Let me begin by saying I feel people cannot be objective about this movie. I understand that. It’s the first mainstream Hollywood movie about something so un-glamorous, Alzheimer’s! I may come across as harsh, but I think I have the right to be. I tried googling for more unbiased and educated views about the film, but sadly found none. So here’s my two-penny bit.
I cried when I watched “Still Alice,” the fictional story of Alice Howland who develops Early Onset Alzheimer’s at the age of 50. But then, Alzheimer’s is a trigger for me. You see, my mother had Early Onset Alzheimer’s in her 40s and died the year she would have turned 50.
The book has a beautiful perspective of the person with dementia, Alice. The movie is unable to translate those moments. For e.g. In the book, the scene where the family is talking about Alice, who is in the room, like she is not there, there is a beautiful description of Alice registering what they’re saying, but being unable to respond. In the movie, the moment is lost. If the viewer has not read the book or experienced Alzheimer’s as a caregiver or a person who has it, they would not understand how demeaning it is for a PWD (Person/People with Dementia) to be talked about as if they were invisible.
The movie simply touches upon (more like glosses over) the hardships of PWD, especially in the case of Early Onset Dementia. The loss of their jobs, their ability to drive, to make simple choices, the loss of bodily functions that lead to incontinence, the ability to find their way to places they have been to a million times, the night-time wakefulness, and the list goes on. In real life, these are epic struggles for PWD and also their families. I cannot tell you the number of times I have heard a PWD say they feel invisible and powerless, or a caregiver lament over how they are going to have to take away the driving privileges of a loved one!
As time progresses, a PWD has to rely on others for care. This is often a very humiliating experience for them. There is literally just one scene in the film where you see Alice getting upset that she has an in-home care aide to help her. And she is only upset; there’s no screaming murder or threatening eternal condemnation! In reality families may not be able to afford in-home care or if they can, many times, the PWD will not be comfortable with anyone and they will be mean! I don’t blame them; I wouldn’t want a stranger touching me either!
The scene where Alice pees her pants may have been very hard-hitting for some. However, that’s the only time they allude to incontinence. In reality, the first time a PWD experiences incontinence may not be in the privacy of their homes with no audience. It can be a really demoralizing experience for them. And don’t even get me started on the discussions about wearing disposable underwear, which the world calls, “adult diapers”. No sir, it’s not a one off thing…but something that gets progressively worse. I advise caregivers to simply call them “underwear”. Remember, diapers are what children wear. PWD are NOT children. Treating them as children would only hurt them. Imagine someone taking away everything you have and deciding everything for you – from what you wear, to what you eat, to what time you will sleep and wake up!
Alice is one of the lucky ones. I am not callous, hear me out! She didn’t experience any major changes in her personality. She didn’t have hallucinations or delusions. Nor did any of her relationships get progressively worse. In fact, she comes to a beautiful understanding with her daughter with whom she had differences of opinion in the past. In reality, PWDs may experience debilitating changes in personality that make them have rage issues. They may get livid with those closest to them, making it harder for people to support them. Sometimes PWD have hallucinations and delusions which make them extremely acerbic with those around them. When I support caregivers, I constantly tell them… “That’s not your mom/dad/sibling/partner talking.” Often a relationship between a PWD and a family member that was tumultuous prior to the dementia gets progressively worse. I have heard children call their parent names and break down and cry from the guilt!
Don’t get me wrong, there are some great scenes in the movie. For e.g. the one where she finds the video that instructs her to kill herself by opening the drawer below the lamp in her bedroom and eating all the pills in the bottle. She has to go up and down numerous times before she realizes that she can take the computer to her room. She didn’t manage to kill herself because she couldn’t follow even simple instructions anymore. I loved the scene where Alice and her husband go to have frozen yogurt. She just copies his order, because that’s what PWD do. They may improvise to manage their lives or simply not want to be embarrassed about simple things. Her husband reminds her of what she usually has. The conversation about whether she still wants to be “here” in Boston was definitely poignant. She couldn’t do simple tasks herself, but she insists that she does not want to leave her home. A change of place may be absolutely normal for you and me; for a PWD, it may take them weeks or even months to get used to a new place.
The movie doesn’t show the family accessing any supports. Yes, she does go to an Alzheimer’s Association event, but I wish they had shown her accessing an Early Stage Support Group or her daughter going to a caregiver support group. They were right in showing that the caregiving responsibility falls on one of the daughters. Women usually bear the brunt of caregiving. In this case, they were lucky that Kristen Stewart was not in a conventional job and could make the move to be with her mother. In reality, it disrupts lives. Dementia has a great financial impact on the family, which luckily Alice did not seem to struggle with.
My final verdict would be…it’s a great movie. It’s not reality. Not every person with Alzheimer’s would be like this…some may be a lot worse…especially in the case of Early Onset Dementia. Alice’s family has more money than the average person. Everything you saw in this movie, multiply it by 10,000 times and then you may be somewhere close to what it is like for a person with Early Onset Dementia or their care partners. They have portrayed several small aspects of a PWD’s life. However, unless you’re familiar with the disease, these could be lost on you!
I envy the people who can go to the theatre, watch this movie like any other, cry a little, come out and forget about it. Unfortunately, some of us don’t have that liberty. Yes, I am happy that a movie about Alzheimer’s got made…that it received a lot of attention. I still feel it protects people from truly knowing how demoralizing this disease is for a PWD and their family.
I think the movie needs a disclaimer in bold letters in red to let viewers know that this is NOT a documentary and will not give them a crash course in understanding the struggles of a PWD or their caregivers.
Acting: 8.5/10
Direction: 6.5/10
Story: 8.5/10 (Mostly Lisa Genova)
Screenplay: 6.5/10
Ability to educate people about dementia: 5/10
Ability to educate people about the perspective of a PWD (person with dementia): 5/10
From Outside The Mall 
ZRS
February 11, 2015
I have early onset…and read the book and found that I related to most of it. Everyone is different, but I had the same experiences that Alice had….and I also earned a masters degree and led a prosperous life before I too was unable to fulfill my professional obligations at work…….just saying! The book and movie are raising awareness, which might prompt more attention and further research!
Henri
February 11, 2015
I absolutely loved the book! I do think it was bang on about the perspective and that’s what was unique about the book…it was about Alice’s perspective. The movie loses that…the PWD’s perspective. The book is full of small moments that move you to the core. I agree Sandy, every case is different. And that’s exactly I want those without the AD perspective to know. There’s a zillion things that happen. My review is basically saying the movie is absolutely fine for people with the AD perspective…just not enough for those without.
DM
February 11, 2015
I read the book and am definitely going to the movie. My mom has early onset and is in the last stages. I think the book was pretty accurate on some things that happened with my mom.
Auntie D
February 11, 2015
My sis had early onset memory impairment which eventually was diagnosed as LBD. The behaviors Alice portrayed were very much like my sister’s. She’s been gone almost 13 months.
LMP
February 11, 2015
I read your review. Liked and can relate to what you are saying. Haven’t seen the movie yet.
Louis Otto
February 11, 2015
Suggest you read “Ice Cream in the cupboard” A true story by Pat Moffit
Cat H
February 11, 2015
Loved your review and think it spot on!
A. Osb
February 11, 2015
I think the movie focuses A LOT on memory issues which quite honestly, is the least of the concerns we have with my dad. its everything else that comes with alzheimers that is the real struggle. of course losing memories sucks, but its not all that alzheimers is. i still loved the movie though and think it will still bring awareness to the cause
Anonymous
February 11, 2015
No disrespect, but the memory loss is the BIGGEST concern for those of us suffering with early onset. I know I will experience physical problems as my disease progressively gets worse….but reading the book was a comfort because for the first time since my disease became reality, I felt recognized and validated! Now we need a movie that sheds light on the struggles of the families and caregivers who have to witness and endure the debilitating consequences of the dreadful disease!
A. Osb
February 11, 2015
everyone is different. For my family its the aggression, incontinence, etc. The rage was the hardest for my dad. His meds are under control now, but personally I would rather him how he is now – forgetting who I am but happy, rather than knowing me and being scary mean.
D. McG
February 11, 2015
Love your review.
Have not got the courage up to see the movie, we lost our Mom to this awful disease in July.
S.O.
February 11, 2015
I watched the movie and agree with your review. Someone who’s never experienced caring for a family member with EOAD would not be prepared for much of what’s to come if their perception was based solely on how the disease is depicted in ‘Still Alice.’ Many scenes in the book were omitted that could have been included, like the fury Alice experiences when she can’t remember the bread pudding recipe. That said, if the film gets more exposure for ALZ research, that’s s good thing.
Melanie
February 11, 2015
Loved the review, I just cannot bring myself to see it, my husband has had EOA for 5 years, I just have no interest to see the movie
Anonymous
February 11, 2015
I can relate to both the person with EOA and the caregiver. My mother died of Alzheimer’s in 2012 at age 86….suffered for many years. I was just diagnosed in 2014 and am currently taking aricept for my memory problems. This disease creates havoc and suffering for everyone associated with it and we should be putting forth way more effort and funding for research to better understand how to treat. The numbers are rising and this is a huge problem in our country. I support any book or movie that sheds light on this disease and perhaps ruffles some feathers because it encourages discussion and outrage….and perhaps effective treatment or an eventual cure.
Anonymous
February 11, 2015
I’m speaking from the point of view the person who suffers with the disease not the caregivers. I have become very intolerant because of my frustration with my mental dysfunction…and my family has noticed an increased level of anxiety, verbal aggression, and emotional outbursts. I realize that its partly due to my inability to cope rationally, but I am still aware of my cognitive decline and so I’m stuck in the middle. Not able to cope, but understand my behavior as being irrational. Its very frustrating and I’m sure the physical aggression and incontinence will follow….not looking forward to that at all. I just wanted to make everyone aware of how upsetting the memory loss is for those of us who personally have EOA….from our view point, not the caregivers!
A. Osb
February 11, 2015
Yes, but I still think its different for everyone!
B.
February 11, 2015
Excellent!!!
Henri
February 11, 2015
Dear Anonymous, you have articulated so well the struggles you are facing. I think it’s amazing that you are part of this group. I love how you can empathize with your family members. The book, Still Alice has so many such moments. I wish the movie could have translated those! They showed Alice making this speech at the Alzheimer’s Association event; I wish they’d shown her at an Early Stage Support Group or her family members attending a group. I do agree we need more money in research….BUT…we also need supports. My mom was diagnosed at 43 almost 20 years ago. And believe you me, we’re still struggling with meager resources available for families. We need investments in supporting caregivers and PWD. Yes, a cure would be nice…but who knows when that will happen! We’re nowhere close as of now. I salute you Sandy, do not ever go gently into the night! Do you have a blog? I follow several PWD and find it valuable to learn their perspective. My mortal fear is that I am going to be next. How can I not be scared. My nana died at 51, mom at 49. Two of her siblings currently live with 2 different forms of EOD. I really appreciate your time comments, and those of others. We have to have more responsible media out there which represent PWD and families as they are. All I want for the world is to understand sometimes it is like what Alice experienced, but many times it is not…which the movie does not show at all!
Thank you, all those who took time to read my review and took time to leave a comment. I really appreciate it. I am glad we could all share our perspectives on this forum. I truly believe we need awareness about the disease…not just for a cure…but to improve supports for the PWD and their families…what we have is clearly not enough or too expensive.