Literature Review: Lessons Learned on Early Onset Alzheimer’s Disease From the Novel “Still Alice”

Lesson's Learned on Early Onset Alzheimer's Disease from Still Alice (1)Time and experience have taught me that working directly with Alzheimer’s patients and other people requiring long-term care was not the career path for me. As much as my sensitivity and empathy worked in my favour while working in long-term care homes, it also worked against me in these situations. I felt much guilt for betraying my desire to do something good in the world. But to make up for this act of “giving up” I vowed to make a difference in my own way  through research and writing. The desire to be involved in discussions and analysing situations  surrounding ageing has stayed by my side. Better yet, my desire to improve the ageing process has stayed the same.

To say that Still Alice had an impact on me is an understatement. After crying my last cry at the end, I took a moment to try to understand what had overcome me.  As painful as the story was, I was glad to have read it. I realize  it’s a fictional story.  However, it also represents what many individuals and families experience. Much of what I  read reminded me of my previous work within long-term care settings. The difference lay in the fact that I had only received part of the picture when interacting with patients with Alzheimer’s disease and other cognitive impairments. The author, Lisa Genova, presents a full bodied scenario of what early onset Alzheimer’s disease looks like from the symptoms to the diagnosis to the progression of the aggressive disease to the ripples it creates for everyone involved. Genova’s primary aim in writing this novel was to spread greater awareness on early onset Alzheimer’s disease. Without giving away  too much of the plot, this review is my way of helping to leverage her initiative by sharing some of the lessons we can learn from early onset Alzheimer’s disease.

Alzheimer’s Disease is not reserved for the older adult population

It would seem convenient if it was. Not to say  Alzheimer’s disease is by any means easier for the 65+ age group. It’s not.  When I learned about early onset Alzheimer’s disease while completing my degree in Gerontology, the information never truly seeped in  because of  my limited interactions with early onset patients.  Genova’s vivid and haunting descriptions make you feel like you’re right there experiencing the disease the way a patient or family member would.  It’s sad to think that someone reaching the peak of her career, looking to achieve more, could lose it all without harnessing any sort of control. Beyond the context of this novel, I started to consider what this would all mean as a sufferer prepares for retirement or long-term care options.  While Alice considered how her husband might have to finance her potential move into a long-term care home, I started to think about how helpless she feels in this situation. The idea of moving into a long-term care home alone is overwhelming enough. But it must be extra overwhelming to imagine a day when the ability to financially contribute to your own health is no longer within your control. Even when you’re still “at the age” to work. It’s almost as though you’re racing against time before the debilitating disease rears it’s ugly head.

Even the most surefire methods of prevention can work against you

The main character,  Dr. Alice Howland, was a highly accomplished cognitive psychology professor at Harvard University. Much to everyone’s shock, hers included, she became diagnosed with symptoms of early onset Alzheimer’s disease. It is widely assumed that keeping your mind sharp and education are good ways to delay or prevent the onset of Alzheimer’s disease. But even in the best efforts, your genetic makeup triumphs. On the relatively bright side, there may be ways to prepare for Alzheimer’s disease. This TED talk struck me with a sense of hope. The advice provided by Alanna Shaikh may help complement your existing knowledge of early onset Alzheimer’s disease. As the speaker says “if the monster wants you, the monster’s gonna get you.” However, that doesn’t mean you shouldn’t try your best to prevent Alzheimer’s.  A combination of both prevention and preparation may be effective.

The “rare few” who experience a disease, condition, or circumstance need a lot of support

Alice was angered by her shocking diagnosis, one that made her stand out. Can you blame her? Absolutely not. When she was searching for support, she felt alone. She had to create her own initiatives to seek support from other early onset sufferers. After being in touch with a local social worker, she was able to develop her own support group. What unravels afterwards is both uplifting and sad. (I won’t provide any spoilers here, I promise.) However, I will say that if there are no support networks in place for early onset Alzheimer’s patients, then there should be. Still Alice helped to bring this need to the forefront.

There is no right or wrong way for family and friends to handle Alzheimer’s disease. Everyone has their own way of coping.

As a long-term care home staff member, you never quite see the full picture of family conflicts and coping. Most of the time, the family members are pleasant and friendly to the staff. But deep down you know there is a pain behind their smiles, struggles that are left unsaid. As the story of Still Alice progressed, I felt a sense of anger toward some of the family members, Alice’s husband in particular. On the other hand, the role of a primary caregiver is never ever easy. It was because of this deep love that he reacted the way he did. If he showed indifference toward Alice, I may been more upset while reading this novel. At the end of it all, my opinions and the opinions of others toward coping mechanisms carry no weight. No one is in a position to judge or dictate how well someone is coping with something as tragic.

Early onset Alzheimer’s disease is an even longer goodbye

Nancy Reagan described Alzheimer’s disease as a “truly long goodbye.”  She made this poignant statement in reference to her husband’s experience with the disease. When I stumbled upon this quote in university, I was moved, saddened, and could never quite get that quote out of my head. I’m sure it resonates with so many other family members and caregivers of Alzheimer’s patients. But when I was granted this in-depth view of Alice’s experience, I sympathized with her family and friends even more. I realized that early onset Alzheimer’s disease means that you spend more time saying “goodbye” to the person you once knew. In the process, you also spend more time saying “goodbye” to your hopes of how you planned to spend time with that person. It’s like a ghost who lingers in your presence.

Closing remarks

I’ve been advised not to read books with a sad context when you already feel sad. As good as this advice may be, I don’t think there’s ever a wrong time to read this book, especially for those who want need to know more about early onset Alzheimer’s disease. At this point in time, the tragic and inconvenient reality is that Alzheimer’s disease does not wait for a right time. In actuality, it sucks away time. Educate yourself on early onset, get yourself tested if you suspect any signs, and most importantly, make the most of the time you have while you are still you.

If you’ve read this book before, feel free to share you thoughts in the comments below or  share your thoughts on anything I discussed here. I’d love to hear from you!

 

 

 

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3 Comments

  1. Michelle Brennan Allen

    The Long Goodbye… as my Dad’s caregiver I learned just as much about myself as him in his illness. Some of it was soul wrenching.The kind of journey that not only takes them but pieces of your heart that are so deep.The teasing ever lingering platoughs that emerged to take more pieces of him continued one by one stealing the wonderful mind of my father. Just as you thought “I can get used to this”another furious change would begin. We adapted…we soldiered on.
    His battle lasted 18 years from diagnosis! It’s hard to believe we lived through 18 years of this together. I would do it all over again with no regrets.
    His life with diagnosis became more difficult for him to maneuver due to his great desire for independance.
    The worst was him losing his license! Trivial to some but he grieved this and fought it tooth and nail! He came to face his disease with this monumental strength. My heart ached for him to lose that freedom we all take for granted.
    The disease took so much of that away. It was truly like watching an hour glass and the particles of sand rapidly counting how much time we had left of this wonderful man.
    From caregivers in the home to respite care on an occasional weekend it still didn’t feel like enough.
    His eventual decline led to a geriatric hospital the was the most difficult part.

    Still Alice was one of the most difficult movies for me to watch after my father’s struggle, but with the movies release it has started to bring about awareness of this horrible disease and the difficulties families must endure. A system that does not prepare us for the full bodied changes that occur to our loved ones. You see as realistic as we may think we are, we still believe that it will surely stop now? We pray for peace….we pray for his comfort…we pray for sleep without worry.But it doesn’t come.
    In this journey I eventually found grace with it’s ending. His peace came silently and quickly after enduring so much suffering.
    Testing for myself isn’t something I’ve considered at this point. I was told at the hospital by the Doctor’s that it was not a genetic type that my Dad had. I’m grateful he continued to know who I was until the end.
    Quite Frankly I’m afraid of a future that may never be.
    My heart feels for those who are in the same battle and now support community programs dedicated to the care of families in similar circumstances.
    Bringing awareness is the most important and valuable information for those at the start of thier journies.
    Finding a cure is a hope for all who are in this battle.
    It’s not just the elderly being affected. Perhaps funding will step up to continue reasearch for a cure.

  2. Thank you for sharing your story on your journey with your father Michelle! I want to extend my condolences for your loss. 18 years is indeed the longest goodbye. I pray for hope for a cure one day and for those sufferers to find peace during their final days. I also saw the movie Still Alice and was deeply affected by it. It paralleled the book quite well but the key point that was missing was the support that Alice was trying to seek from other early onset patients. There is power in knowing that you’re not alone when suffering and I hope more awareness is brought to that very idea.

  3. Thanks for shedding light on this topic. I think we all assume it won’t happen to us or our family members, and therefore we should not care. But we should never assume, and always empathize with those suffering from this tragic disease. One can only imagine how they must be feeling, as well as their family members. I pray we find a cure for this disease soon so no one ever has to suffer from it again.

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