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I actually made contact with ReCognition health who conducted a DNA test which revealed I had APOE 3 & APEO 4 as mum mother and grandfather had both suffered fro Alzheimer’s. I was then offered a place on a drug trial. Have over the past 5 years trialed 4 different drugs, some of which might have been a placebo dose but one at least was the drug and is similar to the 2 being assessed by NICE. Mine has been halted because it is so similar to those being asssed but didn’t have such a high positive result.

Once I recognised that my wife was having problems remembering what had happened only days, hours ago and found counting difficult i asked her sister if she had see changes in her, making that first decision to get appointment with our GP is the hardest thing to do and telling your wife she was having memory problems was met with disbelief and anger towards myself and the GP. You are never prepared for the the hard times ahead and can feel isolated. Any one caring for someone with dementia needs all the help and advice you can get and never feel afraid to ask .

Thankfully, we did not have any challenges getting a diagnosis, the process was straight forward and carried out in a timely manner. My dear mum was diagnosed with mixed dementia/alzheimers, she was initially referred to the memory clinic by her doctor. After having some psychology & memory tests, my mum then had a brain scan, which revealed that that she had vascular dementia/alzheimers. The diagnosis was a horrible shock, my mum's nickname at school was 'the girl with the photographic memory', she had a brilliant brain and worked for the NHS as a Nursing tutor. Throughout her nursing career my mum cared for many people affected by dementia.

The diagnosis was very important because, we finally had an answer, and understood why my mum was behaving the way she was, which was totally out of character, and other erratic changes in her behaviour. It was also important because we could look at the medication that was available and, plan for the help & support that my mum needed. The diagnoses was also important because it helped me to deal with the inevitable changes that would need to be made in mine and my mum's lives and, to be able to plan for the short, medium and long term regarding her care needs, and sort out her housing, finances, and my mum's safety regarding driving, taking medication ect.

The changes I would really like to see for people affected by dementia are:
-Early diagnosis for 'everybody' regardless of their postcode.
-Voluntary- Basic comprehensive training for 'Unpaid Carer's' (could be carried out online) such as lifting, dealing with challenging behaviour & incontinence, safety & danger in the home i.e Gas, Rugs, Obstructive Furniture, the possibility of your loved one wandering, how to better communicate with your loved one, ect
-Diploma level, trained carer's specialising in dementia care-to provide them with increased wages, good career opportunities, their help/support is very much needed for care in the home and in care/residential homes
-Many more admiral nurses, there aren't enough of them, they are a much needed &valued service.
-24/7 Admiral Nurse help line.
-Much more help & support after diagnosis, such as a ONE STOP BASE/SHOP, a CO-ORDINATED SERVICE, instead of having to navigate through numerous different Government agencies/departments, NHS, Dr's Surgery, Mental Health services, Social Services and the Local Authority, ect, having to deal with endless form filling & repetition, in an already devastating, extremely stressful, life changing diagnose and situation.
-Much more-'Financial support & help' with extremely high care costs, there needs to be a 'Regulatory Body' (if, there isn't already one), to safeguard the financial costs of care to the person with dementia and their loved ones in the home and in care/residential/nursing homes.

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