In September and October 2022 I had the great honour of hosting focus group discussions with people who have been impacted by dementia in different ways. I hosted three focus groups as part of my ongoing PhD study: one with people with less personal familiarity with dementia, one with people who care or have cared for people with dementia, and one with people with dementia.
Lively and interesting discussions were had in all focus groups and I am writing this blog to share with you all some of what we discussed!
Throughout the different focus groups there were some common themes and these will now be discussed.
Different preferences for accessing information
accessing information in the media was very individual with some people preferring social media, others TV news and others preferring to get their information about dementia through peers and involvement in research.
"my wife has been diagnosed with Alzheimer’s only in the last two and a half to three years, I tend to find that the information I take hold of more so, is from personal information from people that I’m meeting" - Gerry
Lack of trust in the media
There was a general lack of trust in the media as stories and research is often sensationalised or ‘clickbait’ with catchy headlines not representing the content of a news item.
“it’s so easy to get confident sounding but rubbish information if you’re not careful" - Henry
Positives of social media
Some discussions were had about the usefulness of social media for finding a community and for learning more about dementia.
"I love Twitter, I know it can be a nightmare, but I think... if you’re careful about who you follow, and you follow trusted sources, it's taught me so much, I’ve found out so much about dementia that expands my experience" - Violet
Filtering information and the importance of hearing from those with lived experience
Also that information and news has to be filtered, not only for relevance, but especially if you are trying to stay away from certain themes of reporting. The importance of finding those who had a positive outlook as well as presenting a real lived experience of dementia was often discussed, such as those present in activism and blogging like Wendy Mitchell, Gail Gregory, Keith Oliver and George Rook.
"I was choosing what I read because I didn't want to read all the negative stuff because I was just trying to get into my head at the time what was happening and then I found people that were positive, who were saying there’s a beginning, a middle and an end and people like Wendy Mitchell" - Michelle
The 'S' word
There was also a common point of contention around terminology used in media reporting on dementia – the dreaded ‘S' word: sufferers. In the focus groups we discussed how infuriating it is that ‘suffering with dementia’ and ‘dementia sufferers’ is still used widely despite complaints from those impacted by dementia writing in to news outlets about how detrimental and stigmatising it is to use ‘sufferers’ to generalise all people living with a dementia.
“they will go through periods of suffering, but generally speaking, we are not sufferers, we're just people who happen to be living with dementia” - Julie
While some people are indeed struggling with dementia, there are lots of people who are still living full and happy lives, and we should not marginalise either group. The DEEP website have a great guideline for language about dementia, which can be accessed by clicking the photo below.
Stigma and blame culture
This contention continued with articles on the theme of 'preventing dementia' - they were viewed as doing nothing to help the stigma of dementia and as contributing to a blame culture. They were often upsetting as people did/do the things suggested to keep their brain's active, but this did not prevent them or their loved one from getting dementia.
"it's a bit like putting the emphasis on well maybe there's some responsibility with people who get dementia" - Julie
Uniqueness of each person living with dementia
Some more commonly discussed things were the individuality of experience of dementia. Every person with dementia has different experiences, symptoms and levels of those symptoms:
"And maybe that's what we need the media message to be just that we're not, you know, everybody is not the same" - Gemma
No personal experience = no interest in stories about dementia
Across all focus groups it was discussed that if you have no personal interest in dementia, it’s unlikely that you would even read or view things about it:
"if you can relate back to when dementia wasn't a problem for you then you just think “oh well”, you know, “it's not- nobody in the family's got it, so it's nothing to do with me” and I would just totally ignore that" – Geoff
Charities in the media
Something that only came up once, but seemed a very poignant thing was the images that charities put out when it comes to fundraising campaigns. They often feature sob stories that give the impression of dementia as hopeless, not reducing the stigma around dementia. Instead, it would be better to pitch charitable donations as an investment to enable more people with dementia to live positive lives for a longer period of time – and use real life examples to illustrate this.
"we can actually help people live very positive lives for a much longer period and here are a selection of people who are living those type of lives that we're talking about … and so encourage people to be more investing in enabling more people to live positively" - Julie
Using media as a prompt for discussing difficult topics
Another thing that only came up in one of the focus groups was how stories in the news or social media can be used to help start conversations about difficult topics like planning for the future and end of life in a low-stakes way, instead of having to formally have that conversation which can be more emotional and overwhelming for everyone.
"articles like this drove conversation in my household because it was a way to talk about our hopes and preferences and desires without having to sit down and have that really hard conversation directly" - Hannah
Goodbye doom and gloom, hello positivity?
The title of this blog echoes a lot of what we discussed in the focus groups – that there tends to be a lot more ‘doom and gloom’ stories in the media, where we would like to see more positivity overall.
"There’s never anything positive is there?" - David
This section of the blog goes through more things we would like to see from the media in the future:
Positivity – media coverage showing…
What people with dementia still have to give.
People with dementia who are changing things, learning new skills and those living well with dementia.
BUT… it is important to strike a balance in representing living well and acknowledging that this is not the case for everyone, and that even those who appear to be living well have bad days.
Increasing awareness of the benefits of…
Peer support – gain hope and see others going through similar things.
“as soon as I’d done that [got peer support] I instantly gained hope … that there was life still to live, that there was, that I still had a worth, that I still could contribute" - Eleanor
Visiting/communicating with people in the later stages of dementia – even if someone can no longer recall your name, they get a sense of wellbeing from having talked with you. People remember how you make them feel.
Dementia friendly communities in helping people to feel like they can continue to be part of communities and reducing stigma around dementia .
Media coverage of people with real life perspectives…
Too much media coverage which doesn’t include the voices of people impacted by dementia.
Representation of people from non-white ethnicities and those from the LGBTQ community as they can often have different experiences with dementia – differing cultural norms and additional obstacles.
"we need to get away from a single stereotype and reduce stigma within certain populations" - Emma
More coverage on…
Different types of dementia – a heavy focus on Alzheimer’s disease.
Symptoms of dementia – less focus on it all being about memory and being age-related.
How to support and interact with people with (later stage) dementia – charities are doing work on this but it isn’t sustained by media outlets.
People in the earlier stages of dementia in general - a focus on the end stages is over-represented.
Young onset dementia – still a low awareness of it.
"I hadn't heard of young onset until I got it in my 40s" - Anita
"I think the public... don't really, don't fully understand that even now that people in their fifties and sixties can get it" - Martin
The importance of planning ahead – more personal stories of how advanced care planning and having a power of attorney in place has helped real people impacted by dementia.
Following the journey of real people impacted by dementia over time in a series of articles or documentaries.
I hope that this blog has detailed just some of the things of importance that we discussed in our focus groups. Although it was recognised that the media has made some progress in its reporting and terminology, there is still a lot the media at large can do to improve the positivity of reporting around dementia in order to wave a firm goodbye to doom and gloom!
All that remains for me to do is to express my thanks to those who were part of the focus groups. Thank you so much for sharing your experiences and views.