Films like Elizabeth is Missing and The Father are opening up doors to discussion about dementia (Picture: AP/Rex)
As Dementia Action Week draws to a close, UK charities have considered the portrayal of dementia in films and television programmes.
From Mandy Moore in This Is Us, to cult classics like The Notebook, dementia in film and TV is mainly portrayed through storylines of memory loss and a change in family dynamics, which, while they do raise awareness of the sensitive matter, they nonetheless can in some ways ‘glamorise’ the condition.
In the penultimate episode of This Is Us, Rebecca’s (Mandy Moore) loved ones said their final goodbyes to the matriarch following her heart-breaking battle with Alzheimer’s.
Fans flocked to social media to share their emotions at the tragic episode, with many recalling how it represented their own experiences with their loved ones.
‘I just watched #ThisIsUs &I had so many emotions. My mom passed away not to long ago from dementia. My sister and I sat around her bed saying goodbye. This episode was beautifully written,’ one person wrote.
Another added: ‘Wow that last episode of #ThisIsUs just opened me up to all my feelings. My grandmother had dementia and passed away without me being at her bedside. That whole show has been healing what I couldn’t in real life.’
A third viewer shared: ‘For me the last few episodes have been for my mum, who had dementia and died in 2020. For the goodbye I never had because of Covid. Thank you #ThisIsUs for sharing your goodbye.’
Speaking about the representation of dementia in film and television, Karen Harrison Dening, Head of Research and Publications at Dementia UK, told Metro.co.uk: ‘I think that some get it right and some less so.
‘For example, in The Father, I was thinking “Gosh this is good, this could be a person with dementia, this could be the way it is experienced.” The environment is a bit confusing at times, as a viewers you think “Is that his flat or is that his daughter’s flat? Is that his clinic or is that his flat?” so I think the way they portrayed it gave perhaps an insight into how a person with dementia might be confused about where they are, about whether this is their place or a hospice or whatever.
‘But it got right to the point where he was in a care home, and he became quite distressed and the care worker put her arm around his shoulder and was physically going to comfort him, which I thought was great, and he was saying, “I want my mum,” which a lot of people with dementia do, in severe stages of the disease, because they just want comfort, they feel distressed, and who do you want when you feel distressed, you want your mum. And she responded by saying, “It’s okay baby,” and I thought that that was a really poor way of responding to a distressed person with dementia because it was infantilizing. He might want his mum but he’s still a grown man.
‘But in a way I then reconsidered that view, because I thought that maybe this could be viewed as a good teaching exercise, you know, getting some care staff and asking what they would have done in this situation, or what would you do differently to this care worker. So as a dementia trainer I was thinking that that might be useful, but the general public are seeing that film, so they’re seeing that care-worker’s response.’
Karen continued: ‘And then you look at something like Still Alice, a film based on an actual story, about young on-set dementia, about an intelligent woman that’s a professor who develops young on-set dementia, but there’s something about that film, and with The Father, they glamourise it.
‘You still don’t get a sense of the average person with dementia, they’re either wealthy or high-performing individuals, and the glamorisation of the context and the setting.’
Karen was involved in the film Elizabeth is Missing, by supporting the film production team, and having meetings with lead actress Glenda Jackson to discuss how the condition could be portrayed as accurately as possible.
She told us: ‘I think that Elizabeth is Missing got it fairly right. There was a scene where Glenda Jackson was at the bus stop and she was confused and her daughter came, and she didn’t recognise her daughter immediately, and that really distressed the daughter, and then eventually she realised it’s my daughter and realised that she hadn’t recognised her, and they were both quite distraught by that particular incident and that was so true to how a lot of people with dementia and their families experience it, for the first time when the person with dementia forgets who somebody is so I think they did it quite well.’
Karen added: ‘Sometimes the arts and the media have a duty to portray a condition as accurately as possible. Dementia doesn’t just effect memory, it effects lots of other things.
‘Usually the memory is the first thing that people observe or notice, that they’re more forgetful than they usually are, but it could be about thinking that their thought processes may be disrupted, that their orientation, where they are, what day or time or year or season.
‘So like in The Father, we got a sense of his possible disorientation with the viewer actually not knowing quite where he was, sometimes you’d see the kitchen and it was contemporary design, other times you’d see it and it looked like something out of the 70s, so they portrayed that in a bit of a different way but they also portrayed an extension of a memory problem. He felt that people were after his possessions, particularly that his son-in-law was after his watch, so the way they portrayed that, and the way Anthony Hopkins responded to that, by hiding his possessions, because he was so paranoid and felt insecure, so there are other things of how dementia presents itself that could be put into such things.
‘Sometimes their language is effected, they might repeat words, or forget names, or use a word inappropriately, or they might hold a pen and know what it’s for but not what it’s called, so they might say, can you pass me that stick that I can write with, because they can’t remember the word pen, so there are lots of different ways that TV and film could portray dementia in those sorts of ways.
‘We can’t make the assumption that every older person with dementia is loved by their family. And I think that we talk about if you love someone with dementia, you live with dementia, or people talk about your loved ones with dementia, but a lot of older people, a lot of people with dementia, might not be loved, they might be awful parents. So I think that we do have to be sensitive to the person with dementia and their carers, but the relationship within which they live or did live and the emotions that go with that. You can imagine, if a family member really didn’t like their parent or the parent was too strict with them, and they develop dementia how difficult must it be for that family member to care for somebody who they felt didn’t care for them. So I think all these relationships have to be taken into account.’
Speaking about what film and television production companies could do to provide a more accurate depiction of dementia, Karen shared: ‘I think that they need to consult more in the development stages of a production with either people with dementia or their carers, or organisations like ours where we can actually advise on, if they’re planning on presenting a scene in a certain way, we can help deliver it in a more sensitive or a more realistic way that’s not going to scaremonger people, but that does have a degree of accuracy so it’s not like in Still Alice, who is wearing her beautiful hair and makeup right till the end, that’s not the way it goes.
‘I know there has to be a degree of creative licence, but for the books or media to be credible, and the person with dementia to be portrayed credibly, then it’s part of the research process.’
This week (May 16-22), charity Alzeheimer’s Society are partaking in Dementia Action Week, to ensure no-one is missing out on a dementia diagnosis.
Reflecting on how progressive television and film has been in raising awareness of dementia, Tim Beanland, Head of Knowledge at Alzheimer’s Society, told Metro.co.uk: ‘Every three minutes someone in the UK develops dementia, so it’s hugely important that more TV shows raise awareness of the reality of the condition and represent people with it accurately.
As seen in shows like This Is Us, ‘a dementia diagnosis can bring a huge range of emotions not just for the person with the diagnosis, but also for those around them. Family dynamics often begin to change over time, especially as the person with dementia becomes more reliant on their loved ones for support.’
Data from Alzheimer’s Society has revealed that 45% of people would feel uncomfortable raising concerns about a loved one’s symptoms, while 55% say there’s a stigma attached to dementia, however, as Karen pointed out through the example of Elizabeth is Missing, with progressive storylines emerging across media and greater accuracy in the representation of dementia, more awareness is being raised and in turn, reducing the stigma surrounding the condition.
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