Last month I was struck by a debate on social media about a new film from Alzheimer’s Research – ‘Change the Ending’– that depicts dementia.
‘Change the Ending’ divided opinion. Some people said it was brilliant and a true portrayal of their experiences with family members. Other people felt it projected only hopelessness and negativity. Some people with dementia particularly disliked it, while others, like Frank and Alison, supported it.
I have to admit, I didn’t really like the film. I know charities often aim for hard-hitting messages because appealing to people’s hearts and minds assists with fundraising, but for me this film raises some key questions, for example:
- Is anyone’s life really a fairytale to begin with? I would suggest for most people it isn’t.
- Is a Disney-style animation a suitable way to frame dementia? It feels very slick, but somehow other-worldly to me.
- Is complete hopelessness a good message? I wouldn’t deny the difficult and sometimes awful times we had with my dad, but there were amazing moments too. With dad dead I cherish those moments so much more than the awful ones.
- Are we really only looking for one cure? There are numerous different types of dementia, one cure won’t fix them all.
Finding balance in the portrayal of dementia
I’m a firm believer that there has to be balance in the coverage of dementia. It certainly isn’t roses around the door, very far from it, but to strip away any positive messaging also proliferates stigma and makes people currently living with dementia and their families more isolated than ever. Who would want to go near someone who’s been portrayed in an animation as turning from prince charming into a character who’s not far from becoming a beast?
With this in mind, how can dementia charities find balance in their portrayal of dementia?
For me, Dementia UK found good balance in ‘Together Again’. In fact, I like it so much I’ve used it in training.
It shows the anguish that anyone who’s had dementia come into their life knows. It’s not sugar-coating the disease; the man looks upset and emotional on the beach, his partner in the lighthouse looks lost, vulnerable and confused.
It portrays how important support is, as the nurse navigates the ship through the stormy sea with the man and they reach the lighthouse together.
It then shows how people can feel apart from one another – even when side-by-side – as initially the reunited couple remain very distant. Crucially, though, it then gives an example of what can help, as the couple look at an old picture together and the nurse puts on some music which helps them to find a connection again.
‘The Ultimate Vow’
A film with similar messaging to ‘Together Again’ is Alzheimer’s Society’s ‘The Ultimate Vow’.
Here we see real people, not animated figures, in their home environment with many heartbreaking struggles. However, amongst these we see some solutions and support options, like labelling on kitchen items and using a photo album to reminisce. We also see an Alzheimer’s Society Dementia Support Worker join the couple at the end.
Clearly it’s easier to show all of this when you are fundraising to provide Admiral Nurses or Dementia Support Workers rather than fundraising to find treatments and cures. Even when you’re in the latter category, though, you could choose to talk about fundraising for treatments that help people live a better quality of life and what that could look like for those families in a ‘dream’ future world that the public are asked to make a reality.
Future films about dementia
For me, the deciding factor on any portrayal of dementia is how it impacts people who are living with dementia and their families at that time. I largely avoided coverage of dementia when my dad was alive, although to be fair there wasn’t a huge amount to avoid as it was mostly just occasional items in the news with awful headlines.
I dislike anything that makes people living with dementia feel uncomfortable or unhappy. Individuals and families living this reality have enough to cope with, without films on TV and social media making them feel even worse. With limited treatments and no cure for any type of dementia, having this diagnosis can feel like a death sentence if you aren’t shown examples of what is possible and what can be done.
I’m not suggesting that hard realities aren’t portrayed. Everyone who lives with dementia knows the darkest times only too well. But balance is vital, and my personal request would be that for every tough reality we depict, we also show what is possible.
Anyone who read my review of ‘Still Alice’ will know I feel passionately that when we bring depictions of dementia into people’s lives and living rooms that we do so in a way that leaves them with something to consider beyond the terminal prognosis they face. We’d never depict cancer without showing the person being offered treatments of some description, and although medical interventions are still scarce in dementia care non-drug therapies can be amazing, both for the individual with dementia and their loves ones who are looking for ways to keep connected in the face of their new reality.
So my message to future filmmakers is simple: Depict a balanced portrayal of dementia, and for genuine good practice test your script/storyboard with as many people in the dementia community as possible.
Until next time…