Sunday, October 23

Is "Still Alice" an Accurate Portrayal of Alzheimer's?

FACT CHECK:

In the movie "Still Alice," Julianne Moore's character is stricken with early on-set Alzheimer's. Ken Hepburn is the Education Core Director for Emory University's Alzheimer's Disease Research Center. See his professional take on the authenticity of the movie and Moore's performance.



More video on 'Still Alice':

SOURCE:
  • Emory University

7 comments :

  1. So this does not illustrate typical behavior if Alzheimer's comes at old age instead of at age 50? Or is it that this behavior isn't noticed as much when it begins in the elderly? How is the onset of Alzheimer's different from age 50 rather than 78? Isn't this disease "there" sometimes 20 years + prior to diagnosis?

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    Replies
    1. Actually, it isn't noticed as much in the younger group. Most pass it off as fatigue. If it becomes persistent, it scares them and they don't want to know what it is. If they are diagnosed with younger-onset Alzheimer's (or any of the other dementia's), they lose their job, insurance, their family and friends. I'm a younger-onset Alzheimer's caretaker and have seen it all happen.

      This form of Alzheimer's is much more aggressive than the geriatric version. The move from one stage to another is sometimes jarring. And, yes, the victims have had the disease for 20 or more years. If you're 44, like one of the victims I know, you've had it since you graduated college.

      How is it different in younger people? For one, there are usually no other serious health factors like hardening of the arteries, kidney failure, chronic heart disease, circulatory problems, gastrointestinal issues or COPD in people 50 or younger. That makes the cognitive failures and memory problems stand out so much. Another is the sudden loss of abilities that seemed second nature. In my wife's case, she forgot how to use Excel functions, functions she taught others (including me) to use. Then there's confusion with schedules, being unable to add a column of numbers (like in the game Yahtzee), handwriting becoming illegible, inability to complete a simple form, inability to spell words they've used all their life. lack of a sense of urgency when faced with deadlines, the inability to follow a recipe, hesitating at traffic lights (not turning right on red when there is no traffic), and much more. To that you can add those things that affect how they do their job. Forgetting how to sign into the network, leaving for the day without clocking out, losing items like keys, wallets or purses and not knowing where they might have been so they can look for them. And most of all, the adamant refusal to believe anything is wrong until the disease causes a crisis in their personal or professional life.

      By the time it's diagnosed, the disease progress rapidly accelerates. In just 3 years we've gone from forgetting how to merge an Excel worksheet with a Word document, to having to help her dress, bathe, monitor her medications to make sure they are taken, make sure she uses shampoo before conditioner, and helping her feed herself.

      She has had expressive aphasia for over two years which means she can "see" the word or phrase in her mind but the neural connections that gets it to her vocal chords to say it or her hand to write it are gone. And they will not come back.

      Her friends and family, even some of her own children, avoid her, so other than me, she is alone. We know that she will soon need full time nursing home care, but we don't have the resources to pay for it, which is a problem. There aren't any government (state or Federal), charity or foundation programs to help with the expense. Support for the caretakers and families of younger-onset Alzheimer's victims is almost non-existent. Covering the cost of prescriptions required months of appeals because young people don't get Alzheimer's.

      A Tsunami is coming. There are a lot more "Alice's" out there than anyone imagines and nobody, not the government, not the healthcare industry, not corporations, has a clue what needs to be done before it happens.

      Delete
  2. early onset alzheimer's is alzheimer's but before the age of 65. Just remember that both have stages they go through. You don't automatically start off with stage 3

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  3. It is sad to lose a little of your wife each day. I keep projecting forward to when will she be gone! How do I make the time between now and then happy for us both?

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    1. Dear J..I am so sorry about your dear wife. I was a care giver of my husband and it all is so difficult as you shared seeing the changes and knowing you can't do anything about it. I feel it is especially hard for the husband as you have always been the fixer upper in things that have happened over the years now that has been taken away from you. Try to find times in the day where joy can be felt..perhaps taking a small walk in the park if she can do that or just sitting on a bench holding hands.
      Listening to your favorite music that you shared in the past and dancing if you wish or just swaying to the music. Our loved ones with AD tend to enjoy the older music like with Perry Como and the older quieter movies like the Sound of Music. You will find just being able to share a HUG or holding hands will be your treasures to hold close after you have to say good bye. I wish to say to be kind to your self knowing that your doing the best that you can and your wife is blessed to call you hers as your question shows how much you care!! One day at a time and look for the small moments of joy they will be there. My best..Ann

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    2. People who actually live with dementia have some of the best insights... there is a collection of various videos by people living with dementia at the following link:

      http://www.alzheimersweekly.com/search/label/Living%20with%20Dementia

      You can also get there by going to the left column on any page on this site and clicking on "Living with Dementia".

      Your question does not say much about what stage the two of you are going through, so forgive me if this recommendation is a little off, but from the sound of it, one video you may find very helpful is:

      How David Lives with Alzheimer's to the Fullest

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  4. Alzheimer's is so much more then just loosing your memory and no two people are alike. This movie does not portray the real picture and tragedy of this devastating disease. My husband lost his ability to communicate verbally the first year after being diagnosed. He could not do the smallest task like turning on a faucet of putting on a T-shirt. He became incontinent and so much more. His last year he was no longer able to walk without help and the last 8 months he was bed ridden. He was my hero and God gave me the strength to care for him in my home. We were together 50 years it only seem right that we should do this journey together also. I look back and don't know how I did some of the things that were required of me but I know that was because of the sustaining grace of God and our amazing love for each other. He went home in 2005 and I miss him every day. May God be with all who are care givers and please know circumstances determine if one has to place a loved one but your still their care giver and love always abounds. Your all doing amazing things for your loved one know that! Bless and find moments of joy in your day together..that smile, the touch of their hand in yours, the twinkle of their eyes that says "I love you!" Ann Gallagher

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