Alzheimer's Society Dementia Advert

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.

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?

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

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.

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.

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?

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 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 dad was physically fit for a long time but the day he walked past me in the street with his carer as if he didn't know me broke my heart. I walked into my mother's and burst into tears. The second time was when I went with my mother to see him in hospital and when she went to find him I wouldn't have recognised the bent wizened old man that walked in with my mother. I should say that she supported him. He died 32 years ago and I'm crying as I write this. The advert is hard hitting but it's similar to what we went through as a family. It's a cruel, hard disease and I hope they find a way to halt or treat it. No one, or their family, should a a victm(s). Hreartbreaking.

I would refer to it as a long goodbye, not a slow death.

Hardly brainwashing stillness. You choose where you support.
As has been said Alzheimers gets a fraction of other charities so is reliant on public funds so advertising is pretty standard as a means of funding what has been seriously lacking for Dementia in all its forms for far too long.

It’s no bad thing to raise awareness of certain diseases but you are a ‘sitting duck’ when it’s continuously put before you on tv. As Fiona says, sometimes you need to switch it off. Trauma can stay with us long term and is easily triggered. I can't help feeling that is what the advertisers are banking on…and that in the process they hope it will result in greater donations to the appropriate organisations. It’s cruel in my view. Most people don’t need to be made more aware and I’ll choose where my money goes without being virtually brainwashed.

Dinahmo

Furthermore - things may have changed but for many years the Alzheimer's Society received around 3% of the donations that Cancer Research received. May be such an advert is necessary for fundraising?

I agree, I thought that was exactly why it was necessary Dinahmo. It is painful to watch for those already affected by this dreadful disease, and although I dislike the phrase ‘ raise awareness’, it may help people to think about how devastating it is for every family affected.
The Bodach died of cancer just a year after his dementia began, and it was already heartbreaking to see his decline. Through our Memory Clinic I met family members who had been living with the effects for years, so if money can be raised to help them, then surely it’s a good thing?

It is a hard hitting advert and reminds me so much of my Mum - I can’t watch it anymore as it triggers me - so it’s obviously having an impact - but Why- I’m not even sure what’s it’s about now

I have just gone through this - that ad is spot on
The truth hurts

The last photo taken of my mom was Christmas morning at my brother's and sister in law's. They had mom for 4 days so I could stay with my daughter and family and see my son and family. She looked totally bewildered. No idea it was Christmas and my brother total her who each of the presents where off. She said do I know them . She had a nice day had no idea who my brother and sister in law was but did say to him at bedtime I have had a nice day can I die in your bed. He said yes if that's what you want. She didn't . But had forgotten she asked him. After mom's funeral we destroyed the photo as it wasn't mom. Last time mom looked like mom was when she held her first great grandson in the November before she died but as soon as she stopped holding him she wasn't my mom again. Those photos we kept .

I have personally know family and friends who had a loved one with dementia or Alzheimer's and every photo taken once it had taken hold they never took or kept a photo of them . And everyone one of those people turned violent but as I have said it's fear that makes them act that way.

kittylester

And, if I had permission, I could post vast amounts of photos showing how well people can live with dementia - happy, smiling faces enjoying themselves.

Wendy Mitchell lived life to the full for a good few years after her diagnosis.

Research shows that early Cognitive stimulation can start to build new pathways in the brain. If people are deterred from seeking help they could miss out on the opportunity.

Do you have any idea how patronising you sound.

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.

So you're all giving up because of one advert that's attempting to raise awareness, funds and understanding. An advert that the vast majority on here are supportive of.
Not very committed then. Unlike the real carers, who cannot give up.

Granniesunite, 💐.

I totally understand that Witzend

To have the house to yourself for just Few hours would be just bliss. I do get to go out sometimes but I spend the time in my car just resting I’m not complaining.

kittylester

My point was that one problem we have is that Carers don't know quite how much help there is out there and help has come on in leaps and bounds over the past few years.

One of the things we do on our courses is to signpost people to all the help there is out there.

The only help I ever wanted with FiL, was for someone to come and take him away for 24 hours, so I could enjoy some peace and quiet in my own home.

I did not want to attend any group, or to go shopping, or have my hair done or to be ‘pampered’ - just to relax on my own sofa with a good book.

After dh finally insisted on BiL and SiL taking him for a couple of days (SiL had previously refused) I collapsed on the sofa at around 1 pm and slept for 4 hours solid.

All the help in the world won’t stop this disease progressing. We carers know and understand this but are grateful for the help and support given when needed.

I’ve got lots of help. Support workers, family, friends neighbours. Alzhimers Scotland have been wonderful when I’ve needed an ear or help with all sorts of practical things but still this disease marches on.

It takes over so many more lives than just the poor soul who has it.

I really do hope that this ad hits home and helps to deliver a message to government just how serious this illness is.

Anyone watering down the message of this ad does a disservice to all seriously ill people suffering with this illness.

Well perhaps the 'help' is not matching the problem. Maybe it is too expensive.

We have one visit a year from our GP practice and we are usually guided towards Social Services and I am well aware they are swamped.

I repeat not all of us are able to get to meetings ( I have had to give up driving through insurance costs and anxiety). My DH needs a wheelchair outside and I am not strong enough to push him

In the early stages of the disease I am sure centres and groups are invaluable. Not later when it takes hours to persuade the patient just to get washed, dressed, fed and toileted.

My point was that one problem we have is that Carers don't know quite how much help there is out there and help has come on in leaps and bounds over the past few years.

One of the things we do on our courses is to signpost people to all the help there is out there.

I wonder how much help you people who did the hard caring roles accessed. Words fail me.

And yes of course we know that putting on a show is tiring for our people .We pick up the pieces when it’s over. We can distract and divert all day but sometimes it just doesn’t work.