“Still Alice”: A Review from an Alzheimer’s Care Partner

Posted on February 9, 2015

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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

 

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Posted in: Books and Movies