How people with dementia are presented by TV

[stanleypj]

Just watched a segment on BBC Breakfast about the need for quicker diagnosis of dementia. They interviewed a person living with dementia and her partner. As ever, the person living with dementia was pretty articulate and expressed some of the problems she had very well.

There's nothing at all wrong with the viewer being shown that many people, particularly newly-diagnosed people, can for much of the time operate perfectly normally.

But wouldn't it be more informative to sometimes, just sometimes, show someone who does really struggle with the most basic activities of day-to-day living trying to explain the issues? If my wife, for example, were being interviewed she might well respond to a question with a long and apparently complicated answer that would have all the intonations of normal conversation but would actually contain very few recognisable words.

There's a balance to be struck isn't there?

 

[Ann Mac]

Its the same with images, I think - I see posters featuring a reference to dementia, and invariably, its an image of a smiling or peaceful looking elderly person, with either a supposed family member or some uniformed nursing angel gazing lovingly down on the person - for so many of us, the smiles and the peace are not what dementia is, and not what it brings to our loved ones. And images like this ignore the fact that not every person with dementia is elderly.

I sometimes think that if the truth was shown, in images and in the media in general, then perhaps the chances of more funds for research might be improved !

 

[Rageddy Anne]

Well, Kassy, at least you told them!

 

[Onlyme]

Its the same with images, I think - I see posters featuring a reference to dementia, and invariably, its an image of a smiling or peaceful looking elderly person, with either a supposed family member or some uniformed nursing angel gazing lovingly down on the person - for so many of us, the smiles and the peace are not what dementia is, and not what it brings to our loved ones. And images like this ignore the fact that not every person with dementia is elderly.

I sometimes think that if the truth was shown, in images and in the media in general, then perhaps the chances of more funds for research might be improved !

Later this morning there was a programme on radio 4 about chess and we were told it was good for the brain and would ward off dementia!

 

[TinaT]

Like Kassy, I was invited to speak at a retraining session at my Mental Health Trust about the nine months my husband had spent on the local male only assessment unit.
There was a stunned silence after I told them just a few of the major incidents I and my husband had either witnessed or suffered whilst he was on that ward.

Many of the staff from the same ward were at the retraining session were there and judging from the few questions I was asked afterwards, it came as a revelation which was much needed.

I'm afraid the stark truth of the consequences for some of the more severe dementia sufferers and carers would not be stomached by the vast majority of our population. Too much for them to take in so they are fobbed off with the pleasant but forgetful older person myth which is more palatable.

xxTinaT

 

[jimbo 111]

The full horror of Alzheimer’s and its variants will never be realised until someone has the guts to present it as it is to so many people, carers , and those suffering with the disease
Daily on TP we read of the horrible experiences , both physical and mental that carers young and old have themselves to suffer in trying to cope with the decline of loved ones as they slip further into the oblivion of both body and mind
As many posters on this thread have commented most TV documentaries and programmes skate around the true picture
They show sanitised pictures , give statistics of the problems but never giving us a true picture facing us with the inexorable progress of the disease
We allow ourselves to be inundated with horror stories , murders etc , we see regularly scenes of blood and guts and they are accepted as modern entertainment .and yet we seem to shy away from showing the real picture of Alzheimer’s/dementia
I have memories of my own experience looking after my wife with AD and other illnesses
I was spared the full horror of a loss in mental capacity , but witnessed with a broken heart the gradual decline of my hardworking , house-proud wonderful wife into a shell , mentally unable to cope or understand what was happening to her ,
The look of bewilderment on her face , the dull look in her eyes that showed most things were beyond her comprehension
Unable to wash and dress herself ,not being able to eat and most heart breaking , the loss of dignity , so precious to women
The sight of a once proud woman standing bewildered in faecal matter , trying desperately to clear it up and only succeeding to make it worse
The desperate cries when on some occasions she knew that things were wrong
When someone has the guts to show the full horrors of this dreadful disease and
show the public the inevitable decline of those suffering with Alzheimer’s
Then and only then will the public wake up to the harsh facts of life that there is a strong possibility that they are looking at the future for themselves or their loved ones
So instead of the timid programmes we now see , Why wont the government , programme makers , and societies like the Alzheimer’s Society
produce documentaries showing the reality of dementia
It would probably shock the public , but for those people like most on TP it would only be a confirmation and recognition of their daily suffering
jimbo 111

 

[garnuft]

I think the probable reason we don't see anyone suffering from cognitive impairment is because it would be an intrusion on their right to privacy.

Someone would have to have the capacity to agree to be filmed and have it broadcast.

Even then there could be contentious issues if some members of a family objected or it was felt that if the person had known how much their dignity could be compromised then they would not have agreed in the first place.

It's a conundrum.

 

[Oxy]

A series on dementia in various stages and types should be made available to banish misconceptions and to show variance in all its forms. Maybe quotes from TP could be include BUT to overcome privacy, loss of dignity, actors could be used. They seem to be able to manage all sorts of special effects, why not for this important issue. Maybe with realisation of what could affect anyone at any time, there would be more donations to the main charities for the dementias.
Also I have noticed 2 charity shops for cancer within 100 m of one another. Cats and dogs have shops but I've never seen one for Alzheimers Soc or Dementia UK. Might also help raise revenue for research and facilities for a range of diseases that rob so many of so much.

 

[jimbo 111]

I think the probable reason we don't see anyone suffering from cognitive impairment is because it would be an intrusion on their right to privacy.

Someone would have to have the capacity to agree to be filmed and have it broadcast.

Even then there could be contentious issues if some members of a family objected or it was felt that if the person had known how much their dignity could be compromised then they would not have agreed in the first place.

It's a conundrum.

I can understand what you are saying garnuft , but I believe that people like yourself who are striving to make the public aware of the horrible facts are not best served by those who shy away from telling it as it is and they use all the excuses they can instead of finding those who are prepared to enlighten the pubic
I wonder how many people on TP would be prepared to allow cameras to show some aspects of how Alzheimer's can really affect their loved ones
jimbo

 

[2jays]

I remember watching this about 2 years ago on BBC2

It's in America, and is a bit sanitised .... And you need an hour or so to watch it all

http://www.dailymotion.com/video/xs16mn_extreme-love-dementia_shortfilms






Sent from my iPhone using Talking Point

 

[handyjack]

I think the probable reason we don't see anyone suffering from cognitive impairment is because it would be an intrusion on their right to privacy.

Someone would have to have the capacity to agree to be filmed and have it broadcast.

You've probably hit the nail right on the head garnuft. There's the Mental Capacity Act to consider too. As you point out, if they are deemed to lack the capacity to make an informed decision, then the media's hands are tied (although there might well be some film out there from years ago (probably used as training/research material within the mental health sector)

Edit,, found a short film documentary on youtube, showing some of the reality of Alzheimers. Quite touching.

http://www.youtube.com/watch?v=tzFNTtHyTzo

 

[di65]

It is no different here in New Zealand. We have an advertisement that runs from time to time that shows, amongst other images, a car in the middle of a busy intersection, with no driver, and a toaster with a burning wallet popping up. It says that if you recognise these signs, you or a loved one may be suffering the early stages of Alzheimers or Dementia!!!!
Early?? My God, if I saw these signs with anyone I would be more than mildly alarmed.

 

[Ann Mac]

I think the probable reason we don't see anyone suffering from cognitive impairment is because it would be an intrusion on their right to privacy.

Someone would have to have the capacity to agree to be filmed and have it broadcast.

Even then there could be contentious issues if some members of a family objected or it was felt that if the person had known how much their dignity could be compromised then they would not have agreed in the first place.

It's a conundrum.

You're right - but, when the posters are produced showing the gentle smiling images of the frail person, that person will be a model - not an actual person with the illness, because as you say, the question of intrusion in to privacy arises.

So, what is the problem with models and actors being used to produce a more realistic representation, as Oxy says? Its not unheard of to see, even on documentary/news programmes, a piece of film where this happens and a disclaimer is shown at the beginning of the footage - its acceptable when dealing with some sensitive issues.

Jimbo, Over the last 12 months, I have taken 100's of images of my Mil - I very deliberately decided to photograph her with her grandchildren and son, because I had a (probably) daft idea that it would help if I could capture her with her family, when having good times, it might be something that would bring comfort later. But more than a few times now, especially over the last couple of months, I've got (sometimes inadvertantly) photographs where all the fear and confusion, and on a couple of occasions, the fury are clearly visible on her face - the pictures are heartbreaking, and uncomfortable to look at. My husband has actually said that he wishes there was some way to present some of these photographs as an exhibition to raise awareness. If there was a way of doing this, without compromising Mils privacy whilst she is still with us, I really would go for it !

 

[stanleypj]

Yes, of course actors could be used and this would be a whole lot better than no representation at all. The fact that they aren't used suggests that there's simply no appetite for giving an accurate portrayal of the problems dementia causes.

I don't think the issue of getting informed consent from someone who lacks capacity can be the reason, though I'm sure it would be used as a justification, for the absence on TV of real people with severe dementia symptoms.

I'm just watching a BBC Breakfast report about homes that cater for people with severe learning difficulties (amongst others) are scheduled to close. Lack of capacity was specifically mentioned and the film featured a woman who clearly had severe learning difficulties and was described in this way.

I'm sure that over the years, I have watched many similar clips.

So why do we not get a balanced view of what dementia does to a person?

I suspect that, until we do, the support for PWD and their carers won't improve.

 

[Pickles53]

Recently there has been a campaign where women who have had mastectomies were photographed to highlight misconceptions around breast cancer, specifically the idea that it's possible for everyone to have reconstruction surgery. I think we need something similar for dementia as before having personal experience of this illness I too thought that people 'just' got a bit forgetful, with no concept of what that actually meant in their lives and those of their family.

If the MCA means it would be an abuse of privacy, could not a relative with H&W LPA give permission? A recent BBC series 'Protecting our Parents' followed a number of elderly patients with dementia as well as other medical problems some of whom were specifically stated to have lost mental capacity. Someone must have given permission for the filming.

If not, actors portray every kind of horrific abuse/violence so why not this? Dustin Hoffman did it for autism in Rain Man and at the time I remember a lot of comments from families who had a relative with autism saying it was a very accurate portrayal.

 

[Padraig]

I would gladly display the videos pictures and medical reports of my late wife's and my journey along the Alzheimer's road. The problem I think is that the good bad and ugly scenes may make many feel guilty. As far as I'm concerned that's their problem and was their problem, when I decided to care for my wife in my own way 24/7, i.e. in sickness and health till death did us part. Just two of my photos: one: my care, two: in Nh care.

 

[benjie]

AD/VaD Portrayal

If I remember correctly this illness was portrayed in Coronation Street either last year or the year before. The actors were Elaine (?) and her fireman boyfriend and his wife (with dementia/Alzheimer's)

Benjie

 

[Oxy]

Padraig, thank you for sharing. It really portrays that your good care had such a profoundly good effect on your wife in every respect.
Thank you again. You were clearly the best husband she could have ever wished for.

 

[Lindy50]

Padraig, thank you for sharing. You really show the profoundly beneficial effect that good, real care can have

I also agree with Ann Mac. I have taken more photos than usual of mum lately....and some do have that awful confused, worried, even angry look that is instantly recognisable as being 'not mum as we know her'

 

[Padraig]

When I decided to remove my wife from the NH the disease had progressed further from the state she is in the photo. She was bedridden, on an inflatable mattress with many pressure sores and refused food.
Sure I was being advised against removing her. But as I was spending eight to nine hours a day with her, I figured I may as well spend the whole night with her in our own home.
The medical records which I've attached to the rear of my book states; 'He knows she is dying but will not accept help, even when his daughter thinks he does.' They even sent a palliative care nurse : but my response was :'thanks but no thanks'. It never occurred to the experts that the lack of proper oral hygiene plus laying for long periods resulted in severe constipation i. e. compaction. I'm no experts but I found the remedy to these and many other problems. So many of the problems I encountered with AD I found were interrelated and made up the jigsaw of a picture as a whole.
Thank God I never give, nor take advice, just relate my experiences. Had I had a conventional upbringing, no doubt I'd have sought advice and followed it 'with-in the box.' My whole life has been conducted outside the box.
It is said those who have a poor education, unhappy family life will not succeed in life. Well I've had little or no education. As for family, never knew parents of uttered the words Dad or Mum. A home? the first home I ever had was the one I made for my wife and family.
I'm still living life my way. Maybe some day I'll get the chance to show all the videos I made of our AD journey. Until then I'm hoping the free download of my book helps see the disease from a different perspective. Enjoy today, tomorrow may never come.