On the Train Back from the BWCA
(For those of you interested in what I’ve been doing over the past two weeks, the Boundary Waters Canoe Area in northeastern Minnesota was its usual beautiful self. The weather was ideal. All of our children, grandchildren, and sons-in-law canoed and portaged together through unspoiled wilderness. [Even the signs marking the portages were taken down a number of years ago.] I’m grateful that each of us enjoys one another enough to have taken on the considerable logistical challenge to get us all together. We’d been planning such a trip for when the grandchildren were a little older, but we moved it up because of my diagnosis.)
Quite a few comments over the past several months have mentioned the difficulties for caregivers when the person with dementia “refuses” to recognize his impairment. Understandably, it can drive some caregivers absolutely crazy. The patient with considerable financial resources persists in disastrous judgments. The now-dangerous driver insists on driving. Important issues about the future can’t be addressed. Both caregiver and patient get frustrated and angry.
The term for this lack of insight is “anosognosia,” from the Greek words nosos, “disease” and gnosis, “knowledge” while the prefix a- changes it to a negative: “no knowledge of the disease.” It’s a condition in which a person suffering from neurological disability seems unaware of it. From my medical training, I’m familiar with this condition when caused by a stroke: victims remain unaware of their affected side and will deny that they’re hemiplegic. But it’s also common in Alzheimer’s.
Most caregivers understandably interpret this condition as psychological denial, but it’s not. A blogger on the Alzheimer’s Disease International website writes,
Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills.
Research has shown that this condition is due to physical damage to specific areas of the brain. The patient has no more ability to recognize her symptoms than she does to lift her arm.
When Alzheimer’s damages these areas of the brain, the patient simply cannot recognize her impairment. The importance to the caregiver of understanding the cause of this lack of awareness is obvious. Trying to cajole or therapize or intimidate a person into recognizing her disability will fail and will lead only to frustration and anger in both caregiver and patient.
Recognizing that the patient has no control over his denial, of course, won’t change the practical problems, but it might help prevent the blaming and mistrust that so often results. Realizing that your loved one can’t see that his mind is failing and that no amount of reasoning or nagging is going to make any difference might increase compassion and decrease frustration.
Although the problem may decrease as the Alzheimer's worsens, there is no known treatment. But, as the author of Contented Dementia suggests in the context of other problems, trying to see the world from the perspective of the person with Alzheimer’s will help. How might it feel to have others harping on your incompetence when you know yourself to be unimpaired? What’s it like to be unable to accomplish something important when you see no good reason why?
Is it possible for you, the caregiver, to create an alliance with the patient to reduce his frustration? Can you find a way to “agree to disagree”? Can you feel less of a sense that you’re betraying the person with Alzheimer's when you arrange for authorities to take his driver’s license away (ideally without letting the patient know that you were responsible).
No amount of understanding, of course, is going to make it easy for you to respond to this condition, but it may make it possible to stay in a better relationship with the person you love.
So they do not know it.Caramba! This totally changes my perception. It isn't voluntary, is involuntary. Yes, I change, the way I treat my family I love. Thank you.ReplyDelete
Mom's best girlfriend is 92 and has beginning AD. Her accelerating dementia scared my mother so much she hesitated to visit with her friend of 50 years because she didn't know how to act. Suggesting she see things from G' s (her friends') point of view helped entirely. Now mom has a gal pal again.ReplyDelete
Thank you David,
The canoe trip sounds wonderful. I am so glad you all had that opportunity and that conditions were ideal.ReplyDelete
Thank you so much for this post. I learned about anosognosia two years ago on the NAMI (National Alliance on Mental Illness) forums, which I frequented when my caree was diagnosed with schizophrenia. We now know that she has MS that acts like traumatic brain injury and that can look like schizophrenia. (Or, as her neurologist told us, it's impossible to tell where her MS ends and her mental illness begins.)
The NAMI post pointed me to an excellent talk given by Dr. Xavier Amador at the 9th Nordic 2011 Psychiatry Academy. (I don't know if links are allowed here, but a web search will give the address.) The talk is 70+ minutes long, but clicking on the "LEAP" link below the video takes the viewer to Amador's communication tools for dealing with someone with anosognosia.
The talk pointed me to the LEAP Institute website. I've read Amador's book _I Am Not Sick, I Don't Need Help!_, which has helped me tremendously in how I communicate with my caree.
Thank you for the reference to Dr Amador's work. i haven't listened to the whole video yet, but it can be found at http://greatdanefilm.dk/web/Janssen-cilag/npa2011_13012011/npa_09.html. (Paste it in your browser).Delete
It's so good to have you back...I missed your blog :)ReplyDelete
This is very timely for me, as I am going through the same thing with my father at the moment. He is now in full time secure dementia care (due to wandering, high falls risk and impulsivity), but has limited insight about the risks he takes and is convinced all the doctors, the psychiatrists, geriatricians and neurologists who have seen him are wrong about his health (which has been diagnosed as mild frontotemporal dementia), though he does still accept that he has had Parkinson's disease which was diagnosed 13 years ago and will take pills for that. Every day is challenging as he argues that he can live by himself, should be able to go out on his own or drive a car, and that I should open the doors for him and let him (and others in the unit that he doesn't think have any health issues)out so they can go where they want to.ReplyDelete
For some reason, when my grandmother had AD in her mid-90's, I found it easier to see that she couldn't see her own condition that I do for my 79 year old father who also doesn't see his dementia, but your post has made me realize it is the same thing, and changing how I see his thought process may help. Thank you.
Missed you here, Doc.ReplyDelete
In nursing clinicals, I once had a fairly new stroke patient in rehab for his hemiplegia. He was eating his dinner, and he ate 1/2 of the plate-- the left side. I asked him if he was going to eat his cookie. And he looked all over and said, "Did I get a cookie?" I turned his plate around so the right side was then on the left side. And he said, "OH!" and picked up his fork and began to eat again with good appetite. LOL.
anyone have ideas for how to include in social settings a loved one who demonstrates anosognosia about cognitive impairments ? I have confidentially shared with a few folks in my Christian community, yet am uncomfortable with others "knowing" something my loved one doesn't about himself. Yet if I don't share, then I am worried others won't know how to lovingly respond to him.ReplyDelete
This gets to the heart of the matter, doesn't it. My own thought is that your friends are going to know, at some level, that something is going on. If that's the case, then their embarrassment and the possibility that they will get into the struggle of trying to convince your loved one of "reality." So it seems better that they know.Delete
The question for many people will be whether they are "betraying" their loved one by going behind their back. This is obviously complicated; the question also arises in a more serious situation of the question of driving. Should the caregiver go behind a person's back to notify authorities? It seems to me that the answer is that he should.
One way around the question of betrayal is to tell the person with dementia what you are going to do and then doing it regardless of his response, just as one would insist on physical therapy for a person with a stroke who has lost his ability to recognize it. This takes a lot of courage, of course, and won't work with everyone; it falls into the category of whether the person with Alzheimer's is willing to agree to disagree. And depending on the reaction, you might be willing to forcibly restrict his driving (a matter of public safety) but then not tell your associates.
Perhaps I should write an entire post on this issue.
I would certainly appreciate feedback from others who have actually been in this situation.
I could write a post-length comment on this. :-)Delete
I hold POA (power of attorney) for my caree, but am not her legal guardian; she is still able to perform her ADLs (activities of daily living). However, she is delusional and at times paranoid, in addition to having anosognosia. Bottom line: I have limited legal authority, but I resort to work-arounds however I can to try to get her the care she needs. I'll give two examples.
1. After a recent endoscopy, she became convinced that a secret gastric bypass had been performed on her. Her speech is tangential as it is, so I often translate to doctors; this can agitate her because she wants to tell them, herself. Behind her back, I gave the gastroenterologist reports from neurologists attesting to her cognitive disorder. (I use my POA to get as much documentation as I can, which I then scan into my computer to have handy.)
2. Last winter, my caree insisted on using a cooking coil as a space heater. She is also a hoarder, so this presented a serious safety issue. After approaching both the health department and the fire department, I finally got help in the form of peer pressure from our MS support group. My caree was furious at me for "airing our dirty laundry" when I spoke up. (There have been significant issues when I have actually removed anything of hers from the premises.)
Health and safety issues are my first priority for disclosure. I take social settings on a case by case basis with an eye toward decreasing our isolation however I can, especially because my caree is mostly housebound.
I am also active on Caregiving.com, where we share these and similar experiences. The site is an extraordinary resource and a terrific grassroots community. I write there under a pseudonym, which lets me preserve to some degree my caree's privacy while expressing what I need to express.
Glad you had a good holiday.ReplyDelete
With my hubby I didn't tell anyone he has Alz until his behaviour made it necessary. I tried to let him live as normal life as he was able and I kept his world small so he wouldn't become confused and agitated. Also when friends and family find out it's amazing how almost all of them disappear.
Driving issue....could write a book on this topic. He shouldn't be driving but he's still passing the drivers exams. I limit him to area close to home, live in the country so it's to the corner store and back. There is no convincing him that his skills have decrease to a dangerous level and he shouldn't anymore....anosognosia.
Mostly I don't argue with him and now after 10 years I just let the small and medium stuff go. The big stuff I handle it all now. His reasoning button is broken.
Great article indeed!ReplyDelete
I am so thankful for this blog and everyone's comments.ReplyDelete
I don't know if it is because of the the type of personality I have or I am just fortunate but so far I have been able to observe the changes I am experiencing and know that something is up. I have gotten the reaction from a few people that I am anticipating too much and this is contributing to my decline. AARGH, like anyone would want this to happen to them. "Denial is not a river in Egypt". If we totally deny something and block the word/subject from our environment it will not protect us like some sort of
talisman. My husband has been so wonderfully supportive as I can tell him when I am having a bad day and it is helpful to be on the same page. I wonder if later on anosognosia will become a problem for me. It is about not having any insight. This is one of the benefits of having as much information about about the warning signs and early detection.
Although I don't have much clinical experience with Alzheimer's, I haven't yet come across stories of people who were at first insightful and then no longer insightful. I would be very interesting to me and other readers if you were to make such a transition. Since you would, at that point, be unlikely to comment here, I wonder if you could ask another one close to you to let us know if you lose insight.Delete
I did some more reading on anosognosia and found this: In progressive decline such as Alzheimer’s disease, memory and thinkingReplyDelete
functions, such as short-term memory, difficulty recalling specific words when
talking, planning an event, and making appropriate decisions, may suffer. Early
on in the course of the disease the person may be aware of subtle deficits before
other people become aware of them. As the disease continues, it is common
among those who have a diagnosis of Alzheimer’s disease to have
anosognosia.8 Some researchers have estimated that as many as 60 % of
people with Mild Cognitive Impairment9 and 81% of people with Alzheimer’s
disease have some form of anosognosia.7
As the dementia progresses, the anosognosia may progress. The person may
be unaware that their memory is declining or that they have difficulty with routine
tasks such as keeping fuel in the car and preparing fresh food and water for a
As well as lots of other really helpful info from Univ of FL AlzOnline Caregiver Support Online http://alzonline.phhp.ufl.edu/
Thanks for all the additional information. Those statistics for the number of people with "some form of" anosognosia are quite astonishing. I wonder what's included in the "some form of."Delete
I noticed my husband having problems about two years ago. Relatives who visit about once a year really brought it to my attention. After many months of denial on his part, I got him to a neurologist and he was diagnosed with Alzheimer's. The front of his brain is disappearing and fluid is taking over.ReplyDelete
Having to give up his car was devastating. I have promised him that he will never have to go into a place that cares for people with Alzheimer's, but that I will care for him in our home. I hope that I can keep that promise.
My own hope is that when the decisions about institutionalization need to be made, you will be able to look at the decision with clear eyes and know what's best for you and him. Neither of you knows now what will be best when that time comes. It's apparent to many people that at some point in the disease people like being in an Alzheimer's unit better than being at home. They have company with people who have similar problems as they, they have 24/7 care from professionals who are not exhausted by having to do care 24/7 all by themselves, and when their loved one visits they are getting someone who loves them who is happy to be there. Caregivers who blindly try to give home care without the proper support can destroy themselves and their relationship with their loved one, too.Delete
That's pretty long-winded of me, and I have no right to lecture you, but I do hope that as things go along you keep in touch with others who are experiencing similar things in order to help you make wise, compassionate, and loving decisions.
My husband also has Alzheimer's, and I am the sole caregiver. I will care for him for as long as I am able, but perhaps not always at home. I realize that there may come the time when I am no longer able to care for him by myself.Delete
When/IF that time arrives - I'm certain he will be better cared for than I (by myself) could care for him. And I'll be with him as often as possible.
Thank you everyone for your comments and David for starting it off.ReplyDelete
I have just heard about anosognosia and it has been an amazing insight into the loss of insight.
My mother at 98 has been becoming increasingly difficult to deal with on a day to day basis and in complete denial that there was any problem or that she needed help. She refused carers phoned the police and ambulance and frequently knocked on neighbours doors, phoned my brothers cell phone 10 times a day with the same request etc. Her denial that she was behaving in this way, her lack of insight into her failing ability to cope was incredibly frustrating.
We tried to arrange for her to come to live with us in New Zealand and she always changed her mind. No decision would stick for more than an hour.
She became increasingly paranoid, blaming others for what she had obviously done herself, hiding keys then accusing others of stealing them, inventing imaginary possessions that others were then stealing.
In desperation in the end we tricked her into going into care for a brief medical care respite. She has now been held because she is clearly unable to care for herself or make decisions about her own welfare. She is very angry about being held 'captive' and we hope she will eventually find some acceptance though she has always been very wilful and stubborn.
We can now recognise that these behaviours are part of her illness and this helps to alleviate our feelings of guilt at our 'betrayal' of her trust knowing that we have to act in her best interests and in the interests of the community.