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Mum was diagnosed 6 years before she died. She didn't get any help at all and in the latter stages we as a family really struggled to keep her quality of life as we had hoped for her. Understanding of her needs and basic input was zero from the GP and community nurses. They failed her terribly and at the end I had to plead, scream and fight for essential meds to make her last days comfortable and dignified. Please prioritise dementia in the community and make sure end of life for dementia patients is carefully discussed with families.

We had a terrible time. It still distresses me to think about it. My Mum was on medication before she was diagnosed for Type 2 diabetes and for her underactive Thyroid and other things.

I am not sure at what stage she was diagnosed with vascular dementia but because she was not remembering to take her medication, the doctor kept prescribing her with higher doses. I live in Surrey and she lived in Lancashire. So it took me a while to understand what was happening and to sort it out with the doctor. Eventually we got a system where carers came to her house to make sure she took her medication and her prescription could be reduced.

I found a private carer to help her and be a friend to her during the day to be sure she dressed properly and ate properly. Mu enjoyed her company and when we (her sons and daughters) visited her we were able to enjoy our time together without worrying. We set up a Power of Attorney in the early stages when she still had capacity and it was reasonably easy because prior to being ill she trusted all of us.

However, my brother decided that what we had set up was not right and without prior discussion and some weeks further down the line when Mums capacity was worse, he took her to the same doctor who decreed that Mum had the capacity to change our arrangement, got her signature and revoked the one for us all (jointly and severally) and got her signature to sign the whole LPA over to him.

By the time we realised, the whole thing was set up and we had to go to the court of appeal. I found that the system of the whole court of appeal was broken. It was unable to protect my vulnerable mother from my brother making decisions for her that were in his best interest and not in my mothers.

This is a very short version of the whole sorry saga.

But our experience was that the social services had no authority, the Court of appeal was so slow and beaurocratic that it even lacked common sense and took to long to help her and the doctor was able to be manipulated and clearly to the rest of us, simply not assessing Mums capacity properly.

Her 3 other son and daughters had no authority to do anything. Mum did not get as good as she could have got as a result and would have been horrified at what was done.
My Mum was a social worker all her working life. She trusted the system to work for vulnerable people.

So I think doctors need a better system to be sure they diagnose appropriately for the whole care system to work properly in the care of elderly people with dementia.

Sadly my husband was a vert healthy fit man. Who went into hospital to have a shoulder replacement opp. In 2014 in the early hours ofthe same day the police picked him up with his bag. They contacted me to ask what they should do. He was totally traumatised. This was dreadfull. After sometime it was obvious to me he could not retain much. We had our last holiday abroad in 2015. he happened to say please don't leave me. A very
Strange thing for him To say. He was feeling totally insecure and obviously
Scared. We got back home and had the test carried out at the hospital which
Frank found very humiliating and told me never to take him thier again.
Things got worse from then on he restrained me by the wrists. 1st ever time
He had done anything like this. He was admitted to a mental hospital and
After 3 months in hospital he lost all his communication skills. He was drug
Up with to the hills. He was just like a zombi, tragic. After 2 yes in hospital
Then went into a nursing home, I visited every day to help feed him. He
Did still know me. But if I had the choice I would have given him a pill and sat with him to close his eyes. But I was not able to do this for him.
Dementia is an terrible illness. Sadly love ones have go the same if not worse.They have to find a cure ASAP as more and more people are being diagnosed with this. With all the technology they are using..

My mother, incredibly creative, weird and wonderful, cognitive decline began subtly, forgetting small things and becoming more disoriented. Despite efforts by her GP to secure her a proper diagnosis, initial hospital visits failed to investigate her symptoms.

Suddenly, she was screaming and never sleeping saying she was in pain so I moved in. Over the next few months, we would take her to A&E, but they found nothing wrong. I was completely drained, and I started having my own mental health issues.

The community mental health team came and diagnosed her with Alzheimer's after a brief chat. However, I was left to navigate a complex system on my own. When social workers discovered that she would be self-funded for her care, they pointed out that no care home would accept her in such a state, leaving me overwhelmed and unsure of where to turn for help.

I tried to keep my mother in her much-loved home and hired a live-in carer who quickly left due to the challenging nature of her behaviour. I moved back in and the screaming continued. Finally, a psychiatrist suggested that she needed the support of a Team in a care home. I did find a care home but she was terrified and miserable. After an incident where she put herself and other residents at risk. She spent time in a psychiatric ward, where it was informally acknowledged that she may be on the autistic spectrum, but it was too late for a diagnosis because of her dementia. Eventually, a great care home was found, yet her mental health issues still continue.

Her story highlights the urgent need for a more thorough and compassionate approach to dementia care, ensuring that individuals like her receive the support and dignity they deserve in their later years

My Granda was diagnosed in 2017. However, that's basically where the information/assistance ended until the disease severely progressed. We were not advised what we were to expect in the future, what was out there to assist him or us as a family. All of our information was from our own research on the internet. When you hear dementia/alzheimers without the correct knowledge you just think memory loss, forgetfulness which is awful in itself but when you read this is a terminal condition, it doesn't fill you with much hope.

Reading the stages online and realising your loved one has progressed to the next stage is heartbreaking. More needs to be done to raise awareness and give families assistance. What medication can be used to help slow down the progression/reduce some of the awful behaviour changes which come wuth this disease. What assistance is out there to help the person diagnosed to get out and socialise or give their loved ones a bit respite.

For my Grandma she became my Granda's carer, but this meant she struggled to socialise as she was unable to leave him during the day to attend afternoon clubs where she used to socialise with friends as we were working so couldn't go and sit with my Granda. As a family we felt unsupported until the very end of his life but still even finally being assigned an adult social worker we still didn't know where to turn or what help was available.

Alzheimers is the cruelest disease in my eyes, as you lose the person you love twice, watching them change from what they were to the shell they become is truly heartbreaking but more needs to be done to aid the person with the diagnosis and their family. More awareness around early signs and early testing leading to an earlier diagnosis is vital. Most people just tie forgetfulness with old age not realising that's not always the case.

My greatest fear now in life is another loved one developing this disease, with cancer there is treatments, with physical disability their are aides to keep you mobile/active, but you still keep the person. With alzheimers it takes everything and all you can do is watch.

My wife, Eve was diagnosed Approx' 11 years ago. Eve knew something was wrong and kept saying : I think I am loosing it: We went to our G.P. He referred us to an Alhiemer's specialist where the diagnosis was confirmed. Eve and me coped very well untill lockdown. Eve started to detrioate through this time. Christmas 2022 she became much worse, Confused did not recognise me, family, freinds, her sons and Daughter, later the same year she developed double incontinence. All this time I was her main carerer. In August 2023 she was aditted to a Care Home. I now live alone, life is now very sad. This is a living bereavment. Early diagnosis is so important in order to enjoy what time is left.

I was slightly confused and of course when u have Dementure
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just look at u with blank faces as much as to say “ u have got it and there is nothing we can do about it other than your daily pills which we have no idea if they are doing good or not, but we know each day we r fading away
I just pray they won’t put me in a home with people worse than I am. God Bless u all!

My lovely mum passed away in January 2011 from dementia, it was a dreadful time to see her go downhill over the years from being a capable lady and being to do most things for herself to not being able to do much at all, we as a family tried to look after her at home but eventually she went into care, but kept having falls and wondering around not knowing where she was, so the decision was made for her to go into residential care,where she stayed until she passed away in 2011, There were challenges that we had to overcome and she was well cared for, but towards the end of her life she didn’t know who any of us were. I would like to see the government act and make changes to help people like my lovely mum who are suffering from dementia.