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What you wish you'd known before diagnosis - Dementia Action Week 2022

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Shel_B

Administrator
Staff member
May 5, 2020
1,257
0
Doncaster
Hi everyone,

Dementia Action Week is our biggest and longest running awareness campaign. Each year, we work with individuals and organisations across the UK to encourage people to ‘act on dementia’. This year’s campaign will run from 16-22 May.

This year, Dementia Action Week is all about diagnosis. Our Social media team have asked for your help during this important week.

They would like to know:

What do you wish you’d known about dementia before diagnosis?

What tips would you give someone caring for a loved one who has recently been diagnosed?


We'd love to see your comments, and be able to share your thoughts around this.

Our Social Media team are hoping to feature some of your comments on Alzheimer's Society's Instagram stories on the run up to Dementia Action Week.

We'd love to hear your comments before 6 May if possible. Thanks everyone :)
 

nae sporran

Volunteer Host
Oct 29, 2014
9,148
0
Bristol
We were told C had vascular dementia after a memory assessment a year after her stroke. It didn't register as so far as either of us could see she was just taking a bot longer to get back in her stride after the stroke. Nobody said it would progress in steps. Nobody said she could get worse after UTIs. That only became apparent two and a half years later when she had a seizure after a run of UTIs. Not sure what we could have done to prevent it, but a bit more warning might have given me some ideas what to ask the GP during those months before the seizure. I wished I had found this forum and the carers groups run by the care support centre earlier.
Tips for some one looking after a loved one who is recently diagnosed ? Ask them to grant you Power of Attorney, if necessary make it a mutual agreement. It will make life easier later on. Try to find support groups and memory cafes if you can. Those get you both out and are a chance to find out what else is available locally. Get a care needs assessment and a carers assessment from social services. The grant from the council for something that may help you as a carer can come in handy when £67 a week leaves you short of funds for a wee treat for yourself.
 

canary

Registered User
Feb 25, 2014
18,843
0
South coast
I wish I had known how much dementia can change someones behaviour and that saying nasty things (that they completely believe) is all part and parcel of dementia. If I had known, I would have been ready and therefore not so hurt when it happened.

I also wish I had known how important it was to get POA and that you didnt need to go through a solicitor. I could probably have got mum to do a POA right at the beginning, but by the time I realised how important it was, mum was convinced I was stealing from her and wouldnt do it. Eventually I had to go down the deputyship route.

To someone who is caring for a loved one who has just been diagnosed with dementia I would say - dont try and do it all yourself. It may be OK at the moment, but there will come a time when it is too much. Accept every offer of help and dont be afraid to get carers in. Its also better to get people in early rather than too late. If you leave it till you are on your knees it may be too late for them to accept care from anyone else and only want you to do everything.
 

Canna

Registered User
Jan 24, 2022
24
0
I wish I'd discovered Dementia Talking Point earlier! This is where I have learnt so much about how dementia affects people, and the people who care for them.
 

kindred

Registered User
Apr 8, 2018
2,843
0
I wish I had known that a nursing home is often the right and compassionate way to go.
I wish I had know how to cope with the cruelties of the social services.
I wish I had been stronger.
 

Lawson58

Registered User
Aug 1, 2014
2,891
0
Victoria, Australia
I wished I had known that so many people get this dreadful disease, that it wasn’t only something that happened to other people.

I wished I had know how much it can affect the lives of those involved in caring for a person with dementia as I probably would have made some different decisions. I wish I had known all of that because it came pretty close to destroying me.

I also wish I had known how much strength this would take, not just from but my family and those who showed me support.

I wish I had known how much this disease isolates the sufferer and the carer, how much of your life it steals.
 

lollyc

Registered User
Sep 9, 2020
800
0
I wish I'd known that that the happy, smilng leaflets bear no reality to the truth of living with someone with dementia, and that you aren't failing if you don't live up to this image.

I wish there had been some, sensible, practical support at the point of diagnosis, not a card wth AS number on it and a pat on the back. I didn't expect the same support as a cancer patient, but I had assumed we would get information about POA, benefits, local groups providing activities and support (not just the big charity ones), how to get equipment,respite, sitters, incontinence supplies etc., etc., etc. All the things you need to know, but don't know you need to know. A simple booklet detailing all this would've helped enormously.

I wish the world could understand that dementia is not just about being a bit forgetful.

I wish organisations would stop wasting money on adverts telling us all we need to do to stop dementia is do a quiz every day, and live healthily. Many, many of us here have a loved one who did exactly that, and they still got dementia. To somehow suggest that these people brought this hellish disease on themselves is offensive. In this instance, "use it or lose it" really isn't helpful.

I wish I'd known how much dementia will dictate every aspect of your life, both for carer and PWD, however much you try to prevent it doing so.

Dementia is like the incoming tide; nothing you can say or do will prevent it coming in. It washes away everything in it's path and being unable to hold it back doesn't mean you have failed , because the task is impossible. Unfortunately, I don't think the truth is very palatable.
 

RosettaT

Registered User
Sep 9, 2018
808
0
Mid Lincs
@lollyc - well said, there is very little I could expand on what you have said and totally agree with you.

I'm not sure many of those in government have a clue. Unless you live with it you can't understand it. They need to see what it is really like and how it affects families.

I too get upset at being told do this, do that, and you'll reduce the chances of getting dementia, my OH lived a good life, drank in moderation, was active, didn't smoke, ate well and it made no difference.

I also find the term 'Social Disease' offensive. It is far from social.
 

CAL Y

Registered User
Jul 17, 2021
359
0
I wish I’d known that he was ill but there again do I.
At least there would have been an explanation as to why a happy marriage turned sour, seemingly for no reason.
At least I would have known why my gentle caring husband turned into a heavy drinker with no empathy.
Even though a diagnosis would have been devastating, at least it might have saved all the arguments and threats of divorce.
Its so true that dementia doesn’t only destroy one persons life.😢
 

Gilly-Bean

Registered User
Oct 27, 2021
34
0
Littleborough
I wish I'd known that that the happy, smilng leaflets bear no reality to the truth of living with someone with dementia, and that you aren't failing if you don't live up to this image.

I wish there had been some, sensible, practical support at the point of diagnosis, not a card wth AS number on it and a pat on the back. I didn't expect the same support as a cancer patient, but I had assumed we would get information about POA, benefits, local groups providing activities and support (not just the big charity ones), how to get equipment,respite, sitters, incontinence supplies etc., etc., etc. All the things you need to know, but don't know you need to know. A simple booklet detailing all this would've helped enormously.

I wish the world could understand that dementia is not just about being a bit forgetful.

I wish organisations would stop wasting money on adverts telling us all we need to do to stop dementia is do a quiz every day, and live healthily. Many, many of us here have a loved one who did exactly that, and they still got dementia. To somehow suggest that these people brought this hellish disease on themselves is offensive. In this instance, "use it or lose it" really isn't helpful.

I wish I'd known how much dementia will dictate every aspect of your life, both for carer and PWD, however much you try to prevent it doing so.

Dementia is like the incoming tide; nothing you can say or do will prevent it coming in. It washes away everything in it's path and being unable to hold it back doesn't mean you have failed , because the task is impossible. Unfortunately, I don't think the truth is very palatable.
I couldn't have said it any better. Absolutely spot on. ❤️
 

Bettusboo

Registered User
Aug 30, 2020
92
0
I wish I’d known about ‘hosting mode’ and acted sooner on my concerns about parents dementia - including pushing harder for them to move closer to me on the many times they considered it. I wish I’d understood that dementia was already affecting their ability to plan and make good decisions and had done everything possible to get them to live in more suitable accommodation closer to the rest of the family. I also wish I’d gone with my own instincts sooner rather than be influenced by family members who I now think were completely hoodwinked by ‘hosting mode’.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,679
0
London
Thanks so much everyone for sharing what you wish you'd known. We really appreciate it.

If anyone else has any thoughts, please feel free to add them here.
 

Sarasa

Volunteer Host
Apr 13, 2018
5,018
0
Nottinghamshire
I wish I'd known that dementia isn't all about developing a poor memory. My mother's memory for day to day things was pretty good and she could manage her personal care, cooking etc fine. What were warning signs I didn't pick up on was that her increasing self-centeredness, her increasing dominating conversations with stories of her past, and her conviction she'd had a great romance with a tour op. were signs of early dementia. It wasn't till she started accusing the neighbours of stealing from her I realised where we were heading.
 

Agzy

Registered User
Nov 16, 2016
2,548
0
Moreton, Wirral. UK.
Power of attorney for both health and money plus, the sanity prevention tool - keep a journal/diary! There is probably a list but the biggest shock was that once diagnosed her GP practice appears to have wiped it from their records as no support for her or me as carer at all.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,134
0
South Staffordshire
I’m glad I didn’t know. I’m sure I wouldn’t have lasted five minutes as a carer had I known. Once on the path you have to keep walking and I managed 11 years on that path.

On the day we were told my husband had Alzheimer’s his consultant spoke of power of attorney, wills and advising the DVLA of the diagnosis and that was the sum total of information given.

Help was very hit and miss when we began the journey 17 years ago and it’s no better now, in fact it appears worse. .
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,399
0
High Peak
I wish I'd known that dementia was such a 'big' disease that affected all aspects of the person's life, physically as well as mentally. I thought it was just a bit of memory loss. Neither did I understand that as time goes on, it gets worse and worse until the person is lost to this world and their quality of life is nil. I can remember thinking, 'How bad can this possibly get?' only to find out it was far, far worse than I could have imagined. I'm glad I didn't know how emotionally damaging it would be for me but also glad I protected my children from it.

I'm afraid I blame the Alzheimer's Society and others for all those posters showing smiling (and clean!) people with dementia, happily engaging with their happy happy carers. Because that's a complete misrepresentation, isn't it?

Advice to someone about to become a carer? Run. Run very fast. Sorry, but that's how I feel.
 

lollyc

Registered User
Sep 9, 2020
800
0
I wish I'd known that dementia isn't all about developing a poor memory. My mother's memory for day to day things was pretty good and she could manage her personal care, cooking etc fine. What were warning signs I didn't pick up on was that her increasing self-centeredness, her increasing dominating conversations with stories of her past, and her conviction she'd had a great romance with a tour op. were signs of early dementia. It wasn't till she started accusing the neighbours of stealing from her I realised where we were heading.
I've been thinking about this since my previous post, and this was something that occured to me too.
Unless you know anything about dementia - and I didn't - there is a tendency to believe memory loss = forgetfulness. And the smiley leaflets do nothing to dispell that myth. Nor did anyone at the memory clinic point out that sublte, but very important, difference.

A few days ago a lady came into the shop where I work. She asked if I recognised her. TBH, not escpecially. The shop is in the village where I live, so most people are vaguely familiar. Then she said she used to live in the flats opposite me and had 2 dogs. Ping! I knew her name, husband's name, dogs' names, where they'd moved to etc., etc. It all came flooding back, and I have no doubt, even if I don't see her for a month, I will recognise her next time. To me, that is being forgetful.
Memory loss would be that I was unable to recall her, no matter how much prompting.
Perhaps an analogy would be that forgetfulness is a smouldering ember that can be re-ignited. With memory loss no amount of pumping the bellows will relight the flame.

Another analogy that came to me is this:
Imagine that every brain process - conscious or unconscious - is a join the dots puzzle. So, to tie a shoe lace, we need to join each dot in the correct order for the final 'picture' - the tied lace - to be correct. In dementia the dots are joined randomly. Some steps are missed, others joined out of order, or joined multiple times, so that the resulting 'picture' is simply a jumble of confusion, or maybe is nearly complete, but with parts missing.

I know this isn't exactly what dementia is, and each person is different, but an explanation along these lines might have helped me understand why Mum seemed unable to follow simple instructions / conversation and lost the ability to perform familiar tasks. And why 'use it or lose it' doesn't work with dementia.

I do understand why clinics don't spell out the true grimness to a PWD, but carers / family need to know the reality of what this disease is. It does no-one any favours to pretend it is less than it is. But perhaps the fear is that, as @Jaded'n'faded says, we would refuse to care and head for the hills! I always tell people that I will never do this again for anyone.... and I mean it.
 

CAL Y

Registered User
Jul 17, 2021
359
0
I've been thinking about this since my previous post, and this was something that occured to me too.
Unless you know anything about dementia - and I didn't - there is a tendency to believe memory loss = forgetfulness. And the smiley leaflets do nothing to dispell that myth. Nor did anyone at the memory clinic point out that sublte, but very important, difference.

A few days ago a lady came into the shop where I work. She asked if I recognised her. TBH, not escpecially. The shop is in the village where I live, so most people are vaguely familiar. Then she said she used to live in the flats opposite me and had 2 dogs. Ping! I knew her name, husband's name, dogs' names, where they'd moved to etc., etc. It all came flooding back, and I have no doubt, even if I don't see her for a month, I will recognise her next time. To me, that is being forgetful.
Memory loss would be that I was unable to recall her, no matter how much prompting.
Perhaps an analogy would be that forgetfulness is a smouldering ember that can be re-ignited. With memory loss no amount of pumping the bellows will relight the flame.

Another analogy that came to me is this:
Imagine that every brain process - conscious or unconscious - is a join the dots puzzle. So, to tie a shoe lace, we need to join each dot in the correct order for the final 'picture' - the tied lace - to be correct. In dementia the dots are joined randomly. Some steps are missed, others joined out of order, or joined multiple times, so that the resulting 'picture' is simply a jumble of confusion, or maybe is nearly complete, but with parts missing.

I know this isn't exactly what dementia is, and each person is different, but an explanation along these lines might have helped me understand why Mum seemed unable to follow simple instructions / conversation and lost the ability to perform familiar tasks. And why 'use it or lose it' doesn't work with dementia.

I do understand why clinics don't spell out the true grimness to a PWD, but carers / family need to know the reality of what this disease is. It does no-one any favours to pretend it is less than it is. But perhaps the fear is that, as @Jaded'n'faded says, we would refuse to care and head for the hills! I always tell people that I will never do this again for anyone.... and I mean it.
@lollyc . I very much agree with you about never wanting to do it again.
You might say that, in a way my husband and myself “ dodged a bullet “ because he was diagnosed with a terminal cancer about 6 months after the dementia diagnosis.
The cancer accelerated the dementia and I had to cope with most of the bad symptoms in his last few weeks.

I really don’t know how any of you care for your loved ones year after year.
In less than a year I was completely wiped out and it has taken another 6 months to start to get my strength back.
I can see why the medics don’t tell us the reality. Many people would run a mile and who could blame them.
I suppose it boils down to dementia being treated as a social problem, not as the terminal illness it really is. All wrong. Scandalous.
 

heffy

Registered User
Oct 24, 2021
11
0
I wish I’d known about ‘hosting mode’ and acted sooner on my concerns about parents dementia - including pushing harder for them to move closer to me on the many times they considered it. I wish I’d understood that dementia was already affecting their ability to plan and make good decisions and had done everything possible to get them to live in more suitable accommodation closer to the rest of the family. I also wish I’d gone with my own instincts sooner rather than be influenced by family members who I now think were completely hoodwinked by ‘hosting mode’.
I think you all have got it spot on. The whole negotiating anything within the health care or Social Services system is failing. I am negotiating the first part of dealing with a parent who has hosting mode. (Always has) and can convince doctors that they are in a better state than they are by forgetting things. THE Health and Welfare POA might as well not exist (except you are suposted to spend hours helping them make appointments) on the various GP ever changing systems and then not be listened to when you spend hours driving, getting grief finding a car parking space (Because a GP cannot sanction a disabled car Parking Badge (Have to get a consultant at least) and have waited 6 months for an initial referral in the first place. After suspecting something is wrong for at least 2 years before hand. if not longer. I do appreciate what the GP's are up against. But they will have a lot of Carers failing down because the support is not out their (especially if you show any signs of having money, or the actual person with dementia is in total (I can mode) and is a consumate actor to authority, and has never properly followed advice from doctors).
 
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