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I was in Hong Kong in 2017, approaching retirement. I had had difficulty reading for some years, but the ophthalmologists I consulted found nothing amiss. Any issues were put down to aging. However, my doctor suggested seeing a neurologist who checked my reading then arranged for some scans, which he sent to the US where it was determined that I had Posterior Cortical Atrophy, a rare, visual dementia almost unknown in HK. Amazing that he had nailed it, and in only a couple of weeks, when he had never come across PCA before.
I had also reached out to a surgeon friend in London hoping he might know of an appropriate specialist here. He introduced me to a consultant neuro ophthalmologist, who again told me there was nothing wrong with my eyes but advised me to consult another specialist, Dr Gordon Plant at UCLA. I did so when I was next in London and Dr Plant confirmed that it was indeed PCA.
My wife and I returned to the UK in mid 2020. Everything was disrupted by the Covid crisis, so it took us some time to register with the NHS where we now live. However, we did, and I was seen by a psychiatrist and neurologist locally. But PCA is one of the rare dementias. Not even all neurologists are familiar with the condition, and we seemed to be starting all over again. So, my wife contacted our GP and asked if I could be referred back. This was arranged, and in 2022, we went up to London to meet Professor Fox and his colleagues and signed on with him there.
I am now participating in a trial for a new Alzheimer’s drug and come to London on a regular basis to be assessed and receive either the placebo or the drug itself. I have also participated in current PCA specific research programmes there.

So, a number of fortunate contacts and referrals has led me to one of the global centres of expertise in PCA and I appreciate very much the help and support being provided by this centre of excellence.

Roger

yes 100% there is still not enough awareness about alzheimers and dementia

2024, that means it’s been 10 years since Granfie was diagnosed with Alzheimers.

Granfie is the most kind and caring person I know. He has always been there for me and my family, and I have so many fond memories of spending time with him.

But Alzheimer's disease has robbed him of his memories and his independence (now living full time in a care home).
It is a heartbreaking disease that affects not only the person with dementia, but also their loved ones.

Although Granfie is still here, this year he’s missed out witnessing we get engaged, buy my first home as there is just no understanding there anymore.

I just wish I could have one last conversation with him as there’s so much I want to talk to him about.

It feels like grieving twice losing him to the disease and then grieving all over again when his battle will be up.

From 2017 onwards, mum started to suffer fainting episodes. They were not that frequent, but mum would know she was about to pass out and would tell us so that we could help her.

NHS doctors and hospitals thought the fainting was to do with mums heart and referrals were made, which included fitting a device under her skin near her heart to monitor it. However, after many years of monitoring her heart was deemed healthy. At this point dementia was never considered.

During August 2021, mum was diagnosed with Lewy body dementia and one of the symptoms of this dementia is fainting.

We had to go private to get this diagnosis because the NHS was overworked with terrible wait times, and very poor performance with regard to diagnosis. Government needs to wake up to this appalling state of affairs and do something about it.

The private doctor prescribed various medications, however, over time mum became less mobile and eventually bed bound, unable to walk or stand.

My dad cared for my mum at home with the help of carers who came in three times a day. Dad was amazing.

Very little central or local government assistance was available, despite both parents paying into the system for over 60 years.

During the last year of mums life she spent many short stays in an NHS hospital. Mum could not walk or stand, but one night she managed to get out of the hospital bed and she fell. Her face looked like she had been severely beaten up and she had a large haematoma on her forehead. Mum lost her front teeth too. The night we left mum prior to the fall she was very restless and the nurses were made aware of this. A member of the family wanted to stay with mum that night but the nurses would not allow this. Days prior to the fall we asked for an assessment to be done (DoLS) but this wasn’t actioned. The problem here was lack of staff, overworked staff and the hospitals absolute inability to safeguard effectively.

Lewy body dementia gave mum horrible hallucinations (fire, flooding, flies smothering her food to name a few) and in the end mum couldn’t swallow. Mum always knew who we were though, the dementia didn’t affect that.

Mum was a very homely person and was wonderful in every way, so kind, loving and giving. Mum is so incredibly missed.
Mum passed away on 19 December 2022.
Love you Mum ❤️❤️Brenda ❤️❤️

My Mother's story was one of a health care and social care system that was totally incapable of meeting my Mother's needs. While part of the overall situation was greatly worsened by the COVID situation, both the care she received at home and in residential care revealed fundamental inadequacies of both those who should have been caring for my Mother, and a system that was fundamentally inadequate and simply, too often, did not meet my Mother's needs, whilst still being paid for this fundamental inadequacy. Both health and social care must radically change in the UK, we need adequate systems and trained people who actually provide what they are being paid to provide.

It is hard to know what to do to help and to think about the future.
It is hard when my dad creates his own logic that is completely illogical.
It is hard to not become frustrated at the rumination of thoughts that my dad experiences.
It is hard when he only wants to eat boiled potatoes instead of the meal I have cooked him.
It is hard to not share any caring responsibility with my brothers because I am the daughter.
It is hard to be a wife, mother, doctor and carer.
It is just hard and I know it will get harder.

My mum has been living with dementia for the last 3 years.Last year her husband of 40 years,my stepdad walk out on her he was embarrassed with her forgetfulness.Dementia destroys familys

My late husband Roy had Parkinson's and Lewy Body dementia. Whilst he only had Parkinson's we had all sorts of NHS help; once dementia set in, we were thrown to the 'mercies' of Social Services.
There was absolutely no practical help; some well meaning people but no expertise or experience. 24/7/365 caring for 7 years was exhausting and toxic, sadly when my once much loved husband died at home all I felt was relief.
There was no respite apart from self funded care at £1500.00pw, on a carers allowance of £60pw .
I lost 10 salaried yrs of my 44 year teaching career and related pension contributions. Financial impact huge, emotional impact unquantifiable.
There was a plethora of advice but no practical help; it was like drowning in the middle of a lake with someone standing on the edge issuing instructions on how to swim.
The upside to the lack of NHS help meant that Roy died quietly and peacefully at home. Whilst Dementia is classified as a Condition rather than an illness there can be no serious help. Interestingly my husband's Death Certificate states: Cause of Death Dementia.