Live Well or Die-Hard? A seminar on portrayals of dementia in the media
Blog post written by Lindsay Kinnard
On the 10 June 2024 we hosted an online seminar on portrayals of dementia in the media. The inspiration for the event came from Willy Gilder who was motivated by recent campaign films from Alzheimer’s Society (The Long Goodbye) and Alzheimer’s Research UK (Change the Ending). You can read Willy’s response to the Alzheimer’s Society campaign film in the Guardian Online.
Willy was joined by members of the Edinburgh Centre for Research on the Experience of Dementia (ECRED) and the Alzheimer Scotland Dementia Research Centre (ASDRC) in delivering the seminar.
In this blog we provide an outline of the seminar discussion, where we were joined by 60 participants in sharing their views on dementia in the media.
What happened
The seminar was chaired by Professor Heather Wilkinson who provided a warm welcome to everyone and highlighted the intention to provide an opportunity to listen respectfully to everybody’s opinions. There was a screening of Alzheimer’s Society’s “The Long Goodbye”, followed by a response from Willy who expressed how difficult it was for him to view this campaign film. Willy shared how it “swamps his whole body” with emotion, making him feel “upset and angry”.
Willy went on to share his own desire to live as well as possible and how this personal experience is mirrored in what he sees in friends and colleagues who are living with dementia. Whilst they appreciate the challenges of the illness, he emphasised that their focus is on “getting on and doing stuff and wanting to live our best lives”.
In contrast, Willy considered Alzheimer’s Society’s campaign film to portray dementia as a cruel, nasty disease which causes a living death both for the person themselves and for their family. Focused on the advanced illness, which is commonplace in the media, it overlooks earlier stages and is dehumanising to the person with dementia. Willy highlighted that “research shows that if you say dementia to most people, they think of the end stage” and expressed concern at the stigma created by not sharing the broader reality of living with dementia.
Dr Nichole Fernandez, a Visual Sociologist at the University of Edinburgh, provided a broader context for the discussion by presenting findings from the “Images of Care” study at the Advanced Care Research Centre. This study examined what care in later life looked like in the media at a time of heightened coverage during the COVID-19 pandemic. Nichole highlighted the power of the media in recreating stereotypes and fear as we imagine ourselves in an unknown and scary future.
Nichole found the person receiving care was represented in images as inactive, alone, often faceless, in a low-lit bedroom or hospital room. This is contrasted with a younger image of a care-provider that typically represented a professional and medicalised approach. The images failed to recognise the wide spectrum of experiences and the active and reciprocal nature of caring relationships. Image Guidelines for Care and Later Life were created in response to the findings from the study.
Before moving into smaller group online discussion rooms, the following statements were shared with everyone:
- The decision by the Advertising Standards Agency not to uphold the 235 complaints against “The Long Goodbye” campaign films, which had challenged it as being excessively distressing, offensive and irresponsible. The Advertising Standards Agency “concluded that the ads were not irresponsible, did not cause serious or widespread offence, and did not cause unjustifiable distress”.
- A statement to us from Alzheimer’s Research UK who advised the campaign film had been created “to highlight the impact dementia can have on people. And why we need to find a way to put a stop to it “(Alzheimer’s Society were also invited to comment but did not provide a statement).
- A personal reflection from a person living with dementia who was unable to attend the event but wished to contribute to the discussion (this reflection is included in the key discussion points below).
What was discussed
There were a range of perspectives put forward during the discussion which have been grouped into the following themes:
- Grim portrayal of dementia: the campaign films by both charities presented a depressing image of life after a diagnosis of dementia that was focused on the advanced stages of the illness. This is consistent with the typical image of dementia across all forms of media. This has served to establish a generalisation about living with dementia and imbalance in failing to represent the wider range of experiences.
- Missed opportunity: it did not show the positive work of Alzheimer’s Society and types of care and support available. There were concerns it may lead people not to seek help as it portrayed the current experience of living with dementia as hopeless.
- Trust: it may lead people to no longer trust Alzheimer’s Society. There was also a concern that it may have undermined trust more widely between people living with dementia and those working across the areas of dementia care, support, research and campaigning.
- Identity is fluid: as humans our identity is not fixed and we are continually evolving. A person with dementia will continue to develop new aspects of themselves and interests. People will also experience the illnesses that cause the symptoms of dementia in a unique and individual way.
- Representation and space for all experiences: the message of “living well with dementia” can be difficult for people to hear when they feel this is not something they can attain. The images portrayed in both campaign films will be the reality for some people and these experiences resonated for some of the event participants. The experience of family carers must also be recognised. For others the message of living well, adapting, maintaining independence and empowerment is their lived experience of dementia. There is a need for representation and balance across the wide range of experiences of people with dementia, carers and families.
- The reality of advertising: television advertising provides the opportunity to give one clear message and viewers will respond with emotion and take action accordingly, such as donating to a charity. The aim and priority of the campaign films by Alzheimer’s Society and Alzheimer’s Research UK was considered to be raising funds by some event participants.
- Contrast with other illnesses: there is a media portrayal of a potential cure and life after a cancer diagnosis, whereby those living with cancer are depicted as able to ‘live with’ the condition. Sadly, this is not the current situation in dementia, whereby the focus tends to be on living with advanced dementia, and not on improving quality of life.
Thank you to everyone who attend the seminar and contributed to the rich discussion. We aim to hold a follow-up event in the Autumn 2024, details to follow. In the meantime, we invite you to:
- View the “Image Guidelines for Care and Later Life” discussed in Nichole’s presentation.
- Email Kinnaird@ed.ac.uk if you would like to join the ECRED mailing list.
- Contact Neuroprogressive and Dementia Network if you are interested in taking part in research
- Contact Alzheimer Scotland Dementia Helpline should you require information, signposting or emotional support: Telephone: 0808 808 3000 Email: Helpline@alzscot.org
