How is dementia portrayed in the media?

[HarrietD]

Hi everyone,

Alzheimer’s Society is interested in your views about how dementia is portrayed in the media. This includes how the condition is represented in print/online, radio, TV, the arts and popular culture (theatre, cinema, literature).

The results of this survey will be used to inform the vital work the charity is doing around changing the discourse, narrative and portrayal of dementia. You can fill in the survey by clicking the link below.

Thanks

>Take part in the survey<
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[Grannie G]

I completed the survey but found it confusing.

 

[HarrietD]

Thanks @Grannie G for taking the time to fill it in - sorry to hear you found it confusing though I'll pass on your feedback to the team who's collecting the results. Was there anything specific that you found confusing?

 

[love.dad.but..]

I completed the survey but found I could only best describe my thoughts in a brief 'any other box'. Some of the answer options were limiting I thought.

 

[HarrietD]

Thanks for your feedback @love.dad.but.. and for completing it. I'll pass this on too.

 

[Grannie G]

Thanks @HarrietD

The survey begins by asking our connection with dementia, eg. carer, friend or person with dementia.

All or most of the questions seem to be asking about personal experience in the first person.

I`d need to go though it again to identify specific points.

 

[Canadian Joanne]

I agree with @Grannie G the questions mostly seemed to be geared to a person with dementia. I think there were missed opportunities.

 

[maryjoan]

I felt the survey was only touching the edges of dementia. The media simply NEVER tell it as it really is, as it would terrify the population if they knew and the people with dementia would become the new lepers in society. Do not wrap it up - this is the vilest of diseases and drags the whole family to a depth that they never, ever thought they would reach. Those caring at home for someone are subject to the most heart rending emotional roller coaster - there is no such thing as 'living well' with dementia, so why pretend there is??? I have read 1000's of posts on TP, and the heartache there is completely awful.

 

[DennyD]

I echo some of maryjoan's concerns. I felt it was a survey with questions that will lead to a biased outcome. I fear it will confirm the misconception that the media believes it is portraying a message that is reflective of living with and caring for dementia. Sadly it is not.

 

[Coulddobetter]

I agree, a missed opportunity here. Not sure what the team will glean from the results. In terms of popular culture/media, representations of people 'living with dementia' have been risible - I'm thinking here of a character in Eastenders' in recent years, and the storyline in Coronation Street about Rita who was showing some symptoms of dementia, but as it turned out was not suffering from dementia in the end. At the other extreme, celebrities who go public with their diagnosis, helpful to an extent, but nothing in between really, about how dementia affects the many thousands of dementia sufferers and their families.

 

[canary]

I tried taking the survey, but had to stop because i felt that the words I was being offered did not express how I felt.

 

[love.dad.but..]

I tried taking the survey, but had to stop because i felt that the words I was being offered did not express how I felt.

Yes...I felt the same..tried to describe instead at the end in 'any other' box

 

[Beate]

I didn't finish this survey as I couldn't identify with the questions, especially question 8. It was constantly talking about negative or positive portrayal and how a negative portrayal affected me. How about a truthful portrayal? It wouldn't be pretty, but dementia isn't pretty. I'm afraid this survey seems biased and just wants to reinforce the notion of wanting to see a positive portrayal of people living well, and for most people that is so wide off the mark that it's actually insulting.

 

[LynneMcV]

I did complete the survey but I have to admit that I felt a bit ostracised from the very start when asked if I was: living with dementia; a carer; have a friend/relative/colleague with dementia or 'none of the above'

Having been recently bereaved of the person I cared for, I felt that I could no longer tick the 'carer' box (despite the 6 years of caring I have just come through) - while the 'none of the above' option made me feel like any input I might have would make me look like I was commenting from a position of no particular understanding.

In the end I chose to complete it from a carer's point of view - but in future perhaps such surveys could allow for former carers too?

 

[Spamar]

As an ex carer, I completely agree with you, Lynne.

 

[Beate]

I ticked carer as it's still closer to ex carer than any of the other options, but I agree - it needs to be included.

 

[Georgina63]

I have completed the survey but also found it rather poorly designed and only skimming the surface (some questions require a not applicable\don't know option) and the title of the survey is misleading - 'The Media' is so broad a title. This survey seemed to be biased towards soaps, but there are so many ways in which people are receiving confusing messages about dementia, not least the references to 'Memory' in a lot of current AS posts on Facebook (eg Memory Walks). As others have mentioned, the reality of dementia is so much more than is currently portrayed in most places, and can be\is, pretty grim for the person with dementia and those close to them. Georgina

 

[Theresalwaystomorrow]

I agree with all previous post, so much more could of been put into this survey.
Also regarding soaps ::
This disease
steels your past
Steels your future
Steels your money
None of this is portrayed in any soaps!

 

[Selinacroft]

I agree with comments asa former carer that the options of participants should have been thought through a little better. It is former carers, after all that can offer opions having seen the whole impact from start to finish and beyond. I just completed it putting as much as possible in the end box, the bits no one shows or discusses by and large- except on here of course.

 

[Wifenotcarer]

Magazines and Sunday Supplements regularly publish articles titled 'Living Well with Dementia' or even worse '10 ways to ensure you do not develop Dementia'. Those of us with personal or close experience of Dementia, are only too well aware of the many different paths that the progress of the disease takes and how the relationships and personalities of those involved as PWD or Carer ensure that each 'case' is different. I have never seen anyone on TP saying that they know what caused their loved one's dementia or that the wished that their LO had taken more exercise, read more books, etc. etc. The general public are being given the impression that there is now medication (Donepezil) which will magically relieve the symptoms and that there is readily available, affordable provision e.g. care homes, day centres where PWD can be placed when their condition worsens. There has never been a long term character in a soap or drama series who has portrayed the relentless, never ending reality of Living with Dementia, instead we get the aged Priest or Uncle who sits and snoozes, waking up at inopportune moments to make rude remarks. We never see them being toileted, bathed, spoonfed, or taking an hour to get dressed and everyone goes about their daily business or off to the pub leaving them Home Alone, with no serious consequences.

Like other posters above, I am disappointed, indeed angered, by this survey promoted by AS (who should know better). I am seriously thinking of starting a non-party Political but Campaigning thread on TP where we could get together to share thoughts and suggestions/examples of how things (bureaucracy, policies, etc.) could be changed to make our lives a little easier. I know how hard it is to add something else to our list of 'things to do' but if we, the family carers do not make our voices heard, then it seems that no one else will speak up for us.