Still Alice: a rare look at how dementia steals memories from millions 51



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For many of us, memories are our most precious possessions; they makes us the people we are. Consider how you would feel then if your memories were stripped from you, as they are from people diagnosed with dementia. This is exactly what happens to the central character of Still Alice, a film opening today nationally.

Directed by Wash Westmoreland and Richard Glatzer, the film is based on the eponymous novel by Lisa Genova. Julianne Moore has been tipped to win the Best Actress Oscar for her portrayal of Alice Howland, a distinguished linguistics professor at Columbia University.

Still Alice captures the emotional upheaval that results from a diagnosis of dementia and provides a compelling insight into the world of people living with the condition.


The shock of diagnosis

When the film opens, Alice Howland appears to have it all. At 50 years of age, she is the picture of elegance and good health, exercising frequently, cooking elaborate meals and maintaining a world-class academic career as well as a happy family life.

But it quickly becomes clear that Alice’s memory is failing. Fleeting moments of disorientation and confusion begin to punctuate her life. Wondering if she has a brain tumour, Alice consults a neurologist only to find she is in the early stages of Alzheimer’s disease.

Current estimates suggest approximately 7.7 million new cases of dementia are diagnosed worldwide each year. The disease typically evokes images of the frail elderly, but younger-onset dementia, which is what affects Alice, strikes people under the age of 65.

Estimates suggest younger-onset dementia affects approximately 54 in every 100,000 people aged between 30 and 65 across the population. There are now even calls for care facilities to adapt so they can cater for these often physically healthy people.

The diagnosis of dementia affects Alice and her family in profound and different ways. The implications of Alice’s condition dawn on her husband as he begins to comprehend the care she will need. Her children move from shock to sadness and, ultimately, fear as they grapple with the decision to undergo genetic testing for Alzheimer’s disease.

A fifth of younger-onset Alzheimer’s disease is familial, meaning there is a genetic cause for the condition. Currently, we have genetic tests for three causative genes – presenilin 1 and 2 and amyloid precursor protein (APP). If someone has one of these genetic mutations, they will usually show clinical signs of dementia before the age of 65 years, and have a 50% risk of passing the gene on to their children.


A rare glimpse

Alzheimer’s disease was first described and named in the early 1900s; its causative proteins (amyloid and tau) were described in the 1980s. There’s no cure for the disease, but there are a few treatments that slow disease progression. And diagnosis is often met with stigma and embarrassment.

The film provides a glimpse of the daily struggles of people living with younger-onset Alzheimer’s disease. In a poignant scene, Alice says she wishes she had been diagnosed with cancer, as there would be less stigma and more support for her and her family.

Until recently, most research (and funding) was focused on medical conditions, such as cancer, which cause many deaths. But with the growing awareness of our ageing population, research money is now targeting Alzheimer’s disease and other neurodegenerative conditions.

The idea of suicide is also raised as Alice plans to end her life when she can no longer answer basic questions about herself. Research shows that suicide attempts are not uncommon among people with Alzheimer’s disease.

Alice remains eloquent and insightful throughout her struggles, most notably when she delivers a powerful speech at the Alzheimer’s Association carers’ meeting. The scene is particularly moving as the thoughts, feelings and wishes of individuals living with dementia are rarely articulated in this manner. It is a powerful reminder that people with dementia still retain hopes, dreams and wishes for the future.

Still Alice is a poignant window on the world of the millions of people living with Alzheimer’s disease. It’s an important reminder for society as a whole of our responsibility to plan for and manage this rapidly growing condition.

For those of us working in the field of dementia research, the film is a sobering reminder of why we entered this speciality area, and serves as powerful motivation in our quest for an eventual cure.

Still Alice opens in Australian cinemas nationally on January 29.

The Conversation

This article was originally published on The Conversation.
Read the original article.

Muireann Irish and Rebekah Ahmed

Muireann Irish – Senior Research Officer at Neuroscience Research Australia Rebekah Ahmed –Consultant neurologist & PhD student at Neuroscience Research Australia

  1. I am just speaking for me personally, if I had dementia, I would end my life before It got to bad, I think your brain is the essence of who we are, it contains our thought and our memories, life for me without a functioning brain, would no life at all. But others may have a different approach..we all deal with things in the best way we can

  2. Oh yes, I doubt if many of us don’t, at least know of someone. This lady is actually my step mother, I only say that to clarify an experience I endured in her early stages of the disease. Was visiting her in her care home and she didn’t know me, that didn’t upset me, but when one if the carers said to her, this is your daughter, she became very upset and aggressive, she had two daughters and I wasn’t one of them. This lady had taken very good care of me since I was about 8, and it was like a punch to my stomach. I ended up having to leave due to her continued angst. Had plenty of time to absorb what had happened on the drive home, wondering if I would be able to visit again. I did visit again, of course I just had to, this time she was pleased to see me. Over the years she no longer remembers who any of us are, but she always has a big smile on her face, is happy in her own world. What more can we ask. Funny aside, we were having dinner and she suddenly asks, “whatever happened to that Hitler fellow”. There have been many such comments, I just have to find the humour.

  3. Alzheimer’s is a cruel condition. I noticed my husbands condition when aged about sixty, just little things. How I wished I had written a diary that I might have helped others understand. Being a carer for many many years, the hardest part was when people did not understand or want to understand the condition. He was a very social person and of course talk to anyone but had no idea who they were. That is what they could/would not accept. John would not talk about his condition, but kept asking me to look after him.
    Which I did until his condition worsened, at times I would see him sitting on the floor not knowing how to get up. Nothing for him to have seven showers a day. And change his clothes every time. God Bless him. A rule that is hard for many carers is not to aggravate their loved one, be very patient and have as much help mentally as possible. Yes, we did the assessment for help but

  4. This is the most insidious disease robbing people of their minds. From the people who I know who have it they do not want to live with it. Terry Pratachett wanted to be allowed to take his own life because he knew that eventually that would be taken from him. He just wanted to have some kind of control were this disease leaves you with none.

  5. My brothers partner is now in care aged only in her 50’s after being diagnosed in her late 40′ s. It broke my heart watching her decline, my brother cared for her at home including showering etc until his sudden death from cancer with-in 6 months of his diagnoses last year, he was only 53. If I had the chance to chose, I would have the cancer any day.

  6. Both my parents have this disease and it’s a tough road to travel seeing the ones you love, admire and respect go done this road.

  7. one day with some luck toy Abbott ,will know of this i think he has started tbh, they take away the only bit of money the carers look forward to ,from the ones that battle to keep a grief stricken families together ,
    when he lets big multie million dollar firms pay no more than than 3% tax , whats happened to the reality of life i am 66 and seen this place we call home go down hill so bad ,where dose it stop ,

  8. Very cruel disease my mother had it for years before she passed away 20 months ago I visited her at least twice a week when she was in care, there were quite a few younger people in the home which I found very sad & used to think how lucky I was that it wasn’t either of my brothers I was visiting

  9. I will have to see this movie it just goes to show even the most successful people can get dementure. My mother has been in a nursing home for 5 yrs with this & I am dreading the day when she no longer remembers me but she seems very happy & that’s important. I think if anyone suspects if they have dementure it’s time to make sure you have it checked out I know I would.

  10. The latest was my father in law. He deteriated very quickly. What should have been at least 3 to 5 years, happened within 12 months. He originally had an operation for a double hernia, & we noticed a few minor quirks that were out of character, & some months later his kidneys shut down. Very lucky to save his life on that one. But we noticed the changes immediately, & our doctor had a specialist assess him, giving us the terrible news. Having seen it all before, I was prepared, but the degeneration was simply unbelievable. You must maintain a gentle manner, to keep them calm if at all possible. The loss of knowledge of every facet of their life is right there for you to witness. The simplest things like sitting down in a chair – they can not understand what you mean. You try to help them to sit, they refuse to bend their legs & fight against the movement. Coaxing & cajoling & pleading & bribing sometimes will work, sometimes not. Loss of understanding to open their mouth, sit up, lay down, hold food, sing songs, answer any type of question, & the list goes on. Home care is only OK for a while, then their care needs to be in a home, as much as you may hate the idea, their needs are the first priority. This is where medical research needs to be advancing, as more of us are getting older all the time, putting us nearer to the clutches of this disgusting disease.

  11. A very sad and cruel condition. A friend, whenever we meet, his first utterance is, ‘Who are you? ‘ , makes me cringe.

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