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My Father's assessment took place during covid. The process from the first visit to the Dementia Assessment Team to diagnosis took 14 months.
We wanted a diagnosis so that we could access support but sadly following a diagnosis of Lewy Body Dementia we were discharged from the care of the Dementia Team and left to our own devices to access Adult Services to get the equipment and adaptations in the home my Father needed, and to source care for him.
We really felt abandoned, such a very different situation from when my mother had cancer. Fortunately I am a retired nurse and midwife so had insight and knowledge into accessing services. There needs to be good support and care after diagnosis, talking to other families I am aware that our situation is not uncommon.

My wife got a diagnosis in 2016 she was 62
The biggest challenge was because she had MS the doctors thought her symptoms were because of the MS
After her diagnosis we saw a doctor once and the dementia nurse once and they said because of her other conditions there was nothing to done
When she became ill and was admitted to hospital the nurses on the ward admitted they did not know how to act when she showed signs of her dementia
She passed away in 2018
The simple facts are that there is no support in most case after a diagnosis and families are left to deal with alone

i cant tell you my story in 250 words.... it starts around 2014 and perhaps earlier, i could write a book on my experience alone as a carer to my wife... never mind...

I am very lucky to have a GP who sent me for a brain scan very quickly and then to a consultant as soon as we had the results but I know that not everyone is that lucky It was very reassuring to get the help that we needed and helped with coming to terms with a dementia diagnosis
I think that everyone deserves the same level of care and should get it automatically

With my dad we had very quickly a clear and precise diagnosis - because it was hereditary my mom, who was with him at the time, was advised that other blood relatives might want to be tested. I have two cousins on my dad's side who both chose to be tested (and were negative). I decided not to be (no children and none intended!) and although I saw my dad's neuro consultant several times he never asked me if I'd thought about it.
With my mom, she kept getting urine infections and delirium. Initially, I panicked but was reassured it would wear off as the infection cleared. It did but then the next time it lasted longer, and the next... One consultant did say that very frequent delirium often did seem to lead to dementia (and I now know some research at Newcastle University. has backed that up) but they still insisted it was 'just' delirium, until one day I found some of her hospital notes with a consultant neurologist saying "She is also recorded as having a diagnosis of Dementia' although I'd never been told.

Hello, my story is about my husband who sadly passed away 18 months ago from Alzheimer’s. 8 years ago I noticed small changes in John, a bit forgetful, mis pronouncing words,saying he didn’t know what a Lasagne was, asking me to choose his food when eating out.He has family history of dementia, mother and both grandmothers.We went to the GP who did the usual test,name,date of birth. What year it is,PM etc.Doctor put it down to “ his age” I disagreed had known John all my life.He asked what I wanted and after some discussion got memory clinic appointment ( eventually) John scored 75. Next appointment 6 months later, score down significantly. MRI scan etc, inconclusive as he didn’t remain in the machine long enough.Diagnosed Mild cognitive impairment.Months later due to a further change in his behaviour appointment with consultant who then diagnosed Alzheimer’s. On a Cruise a month later wouldn’t get off the ship. I was woken early hours of one morning by a knock on the cabin door,Johnhad got up for the toilet and gone out into the corridor and was luckily.y spotted by the man in the cabin next door. After the Cruise we stayed in a Hotel for a few days and had to put a chair against the door to prevent John from any more wandering. Things put into place, Admiral Nurse, memory team but the jewel in the crown was The RAF Benevolent Fund that provided 12 sessions of counselling for me, a telephone buddy and outings for John to a local RAFA meeting for him and any of his old forces buddies. Covid hit. That was it, all support by phone,with very little advise. Admiral Nurse told me to keep a diary of what triggered Johns nowincreasing out bursts of violent tempers usually brought on by me not wanting to watch certain programs on TV. He locked me in the conservatory,threw bedding and close down stairs and told me to stay there,threatened to throw me down stairs,left bruises on me and threatened me with a knife. Once restrictions were lifted the Admiral Nurse came 3 times,hardly talked about John,read my diary and said in future call the Police with violent episodes.She closed to me shortly after this visit.2021 friends took us out for lunch and John seemed to be more insecure,when we got home he was rambling and worrying what we could do for the rest of the day. I rang my daughter who rang 111 they suggested A&E. once seen by a Doctor was suggested he might have the start of a water infection,bloods etc taken and sent home with Anti biotics, next day behaviour changed again and son took him back to A&E after more tests and discussion with my son they decided to keep him in.There was no specialist Nurse to care for him ,he became more confused and was wandering.Sometimes a Security member of staff would keep an eye on him and one time the Hospital Librarian “minded” him.He managed to leave the Hospital and the grounds and try to make his way home. Luckily a Nurse going off duty spotted him and rang the Police who returned him to the Hospital. A meeting was held with my son and daughter in law and it was decided that he would not return home for safety reasons would need a Care Home. A choice of 3 given with travelling distances ranging from 40 miles to 85 miles. Transferred to his new abode and we were told to give him a couple of weeks to settle in before we visited.Lock down on the home due to Covid outbreak,didn’t get to see him for over a month.He had latched on to a Nurse who he followed around,was angry when he saw me and my son. He had tried to get out of the place on many occasions and had to be diverted after each of our visits.We. Complained many times about clothing and personnel items that went missing, all to no avail during the year he was there,he appeared on many occasions to be unkempt,not shaved,dirty clothes his bare feet shiney black. We were told that John was non compliant and there was nothing they could do. He became ill and they asked my son to go in and take him to Hospital,son was on holiday so sent him unescorted in an ambulance.He stayed at the Hospital 24 hours until the Hospital could provide him with an escort. Result from the Hospital was his Prostate Cancer had returned and he deteriorated further.More complaints to a higher authority to get him moved to a Nursing home 5 minutes walk away.Not with out its challenges from the original NH. John moved a year after his first placement.He passed away there 3 months later,with lots of love and care from the staff. They were truly amazing and couldn’t do enough for him and us as a family.I checked on the first care homes status after our complaint and was horrified by the unannounced visit from inspectors and their finding. The home had mainly Agency staff with no dementia training.They fell short in all aspects according to the report. I feel early diagnosis is essential for not just the subject but their families who should be informed as a family of what to expect, the various stages of Alzheimer’s,help that is available for us all.I feel very strongly that we need designated trained Alzheimer’s/ Dementia Teams in Hospital at GP Surgeries, like MacMillan Nurses.Resources need to readily available and families shouldn’t have to look for private support, the Government doesn’t seem to acknowledge how people and their families are affected by this dreadful disease, it needs to get its finger out and start to get a plan in place.

Mum was diagnosed with vascular dementia in 2015. For much of the early years they were both somewhat ‘in denial’. They had very little support from the dementia care service but as much as possible from myself and mainly my wife as I was working full-time in London.

To cut a long story short Mum is now (and for the past year) placed in a very good care home (Silversprings in Thorrington) and is at stage seven (1-7) of the global deterioration scale so has very severe cognitive decline and no metal capacity. Both my parents worked all their lives as a marine engineer and a mental health nurse. They managed to raise me and my sister, paid off their mortgage and somehow saved £140,000. Most of their hard earned savings have now been spent on the care home fees. We are about to request local authority support. If Dad passes before Mum their house will be sold and the funds used for Mum’s care.

Dad’s mental health as a lone carer through the covid pandemic has too declined, he has completely lost his mojo as a highly social member of the Thorrington and Brightlingsea community. Caring for Mum at home was absolutely a full time 24/7 job. We don’t really know how hard this was.

In 2021 and 2022 our family actively organised two lovely bike rides through constable country and raised funds for Alzheimers research and the Local volunteer based Dementia Support Group in Wivenhoe. The community support was amazing.

I’m sure you are aware Alzheimer’s is devastating for families as a whole. The last 10 years have been horrible for both my parents, there are many many lessons to learn and in my view our society needs to change, and change quickly to deal with an aging population and the increasing prevalence of dementia.

Heathcare - it’s just not at all comprehensive , barely visible in my view for patients and carers. Once diagnosed we had a bit of advice and no meaningful follow up - you are pretty much left on your own to deal with a very serious health condition with inevitable mortality. GP’s need to flag support for carers in particular.

Finance - a debate needs to be had. Do we take the roulette route we have now or do we all pay.? Inevitably this would be burden on the young for the old but the system now seems grossly unfair. Care homes are effectively 'hoovering up' the nation’s inheritances.

Housing - there should be a massive uptick in the extent of shared communal or sheltered accommodation for the aging population. This could help with the housing crisis. But most importantly would mitigate the loneliness suffered by carers in particular

Research - in comparison to physical healthcare the funds allocated to neurological disease are hugely disproportionate to the harm caused. Much more research investment from Government would help future generations mitigate, slow the onset and perhaps even find a ‘cure’. Early diagnosis is so important - blood markers are already available - we could have done so much more for both parents if we knew what was coming 20 years ago.

Assisted dying - everyone I’ve spoken to (many many people) who have been touched by this condition and when raised have said that there needs to be a change in the law. It’s inhumane currently. The debate going through parliament recently only might allow people with mental capacity to die with dignity. Alheimers must surely be considered. It would be grossly unfair to those afflicted not to do this.

I for one and my wife have both agreed that criteria can be set using a scale similar to the one I referenced. I absolutely want to be able to say should we contract Alzheimers we absolutely do not want our partners nor our children to go through what my parents have. I think it’s imperative that the law is changed to accommodate our wishes and that would be that when a level of cognitive decline is reached we pass with dignity with our families around us. Absolutely safeguards will be needed. But not having the option would be utterly inhumane.

I first noticed mum’s behaviour was changing when she was sixty years old. I contacted my mum’s GP surgery several times, but they wouldn’t listen to my concerns. I took her to see her GP in person. The GP asked her if anything was the matter, my mum said no, we were dismissed regardless of my concerns. After four years of begging the GP to listen, my mum was diagnosed with early onset Alzheimer’s at age 64. That four-year wait had a huge impact on me and my family. My mum lived on her own and had no help, and no access to appropriate medication. I had to give up my job and care for her. This had a huge financial impact. I was paying my own bills and my mum’s bills. An earlier diagnosis would have given mum access to drugs that might have slowed down the heart-breaking symptoms of Alzheimer’s. An earlier diagnosis could have helped me keep my job. An earlier diagnosis could have saved us all from watching mum helplessly decline with no outside help from anybody. I would like to see positive changes made that mean no other family has to go through what we went through.