The Long Goodbye: our new advertising campaign
- Thread starter HarrietD
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Do we have such a political post as a dementia advocate in government? I’m guessing not but someone with access to represent the needs of what will be a huge section of society and how things can be changed….if money is given which is a huge if.
If I were a documentary maker perhaps I would give video cam to a group of families representing Alz, VD, Frontal lobe and see if they were able to be courageous to share their journey over a longitudinal period. No doubtedly harrowing but also capturing some joy.
@Neveradullday! has alluded to some of my experiences- I think my reflection is perhaps the surprise and joy i have found is that there is a person still very much disabled by late stage dementia but still there…..and able both to give and receive joy………I wondered if it was just our more fortunate journey with mum…..but I see it in everyone on mum’s floor. Each is a unique individual and still has a contribution to make - well they do to me anyway. How lovely I now find it that the Man Who Paces ( and can also be v aggressive) now greets me each day with a huge smile and a thumbs up 🥰🥰👍👍 That gives me an emotional boost and smile I am v thankful for. He is not just a PWD ….he is…well I can’t tell you his name but that’s who he is…..He is no doubt so very different from pre diagnosis but who they are now is still human, valuable and able to give to us. Perhaps this is a challenge to society’s attitude generally to the disabled, elderly and the very bottom - the elderly with dementia.
I guess for me it’s less emotional painful as I didnt know these guys before. Perhaps dementia homes need to encourage more community in …..in a gentle way the residents can cope with?? This homes sister home does that, but it’s felt it would be too difficult due to the stuff folk may witness …..I would challenge that if we want to widen awareness. To see someone be aggressive but dance 15 mins later with a carer is a positive thing in my mind….
There are a couple here late late stage ….my Granny got to that point…..that perhaps is where the constant give of antibiotics and ensure drinks needs to be rethought And allow nature to take its course. I guess 60/70 years ago such a position to be in would be rare.
If I were a documentary maker perhaps I would give video cam to a group of families representing Alz, VD, Frontal lobe and see if they were able to be courageous to share their journey over a longitudinal period. No doubtedly harrowing but also capturing some joy.
@Neveradullday! has alluded to some of my experiences- I think my reflection is perhaps the surprise and joy i have found is that there is a person still very much disabled by late stage dementia but still there…..and able both to give and receive joy………I wondered if it was just our more fortunate journey with mum…..but I see it in everyone on mum’s floor. Each is a unique individual and still has a contribution to make - well they do to me anyway. How lovely I now find it that the Man Who Paces ( and can also be v aggressive) now greets me each day with a huge smile and a thumbs up 🥰🥰👍👍 That gives me an emotional boost and smile I am v thankful for. He is not just a PWD ….he is…well I can’t tell you his name but that’s who he is…..He is no doubt so very different from pre diagnosis but who they are now is still human, valuable and able to give to us. Perhaps this is a challenge to society’s attitude generally to the disabled, elderly and the very bottom - the elderly with dementia.
I guess for me it’s less emotional painful as I didnt know these guys before. Perhaps dementia homes need to encourage more community in …..in a gentle way the residents can cope with?? This homes sister home does that, but it’s felt it would be too difficult due to the stuff folk may witness …..I would challenge that if we want to widen awareness. To see someone be aggressive but dance 15 mins later with a carer is a positive thing in my mind….
There are a couple here late late stage ….my Granny got to that point…..that perhaps is where the constant give of antibiotics and ensure drinks needs to be rethought And allow nature to take its course. I guess 60/70 years ago such a position to be in would be rare.
i agree with @canary and thank you for your post, enlightning as always. the only thing would be that different dementias dont get mentioned. its always alzheimers and that onset when other dementias present differently and are caused by different methods. i wish i had a £1 for every time ive had to explain the difference to medics and ss. if they get it wrong, what hope is there for the general public to understand that its not always about memory but so much more. i think it would be good if AS campaigned more for the other dementias as well.
thank you @canary for calling it dementia and not alzheimers. it tends to be forgotten so the carers tend to be forgotten or misunderstood.
end of rant.
thank you @canary for calling it dementia and not alzheimers. it tends to be forgotten so the carers tend to be forgotten or misunderstood.
end of rant.
Nope. We do however have a Minister for Common Sense.
Feels like we're living in a Terry Pratchet novel these days.
Unfortunately we do not have a dementia advocate. There is the minister for health and social care but they hardly advocate for the sick and vulnerable. I truly wish we could live in a society where the weak and vulnerable are well cared for and not taken advantage of. Where each pays into a system according to ability , that is free at the point of need. Idealistic I know
I may be going against the general consensus here but I found the Disneyesque representation very moving.
It was able to illustrate the loss, fear and terror that besets so many people with dementia in a way that couldn't be done with 'real' actors.
The empty expression and almost skeletal face that morphs into the person at the finale - it looked so akin to my husband's demeanour, especially during his last few weeks and hours, that I weep even to think of it.
But these ads aren't aimed at those who know. They have to engage with those who don't.
If this is what it takes to emphasise dementia isn't just forgetting names and putting slippers in the fridge then so be it.
It was able to illustrate the loss, fear and terror that besets so many people with dementia in a way that couldn't be done with 'real' actors.
The empty expression and almost skeletal face that morphs into the person at the finale - it looked so akin to my husband's demeanour, especially during his last few weeks and hours, that I weep even to think of it.
But these ads aren't aimed at those who know. They have to engage with those who don't.
If this is what it takes to emphasise dementia isn't just forgetting names and putting slippers in the fridge then so be it.
I think you have got a point and that is where the AS need to put effort. Get a dementia advocate or a ministerial post under the Health ministry and then there is an entry point to direct our experiences to.
Fourteen years ago a dementia tzar was appointed, after a few years of reports there is now silence.
A big ‘thank You’ @canary for this well thought out and honest piece. Outside of this forum I doubt many would read it all but for me it is important that we try to get it across. So, with your permission and anonymously of course, may I copy and post on FaceBook so my family and friends who just see the smiling happy face of Pauline when they occasionally visit and arn’t interesting in even to talking about the constant, which is my role and a difficult one too?
Alzheimers Research have an interesting (scary?) dementia statistics website.
dementiastatistics.org
Over the weekend I tried to read up on what the government strategies are for dementia support and couldn't find diddly. There's plenty of promises, pledges and 'word salads' about funding research but pretty much nothing from either the tories or labour about supporting carers and people living with dementia now. When you look at the AR statistics it highlights not just how significant the issue is now but how much more prevalent it's going to get. It strikes me that the government approach is to ignore it until they absolutely don't have to and then no doubt put something in place which will cost two or three times more than if they'd addressed it earlier. Their attitude is, as always, just get through the next four years.
Statistics about dementia - Dementia Statistics Hub
In this section, you will find information on the number of people with dementia and the impact on people and the economy in the UK and globally.
dementiastatistics.org
Over the weekend I tried to read up on what the government strategies are for dementia support and couldn't find diddly. There's plenty of promises, pledges and 'word salads' about funding research but pretty much nothing from either the tories or labour about supporting carers and people living with dementia now. When you look at the AR statistics it highlights not just how significant the issue is now but how much more prevalent it's going to get. It strikes me that the government approach is to ignore it until they absolutely don't have to and then no doubt put something in place which will cost two or three times more than if they'd addressed it earlier. Their attitude is, as always, just get through the next four years.
Thanks for looking into it @Dave63
i think I have a vague memory of a dementia tzar. I shall make a note when the election is announced to email each candidate and ask them their dementia and carers strategy and how they intend to fund it.
I remain shocked but not surprised at how reactive and not preventative our health and social care systems are. prevention is much better and cheaper all round but the powers that be don’t seem to get it or be prepared to implement strategies.
There is a tummy bug going round mum’s home - carers are coming to work I’ll because they are on minimum wage and get no sick pay……and to rub their noses in it they caught the bug by clearing up after poorly residents….and it’s only me who seems to be handwashing thoroughly 🤷♀️🤷♀️🤷♀️
i think I have a vague memory of a dementia tzar. I shall make a note when the election is announced to email each candidate and ask them their dementia and carers strategy and how they intend to fund it.
I remain shocked but not surprised at how reactive and not preventative our health and social care systems are. prevention is much better and cheaper all round but the powers that be don’t seem to get it or be prepared to implement strategies.
There is a tummy bug going round mum’s home - carers are coming to work I’ll because they are on minimum wage and get no sick pay……and to rub their noses in it they caught the bug by clearing up after poorly residents….and it’s only me who seems to be handwashing thoroughly 🤷♀️🤷♀️🤷♀️
One of my hats is as a local politician, and I’ll be quizzing the prospective parliamentary candidates for our local seat about their thoughts on social care when the election is finally announced and pushing the need to address the issue with my party.
Hi @Sarasa you go for it. I think the only way we will put this on the map is raising it whenever we can.
Hi @canary ,you are spot on with everything you say. Yes I strongly believe that given the right tools people can have a good period of life with dementia. This needs funding to help with dementia cafe's, dementia day centres and also community transport.
Carer burnout and carer ill health needs to be addressed so that companian carers are the norm for the carer gets a break.
Finally there needs to be honesty about the late stages, the pain of it for the family,the distress of the carer and the fact at this appalling part of your life you are tied up trying to find money or the Nursing home. My brother sadly died of cancer but the support,help and palliative care placement was straightforward. I contrasted this to his wife's situation who has dementia and it is stark.
You can live well with dementia in the early stages but this is really dependent on living with a partner or family member or having a family member living very close by with plenty of time on his/her hands. I supported my mother and an elderly friend (at different times) both of whom lived alone and both had a poor quality of life even in the early stages as they were on their own for so much of the time. They became housebound and stopped doing the things they used to do and friends drifted away. Not being able to drive any more and the loss of ability to plan things or to occupy themselves with very much at home were a huge problem. At the same time, neither seemed ready for day care and would not have enjoyed it if it had involved bingo and pop music. Activities such as Singing for the Brain require someone to take the person or see him/her onto and off the transport to the venue (assuming that there is any) and are pretty much inaccessible if the person lives alone and there's no family member close by.
People with dementia need a lot of support even in the early stages and many people don't have that support.
People with dementia need a lot of support even in the early stages and many people don't have that support.
I have to say... It doesn't resonate with me at all. I don't think those with the disease feel this way at all (mostly they don't realize the declines) and as carers it may be a 'long goodbye' but this doesn't even touch on the heart-wrenching ups and downs we go through hour to hour, day to day, week to week, month to month and year to year.
I think a more effective approach may be to show those moments when carers struggle one-on-one with exhausting hallucinations, delusions, cleaning, eating and other basic tasks, just to help their loved ones present in public as 'functioning normally' interspersed with the very true flickering moments of trust, love & gratitude that also come along the way.
Something that emphasizes not their death, but the very real, long struggle to remain in the same worlds as each other, and the time, money & energy it takes to just keep going, and see that smile once more, knowing that in our hearts we are doing all we can to make them feel safe & loved until their last breath.
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