My dementia diagnosis experience was abhorrent so I became a campaigner

Real stories

When John was diagnosed with young-onset Alzheimer’s disease, it was a huge shock to him and his family. He received little support after the news was delivered and is now campaigning to improve the diagnosis experience.

07 September 2022
short read

I spent my career as a mechanical design engineer in Coventry. My apprenticeship focused on aircrafts, but I soon moved onto cars.

Towards the end of my career, the work opportunities were shrinking. This led to me being made redundant three or four times over the last five or six years of my working life, which was unsettling for me and my family.

My family took the brunt of me being snappy, dogmatic and less empathetic. This change in personality was accompanied by mood swings we initially put down to mild depression. 

John and his partner wearing winter clothing outdoors in the snow

John and his family first thought his changing moods were due to depression.

Shocked by a dementia diagnosis

When I was diagnosed with young-onset Alzheimer’s disease in 2014, it was a huge shock.

I’d been sent for a brain scan by my GP after blacking out, and as soon as the results came back, I was sent to a Memory Clinic for more tests. The scan showed that the left frontal lobe of my brain was dead.

The doctor delivered the diagnosis of Alzheimer’s as gently as he could, but I was still completely taken aback. He may have asked if we had any questions at the time, but I was so shocked I don’t think we asked any. Then the appointment was over, and we were left to it.

When you’re told you have Alzheimer’s your mind goes to the worst-case scenario. We had so many unanswered questions. 

Left with little support

After I was given the clinical diagnosis, there was no practical or emotional support – we had to sort ourselves out.

We had no idea what to expect and it was only when we were put in touch with Alzheimer’s Society weeks later that we got answers.

Our dementia advisers are here for you.
0333 150 3456

I can’t tell you how much stress and worry the delay caused.

My Dementia Support Worker from Alzheimer’s Society helped to connect us with social services to find out if we could access any support – we couldn’t, as it turned out.

But she told us about Singing for the Brain, which was a godsend. She also helped us plan for the future, which was so important. 

John and his partner smiling together indoors

Learning about support services from Alzheimer's Society was beneficial for John and his family.

What needs to change

My experience of being diagnosed with Alzheimer’s was abhorrent, with no support afterwards for such a life-changing moment.

I’m calling on the Government to improve the diagnosis experience so no-one else has to go through what I did.

The person being diagnosed needs to know that they’re not on their own, there is help out there, and where to find it. 

Care and concern is evident from the medical professionals, but there needs to be an understanding of the whole journey of diagnosis, not just the bit they’re dealing with.

It’s so important there is no delay between the medical diagnosis and the social support, to stop the added stress and worry for those affected by this devastating condition. 

This October, I’m joining Alzheimer’s Society at the Conservative Party’s annual conference in Birmingham. I’ll be talking to Members of Parliament and telling them about my experience of getting a dementia diagnosis, and what needs to change.

Ask your MP to visit us at Party Conferences

As the first step to living well with dementia, everyone should be able to access a timely, accurate and quality diagnosis. 

Invite your MP to visit our party conference stand – and help put people affected by dementia back in the driving seat.

Find my MP
Categories
Assessment and Diagnosis, Changes in behaviour, Young-onset dementia
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25 comments

Ted Zalkind
says
24 November 2022 at 6:17 am
In order to access acceptable care for my wife who has Alzheimer's, I periodically make a 7 1/2 hour trek to an amazing neurology clinic that is part of a top rated hospital. I spent 1 1/2 years searching for this type of care. My wife's family, including her children, have stopped communicating with me as they feel I have not provided proper care. They refuse to understand what many Alzheimer's patients and care givers experience trying to get help and support. This organization had provided great help for me.
Brian
says
01 October 2022 at 8:04 pm
More needs to be invested in diagnosis, support and after care. This illness doesn’t seem to get the publicity it should to make people of all ages aware of the affects I had on the sufferer and their family’s. Also the support they need and deserve.
Andrea M Brown
says
01 October 2022 at 2:48 pm
My poor late Dad was diagnosed the vascular dementia and Alzheimer’s later in life! But really when u look back I think he had it from around the age of 64! He was a wonderful man and still treasure everything he did for me he was a cabinet maker so made lots of furniture Ext! I wish you and your family well Brian your wife sounds a treasure as well!
mark roland harrison
says
01 October 2022 at 12:46 pm
John lives in a area serviced by the hospital that gave the the first covid jab. However the protocols and care given to dementia patients is anything but world beating. The government continues to damage peoples health by stealth. Even before covid , patients relied on visitors helping them eat and drink. Let alone being an advocate for their loved ones and ignored even though the carer knows the patient far more than any one else.....i am a friend of johns from singing .
S.
says
01 October 2022 at 11:26 am
Hello, I have cared for my husband for over 31 years, day and night, through his Aplastic Anaemia at age 27; haematologist was wonderful and saved his life! He then had a brain haemorrhage and epilepsy during the next two years, has had primary progressive multiple sclerosis diagnosed for over 26 years, has had a suspected mini-stroke, went into a coma whilst in hospital and was in intensive care with a nurse 24/7. He’s had MS dementia for around 10 years from the age of 50. The GP, doctors, consultants, nurses etc. have all been amazing and saved his life many times. He has Optic Neuritis, Nystagmus and an indwelling catheter with bladder and bowel problems. He went into respite for a few days last year for only the 4th. time in all these years, with his wheelchair and indoor Zimmer frame, as I have very little sleep caring for him and within a few days with a team of people, he’d had a fall, banged his head and cut it on their radiator and had two massive seizures a few days after the fall with them (hadn’t had a seizure since 1997) and was taken to hospital. After the fall, their frailty clinic only assessed over a telephone call. I was only informed of all this once he was in hospital. The care home respite place didn’t advise me when he had the fall. He was now unable to speak, no mobility in his right side and nil-by-mouth. Gradually, he regained his speech, went onto a soft food diet and despite over three months in hospital with physio, he now has to be transferred with a Sara Stedy. He needs one level living, so can’t come home to our house and is in a care home after being transferred by the hospital. The home want him moved to their dementia floor. He’s only 60 and it is so sad what’s happening to him. I am trying to find solutions to move hundreds of miles to be near family. I have spine, neck and other joint problems. I had kept him safe for over 31 years and yet a team of people over a few days couldn’t do the same, nor call 111.
Alzheimer's Society
says
03 October 2022 at 10:29 am

Hello there,

We're very sorry to hear about your husband, it sounds like a very stressful and difficult situation.

You aren't alone, and we are here for you. Please know that you can always call our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you and provide specific advice and support. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line 

We hope this helps.

Alzheimer's Society blog team

Rebecca Oliver
says
12 January 2023 at 10:39 pm
Your love and care and support for your husband is truly humbling. I know you won’t believe it, as you think what you do is normal, but you are the most selfless person I think I have ever encountered. Your husband. Is so lucky to have you and I’m sure he feels it at some level. My dad has advanced dementia and we are at crisis point, my mum is so not coping after 8 long years and I fear the illness which has taken my dad will take her down with it. I am terrified for them both. But reading what you have gone though - and survived - has given me strength.. if you can go through 31 yrs we can do this as a family. Somehow. Thank you for sharing. S. Pls know you are a very special person 😔😌😌
Moira McCall
says
01 October 2022 at 10:43 am
I know john personally we go to same group for people with dementia. And yes I was diagnosed in July 2020 during the pandemic then saw a support worker 3 times. And a useless occupational thereapist. That has been it. No Doctor. Nothing like a Neurologist l,Psychiatrist, or Psychologist even a CPN. My gp when I rang to INFORM HER actually said she didnt know this, and was completely stunned and shocked. Now Im left to it and same story no one to do snything no help. Disgusting Disgraceful and Depressing for those afflicted and families.
Mrs Carole hunt
says
30 September 2022 at 8:51 am
My husband was diagnosed nearly 2years ago I get a little bit of help but it’s very hard the mood swings the depression the anger I am now living with a stranger and some days he doesn’t know who I am he’s so week on his feet
Alzheimer's Society
says
03 October 2022 at 9:53 am

Hi Carole,

We're very sorry to hear about your husband. Please know that you aren't alone, and we are here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line 

We hope this helps for now, Carole.

Alzheimer's Society blog team

Raymond Hills
says
24 September 2022 at 11:29 am
My wife has mixed dementia. We got lots of contacts from the memory clinic, help with attendance allowance form, as a veteran we get month,y visits from British Legion dementia nurse, our surgery has a social prescription team who hosts coffee mornings, Church groups provide coffee mornings, so we feel well supported.
George SWIFT
says
23 September 2022 at 12:56 pm
MY wife passed away 6 months ago. She was diagnosed with Alzheimer's in 2019 although symptoms were apparent two years before this. As with the plausible and sad comments made here, there looks to be a common theme ie lacking of support once dementia conditions are diagnosed. I have been invited to discuss matters with a Alzheimer's Society manager based in East Anglia. The point made above along with others- and my suggestions in how matters might be improved will be on the agenda. George
Steve Pearson
says
23 September 2022 at 8:18 am
It is chilling to read how many people, including us, have been been victims of our woeful adult social care system. We are fortunate in that our estimable GP has been a rock and got us some excellent support. Support that the psychiatrist we eventually got to speak with nearly one year after a 10 minute phone call that delivered the diagnosis of vascular dementia did not know existed in the Borough. We have heard recently that this service is to be cut, and so it goes on.
Hazel Holman
says
23 September 2022 at 12:03 am
I am a Carer for my husband who got Alzheimer's I try to get help but I find it hard to get the help I need. But I got to wait. Until they give me some help. I need a stair-lift to help my husband get up the stair because he finds it hard to go upstairs but so far no luck. Maybe I might win the lottery then I can afford to buy him one. i find it really hard
Alzheimer's Society
says
23 September 2022 at 9:57 am

Hazel, we're very sorry to hear this - it sounds very difficult. Please know that we are here for you.

We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you and provide specific advice that's relevant to your situation. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line 

It also sounds like you might benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia can share their experiences and offer advice and support to others who might be going through similar situations. You can browse conversations within the community or sign up for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

We hope this helps for now, Hazel. Please do call our support line if you need advice.

Alzheimer's Society blog team

June O'keeffe
says
01 October 2022 at 11:25 pm
Hi Hazel We got my mum a stair lift from our council Southwalk and we got it within 6 weeks I thought it was great hopefully you will get one for your Husband soon regards june
Gill
says
22 September 2022 at 7:24 pm
6 years ago my widowed mother was diagnosed with Alzheimers at the local clinic. We were given a leaflet and a prescription for some pills and then left. We have had no follow up appointments or contact from anyone - I was just left on my own to get on with looking after her. I had no idea what to do. I now have private carers to visit mum 4 times per day totalling 1 hour per day which costs over £1500 per month. I am a pensioner myself and life is very hard.
Alzheimer's Society
says
23 September 2022 at 9:39 am

Gill, we're very sorry to hear about your mum, and the lack of support. It sounds like a very difficult time.

We'd recommend calling our support line on 0333 150 3456. One of our trained dementia advisers can listen to you, get more information about your situation and provide specific advice and support. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia share their experiences and offer advice and support to others going through similar situations. You can browse topics within the community or sign up for free: https://forum.alzheimers.org.uk It’s open day or night and free to use.

We hope this helps for now, Gill. Please do call our support line if you need to.

Alzheimer's Society blog team

Paula Bullent
says
22 September 2022 at 8:09 am
My husband has had PD since the year 2000 and been in a nursing home since 2016. To date we have used all our resources on his care except the house I currently live in. When it was declared that once we had spent £86,000 we could apply for financial assistance I did and still there is no help, our case is still under review. He has less than £3000 and I have enough money to last maybe another year which will leave me penny less. Apart from this I did join your campaign to open up care homes during the pandemic which was an eye opener to the nation and his care home. However the damage done to his mental awareness and capacity for life can never be returned to us. At the moment I’m trying to get the nursing home to address their activities day to day with those in the same boat As you know Neurological set backs occur with many chronic diseases apart from Alzheimer’s. Music , mood, mobility, meals, meds-of these only the last two are offered. Staff shortage is usually blamed but relatives interaction , which helps a lot, is severely curtailed being kept to the residents room and the garden. With the winter coming on I worry about this, not only the money. Thank you for your concern for us.
Alzheimer's Society
says
22 September 2022 at 3:39 pm

Hi Paula, we are sorry to hear about the difficulties you and your husband are facing. We recommend that you get in contact with our Dementia Advisors as they will be able to listen to your worries and provide advice for you. You can reach them on 0333 150 3456 and find out more information (including opening hours) at: https://www.alzheimers.org.uk/dementia-connect-support-line.

Hazel Perkins
says
22 September 2022 at 5:40 pm
I can empathise with Paula. My husband was diagnosed with mixed dementia at the start of the pandemic and received no support at all or understanding by those mental health professionals who should know better. In February 2021 he went into a care home, and received no talking therapy and received no stimulation, as a result he rapidly went downhill. I was not allowed to visit him for months. I feel his treatment was appalling, in his twilight years he has been deprived of everything he enjoys. On top of this he has had to pay care fees using his life's savings, which are disappearing rapidly. These people need help urgently both mentally and financially. Dementia is one of the cruellest diseases, yet seems to receive less help than any other. Hazel Perkins
KW Payne
says
23 September 2022 at 4:52 am
Hi Paula. Sorry to hear of your situation. Empathise completely. After being diagnosed in mid 2021 the support just fell away. Losing my driving license didn’t help either. But keep investigating other support services and make your case known to the press etc. Very best. Dr K Payne
Alan Smith
says
21 September 2022 at 10:35 pm
Hi My name is Alan my wife was Diagnosed in 2016 the same thing happened to my Wife told she had Alzheimer's & Dementia since then all through the Lockdown we have just been left to get on with it all this promised help that MPs say the will supply like Boris Johnson promised Barbara Windsor is a load off rubbish.
Beverly Jackson
says
21 September 2022 at 5:36 pm
As a carer for a dementia sufferer, i can relate to these horror stories about being left to get on with it hardly any support, it's really awful.