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We got a diagnosis very soon after noticing a change in my late husbands behaviour and memory .he was put on medication to help slow it down and it did to start wit...

My mum had been forgetting places,...

Our story started just before Covi...

My story is about my lovely mum Ch...

My husband was diagnosed with vascular dementia in November 2019. Since that time I have watched my clever, University Professor deteriorate day by day. This awful i...

My mum had dementia when I was in my twenties, it was never diagnosed my anyone it was just like she forgets things. If only I had known I would have asked her a lot mo...

My mum was diagnosed with mixed dementia at the end of 2021, although in hindsight we first noticed the symptoms at the end of 2019. During lockdown, we were only able ...

My wonderful loving mum, who had ...

After 7 years of caring for mum she died. I never got a formal diagnosis as mum refused to re attend the Memory Clinic, after an initial MCI diagnosis. I suspect this i...

My husband was diagnosed with Altz...

My brother had Alzheimer’s, died Boxing Day 2022, it was sad to see his decline but his wife managed to keep him at home, my wish is that there is more help for carers ...

This is slightly of point, but i work for a building society and come across dementia customers daily , our branch is really very good at identifying any transactions o...

We got a diagnosis very soon after noticing a change in my late husbands behaviour and memory .he was put on medication to help slow it down and it did to start with but after a year on so he deteriorated and he became a lot worse .so i cared for him for ten years untill he just had to go into care in 2000 he became worse he didnt know me or family members.he sadly passed away on 2021.just the most awful illness. We need so much help with this disease. Lets hope we get it soon

Barbara

My mum had been forgetting places, people, things and dates, getting worse at the end of 2012. We asked the doctors to test and it was finally carried out by a healthcare worker in May 2013, at home, with the additional help from an Age Concern representative. Mum was not determined as having Alzheimer’s, even though she was deemed to be ‘not herself’. Mum was getting more forgetful and confused. Skip to October 2013, Mum was tested again and we were told that it was ‘probably’ Alzheimer’s. This was confusing for us because it was as if no one wanted to be held accountable for the diagnosis.
The Memory Clinic staff came around a couple of weeks later to see Mum and we finally had the answers to why Mum was not quite Mum any more.
It allowed my dad, her husband, to think that he was not being silly and thinking that he was doing something wrong. We could now investigate what we could do ourselves and the support we can get from different organisations.
It would help if there is clearer information on how people with dementia can be supported both physically and emotionally. It is hard to find out what help is out there locally. We did not know about the community groups available and which groups can also help the people caring for the person with dementia.
It is unclear if the dementia person is to be supported by local authorities or is left to use private companies because of the threshold for financial assistance.
The loved ones become carers over time and they do not realise that they are not entitled to the benefits as carers. This can have a significant burden on their own health. They are now doing more chores taking over from the person with dementia. The chores become overwhelming because the carer relied on their partner to do their normal everyday tasks eg personal care, housework and financial paperwork.
Respite would help because the person with dementia can be cared for a period of time whilst their carers recharge.
With an earlier diagnosis, the person with dementia may have a different experience and not be as confused and scared if they are guided as to what is happening and what may happen in the future.

Louise

Our story started just before Covid 2019 when our mum was just 58 years old.
We noticed she was forgetting things at work & at home.
She had noticed it herself and was very good at covering it up at first!

When my sister & i tried to talk to her about it she was very defensive and became very withdrawn and lost all of her confidence!
We were on the nhs waiting list for so long these changes with her memory, planning & organisation had left her disabled with no Diagnosis!
This left her un employed and unable to claim benefits.
Her and her husband became very depressed and struggled to get by financially and emotionally.
We decided to pay privately to get a memory test only to be told after paying for the test that mum was too severely depressed to be tested thoroughly- so still no diagnosis!
This went on over 4 years! Until we eventually got an nhs diagnosis and only at this point could mum begin to come to terms with her diagnosis and we as a family could begin to support her the way she needed!
Earlier diagnosis would have helped us as a family to support her earlier!
She didn’t know or understand what was happening to her and we couldn’t answer her questions! We were all so scared!

We have written so many emails and made so many phone calls to get support!
I lost my job 😢
My sister had to change her job!
Mums husband still struggles with his mental health!

The stigma around the word Dementia is still so very damaging!

My sister and I have educated ourselves and have given up so much of our lives to look after mum the way she deserves to be cared for!

I really want to see changes and education is key!
My daughter and my grandson have learnt that mum is different and needs more help than she did before and they ask questions!
Society’s questions need to be addressed.
You can life well with dementia!
It’s ok if you get things wrong and it’s ok to ask questions!
I also really want to see more specialist services for young onset patients like my mum too! 💙 xxx
Thankyou to everyone who supports the Alzheimer’s Society 💙

Lucy

My story is about my lovely mum Christine who died on October 31st from vascular dementia and Alzheimer’s.
We’d suspected mum was ill for a long time before she was diagnosed. I phoned her surgery countless times but was told without mums consent I couldn’t see her doctor and mum wouldn’t let me go and see her doctor with her.
Eventually I spoke to a wonderful receptionist who spoke to the doctor who agreed to come and see mum at home. This all happened in the midst of COVID.
The visit from the doctor was unsettling. It’s a very long story!
Mum was sent for a scan and that’s when we got the devastating news of her illness.
My sister, myself and our two boys took it in turns to see her daily but it was overwhelming as poor mum didn’t but did know that something was wrong.
Fast forward to a few months later, she fell and broke her ribs and we moved in with her to look after her, after 3 days she was taken into hospital.
At the hospital it became apparent she wouldn’t be able to go home. None of us had money, property or savings for private care.
Mum was then moved to a home without any discussion with us as a family. We’d never been to the home and mum had no idea it was happening. Because of COVID we weren’t allowed in her room. We could see her through a plastic partition or in the foyer or not at all if there was an outbreak. We had no idea what was happening with mum and there was hardly any information about the home online. Mum thought we’d abandoned her which I suppose we had. I will always feel so guilty about it.
Eventually last may she was so ill we insisted that they get an ambulance for her. I’d requested for a doctor to see her the week before who didn’t seem too bothered about her.
At the hospital they discovered she had a very serious kidney infection, a lower abdomen infection and she was severely dehydrated and constipated.
Whilst in the hospital we were told that the home weren’t taking mum back.
She remained in the hospital being moved from ward to ward till October . We made the decision that there was no point keep treating mum for infections etc as it was prolonging a life that was very obviously painful and distressing.
She was moved to a private care home for palliative care and died the following week.
We need clinics specifically for dementia/Alzheimer patients and for the families and carers of patients to be able to seek the advice and help they need to cope with these horrible illnesses plus early detection is essential .
I don’t want anyone to go through what we did , we didn’t know how to talk to mum about her illness and I wish she’d had more help.

Joanna

My husband was diagnosed with vascular dementia in November 2019. Since that time I have watched my clever, University Professor deteriorate day by day. This awful illness has taken everything from him, his dignity, his ability to do most everyday things for himself and most importantly for him his brain which was the most important thing to him. It also had a huge effect on me as his sole carer my life has changed completely. After his diagnosis I found it very difficult as I had no understanding of what it meant and no idea how to deal with it. There is no follow up and likemost unpaid carers I guess I ‘learnt on the job’.
This awful illness affects whole families and as a family we support the Alzheimers Society in any way we can in the hope that Alzheimers/Dementia can be given the recognition it deserves and hopefully sooner rather than later more money can be invested in order to do more of the very needed research

Diane

My mum had dementia when I was in my twenties, it was never diagnosed my anyone it was just like she forgets things. If only I had known I would have asked her a lot more about her life we obviously thought she would have years to answer questions.but it didn’t happen she just got worse forgetting things and people she new at the end she didn’t even know who I was kept asking who I was. This terrible illness is devastating. My mum was just left to get on with it.

Jean

My mum was diagnosed with mixed dementia at the end of 2021, although in hindsight we first noticed the symptoms at the end of 2019. During lockdown, we were only able to speak on the phone and mum always sounded reassuring, but when we were finally able to meet up, Mum's memory had declined significantly. Due to Covid, I was not able to get her to see a doctor until the beginning of May 2021 and, during the appointment, it became apparent that she had not been taking her medication for her other medical problems, as she had not remembered to order a repeat prescription since the beginning of the year. Mum was then referred to the memory clinic and scored low on the cognitive assessment, not even able to remember how many children she had, or what their names were. I began to visit mum at home more often and was soon visiting daily to cook her a meal and ensure that she was taking her medication. She then fell while out walking, breaking her wrist, so came to live with us and the extent of her dementia became shockingly apparent. I had to give up most of my work, as she needed almost full time care. Besides being a financial issue, it affected my relationship with mum. I began to resent her and hated myself for feeling that way. Eventually my sister and I made the difficult decision to move mum into a care home. We sold her flat, which has funded her care, and she is still going but slowly fading away. If we had had a quicker diagnosis, we could have got her onto the medication which might have allowed her to remain independent for much longer and possibly even allowed her to retain those memories of her life which disappeared so fast. Surely once other possible reasons for the symptoms have been ruled out, diagnosis could be so much quicker. Luckily mum is happy, but dementia is cruel to those around the diagnosed person and places burdens that are beyond those for any other illness.

Janet

My wonderful loving mum, who had an OBE for Services to Nursing, was troubled by her own memory. As her carer - she had cancer and I had the LPA for her medical needs - I tried to get a diagnosis from her GP. Even with my healthier levels of energy, it took over 12 months. Nothing seemed to make a difference to her GP practice of 40+ years.
Even after her diagnosis, the GP would call Mum about other things like Covid jabs, expecting her to remember the conversation. It took months for them to call me instead.
Mum was dreadfully sad about how uncaring they were.
When Cardiff City Council wrote to Mum about the Council Tax discount, the letter was headed “DUE TO YOUR SEVERE MENTAL ILLNESS….” She was very upset by that.
Awful that publicly funded organisations behave with such inhumanity.

Gwynan

After 7 years of caring for mum she died. I never got a formal diagnosis as mum refused to re attend the Memory Clinic, after an initial MCI diagnosis. I suspect this is why so many cases go undiagnosed. When her Dementia was more advanced what would have been the point of a diagnosis. Mum had Vascular Dementia for which there was no medication, I stumbled into a local carers group and I struggled on. My case is I suggest quite common. Getting an early diagnosis is not an easy process in the above circumstances, whatever it’s value might have been.

Mark

My husband was diagnosed with Altzheimers and vascular dementia in 2020 after visiting the GP who treated him for depression initially as he kept breaking down and sobbing. He had hidden his symptoms for several years and it was his poor memory that I just put down to his age, he was 74 then. But he began saying there's something wrong with my head and then came the memory test which he failed significantly. Once diagnosed he was put on memantine which helped a little. But gradually he was unable to do simple tasks, when we were with friends he didn't join in the conversation. Then every morning he held his head in his hands saying "when's it going to stop"
We heard about the Alzheimers group from the hospital and began going every 2 weeks. That was very helpful talking to others going through the same things and the girls running the group were able to give lots of information about dementia.
I also had an Admiral nurse who visited monthly and at the end of the phone should I need her. She was brilliant gave me lots of information in how to handle different scenarios. I also had support from family and friends as both our children live on the opposite side of the world.
I would like to see earlier diagnosis and maybe GP's need more training in dementia. The most support I received was from the 2 charities I mentioned and they need more funding especially the Admiral nurses. They are not available across the UK, I was lucky to have mine. I would like to see more funding for research, better medication and help for carers. A long drawn out death is horrendous to watch and for the patient to experience, their head is being battered with mixed memories they can't work out, and carers feel helpless. Even 5 weeks in hospital was a nightmare for him as he was continually trying to escape.

Margaret

My brother had Alzheimer’s, died Boxing Day 2022, it was sad to see his decline but his wife managed to keep him at home, my wish is that there is more help for carers of this horrible disease.My sister in law has it too but she is in a home, she is only 63. Sp so sad.I hope one day they find a cure.

Janet

This is slightly of point, but i work for a building society and come across dementia customers daily , our branch is really very good at identifying any transactions out of the normal . Whilst we really help they may go to another bank where they dont know them etc
power of attorney helps but is expensive and may not be suitable for all, so we need greater awareness , what can we do to help, who can we contact etc
We all see the deterioration in our loved ones and we must make them safe

Debbie