• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Panorama programme tonight

susy

Registered User
Jul 29, 2013
801
North East
There is a programme about dementia tonight. The sufferer is a man aged about 55. The whole family is involved in the programme. Wife and daughter.
I should be an interesting watch. I was cross at first as this chap obviously is aware and accepts his diagnosis, however when I thought about it I came to the realisation that if he didn't accept his diagnosis they could never have made the programme.
Should be an interesting watch. It seems they are trying at least to make an honest view about this disease.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
This is the kind of programme I`m more likely to watch.

I think I could learn more from a family actually living with dementia than from people who don`t , but think they are justified in idealising it.
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
I had the same thoughts as you susy when they showed the clips on 'Breakfast' just now but as you say it would be impossible to show a person who didn't accept their diagnosis. Also, if you just show one example of a PWD on a programme like this we're all probably going to be thinking that the circumstances are very different from ours.

I might well watch it.
 

Beate

Registered User
May 21, 2014
11,841
London
People will never be happy. If it's a nice chap with awareness, they will say it's not realistic, if it's all doom and gloom and certain death it's too much either. We just have to accept that there are all sorts of versions of this disease and that there are articulate, insightful PWDs as well. Some of them are on this board!
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
I too saw clips of the program on breakfast TV this morning. The man Chris is 55 years old and all of his family are going to be included, teenage children and his wife. In one clip his wife talks about the respite she needs but gets very upset when she admits that she doesn't want him to go in case she feels that she can't have him back home afterwards - it bought a tear to my eye. I'm going to watch it.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,367
Bristol
I too saw clips of the program on breakfast TV this morning. The man Chris is 55 years old and all of his family are going to be included, teenage children and his wife. In one clip his wife talks about the respite she needs but gets very upset when she admits that she doesn't want him to go in case she feels that she can't have him back home afterwards - it bought a tear to my eye. I'm going to watch it.
I know how the woman feels. Sounds like it may be worth a look.
 

jochrisbryan

Registered User
Jun 10, 2008
21
I must watch it, I feel bittersweet about the fact it is a person who knows they have it, but as said how would they interview a PWD who was not aware? However I would like to see a show with a person similar to my situation, again it may be a question of not having consent as the PWD has not the capacity to understand they will be on film??
I have been living with this disease from a carer for 9 years, full time every day for 4 years now and I have seen some real changes, just by friends being aware from shows and articles. Even family members of mine, do not accept it for what it is and any insight from any show may be good. Panorama is not my favorite platform for it, but hoping it encourages more discussion.
There are so many variants of this disease as Beate said, this man could be like somebody I will know or even me in the future.
 

Chemmy

Registered User
Nov 7, 2011
7,592
Yorkshire
I wonder how many of us, right now, would be prepared to sign up to being the subject of a documentary in the future if we ended up with dementia and for the indignities of our daily life to be shown on national television 'warts and all.'

I'd have to think long and hard about that.
 

beverrino

Registered User
Jan 12, 2015
1,111
I wonder how many of us, right now, would be prepared to sign up to being the subject of a documentary in the future if we ended up with dementia and for the indignities of our daily life to be shown on national television 'warts and all.'

I'd have to think long and hard about that.
that's a very good point! I plan to watch it, and thank you Susy, I hadn't seen it was on.
 

jochrisbryan

Registered User
Jun 10, 2008
21
I wonder how many of us, right now, would be prepared to sign up to being the subject of a documentary in the future if we ended up with dementia and for the indignities of our daily life to be shown on national television 'warts and all.'

I'd have to think long and hard about that.


Chemmy, one day a brave person will sign up to have it all seen as it happens, but that programme ' the bad bits' will scare the living daylights out of viewers.
 

cragmaid

Registered User
Oct 18, 2010
7,942
North East England
I've just watched the trailer. I think it will be well done...but.... sadly,at the end of the day , it is still "just" one person with Dementia.
The fact that Chris is still aware is useful from the idea of promoting the fact that Dementia is not all about little old ladies sitting in a chair reminiscing, or old men waving their sticks and shouting, or residential homes being bleak places where cruel acts happen, however showing the other side....the cruel or lonely or vicious side......would be much more difficult to show, given that the sufferer could not give informed consent.
No two Dementia families are the same, Chris' family appear to be working together, let us all hope that they can influence the ignorant or invisible.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
I wonder how many of us, right now, would be prepared to sign up to being the subject of a documentary in the future if we ended up with dementia and for the indignities of our daily life to be shown on national television 'warts and all.'

I'd have to think long and hard about that.
The more people are open about dementia, the more ignorance and stigma will be dispelled.

It`s been hidden behind closed doors for too long and been seen as a mental illness because of a weakness of character, rather than the tragic illness it is, not influenced by any failing in life style, not subject to any class or level of intelligence.

We now know that is as far from the truth as can be.

We don`t need to see people accepting personal care to get the message of dementia across but we do need to show it warts and all.

I`d hold up my hand and my head if it helped get rid of ignorance.
 

Lawson58

Registered User
Aug 1, 2014
1,992
Victoria, Australia
Louis Theroux made a good documentary in the USA about dementia, showing PWD in a variety of settings - at home, residential care - and at different levels of progression. It seemed to me that permission for recording the footage came from relatives as I don't think any of the people appearing in the documentary would have had the capacity to do so.

It was not too brutal in its approach but that is not Louis' style. It did show clearly though a lot of the problems we all know about - memory loss, confusion, the denial, the care required etc. and included an early onset patient as well as older people. The program was as much about the carers as well as the PWD and I thought that it was quite effective. It was ages ago that I saw it and maybe I would think differently if I saw it now and I don't know if it is available online anywhere.
 

Mulberry50

Registered User
Feb 5, 2015
10
Maidenhead, Berks
Let sufferer see it?

I'm planning to record the programme but would any opinions as to whether my OH who suffers from Early Onset should watch it or not..
Thoughts?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,367
Bristol
I'm planning to record the programme but would any opinions as to whether my OH who suffers from Early Onset should watch it or not..
Thoughts?
After saying I might watch it I did wonder if my OH who has Vascular D should watch it too. Might be best to record it for a time when our OHs are sleeping.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,676
England
I'm planning to record the programme but would any opinions as to whether my OH who suffers from Early Onset should watch it or not..
Thoughts?
I would record it, watch it and then decide whether it would be suitable for your OH to watch.

No two people with dementia are the same and only you know how much your husband would cope with the recorded programme once you know the contents.
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
After seeing Chris & his family being interviewed on TV this morning and them all being very happy and positive about the whole filming thing my inclination would be to say yes, however given the Panorama web page does state that Chris has chosen a care home and his wife does talk movingly about her fears perhaps it would be best to record it, watch it yourself and then decide.
 

Mulberry50

Registered User
Feb 5, 2015
10
Maidenhead, Berks
Thanks for your feed back, it is much appreciated. Will plan to record it tonight & watch it without my OH and then decide.
As a general point, a programme like this that explains/educates people about dementia is good. I suspect that most of us were very ignorant of the details of the disease until someone in our family was diagnosed. So anything that helps people realise what we have to go through as carers is very welcome.
 

Zana

Registered User
May 12, 2016
185
At long last a programme about dementia that features someone under 70..

Its really hard when you or a loved one who is youger has the illness because people still intend to think of this as an old peoples disease. Even at a chat group for young people who care for a family member /partner with dementia that I somtimes go to the average age is 70+ and they are considered young!


The issues affecting younger sufferers and their families can be much different than those affecting anyone past retirement age.