Share your diagnosis story

My Mam had vascular dementia.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared a lot of the sad things about this very cruel disease.
I have also worked for many years in the care home environment so have seen lots of different variations on the disease.
Love to all those currently living and dealing with this dreadful condition.

My husband died of this alfull disease 17yrs ago..there was not much help as they didn't make it so much on news .so very little help...so glad to see it's more help now..its such a sad thing to see.you loose them every day again and again.....thank you for trying to get more done ..kay

Both my parents were diagnosed with Alzheimers in 2018. My Mum was late onset and died of it 2 years later. It was dreadful watching her decline from a smiling, creative, generous person to a shell of her former self. My Dad had a totally different path with his dementia in that he knew who we were and could communicate his views and was pretty active until the end but again he was a shell of his former self but he knew what was happening to him and he got understandably frustrated by it. He died in 2022

In both cases we fought tooth and nail to get help from the doctor and so called Social Services. Everything was a challenge and it tore the family apart. There was very little real help out there. The most helpful people for us was Age UK even if it was just someone we could talk to about the situation. Luckily we were able to fight for them and could employ private carers ourselves. Those carers helped us in so many ways, I don't know what we would have done without them.

Dementia is a wicked disease for everyone involved.

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.