if it just happened when you remind them again. If a patient is wandering around looking for their spouse or child that has passed, it is more humane to say, "I bet he'll be here after you eat lunch." Because by lunch time you can again change the time to later. but its calming to them to have someone validate their cares. Even if we don't reorient them to reality.

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  6. I am actually surprised to be getting so much positive feedback to this post. After I'd put it up, I was afraid it would be misinterpreted as too simplistic, but apparently you've all been able to see through that problem into the heart of the matter. for which I'm grateful.

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  7. I recently went to visit my Dad, who has Alzheimer's and small cell lung carcinoma. He is in a nursing home in Canada; I am living in the Middle East. I spent about a month with him. For some reason, I felt I had to be 'honest' with him the night before I left back for the Middle East. We had brought him to my sister's for a BBQ and some fresh air. I told him I wouldn't see him for a long time. That we (my husband, my daughter, and me) would be leaving that night. I felt that need (I now believe "wrongly") to tell him the truth ... the 'truth that he wouldn't remember tomorrow'. My Dad is so stoic; he's always been the rock in our family. As I bid him goodbye through barely veiled tears, he smiled and told me to take care of myself and my family. He walked away so strong. My older sister told me later that he cried all the way back to the nursing home. She was crying as she told me this, because she'd never seen him cry before. He didn't know/remember why he was crying. But the sadness stayed with him for several days. All this because I imposed on him 'my' reality, 'my' need for honesty. In reality, if I would have just said "Bye, Papa, I'll see you tomorrow", he would have left quite happily, and not have been bothered by me not showing up the next day. I have a lot left to learn. Thank you for your post.

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    Replies
    1. That is a powerful story! We all have a lot to learn. Thank you for writing.

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    2. Anonymous9/24/2013

      My husband was diagnosed three years ago and the progression into early mid-stage of the disease has been slow but definitely recognizable. He is in denial about how advanced it is. I finally have come to the conclusion through much trial and error that I can't help him by trying to explain the reality of what happened. It only causes excessive frustration for him and makes my job more difficult for a period of time. So glad I discovered this blog only wish I had found it earlier.

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    3. If you haven't already, you might find it interesting to read my post on denial of the disease vs incapacity to recognize the symptoms, on Aug 21, "It's Not Denial."

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  8. Anonymous7/24/2013

    I too am learning. Caring for someone with alzeimers is a learning process but once u get it you know how to handle any situation that arises. My mom has pca posterior cortical atrophy her reading and writing ability was affected first. She is well aware of her limitstions. In the beginning she told everyone she had a brain problem. I think the scary part for her is she knows somethings wrong. She just started havimg trouble getting her bearings on where she is. Sometimes she had no clue she is in her own home and she knows she doesnt know. Its a horrible disease especially for the person who has it. Maybe one day someone will figure out how to eradicate this disease.

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    1. As you are probably aware, posterior cortical atrophy is a variant of Alzheimer's (AD) that occurs in the back of the brain. Therefore, it usually causes somewhat different problems than in typical AD: Memory and language are typically not so much affected, but vision and literacy are usually more affected. I wonder if it's harder for your mom since her memory isn't affected and she remembers more what she's lost.
      Thank you for writing.

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    2. Anonymous8/31/2013

      Its awful when they know that they don't know! Trying to figure out how to deal with that when the pressure on him gets too great and he goes into a deep depression from it.

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  9. Fibs....I tell them to my hubby. It makes my life easier and he is happy.

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  10. Anonymous9/26/2013

    I have been diagnosed with Vascular Dementia at age 43. I am now 47, and I feel like I am fading must faster than before. My wife can't seem to cope with me and my stupid thoughts. I wish there were more places to where caregivers could get together and learn/cope. My greatest fear of growing old was to get Alzheimer's (all of my grandparents on my mother's side, and all of there families had Alzheimer's--more than 15 in all died of it), and I get Vascular Dementia? It's scary when your Neurologist shows you an MRI and says it's equivalent to a 75 to 80 year old brain. The worst of all is the constant embarrassment I feel for letting my family down, I was always the rock. Thanks for this website, although we have different diagnoses, the similarities are somewhat comforting.

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    1. Yes, I'm glad the blog is comforting. The similarities between our two diagnoses are far greater than the differences. Do you know of support groups for caregivers in your area? If not, the Alzheimer's Association (www.alz.org) has a list of groups all across the country and you can find one in your area. Most of these groups are for caregivers. But increasingly there are groups for affected people, too. (Or you can start your own. I suspect the Alzheimer's Assoc. would be able to help you get started.)

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  11. Anonymous10/02/2013

    Fantastic post David, a really good summary of how the CD approach works. (I've been on a SPECAL course because of a relative's recent diagnosis and it was invaluable, we're all busy now putting its principles into practice).

    Contented Dementia's book doesn't always explain itself well: like you I feel the need when stating the 'three golden rules' to slightly further explain them because stated baldly, they can give the wrong impression. But to anyone coping with dementia it would be well worth investigating SPECAL more.

    To Anonymous who posted in September, and even perhaps David H, I would recommend that someone key in your lives goes on a SPECAL course. 2.5 days and £225 later, I have both a HUGE understanding of how to help my relative, without compromising her dignity and control, and seem to be able to explain it to other members of the family.

    If I were diagnosed with dementia this is what I'd like my family to learn all about. I think that's the best recommendation I can give.

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    1. Could you give us a link to how to get the summary you mentioned? Are their SPECAL courses here? (£225 will be a relatively small part of the cost when travel, lodging and food are added in.) Where are the best places to read about it?

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