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My husband was diagnosed with Early Onset Dementia at the age of 59, 4 years ago. We are fortunate to be under the wings of an NHS Research Team, who made the specific diagnosis of Posterior Cortical Atrophy (PCA). The Rare Dementia Support organisation have provided a wealth of information around this condition, which has helped me, as my husband's full time carer, and friends and family, to support his specific needs and as to why he does/can't do certain things, and what is likely to happen in the future. Had we not been under this vital Research Team, I can't begin to imagine how isolated and lonely we would be with very little outside support. To obtain an exact diagnosis with referrals to various support groups is an absolute must for the wellbeing of the sufferer and the carer.

My husband, aged 64 had been feeling anxious about forgetting how to do parts of his job and spoke with our GP. He was sent for a brain scan and eventually had the memory test at the local Memory clinic. This happened in 2014/15. It was quick and to me shocking. Tom took it well and was happy to know something was not right. At this point he didn't want to start taking any drugs, he didn't totally understand how they could help. He was then sidelined with MCI until I took him back to GP two years later. The memory team then came to our home and persuaded him to accept help from Memantine. We are now 9 years since diagnosis and his downward spiral is just starting.

My partner is 57 and was diagnosed last July the day before my birthday, I literally felt my blood run cold when they told us. No one else in the family has it so we’re at a loss as to why he has it. We’d been trying to get a diagnosis for 3 years but they kept saying anxiety and depression. He tried to go back to work 3 times but couldn’t take in new information so the financial implications have been massive. I had to fight for the CT scan that then gave us the devastating diagnosis. We have two boys age 11 and 16. I now care for my partner, two children and work and run a house.

We have a mortgage to pay and bills so I have to keep working. If we had a Council house maybe it would be easier as we’d get help with the mortgage. We are trying to give our boys as normal a life as possible whilst also making sure my partner has the best quality of life, it’s really difficult. We’ve had a bit of help from admiral nurses and Carers Leeds but ultimately we’ve been left to it. Luckily, we have family and friends so I’m grateful for that. My partner is ok at the moment just confused forgetful and loses things constantly. He’s also forgotten how to fix the car, do any DIY (which is really stressful as he keeps trying!) he was so clever and fitted our kitchen and bathroom and worked as engineer for 15 years but all that has gone now. He also had a episode of delerium in January after breaking his leg which was terrifying for him and me. Thankfully, it only lasted 4 days and he’s stable at the moment. It’s the most devastating illness and I wouldn’t wish it on anyone. I don’t know what the future holds for us now so just live each day as it comes.

When My wonderful wife began exhibiting signs of dementia around eight years ago. Her memory issues were often overshadowed by her osteoarthritis. When the consultant neurologist recommended that she be referred to the Bristol Brain Center, nothing happened until a year later. Only then because she had fallen and brocken her leg. The doctor caring for her noticed her confusion and chased up the referal. When she was discharged from hospital we finaly got the appointment and diognosis of Alzhiemers desiese. We did then get a full attendance allowance but not a council tax reduction because our son was living with us. The only home help that we had was when the district nurses came to treat her pressure sore.

My mum was diagnosed with dementia in 2018. She had vascular dementia she was 85 when diagnosed and died in 2023. I noticed things weren’t right and took her to the doctors and asked them to discretely test her they did and she was properly diagnosed by the memory clinic. She never accepted it and the medication given she took for one day and no more after that. She was advised to wear hearing aids at this would help but she refused to wear them and this did not help. I managed her at home during lockdown keeping her house and mine. I got carers in at first once a day and then progressed to four times. She wouldn’t have ready made meals so I would have to cook for the week and the carers would cook the potatoes and fresh vegetables.

She kept falling and after a spell in hospital it was decided to put her in a home. She was upset and kept wanting to come home. I would go in everyday and on Sundays took her out for her usual day out. Just driving her to various places and to my dads grave. In 2023 she spent 6 weeks in hospital after becoming unwell. She had, had a silent heart attack. She was very poorly. She also had macular degeneration and lost her central vision. Treatment in the hospital was diabolical, finding her in her faeces ;nurses trying to feed her while she was asleep and giving her her medication. I gave all the information about her when she went into hospital and it was just ignored. Complaint made to hospital regarding treatment. No care at all. When she came back to the home she never got out of the bed again and just deteriorated. Overtime I requested GP to visit they always refused and asking me “what did I want” there is no empathy from anyone in hospitals or the GP’s. My mother retired from work aged 75 and deserved better respect than she got from the professionals. Thankfully I was with her when she passed and it was very peaceful.

My dear Dad had dementia, his condition getting worse. So I went to see my dad at his home, he was not there, he had been taken away to a home . No one had told , I was heart broken.

My husband was showing signs of dementia so we saw our doctor who agreed and was arranging for him to see the neurologist for a diagnosis. That was last July 2023. If his appointment is not put later in the year again. he should see the nhs specialist in august2024. Although we are both in our 80’s we, like many others, have never used private healthcare because we believe in ‘care for all in need’ but feel we have no choice but to go privately. Alan received a diagnosis of Parkinson’s although he is now having to be fed and is permanently in a wheelchair while we are still waiting for an NHS diagnosis .