Into the unknown (Alzheimer’s)

Posted by in Musings, Sidedoor

A while ago my work colleagues voted to pledge our fundraising efforts to an organisation that fights Alzheimer’s disease rather than to a well-known charity. It was a bit surprising because I knew little about the disease yet it clearly resonated with many. I figured I would do some research and watch a few films.

It turns out there aren’t that many films about Alzheimer’s disease or dementia for that matter. The last decade has offered more than the previous 50 years at least in terms of mainstream cinema. I watched seven films and four were particularly insightful: Iris (2001), Away from Her (2006), Amour (2012) and Still Alice (2014).

A strange and devastating diseaseWhen someone cannot recognise their own daughter after 40 years in their company, it makes you wonder if Alzheimer’s isn’t one of the strangest diseases on this planet. On screen its onslaught is typically charted in an early scene showing a moment of forgetfulness or something else innocuous – the other actor doesn’t realise what’s happened, but we do – something isn’t quite right.

In Northern Ireland, 20,000 people suffer from this progressive condition yet it remains something of a mystery with no cure known. Across the films the disease is portrayed as merciless and frustrating; sentiments that are perfectly captured in Still Alice when Julianne Moore’s character laments, “it feels like my brain is fucking dying and everything I’ve worked for in my entire life is going – it’s all going”.

It feels like my brain is fucking dying and everything I’ve worked for in my entire life is going – it’s all going.

Accompanying each film’s characters through different seasons – in a way that perhaps film medium does best – I learned much about the profound impact on those closest to the reality. There is a hint that partners suffer as much, if not more, than patients themselves, as they try to cope in full consciousness. Whether the case or not, the difficulties and complexities of the diease are carefully painted.

In the tender independent film Away From Her, for example, a remarkable debut by a young Canadian Sarah Polley, based on an Alice Munro short story, we journey with Grant as his lifelong companion Fiona slowly fails to recognise him. The cinematographic choice of bleak panoramic winter shots epitomise the new uncompromising frontier.

Beauty and brokennessAmour is the story of an elderly French couple dealing with the reality of old age and Alzheimer’s disease or some other form of dementia. The husband decides not to put his beloved wife into a residential home but rather (proudly) chooses to care for her in their Parisian apartment. This was the most difficult film to watch in some ways – not as sentimental – actually more clinical than the others, but a masterpiece that is, in the words of its Austrian director Michael Haneke, “a dialogue (not a monologue) to provoke in the viewer his own thoughts, his own feelings”. This is a phenomenal film that will linger for a long time.

This was the most difficult film to watch in some ways.

There’s a sense of vulnerability in watching these films as you think about loved ones and the threat of dementia. I found a beautiful (and helpful) quote by Richard Eyre, director of 2001 biographic Iris about poet Iris Murdoch – once described as England’s most intelligent woman. He said, “one of the things that I’ve tried to show in the film is that even though the person is disappearing in front of you, in some way there is a sense in which they remain. You can still love the person because their soul is still there until the end”.

Changing the storyThe American actor Seth Rogan recently addressed the US Congress to raise awareness of the disease (his mother-in-law was diagnosed). He said, “Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s,’ (but) it needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs”.

I never realised that shame can be associated with Alzheimer’s disease but I reflected on the fact I hadn’t heard much about it until recently. The four films don’t show stigma per se – perhaps that’s for another film – but they do tell stories which I think help to shift the conversation and bring about openness. I’m reminded of a powerful line in Still Alice: “Our strange behaviour and fumbled sentences changes others’ perceptions of us… but this is not who we are. This is our disease”.

Our strange behaviour and fumbled sentences changes others’ perceptions of us… but this is not who we are. This is our disease.

These heartbreaking films observe the devastation of a strange and frightening disease and bare testament to the fragility of life. With the help of some remarkable acting and screenplay, the directors have shown courage to offer films that open our eyes a little wider to the disease and the world around us.

*Other films watched: A Separation (2011), Barney’s Version (2010) and The Notebook (2004). Alzheimer’s Society website