NPR had an interview with Julianne Moore who is starring in "Still Alice." (disclaimer: I haven't read the book or seen the movie.) Ms Moore is quoted from the interview: "I found that people did retain a tremendous sense of self. So I think the questions that it raises [include] ... Who are our essential selves? Who are we, and why do we place value on one stage of life or one stage of cognitive ability and not another?"
Does the "Still Alice" mean that she has retained "a tremendous sense of self?"
I found her first statement a bit startling. How does one retain a tremendous sense of self when they have lost all memory of who they were, who the people are they were with in life, as well as a host of other deficits. I tend to disagree with her statement and believe that my husband has lost a tremendous amount of self. When I observe the other residents in the ALF and read the "resident of the month" bios, there doesn't seem to be much retention of self, especially the further into the disease the patient goes.
How do others feel about this statement? Does it ring true, or did it evoke a negative reaction?
marche, I have neither read the book or seen the movie but I also disagree with the statement. If she was speaking about the "Alice" retaining tremendous sense of self I think she has made her observations from one ALZ victim. I feel that these once modest and dignified ALZ patients do not have that capability as it progresses. If she was speaking of herself she has never lived a caregivers life from beginning to end. As a caregiver all these years I have even lost a great deal of my own sense of self.
I did not read the book or see the movie and I have no intention of doing so, since my own Alzheimer's movie has been playing right here 24/7 for 7½ years. However, I listened to the NPR story on the internet and read a bunch of reviews of the movie, so I got the general idea. It looks like the movie depicts Alice in the early stages of the disease. However, Moore also describes someone in a later stage of the disease. This is the example she gives of a person who has a "tremendous sense of self."
• "Even when I went to a long-term-care facility, I met several people who were patients. I felt that I got a very strong sense of who they were. Then I spoke to the caregivers there and family members. There was one woman who told me to get away from the draft, I was going to get sick. And then her daughter came in. ... I said, "Is that your mother?" And she goes, "Oh yeah." ... I said, "Your mother told me I was going to get sick if I stayed in the draft." And she goes, "Yup, that's her, she's always telling people what to do. That's my mother."
As far as my own experience, my husband is probably in early stage 7 and he DOES have a "sense of self," although I would not call it "tremendous." However, that "self" is an 10 or 11-year old boy. Sooner or later, though, he (and I) will lose even that "self." Julianne Moore's superficial observations have nothing to do with our reality.
I did read the book (which was quite good). It depicts a Harvard or MIT professor in the very early stages of AD as she begins to become disoriented at times and experiences the typical loses associated with the onset of dementia. I believe the book follows her journey into the mid/late stages of Alzheimer's.
I disagree with her statements as well. I have not heard the NPR interview but apparently my sister did and her takeaway from the interview was that most people with Alz know what's happening to them and can verbalize their changes and how they feel about it. Of course she was comparing the people Julianne Moore spoke with to my husband who has never discussed what was happening to him and even denying it (agnososia) . It was one more way for my sister to tell me my husband isn't as unaware as I think he is (make that know he is) and in her opinion it's all an act because he's selfish. WHATEVER.
Regarding sense of self, I think it's more keeping certain personality traits....my husband was always stubborn and a bit selfish. He remains so today, but what 3 year old isn't? He was also the kindest man I had ever met, not so since this disease (in fact he was cruel and violent). But interestingly enough he has retained his sociability and still loves to be around people.
Like the rest of us this site, I too have my own 24/7 dementia movie (thanks myrtle for the phrase), but I would like to see the movie at some point.
• "Who are we, and why do we place value on one stage of life or one stage of cognitive ability and not another?"
Well, if all stages of cognitive ability are equally valuable, then we don't need to find an effective treatment for dementia and we have no reason for being upset about our spouses' loss of cognitive ability.
On the other hand . . . Ms. Moore and the movie she is in are helping to spread the word about dementia and at least she recognizes that everyone with dementia is not totally out of it from the beginning, so maybe it's all for the good.
I have read the book, and met the author and heard her speak twice. First, I think the book is wonderful, probably the best book I have ever read about dementia (and it is "fiction" so go figure), but perhaps that is because my DH was diagnosed in his early 50s so much of the story I could relate to. The author did a lot of her research via online chat rooms of persons diagnosed---they agreed to her joining----as well as personal interviews with some of these people. So her research was obviously persons who were aware of what was going on with the disease. I have not seen the movie---in fact, it is not in theatres in Houston yet----and at my support group last night we were discussing that we might go together, although I also might wait to watch it at home. Just not sure how I will deal with the emotion.
As Myrtle says, I think the most important thing about the movie is raising awareness----and particularly about early-onset dementia, since so many people still don't understand that a 50 year old can be diagnosed.
Good points, all, especially myrtle on stages of cognitive ability. It made me re-examine my concept of my husband's cognition. I would say that most of what he does is a carryover of lifelong habits and not necessarily actions resulting from rational thoughts. He does seem to "think" about things, like picking a shadow up off the floor, but it is all so distorted and dissonant.
This is all good food for thought and will encourage me to keep an open mind.
In a written interview I read that the reason for having the central character suffer from younger onset dementia is to put the focus on dementia as a disease and not "dementia as something that is part of normal aging."
Back to marche's original question, without getting side-tracked by this movie:
• At what point in the progress of the disease does a dementia sufferer lose their "sense of self"? (And what do we mean by that?)
LFL says that what people tend to retain are certain personality traits, and that's that is not the same thing as a sense of self. I agree with her. How much self-awareness does a person with late-stage dementia have?
I thought my husband had quite a bit of self-awareness but a year ago, when he was assessed by the LTC facility, I was surprised that he could not answer questions about where he grew up, how many siblings he had, what he had done for a living, where he lived now, who I was, etc. After six months in LTC, he knows where his bedroom an the the bathroom are and he recognizes and talks with certain other residents. Since he is in a veteran's home, I thought that when he was admitted, he would think he was back in the service, but that's clearly not the case. (Could that be because he's now too young to enlist?) I don't know where he thinks he is.
He still has many of the same personality traits as before: he is friendly and sociable and still a gentleman. On good days, he is still funny, in a childish way. Does he still have his "sense of self"? I think so, but probably not a tremendous one.
In the early and middle stages, which are covered by the book, it depends on the type of dementia. To paint a board brush, people with Alz keep more of their personalities but lose their memories, bvFTD is the opposite. Once they hit the last stages they all tend to lose both. But it varies with each person. My wife is aware of her dx and some of her limitations but that is more that she doesn't understand than she does.
I rarely post but want to add my point of view to this discussion. Lisa Genova, the author of "Still Alice" interviewed my DH (Charles Jackson) frequently as part of her research for the book. He is acknowledged by Lisa in the foreword of the book. Lisa Genova is a neuroscientist who found Chuck via an international group called DASNI. When Chuck first exhibited signs of EOAD (his family has the EOAD mutation psn2), I was trying to find some sort of support group for him on the internet. I located DASNI http://dasninternational.org/, an international group for people with dementia. Lisa also conversed with other members of the group regarding their experiences with dementia.
Chuck was interviewed a lot about EOAD, NY Times, Washington Post, NPR, HBO, because he was so aware and could articulate the changes that were occurring. According to researchers and experts in AD we have met in our journey with EOAD, this is not the case with many who have dementia. It really is dependent on the parts of the brain that are being ravaged by AD. Also, like many here have expressed, some people who were gentle or reasonable all their lives are easily angered, frustrated, unreasonable, hallucinate, wander .....
We are both really thankful that Lisa Genova wrote this book. Chuck cried when it was published and when he heard on tv that it has been nominated for an Oscar, he cried again. Although he can hardly speak, he let me know he was filled with joy. He worked so hard when he was still in the early stages of the disease advocating for those with Alzheimer's. Although Chuck can hardly speak any longer, he still is a champion of those with EOAD and AD.
Also, Lisa is a very well educated woman (neuroscientist with her phd from Harvard). She has also written top selling books on autism, tramautic brain injury. She is the one who did all the research on AD. I think anything Julianne Moore says is based on limited research and personal knowledge. (JMHO).
I feel fortunate that Chuck still has mostly good days. He can tell me he loves me. It has been a long journey though. It has been around 12 years since Chuck was diagnosed at 49. I occasionally read others' posts here and it has helped with coping as a caregiver and helped me anticipate and adapt to the ever changing decline.
Lizabeth, thank you and your beloved husband Chuck for sharing your journey with Ms. Genova and contributing to the EOAD experience and understanding so others can learn from your experience. You have both made a significant and important contribution to helping others, both professionals and caregivers alike, including the general public by being so open and forthcoming about the illness and how it affects individuals and couples. We need more champions like you and others on this forum who continue to advocate.
My husband has bvFTD and has never had the self-awareness many with AD have but I do know that he still understands much more than I and the professionals give him credit for. Thank you again and particularly your husband to be willing to expose what others are afraid to hear.
I have just finished reading the book and it's a very good read. I don't know if it's because we have lived so much of what's in the book or whether it's so well written it holds your interest, but I couldn't put it down. The author has really done her research and seems to get in the head of an Alzheimer's patient. I'm planning to see the movie when it is shown here.
Lizbeth, It's amazing to hear that after 12 years with this disease your husband can still understand that a book he contributed to was published and can also understand that the movie adaptation was nominated for an Oscar. Few people of any ability can contribute to something of that magnitude, and probably almost none who have dementia can. It's wonderful that he is able to enjoy that feeling of accomplishment. It sounds like the book is excellent and I'm sure the movie will educate many more people about EAOD.
Lizbeth, I echo the thanks for the courage you and your husband showed by participating in this project It really is wonderful that he is still so aware of his contributions and to the apparently successful outcome. Thanks again.
Lizbeth, throughout my husband's journey with Alzheimer's, he has never been able to explain what is going on in his brain and what he is feeling. I want to extend my thanks to your husband Chuck for articulating what many who suffer from this disease cannot. It has given me a greater understanding of what my husband is going through and I am very grateful.
My husband was aware and could and did express and try to explain what was going on in his brain/head - even fingers and arms, legs, etc, right up until 13 days before his death. When he would tell me, he would look so very sad and lost and totally frustrated. - I wished then that he didn't understand what was going on.
I just saw an announcement that on Tuesday, Feb. 10, the PBS NewsHour would be presenting a segment about EOAD and would be interviewing the author of "Still Alice."
The first point is the tremendous variation and the second is the timing of where the person is in the disease (AD). As we can see in just our group some are articulate and/or cognitive for a long time. The disease moves at different paces and different areas in different people.
Alzheimer's is a disease of plaque buildup. The effects of that are individual at specific times. When Alzheimer's spreads into the higher brain function areas, those areas begin breaking down in function. Willpower, intellect, awareness don't enter into the machinery itself breaking down. When facial recognition or useable memory recall break down they are broken. Recall there is no example of anyone getting better with Alzheimers and that the overwhelming majority of cases involved impairment of increasing kinds to cognitive function.
Sense of self though, and the example of how some behaviour is just like the mother, is possible without cognition or higher memory. This is the argument genetics/environment demonstrated. Identical twins separated at birth often display remarkable similarities when reunited. Some of our behaviours are 'built in' and some of our behaviours are learned. So some of our sense of self is hard wired.
All of this discussion it seems to me is centered around people who have Alzheimer's but either in earlier stages or are examples of people where the plaque damage is not in critical areas yet. Normally those people are not EOAD who are almost certain to live to the end stages of the disease.
The sense of self is in my mind better understood in the example of pets who display individual personalities and a sense of self. Many animals have a developed relationship with their sense of self. My wife has that. She's still a nice person because neither the meds nor the disease have affected that so far. She still behaves in her basic nature. She wouldn't agree it meant much compared to the reasoning we are all doing here.
I don't fault the actress and I agree with Moore she is "still Alice". Everything else is looking around at the view somwhere on a definite journey to nowhere.
I'd like to follow up on myrtle's comment about the EOAD segment of tonight's PBS NewsHour.
First I want to thank you for posting that. The NewsHour comes on quite early in my time zone and I don't usually watch it.
Later tonight on Frontline the subject is "Being Mortal". As far as I can tell Atul Gawande's book concerns end of life issues. I am about halfway through it and so far dementias have been mentioned but have not been a focus. The book does not have an index so I don't know if it further addresses the dementias.
I wish I could state my opinion on Ms. Moore's interview, but not yet having read the book or seen the movie, I'll withhold comment. I think I just have, in general, a negative opinion of what Hollywoodites consider to be their profound viewpoints & expertise.
I think I am to blame for causing some confusion here. By using this thread to alert people to PBS NewsHour segment on EOAD, I failed to highlight that the PBS interview was NOT with Julianne Moore (who is an actress).
The PBS NewsHour interview was with Lisa Genova (who is a neuroscientist and author). She is the one who wrote the book that the movie was based on. If you read the previous posts on this thread, you'll see that on Jan 24, 2015, Lizbeth said that her husband, Chuck, who has dementia, contributed to Lisa Genova's book.
Oh Myrtle, I understood that. The first post was about Julianna Moore's interview with NPR ( to which I do not listen) - I guess I was just making a judgment call on Hollywood opinion, period. Even though she starred in the movie, she still probably knows very little about living with it day in & day out. I'm all for bringing things to light & getting the word out, but her personal opinions & observations probably aren't the most reliable, yet that's who (meaning celebrities) look to for information - their word is gospel.
Well, maybe I'm way off the mark here, misinterpreted the whole thing. As I originally stated, I should have withheld my opinion till I'm more familiar with the subject (you know - keep my mouth shut!!) :D
Mim, I did not realize you had switched back to Julianne Moore.
I agree with you about people in the so-called “entertainment” business. I read the transcript of the Julianne Moore interview and her opinion on the subject seems to have been based on a visit to one nursing home, not on extensive research or on living with this disease every day for years, as we do. Although her heart may be in the right place, her conclusions are not well-founded and frankly, seem superficial.
I don't think you should withhold your opinion. Neither marche, AliM, LFL, nor I withheld our opinions when we disagreed with Julianne Moore. Why should we? We live with this every day and she does not.
Lisa Genova, of course, is another matter entirely, since she is an expert in neurology and has apparently researched the subject thoroughly.
I just went to see Still ALice this evening. I had read the book about 3 years ago and really liked the book. I learned several things from it that helped me understand some of my husbands behaviors as he progressed. One of which was when she was afraid to step on the black rug in front of the front door. To her, it appeared as a big black hole in front of the door and she was terrified that she would fall into the "hole". My husband had a lot of visual deficits. Just in the last month or so when we walked in the evenings, he was terrified of any variations in the patterns on the floor. There were large areas of dark colored tiles decoratively spaced out among the lighter colored ones and he began to step very gingerly onto these areas as if they were inclined when, in fact, the floor was level. When we walked past a door, he began to be afraid of stepping on the rugs. I knew from reading the book that to his eyes/brain, it looked like a big hole. I thought the movie was good. But, as is almost always the case, the book was so much better. I highly recommend the book!
Yesterday on my way home before the long drive, I went to see Still Alice. (Had a great district meeting with our local rep. for our Congresswoman Tulsi Gabbard in DC, whom I will see in just over 2 weeks!) I was feeling elated and very satisfied about the meeting. So saw the movie, and most of it seemed a bit dry but of course having "been there" I was very attentive. However, the last half hour of the movie was really good. I especially appreciated the final scene where her speech was so garbled, hauntingly real. I do wish, when she was giving her speech about being in the disease, though she did mention the stigma, never was it said that it was a fatal disease.
I was unemotional, until, part way home I felt like I was in another surreal world, and tears and hope and pain and comfort surrounded me all at once. I almost stopped to have a drink somewhere, but decided no , hold on to this. What with all the DC forum help coming in for Joan, with my advocacy and feeling I really had something to offer, with losing Dado, and with the strange but wonderful path of life, I felt very blessed.
coco, I think you are brave to see the movie. probably good to have done so, with the forum coming up soon. thanks for advocating! I may also try to get involved at some point in the after. I don't think they can really make a true movie unless they actually use real dementia folks. nobody can mimic the nature of this beast. I also am disgusted at the lack of awareness most try to write about in these movies. but yes it is bringing it out in the open and possible forefront for a cure in the future. many things can trigger the emotional side when we lose our loved ones. it can come from so little. you are a brave woman and will beat the odds, life can be good again for us in the future. times going to tell. divvi* have faith and hope.