Alzheimer's Society Dementia Advert

I do understand what you are saying Kitty and am sure an advert, which I am yet to see despite watching tv every night, will not affect people seeking help fir their memory problems or those of carers and volunteers, but as I said upthread, there are different types of behaviour and progress with the disease.
I have included Alzheimer’s in my will and hope others will do the same.
I met and talked with Wendy Mitchell a few years ago. She was diagnosed in her 50 s which was cruel, and was a brave and impressive woman. RIP Wendy.

*kittylester Tue 02-Apr-24 10:37:44
Obviously, it's very different l, but a diagnosis now doesn't mean that someone immediately becomes bedridden etc.*

Of course not.

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.

I have seen photos of my mother at Help the Aged events with a smiling face. What they don't show is the lead up to those photos with the anxiety of going out, the anxiety of being with strangers even though she has been there every week for the last couple of years, etc. They also don't show the volunteers asking for a smile for the camera where the sufferer will do it for a stranger but will be more honest with their carer.

That is not to say that we should not continue to encourage stimulation. God knows that is why I put the both of us through it a couple of times a week. I had to put me through it too because the service where you dropped off your loved one was just too traumatic for my mother.

Of course I understand that earlier diagnosis will see happier people but the reality is, without better drugs, even earlier diagnosis, etc, the path towards the suffering is scarily close and tragic.

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.

And that's great if that is the case for your loved one - but it certainly isn't the case for everyone with dementia. There are so many different types of dementia and it affects people in so many different ways. Yes, some can live happy lives with it - but many others don't. That is the reality - and if this ad helps to raise awareness, that can only be a good thing. I'm certainly not dismissing the point you are trying to make, kittylester, but you only have to read some of the heartrending posts on here to see that not everyone shares your view. Please don't dismiss those of us who have seen the suffering - and yes, I do mean actual suffering - which dementia can cause.

"I wonder how much help you people who did the hard caring roles, accessed"
Well here's the problem. The carers charity in our area assume you can get to meetings. They want to give grants for respite for carers but do not understand that I cannot just disappear from my DH and leave him with someone he doesn't know.
After 6 years family members are reluctant to commit to more help after helping out with Hospital and Dentist appointments ( which I am grateful for). So, after the daily grind of almost 14 hours on continual care and running a home and all the admin I no longer have the energy to go searching for help. I just use Age Uk's gardening service - and that's not cheap.
I am 82 and have not had a day off since 2018. Any outings are perhaps for 2/3 hours and not in anyway relaxing as I always have one eye on th clock or an ear out for the phone.
There are many people in a lot worse situation than me.

I volunteer with AgeUk, who have the contract for offering Dementia Services in our area. I volunteered with the AS until they lost the contract.

My main area is working with the Carer's (for over 10 years). I have had relatives and friends with Dementia (admittedly not being the main carer) and I started this volunteering role to help those who were struggling to cope with the person with the diagnosis.

If this advert scares them off (which is a genuine concern) how sad would that be.

I wonder how much help you people who did the hard caring roles, accessed.

Coming across as OK for an hour or two is known as putting on a social facade and is incredibly tiring for the person living with dementia.

I don’t know whether those GNers who volunteer, or who have volunteered, with people with dementia, have also lived with it, 24/7, for months or years on end, but I suspect that it may give a somewhat different idea.

My FiL, I know, could easily come across as ‘fairly normal’ for an hour or two when guests were present. Hence I’d get the comments, ‘He doesn’t seem too bad at all to me!’

But they didn’t see the endless pacing, the same question over and over (I once counted 35 times in one hour), not to mention the violent rages over the tiniest thing - over which I usually had no control.

On the Alz. Soc. Talking Point forum, for carers, this was known as ‘hostess mode’ and was a well known feature of the disease.

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.

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.

KittyLester said - "I help run Carer Learning courses for people caring for those recently diagnosed with a dementia, for those who are newly post diagnosis, those waiting for diagnosis and for those who have been diagnosed with Mild Cognitive Impairment"

....and that is very different to what a lot of us have seen with our loved ones - at the end stages, dementia sufferers are often frightened, unable to communicate, need to be spoon-fed, and are sometimes doubly incontinent.

Greyisnotmycolour

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.

Oh yes. An aunt of mine (thankfully living in Canada so contact was minimal) told me it was my mother’s own fault that she’d got dementia. Now, if only she’d been more like the sprightly 90 year olds at her church…..

Needless to say, she (still) is one of those very judgemental churchgoers we could all do without.

I would just add that my mother’s cleaning lady, also a churchgoer, was an absolute godsend during the last few years before DM finally moved to a care home - a truly good, kind person.

"kittylester

I am so sad that everyone on here writes off people with any kind of dementia diagnosis."

All I have read is people telling heart rending experiences of coping with others with dementia. I worked with people with dementia and almost every female member of my family has suffered from it for at least three generations.
I supported my mother when she was forcibly sectioned. Don't ask me to recount that experience. I supported her to her death. The speed of her mental demise was lightning fast but her body slowly wasted away. She had always said she didn't want to live like that (like her aunts, her mother, her older sisters) but she had no choice. When she eventually died she was a shrivelled shell, unrecognisable, pain etched indelibly in every wrinkle.

The people you are insulting object to your terminology, however your lack of empathy is inexcusable.

We had the self same issue, OldFrill

The residents became customers, who became, service users, and then became people.

In an elderly people's home, I asked someone if she wanted to put on PPC before eating. (Personal protective clothing)
"No!" She said
"I want a bib, the same as the other old girls!"

My granddaughters other grandma is terrified during every waking moment, my oldest friend is becoming aggressive, she has lost the ability to recall who people are and find words to express her needs, another friend is convinced his wife is dead - she isn’t - and is now unable to feed himself. Dementia has taken life from all three of them, in one case very quickly, think weeks not months, in the others more steadily. They and their loved ones are suffering.

As individuals we respond differently to any message. The advert doesn’t shock or distress me but then I’m someone who wants to be told truthfully the prognosis about any illness I or a loved one have. Other people would rather not know. Adverts don’t and can’t differentiate between people. If we’re caring for someone we will know if they would be distressed by this advert and if so will do our best to protect them from it. For ourselves we can make a choice whether to hear its message or not.

kittylester

It isn't my 'living with', granniesunite. It's the accepted terminology now. I didn't accuse you personally of 'writing' your husband off.

People are allowed to object to "accepted terminology". I worked for a charity which provides housing and support for severely disabled people. There was ongoing discussions in the charity hierarchy as to whether the recipients of the support were "service users", "clients", "residents" "patients" "users" (fgs), "customers" the discussions seemed endless. Eventually they asked the "people who lived there" who said they couldn't care less. What was a priority to the charity hierarchy was of absolutely no concern to the people it supported. The terminology remained fluid. It's best not to be absolute - this year's black will be next year's blue.

I am so sad that everyone on here writes off people with any kind of dementia diagnosis. There is so much life for them to live - different maybe but still a great life.

I think this is such a crass statement after you have read on here just how their relatives have suffered. If you look at the majority of posts on here, dementia sufferers haven't had a great life. May be the people you know who have been diagnosed have been in different stages when they have first been diagnosed but both my relatives were quite far down the road by the time they had a diagnosis. They were already suffering.

It isn't my 'living with', granniesunite. It's the accepted terminology now. I didn't accuse you personally of 'writing' your husband off.

My husband has most definitely not been written off kittylester I’m quite upset at being accused of that.

I find that statement cruel and I hope you wouldn’t use that phrase in real life to a carer who happened to disagree with your living with

I volunteered for over 30 years with very vulnerable and mentally challenging people volunteering is very different to actually living with …

Witzend

*icanhandthemback*, for too many years when I was coping with dementia, I used to find the Alz. Soc. carers’ forum excellent for a good old letting-off-steam vent - at least they all knew what it was like!

Yes I totally agree. Talking Point is brilliant, for carers, for the person living with Dementia and for the bereaved. They have different sections depending who you are at that time. However they all agree that caring for a person living with Dementia is one long slow bereavement. I certainly agree with the add although I personally would not have said that my mother died many times, I would say she deteriorated many, many times and that for me was definitely a bereavement each time. We grieve for what might have been, we grieve each time they can no longer do something else and we think we cannot grieve any more when they finally die, yet it hits us like a bomb. So much grieving for a lot of carers.

It wasn’t much of a ‘great life’ for my mother, kittylester, when she was so often anxious or frightened of things she couldn’t even name.
‘What are you frightened of?’
‘I don’t know!’

Then there was the time she was in a dreadful state because she and her cleaning lady had taken my father’s dead body in the cleaning lady’s car to a graveyard a hundred miles away, and just dumped it!

No, of course they hadn’t - she’d had a dream, triggered by something on TV the previous evening.

But could I convince her? I had been there when my father died, I was there at his funeral, and he was cremated.
Nothing could convince her. I even phoned the cleaning lady, who told her that no, she’d never taken her anywhere in her car.
It was useless.
For well over 48 hours she was in a state of acute distress - only gradually did she come to accept that perhaps she was mistaken - but someone had still come to the door and asked her to get rid of a dead body - not my father’s though.

Just one example of the ‘great life’ my mother was able to enjoy when she had dementia.

Lovely post whiff.

I am so sad that everyone on here writes off people with any kind of dementia diagnosis. There is so much life for them to live - different maybe but still a great life.

Ourkid1, I began my volunteering role (helping carers and helping at Memory Cafes, MCST, MCI etc) with the Alzheimer's Society and, when they lost the contract in Leicestershire, we all moved to AgeUk who now provide a brilliant service.

icanhandthemback yes I would inna heart beat. I was born disabled with a hole in my heart. Met my husband when I was 16 he was 18. But he wanted me I didn't think it would last. He was my world . When I was ,29 I woke unable to control my limbs our children where 4 and 6 months. Didn't phase my husband he just said we alter our life to suit you and be a normal family. I had been in constant pain all my life and fell a lot. My parents where told it was growing pains and I was clumsy.

My fit healthy husband got grade 4 malignant melanoma 2001 and died in agony in 2004 aged 47. I then had both parents and mother in law dependant on me. So after nursing my husband ,helped my mom look after my dad he died aged 80 2007. I hated my in laws my father in law had died in 1988. But I looked after my mother in law until she died aged 91 in 2015 even thought I hated that woman for 40 years. After my husband died she denied she had a son or 2 grandchildren. But I couldn't not look after her. Really my mom was depandant on me from when my dad died. Like I said mom died in 2017.
I can't be anything than the person I am and I would do it all again the good ,bad and downright awful.

After my husband died I existed and didn't live the life he wanted for me until 2019 when I moved over 100 miles to the north west. Finally I am living my life to the full. But I owe everything to my husband my one and only true love . Plus my parents never treatment me different nor did my extended family. I didn't realise I was different until I went to high school and was bullied everyday for 5 years because of my pain and falling down all the time.

But the love and attention I had growing up and the love I had from my husband,dad and mom before dementia killed her I am a lucky woman. Unfortunately my son decided I was no longer his mom in 2020. I lost him and 3 grandson's who don't know I exist. But have a wonderful daughter, son in law and 2 grandson's . Plus all my friends I made here .

We all face our daily struggles and I treat people the way I want to be treated. So I haven't changed but life without my husband has been hard but I found out I am stronger than I thought . Since moving here my confidence has grown and I put myself first. It's not selfish but it's what we all have to do otherwise we lose us. Took me 15 years to be me.

My love and grief for my husband gets stronger every year. But I found the other half of me and I was his other half we made a whole. I lost half of me when he died . But my years living here my life has changed so much . So I consider myself lucky. I help people in away I can and a lot of people on GN and in my life have helped me . I care about people and I ramble on but that's me in real life 😁

It's a pet hate of mine, too.

I do mean hate, as well.

Greyisnotmycolour

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.

Having been through it with both my parents and now as a volunteer with Alzheimer's Society, I absolutely agree with you. That's on all counts - your comment about "being brave" and "fighting" cancer is also something which always annoys me. Similarly when people say that someone is "strong enough" not to let cancer win. Cancer is something which skilled medical treatment may or may not be able to cure. It has nothing to do with "bravery" or "strength". That implies that those who die from it are somehow weak and should have fought harder.

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.