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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.

Sunday, July 14, 2013

I Take It Back ... sort of

Washington DC
About twelve hours after I’d put up the previous post, I wished I could take it back (which was the first time that’s happened).  I realized it was too simplistic and I expected readers to call me out on it.  The author of Contented Dementia seems to be working from the same assumption that most of our culture does: People with Alzheimer’s are basically out of touch with reality and need constant guidance.  The author explicitly states that it’s never too early to put these rules into practice.  Well, I have Alzheimer’s and I, at least, want questions from others, realize my reality is incomplete, and want to be challenged on things.

So I’ve been surprised to have no negative comments or emails; in fact, I’ve had a number of caregivers very grateful for it.  That’s meant I’ve had to reflect more deeply and with more nuance.  What I’ve come to is that Contented Dementia can be a very helpful book for caregivers, but the advice needs to be re-interpreted. 

Here again are the three rules with my re-interpretations.

Don’t ask questions. 

This rule simply doesn’t apply to earlier stages of dementia.  But we need to recognize that any question requires anyone to access previously acquired information.  As dementia progresses and the memories and pictures gradually fade away, questions requiring memories that are no longer accessible may arouse considerable anxiety and fear.  Once the particular pictures disappear, avoid those questions that depend upon them.

Properly understood, the second and third rules, far from being simplistic are actually important principles that I try always to follow in any interaction.

Learn from them as the experts on their disability. 

If the last word is changed to from “disability” to “context,” this is just good advice for anyone.  The person with whom I’m talking is the expert on the context out of which their thoughts and opinions arise.  If I don’t understand something of that experience, I won’t even know what the person means by their words much less how to respond to them.  I, for instance, am a political leftist and tend to favor big government to provide the institutions and services best provided by all of us acting communally (ie through government).  Much of that opinion, however, is based on my 25 years of working with impoverished Americans.  But if I’m talking with a person who pulled himself up by his own bootstraps, who had his business destroyed by government regulations and high taxes, and who knows only of poor people who have abused the system, then I need to know about his context if we’re going to have a meaningful conversation. 

Mostly when I talk with people, I ask a lot of questions trying to understand where they’re coming from.  I assume that what they’re saying makes sense in their context.  That doesn’t mean I agree with them or vote with them, but it does mean I’ll be able to respect them and to live with them.

It’s the same in my conversations with people with Alzheimer’s.  Unless I know their reality, my responses won’t make sense and we’re not likely to get along very well.

Always agree with everything clients say, never interrupting them.

This sounds ridiculous, but it is in fact what I try to do with everyone I meet.  I can’t contradict the pictures that comprise their reality.  In any conversation, I usually find myself fascinated by the context of another person’s experiences.  And when the other person is interested in my reality, we can have wonderful conversations.  Even when we come to different conclusions and, say, vote on opposite sides of the issues, I can’t disagree with their pictures.  My response to the “big government” issue is often to tell my own stories of impoverished people I know or of living in Finland where “big government” clearly “works.” 

It’s the same principle for people with Alzheimer’s.  I’m not going to have much luck arguing with how they experience reality; it’s probably only going to make things worse.  Helpful interactions, therefore, are going to come from entering into their world and responding to it, not contradicting it.

Contented Dementia does over-simplify, at times, but, understood properly, its recommendations still hold. Most helpful are the book’s many, many examples that build upon its basic understandings.


  1. If one sits down with an AD patient, its easy to ask questions that give that patient room to answer, and your next question is based on their last answer. Since working in special care units, I figure I can carry on a conversation with just about anyone in the world. The things the AD patient is interested in are the things that they value in their life, their children, their farm, their parents, etc. We never talk about pets, I wonder if that's because pets have been a loss in their life. Obviously they have outlived their beloved pets. We don't talk about loved ones that are gone, unless they talk about them first.

    Being that I am from good old Iowa farm stock, I can talk farming, cobs being burned in the stove, the blizzards, the year 1925 (they all have agreed that year it was so cold, the rabbits died, and everybody went out and picked them up and canned them for survival) . Their childhood, their children, their husband, their parents, those are the questions anyone is interested in talking about, not just an AD patient.

    I agree with you, Doc. I'm thinking about visiting Finland. I took a test once on "where on the political scale are you", and I tested to the left of Jill Stein, Presidential candidate for the Green Party. Now THAT's left.

    1. Lee Ann:
      It sounds as though you DO ask questions and within guidelines that you've apparently established internally, could you share what they are. How do you limit your questions so that they don't arouse the anxiety and fear that the book Contented Dementia describes?

    2. I always figured if you didn't ever ask any questions, you'll never learn anything new. Its obvious the way a line of conversation is going. If you ask a question and get a dead end, you ask a different question, about something else. Being in Iowa, farming is a good one. A retired farmer can go on and on ad nauseum about planting, tilling, harvesting, selling, mud, snow, rain,tornadoes, hail, blistering heat,etc..........I mentioned to an older gentleman that I heard he had done custom harvesting in the area in years past. He spent the next 30 minutes discussing how to make a John Deere Tractor run on propane. While I was looking interested, I was forming some questions to move the conversation to something else. You have to remember that I was with these same people every day for years. So I knew the things that were important to them, I knew their children's names and what they did for a living, I had met and knew their grandchildren. Grandchildren, for some reason are not as high on the list of topics as you would think. because most grandparents adore their grandkids. Maybe because AD patients remember their own children as young children, the lines between their own children and their grandchildren cross and they remember them altogether as their children. The one woman whose little grandchild takes her for walks outside, and she doesn't know who this child is, but she loves her, doesn't think of this child as her child or grandchild, she is somebody else's child.

      So the lines are drawn between children (grown or just babies) and grandchildren. They just don't bring up grandchildren like they do their own children.

      If somebody is anxious and can discuss what is bothering them, you can reassure them. And they'll believe you. If they fear their daughter won't be in to visit, you can say "let's go check that little notebook in your room, where Margaret writes down when she visits." We go into her room, find the notebook, and her daughter Margaret had written, "Had a nice visit on Saturday. I love you dearly, Mom." That patient calms right down, then, of course, will ask a million times if its Sunday and will Margaret come to visit? And anyone that has empathy or caring will answer that question without impatience, without feeling like they're going crazy, that "yes Margaret will be here about two o'clock." If you can say "Yes, Margaret will be here about two o'clock" ten thousand and one times without losing patience, you do indeed belong in a care unit taking care of these people.

    3. Lee Ann:
      In Contented Dementia, the author advises against asking questions because they require that the person with AD access memories or contexts that they may not have and that that can therefore lead to anxiety. You have a lot of experience in this area, so I'm interested:
      a) Do you also experience that some kinds of questions provoke anxiety or that some kinds of patients usually experience any questions as anxiety-provoking?
      b) If so, what is the difference between the questions that you ask (and that can get people talking comfortably) and the questions that provoke anxiety?
      In other words, in your opinion, to what degree is Contented Dementia correct in advising us to avoid questions to a demented patient?

    4. I never thought about it, really. I never ask technical questions, anything that has a long detailed answer. If one asks a general question, the patient can answer in great detail if he wants, or a very general answer, or just "yes". Your next question depends on their last answer. You can tell if your patient is losing interest, answering in a monotone, acting like they want to get away, etc. But most people, if asked about their children (whether they think they are grown or still kids), their farm, their first car, when they joined the military, their bride, to discuss these things. Long term memory questions.

      I think conversation with anybody is fairly easy, you can tell by their responses and their willingness to talk whether you are on the right path or not.

      If someone is anxious, sometimes if you get them to sit by you, put your arm around them, tell them that you have missed them, they think you're a relative or something. lol. One time I gave a woman a hug and told her, "I have missed you so much." Her answer was: "Oh honey, I've missed you too, how's your Mother?" (she never met my Mother, but thinks I must be a relative. I guess I'd say don't ask technical questions, ask general questions about their past, and if one question doesn't work, ask a different question. If someone is anxious, see if they'll sing or dance with you. I have been known to jitterbug to old music. Its amazing the things my Mom has taught me that I use in special care units. lol

  2. I didn’t comment on your last post. I agree the book’s advice sounds simplistic, but I liked what it said because it gave me hope. Unfortunately, many people in my family are very black and white thinkers. Things are either right or wrong, good or bad. From their perspective…they can’t ever have a conversation with someone with severe dementia because…. They don’t know what to say or how to respond when someone says something that is wrong. They are uncomfortable. Consequently, they shove the person in the corner and never talk to them. They bring them food and make sure they are taken care of, but they don’t even try to interact with them on a personal level. On a human level.

    While I’m striving to outsmart Alzheimer’s the odds are not in my favor. I’m learning that it’s okay to talk about my fears. It’s okay for me to say…hey! I’m afraid no one in my family will ever talk to be again. But I’m thinking if they had a book like Contented Dementia, that might give my family a way to at least try.

    When I read this post, I thought that the advice might help me in my day-to-day interacts with everyday folk.

    1. I certainly hope you can educate your family. My hope is that if I begin now talking about what's coming and continue as long as I can to talk about what's happening and going to happen, we can reduce the fear and embarrassment together.
      Good luck and let us know.

  3. Dear Dr. Hilfiker,

    I was actually quite heartened to read your post yesterday about Contented Dementia. Last September my mother (92) dropped into a rather sudden, full-blown dementia, erupting out of a kind of "hospital delirium" she had recently experienced. (It is likely that she had underlying Lewey Body Dementia.)

    In a matter of weeks, she went from mild short-term memory loss into profound hallucinations and paranoia. Thus began her final chapter, over a three month period, and she gave me a breathtaking gift by allowing me to accompany her on it, as companion, caretaker and guide.

    We all have different perceptions of life-- different realities, if you will. My beloved dogs can go into a frenzy smelling something that I can't even begin to detect-- but my inability to smell what they're so excited about doesn't mean that whatever it is doesn't exist. It merely means that I can't perceive it with the tools I came equipped with. My mother was being threatened by many people that we couldn't see, but they existed to her. Sometimes she would have a frightened, anxious expression on her face, and, when I asked her what was troubling her, she would tell me about "all the people there." I would ask her if she wanted me to tell them all to go home and stop bothering her, and she would say yes. So I would turn to where she was looking, and calmly bid them all to leave. My mother would watch them all "go out" the door of her room, and then visibly relax.

    Interestingly, she remained grounded to me in those careening final months, while she made her way through the fires. I considered it sacred, and I was subsequently allowed to become part of her reality, in a way. She and I spoke freely of what she perceived, and I addressed all of it with her, querying her about the (invisible-to-me) visitors, speaking directly with them, helping my mother to navigate through them.

    I have many strange, remarkable stories of this last adventure with her, and your post yesterday reminded me of those times. It would be arrogant to not respect what she was perceiving, and rude to not ask about it from her point of view. My job was to protect and comfort her, not tell her what was real and not.

    Thank you for the wonderful, articulate post yesterday, and for all of your writings. We so often react badly to things we don't understand, and usually fear. Your insights are incalculably valuable.

    I wish you happiness and warm inclusion,

    Katrina Anderson
    Newton, MA

    1. What a beautiful response. Thank you!

  4. I found the previous post helpful too. I think it depends on what stage a person it at. My dad is loosing words---he often can't put to words what he wants to say. It makes him anxious and less likely to talk for fear this will happen.
    What works right now for us is to sit together, keep things slow and have a non-anxious presence. We spend time looking out the window for birds or squirrels---they bring tremendous pleasure. I may talk a bit about things that are happening with my kids or us, not taking it for granted that he will remember, but sometimes he does.
    Questions are very hard: even ones one might think easy like what do you want to eat? Better to ask would you like A or B? Sometimes even that is too much.
    Sometimes he finds something he wants to say. We go with that.
    Last night, he wanted to be close to his wife (my mom) and she put her arm around his shoulder. He leaned his head on to her arm and with a peaceful smile, fell asleep. Bliss.

    1. I am getting lots of private emails that are also offering the same beautiful stories that you are sharing. The advice to not ask questions seems so stark, but there seems to be great wisdom in it if we can absorb the message without slavishly following the rule.

  5. Anonymous7/17/2013

    Well said David, I wanted to add that in simplifying the message in the book you have lost a lot of the nuances too. I have visited Penny who developed the Contented Dementia techniques and attended one of her courses in the UK. It teaches caregivers invaluable tools on how to understand and cherish your loved one as the disease progresses. Penny is a wonderful down to earth lady and she would be the first to admit that there are some times when you need information from your loved one/patient - and she details techniques on how not to ask direct quesions. This book is a must for all caregivers.

    1. Thank you very much for this. What I didn't mention in my post is that Contented Dementia is actually not written by Penny Garland (its discoverer and practitioner) but by James Oliver, person who has much experience with the method and his interviewed Penny repeatedly. For simplicity's sake I didn't mention that "detail," but I'm sure some nuance is lost in the author's interpretation, too. (As an author, I know that that is simply inevitable.) So it's very important to hear from you and others who have had personal experiences with Penny and can speak from experience. Thanks for helping us understand more thoroughly.

  6. Anonymous7/17/2013

    I'm enjoying the conversation and will be content for now to just take mental notes. I may or may not have an issue with Alzheimers bearing down. (Incidentally, do you know if loss of night vision is related)? However, this article in today's NY Times might make for some excellent conversation in the years to come on this blog. (I'm an optimist).

  7. I have early glaucoma in one quadrant of one eye. My ophthalmologist told me that AD and glaucoma have a relationship although no one knows what it is. Glaucoma preferential hits the rods in the back of the eye (which give you peripheral vision). Night vision is also primarily from the rods, so it would make some sense that night vision would be affected ... but that's just a guess based deduction from medical school training forty years ago.

  8. During nursing clinicals, in the early 90s, I got to watch surgeries in this small teaching hospital in New York. I watched a bone spur removal, a knee replacement, and was sitting there hoping for something exciting, when the opthomologist came and grabbed me and said, "Nobody ever wants to watch MY surgeries, so you get picked." I watched this guy numb the entire eye ball with this giant flexible needle, went in one side, came out the other side. The woman had severe glaucoma which could not be controlled by drops. So the doc froze the area around the colored iris of the eye. By the time he was done, her eye pressure had gone back down to normal. It wasn't a fancy surgery, but it was cool to notice the size of her eye decreasing as he froze it. Something different, for sure.


  9. I thought your post was beautiful, frankly.  And it reminds me of a sweet story I love to tell on myself:  One very hot summer day, my husband and I took Evelyn, my mom,, and June, his mom, to a parade.  On the way home, we stopped to check in on his aunt and uncle.  At this point in time, we had power of attorney for these four elderly adults.  Gary parked us in the shade, and went in to check on his relatives, leaving me in the car with "the moms" to continue the conversation.  At this point, we were aware that both women had considerable cognitive impairment; June had already been diagnosed with Alzheimers.  So, to start the conversation, I said, "Look at that tree across the parking lot.  What do you think are the yellow spots?  Leaves?  Apples?  Pears?"  Mother said, "Well.  Those are apples.  And isn't it a shame that those people are just going to let those apples go to waste.  The apples are going to fall on the ground and rot, when they could be made into apple sauce, or pies, or apple butter...Those people.  Going to waste those apples."  

    So at this point, all of my buttons were pushed, and I had to contradict her negativity.  Like I had done for all of my life.  "That could be true, Mother, but I think it's just as likely that those people are going to make apple sauce, or pies, or apple butter.  Maybe they are just waiting for the apples to get ripe."  

    She looks at me, haughtily, and says, "Hmmph.  Well.  That's YOUR story.  That's not MY story."

    And so I laughed uproariously at the total wisdom of that statement, and got out of the car to retreive June who was by now wandering across the parking lot in the hot sun looking for Gary, or to check out the apples or whatever.

    And my life was forever changed.  Now, when find myself wanting to contradict someone, or change their beliefs, I just smile to myself in my mom's memory, and think, "Well.  That's their story."
    We would save ourselves a lot of grief if we could learn this lesson much earlier.  

    Thanks for your post, David!

    1. Two other questions I ask myself when I feel the need to contradict someone: 1) How important is it, really? 2) How likely am I to succeed? There are, of course, times when it feels quite important to "get the facts straight" but many fewer than I would have thought ten years ago.

  10. Donnamarie Baker7/23/2013

    It is a balancing act for sure. Not to dismiss and not to demand of us. One thing I have learned in the 3 years since my diagnosis, there is a wide gulf between a caregiver perspective and a diagnosed person perspective. And it gets wider with each step of the progression. I don't have an easy answer, but I do see and hear time and again how often simply not listening to the person and trying to understand their context causes problems for the caregiver that would never otherwise occur.

    1. Hi, Donnamarie. I would be very interested in a couple of specific stories that you might tell in which simply not listening to the person with AD and not trying to understand their context causes problems for the caregiver that would never otherwise occur. I also wonder if it's reciprocal: If the person with AD (especially earlier her disease could empathize and see the perspective of the caregiver, could that make it easier on both?


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