Alzheimer's Society Dementia Advert

I think the advert is so accurate, it brought tears to my eyes, and I hope it gets shown to make people think and be aware and to hopefully donate. Dementia is a horrible cruel disease. My mum had vascular dementia and once she had the 'official' diagnosis I knew things were going to get bad. They did and all the things that are taken away do happen. The loss of the person whilst still living is so hard. My mum forgot her husband, and I remember her sitting so lost in her chair asking if she was married, then who to. I became her cousin although as she was dying she did recognise me and tell me that I was a good daughter. I travelled that horrible journey with her, and saw her battles. I'm not saying any more as it is still upsetting even though she died 7 years ago. I still support the Alzheimer's Society and I hope the advert will encourage many others to donate something even if it is small.

My father passed away after several years with mixed dementia, Vascular and Alzheimer’s. Every patient, and their family/carers, experiences a different path along this dreadful road called Dementia. As several have already said, it is not a case of losing memories, it is much worse than that. If the writer of the Opinion piece Sonia had experience of living with someone with dementia I’m sure she would be of a different opinion. They say, Only write about the things you know about, clearly not the case here. The body can be robbed of the ability to speak, swallow, walk, stand etc etc, so many physical things with this dreadful disease. Hard hitting adverts like this are needed to raise awareness which equals donations to funding the work underway to help patients and their carers through such a very difficult journey.

I have only just seen the advert at the centre of the furore and am baffled by those wanting it withdrawn. Given how many of us are living longer and will fall victim to some form of dementia I would have thought the more we are persuaded to fund research and possible treatment the better. DH had Louwy dementia with Parkinson’s and to say he died multiple little deaths is no exaggeration as the clever, funny, loving man disappeared and the anxious husk that remained knew that life was no longer worth living. Everyone’s version of dementia is different but is ultimately tragic - why pretend otherwise?

The advert brings much needed attention to this disease. Hopefully resulting in more awareness, funding and treatment.

Mum was diagnosed last November after becoming a bit forgetful and repetitive, but was living independently.

In January I was called to her house as the neighbours had called the police due to her shouting help through the door. Mum was taken to hospital and diagnosed with delirium on top of dementia.

Mum is now in a care home. She has totally lost capacity although no one can tell us the reason for the devastating change. Mum is there physically but not as we remember her. So very sad.

My mother and my aunt had dementia. I feel as if I lost my mother many times when caring for her over 8 years. I used to try so hard to think of ways to keep her involved and active and we did have special moments in that time. However the advert is very realistic because it is a terrible disease and a long slow decline. I just felt so sorry for Mum who was an intelligent, bright, capable woman. These memories of her are hard to hold on to when I think of her in her last days. I hope the advert leads to increased funding for research.

A friend of mine who has been living well with Alzheimer's and has contributed a lot to various groups in Scotland does not agree with this advert at all, his artwork from an Alzheimer's conference adorns government reports, he draws with an urban sketchers' group every week and did give feedback, with others before the advert was released, all of it ignored. Alzheimer's can be a terrible thing but there is a lot that can be done to live a fulfilling life for as long as possible. Below is my friend's letter in the Guardian

Letters
Dementia is not a living death – I’m very much alive
Willy Gilder thinks the latest Alzheimer’s Society ad campaign is a mistake and would like to see it withdrawn

The chief executive of the Alzheimer’s Society has sought to justify its new ad campaign, The Long Goodbye, by saying that it “tells the unvarnished truth about the devastation caused by dementia”. It isn’t a truth that I, as a person with Alzheimer’s disease, recognise. The ad shows a family mourning their mum, and saying that she died several times in advance of her actual death as she realised that she could no longer cook a family meal, or take part in social activities.

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This idea of dementia being a “living death” reinforces the most negative stereotypes of my condition, and contravenes guidance for journalists drawn up by the society itself six years ago. I share a dementia diagnosis with the star of Die Hard, Bruce Willis. I prefer to try to Live Well, or as well as I am able. It dismays me that the country’s leading dementia charity seems to want to reinforce the stigma surrounding brain disease.

I recognise, of course, that having a diagnosis can be distressing for an individual – and that family members and carers can find life difficult, which is why we need to concentrate on the good news that many people living with dementia are actively involved in developing better services and support. The Meeting Centres network in Scotland is one such example. I call on the Alzheimer’s Society to admit that its ad was a mistake, and withdraw it.
Willy Gilder
Edinburgh

Commenting as the daughter of a Mum with Vascular Dementia/Alzheimers I can see how this advert would draw attention to those unaware of how truly awful this disease is for both the person with it and their carer/s, especially as Alzheimers UK website simply describes it as "Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life". However, for anyone in the first stages or indeed those where it is more progressed but they still have lucid moments the advert must be distressing. A very difficult balance between educating those who think dementia is simply getting a bit forgetful and not upsetting someone who has it. No sure if someone has already mentioned this but it is estimated that 1 in 3 of us will succumb to this disease: this advert may make people stop and think - could it be me?

kittylester

Obviously, it's very different l, but a diagnosis now doesn't mean that someone immediately becomes bedridden etc.

Early diagnosis and awareness mean that people can have years of fairly normal and active life. The worry is that advert could deter people from going to the gp.

It isn't just me who thinks this.

The people who run the Dementia walking group, gardening group, choir groups, the Memories in sheds, the social groups, the Memory Cafes, the Cognitive stimulation groups, the carer learning groups etc may as well give up and stop wasting their energy.

I doubt that anyone reading this column believes that someone with dementia immediately becomes bedridden. In fact the majority of the posts are talking about the period when the person starts to get worse.

Things have changed since my Mother was diagnosed with Alzheimers many years ago. In fact she was assessed at UCL where she stayed for 2 weeks. She mentioned to me that she had been on a stage in front of an audience where she was asked questions. They actually wanted to keep her for longer but I refused, given that they had not told us what they doing, or asked permission.

She was obviously an early onset sufferer so I suppose that she played a part in the research into the disease.

There have been many strides in the research into this horrible illness and as has been mentioned there is now medication that can help prolong the early stages. However, although it is different for every person, to deny what happens in the final stages is wrong.

My Father died of cancer when he was 55. My Mother had been diagnosed with pre senile dementia before he died. He knew there was something going wrong with her, but I doubt that he knew what it was. I've always been grateful that he did not live to see her when her health deteriorated.

Soniah

A friend of mine who has been living well with Alzheimer's and has contributed a lot to various groups in Scotland does not agree with this advert at all, his artwork from an Alzheimer's conference adorns government reports, he draws with an urban sketchers' group every week and did give feedback, with others before the advert was released, all of it ignored. Alzheimer's can be a terrible thing but there is a lot that can be done to live a fulfilling life for as long as possible. Below is my friend's letter in the Guardian

Letters
Dementia is not a living death – I’m very much alive
Willy Gilder thinks the latest Alzheimer’s Society ad campaign is a mistake and would like to see it withdrawn

The chief executive of the Alzheimer’s Society has sought to justify its new ad campaign, The Long Goodbye, by saying that it “tells the unvarnished truth about the devastation caused by dementia”. It isn’t a truth that I, as a person with Alzheimer’s disease, recognise. The ad shows a family mourning their mum, and saying that she died several times in advance of her actual death as she realised that she could no longer cook a family meal, or take part in social activities.

Scroll for More
This idea of dementia being a “living death” reinforces the most negative stereotypes of my condition, and contravenes guidance for journalists drawn up by the society itself six years ago. I share a dementia diagnosis with the star of Die Hard, Bruce Willis. I prefer to try to Live Well, or as well as I am able. It dismays me that the country’s leading dementia charity seems to want to reinforce the stigma surrounding brain disease.

I recognise, of course, that having a diagnosis can be distressing for an individual – and that family members and carers can find life difficult, which is why we need to concentrate on the good news that many people living with dementia are actively involved in developing better services and support. The Meeting Centres network in Scotland is one such example. I call on the Alzheimer’s Society to admit that its ad was a mistake, and withdraw it.
Willy Gilder
Edinburgh

Thank you for posting this.

Exactly what I was trying to say.

Everybody with or without Alzheimer's would hope to live as well as they can. However, this, as we all know, is a progressive disease, one will almost certainly will not end well.

When my Mother was diagnosed with it there was a theory that it was caused by aluminum because of the use of kettles and saucepans made of that material.There was also a theory that it could be caused by brain damage. That could have been the reason for my Mother's illness because she had encephalitis in her early thirties and had fluid drawn off her brain.

Reading Soniah's post above I suspect that her friend has not yet reached the stage that many of us have been describing on here.

Indeed, and let's not forget that that is only one person's experience of living with dementia. Many of us, as is clear from this thread, have vastly different experiences. And many charity adverts are hard hitting - whether they are related to health issues (such as cancer, MND etc) or things like wars, famine, water aid or so on.

@BlueBelle I am 59 years old. Both my maternal grandmother and mother had dementia, and both died at 77. My beloved mum had early onset - mid 60's. The dementia progressed slowly. She lost everything. Her dignity. Her recognition of her family. Her ability to walk. To swallow. She was like a skeleton at the end, as was my grandmother. I would not wish this disease on my worst enemy. And I can't count how many nights I've laid awake terrified for myself; as I know that my memory is slowly failing me now, in small ways. I PRAY for a proper cure before I get too bad. I would rather die than end up like my poor mum. But.. I don't let it take over my life. I live my life to the fullest and I am a happy person. I am thankful that I am still healthy and fit. And I live in hope - not despair.

Well what an advert. It has certainly prompted conversations that may never have been had. Job done I would say. Dementia is a condition raising every emotion known to man for those caring for them and a deterioration in mind and body for those with it. Alongside those of course come a whole gambit of problems for all concerned. Physically and emotionally. But also it can take you on a journey full of love and laughter ours at times was full of joy. Music was our saviour and long after Dad lost the ability to sing along or talk or feed himself or be independent in the bathroom he would tap his fingers to the tunes. The mind still holds many mysteries but I pray that I don't develop it and my children are spared of gradually losing the me that I am now. It breaks my heart to witness other family and friends going through it right now.

I gave up my job to become a carer for my mum who had Alzheimer's. My heart breaks for anyone with this dreadful disease and the unsung heroes (usually family members) who care for them.
What my mum loved one week changed completely the next week, she became confused, frightened, couldn't even use the remote control turn her beloved TV over to another programme. 'Forgot' how to use the hob, then the oven and finally the microwave.
I've not seen the advert as yet but will look out for it.

hilz In Holland (I think) music is used often in the care homes for dementia sufferers and it is beneficial. My Mother would sing along with songs on the radio long after she'd forgotten other activities.

Dinahmo

hilz In Holland (I think) music is used often in the care homes for dementia sufferers and it is beneficial. My Mother would sing along with songs on the radio long after she'd forgotten other activities.

I think it is the same with anything to do with dementia patients, for some music will be good, for others it will irritate. Holland have some very good ideas for residents of dementia homes. They have some where it is laid out with the types of shops and things which were around when the sufferers were much younger as it is often the short term memory that goes. I can imagine that would work well for a lot of those with dementia. My mother seems to be someone who has lost her short term memories and a lot of long term ones and being completely immobile makes anything like that less likely to find that of benefit.

Dinahmo
It was so lovely to feel he could still find joy in anything at all. He loved The three tenors and his eyes seemed to shine when the music played and he tapped his thigh. How nice your Mum connected with tunes too. Not all memories of those times were happy ones so I hold dear those joyful moments and hope you can too.
So many people have very different experiences and there is still a lot to discover about the mind and how it works and what works for it. My heart goes out to sufferers and their families no matter where they are on the journey but I am happy that you have a fond memory of your mum singing along to a tune.

I have posted already but I think this advert hits the nail on the head for me. My father was diagnosed with early onset alzheimers when he was 52. He died nearly 20 years later. At first it was just little things he forgot like calling me me and telling me the same thing three times in one night. He was a great reader and the day I saw him trying to read the newspaper upside down was heartbreaking. He followed that by forgetting who his great granddaughter was although she was the apple of his eye. Then it was my turn to be forgotten and, eventually, he forgot who my mother was. Shew went to visit him one day and he told her she couldn't stay as he was expecting Janet to visit him. He didn't recognise the old woman in front of him to the pretty young thing he had married. I'm pretty sure my siblings could tell similar stories from their point of view. It was really sad that someone so intelligent and sociable could forget his entire life. Such a difficult disease for anyone to cope with.

First time I have posted on gransnet so bear with please.
My husband was diagnosed with Lewy body dementia 2 years ago. He had gradually lost the skills he had as a carpenter/ joiner, but continues to enjoy gardening, mainly growing vegetables with the help of a friend. Thank goodness for brighter days !
We saw the ad last week and were quite shocked actually, as were our 3 children too.
We are trying our best to be positive as we face the minefield which we must navigate. So when hearing the words to die over and over, it’s quite upsetting and from our point of view far too negative.
I’m not being naïve in thinking this , I have moments when I wonder ….what next…..how will we cope!! But help is out there and even though it’s very hard for us both, we need positivity , not the message in the ad.

Gmala as I said in a previous post that advert is mild compared to what does happen to people with dementia and Alzheimer's.

What people here have talked about is from their own experiences . My mom did die over and over again . So did everyone else's parent I personally know who had it.

My mom's violence was hard to cope with and my mom would have hated what she became. But the worst was before then when she looked at her wedding photo and asked who the man was. But on the day she started to die she woke and shouted out my dad's name before falling asleep again.

Gmala you need to realise that advert and what people have said here is going to happen to your husband. And you need to prepare yourself and your family. It can take years to get like my mom or months but it will happen.

First time my mom bit me I was so shocked and upset especially as she laughed . I asked her why and she said why not. She loved having her feet soaked in shower gel then I would dry and cut her nails before rubbing cream into her feet. But I had to stop doing it after the second time she kicked me in the face . If this shocks you this is what dementia can do to a loved one. I have worse things my mom did .

I choose to look after my mom by myself without carers or putting her into a home . Everyone has to decide what they can cope with. Even though born disabled I knew I could look after my mom better than anyone else. And proud of the fact my mom never had a sore on her body .

I am a realise and knew mom would become violent but it was still a shock when it happened. But I loved my mom .

You need to realise what people have said here is their experience. You can be as positive as you like but your husband will get worse and you need to prepare yourself for it.

The message in the advert was correct . You need to realise that .

Whiff you should realise that not every person living with dementia will become violent. Lots of people become more loving and gentle.

Gmala thank you for putting the more positive take on caring for someone living with dementia.

And for endorsing my view (and the view of lots of others) of the ad.

And, I have heard that the Alzheimer's Society are rethinking in the light of all the complaints.

kittylester I did say from my own personal experience everyone's parent who I knew became violent . I didn't say everyone would.

I only talk about my personal experience counting my mom 5 friends parents became violent.

Kittylester, thankyou for your kind words of support.
Whiff, like I mentioned earlier, I’m not naive to what may happen. I helped to care for my Dad who had dementia , after Mum passed away. Yes he eventually had to have residential care, and I fully realise this may come to us also.
Meanwhile, being positive and taking each day at a time, whilst being proactive about what we can do, and the help we can get.
Perhaps we’re fortunate in having a glass half full attitude, and yes we have our ‘moments’ and no doubt these will become more so.
Myself and my family are prepared to face whatever we need to do to care for my husband.