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The biggest barrier to getting a diagnosis for my mum was the stigma surrounding dementia. This came from mum herself, a very proud, intelligent and feisty Derbyshire lass. She was in complete denial and was well into her dementia journey before we managed to get her tested. By that time she didn’t understand her diagnosis. At the time (about 8 years ago) dementia was something to be ashamed of and only in recent years has it been more widely accepted and treated with compassion. Early diagnosis is so helpful in terms of the new drug therapies and ensuring that the patient is treated with the respect and dignity they deserve. Our family were mums biggest advocates and made sure she was always safe, cared for and had as much of a normal life as we could give her. Others are not so lucky and if you have no family and no money then it’s a sad fact that you’re on your own. I would like the people who are so vulnerable and have no support to be diagnosed so that they can access help. Great strides have been made and so many people are now aware of this disease and can see there is life after diagnosis. It is often a very long road and there is still plenty of life to be lived. The stigma needs to be eradicated so more people come forward for diagnosis and earlier help can be given.

When I first noticed my husbands change in behaviour and his obvious memory lapses an appointment was made with our GP ..Concerns were brushed aside by saying it was old age 69/70...Months went by and I made another appointment and stated my concerns this time an appointment for a brain scan was offered and it was found that he had Alzheimer/Dementia at age 72...He is on a tablet Donepezil 10mg..He is now 84..Its been a hard journey along to this point in time.. I am 82yrs..

My husband has got steadily worse since just before COVID. He lost his job due to giddy spells and then through that we eventually saw him have antidepressants. He appeared ok with simple memory tests so it was put down to anxiety loosing his job etc He was just 60 but since he has forgotten how to navigate Exeter where he was a good bus driver and he is constantly asking me questions as he forgets things instantly. I can loose him in town he looses our car . He can still drive perfectly well but I have to tell him directions all of the time. I have had to try a research centre to get answers as the GP just changed antidepressants! He has had 3 MRIs and finally someone said he had a stroke a few years ago. He hasn't a clue what month it is .He can't remember when our daughter is away. I am desperate to try and get more information as he isn't right!! It affects the whole family and is getting me down. We almost lost our house as his income was important and he had to give up temping as he kept getting lost and was too slow in his movements. People need more thorough assessments and answers for their families to plan the future. I miss my husband to talk to.

My mum had azheimers yet was not diagnosed early enough..she suffered for a long time before she was eventually allowed to have a memory test.Her memory loss during this time was evident as my dad also had Alzheimers so we knew what the signs were,yet this still made no difference to an early diagnosis.After she was diagnosed she was put on medication which really made no difference although it was altered many times she never coped well when it was increased so we had to watch our mum slowly disappear from us everyday.Mum was a strong independent woman before alzheimers and it took her ability to do anything for herself although she insisted on living alone.I tried numerous times to get help for her,just someone to visit and see how she was,but there was no one who would help,so it was phone calls and us who cared for her,she had falls which led to her being in hospital and sadly after the last one which was a serious one she never returned back to us.She died in hospital alone on 11th Feburary. This illness takes loved ones from us day by day..little by little with them suffering inside and unable to explain to us why they feel the way they do..confused,angry,upset and alone.I would like to see anyone with memory loss tested as soon as possible and if it is not Alzheimers then at least they would know,leaving someone suffering with memory issues is cruel and un-neccesary today,as it is a simple test that should be made avaliable to everyone who needs it.

My late wife suffered from Alzheimer’s. Fortunately she was well treated in both hospital and the care home. My experience taught me that it is the carers who suffer and tend to be ignored, they too require help and support. By all means continue to find a cure, but don’t forget spouses and families suffer as well .

This is not easy. Over ten years ago, I feared that I had mental problems of one kind or another. I was most concerned about my memory becoming worse over time; as bad as it was, I was fearful that my professional career was going to have to cease due to declining memory and, thus, the loss of my employment. The work I was engaged in at that time was very multi-faceted and pressured. I was a Senior Environmental officer. That role included duties not dissimilar to the Police and carried out duties, adhering to laws, legislation, and the ever-present likelihood of violence. The intricacies most people do not correlate. So, the result of my scan for memory loss was diagnosed as ‘short-term memory loss.’ No more was said or done about that condition at the time. Did I require further monitoring over time? Surely, when a person exhibits problems of this nature, they should have considered for ‘watchful waiting’ and to have been reviewed over a period. At the start, I was very naive and inexperienced in these matters, but having Alzheimer's is a very, very fast learning curve. Should I have been recalled at some future dates for reassessment due to the condition to ascertain if it was getting worse? In retrospect, yes. This only becomes obvious at a later stage. Fast forward to 2022, my memory was again in further decline, my personal moods were getting more difficult and disturbing. My wife was seeing various personality changes in me and was fearful for my future mental health and well-being. After seeing my GP, who, I have to say, was useless and confirmed that my knowledge of mental health was better than his. By degree, I am a Psychology Post Graduate. After further questions were asked by me regarding the current situation, I was recalled for further tests and scans. From the results of the first set of scans my next appointment, I felt much more uneasy about the results relayed to me by my psychiatrist, who advised that a ballpark figure regarding my life was about two years. I am aware that there is no one, consultant, or other (that I am aware of) that a patient can turn to for clarification. Considering that this is always a life-taking disease, we are discussing it here. In hindsight, considering the number of people being tested and diagnosed every day for Alzheimer's in the UK, the NHS has an extremely bad record. So, we are at the stage of my considering that the results, as supplied by my psychiatrist to me, were, I believed, flawed. Due to that, I personally funded a second scan, which came back very much to my own thinking and not the psychiatrist's argument. I am constantly bearing in mind the general thought that Alzheimer's is almost impossible to diagnose for certain. Bearing in mind the little empirical evidence I gleaned from my degree studies I was very concerned and confused with the two scans now in hand. After long discussions and more letter writing by myself and others including the senior psychologist. I carried on researching and investigating what the ultimate test for Alzheimer's was and satisfied myself that this test was the PET scan.
After a troubling debate with the senior psychologist, who seemed now in control of my case, I offered that in the absence of the NHS refusing to pay for the PET scan, I would pay for the next scan myself. Surprisingly and thankfully, the NHS agreed to pay for the PET scan; and the result of that was as follows. The senior psychologist informed me that on scrutiny of the PET scan results, eight to ten years was considered to be more correct as to end of life.

Being an ex Army officer my wife was diagnosed with Ahlzimers 4/1/2 years ago. I am her sole carer. I feel that it is wrong that we have to sell our home if she needs to go into care.

My Mother was suffering from cognitive decline for years before she was finally diagnosed with vascular dementia after being sectioned and hospitalised in 2006. She was subject to numerous ‘community based’ appointments a questionnaires over a 10 yr period from 1996 with outcomes sometimes indicating her condition was improving! Her treatment in A&E and then a general hospital ward for a number of weeks, before being moved to a more appropriate facility, was horrendous and triggered complaints from my family right to Ombudsman level - with little satisfaction I might add. I can go into much more detail if required as I have kept relevant documents and photographic evidence to this day.

with diagnosis, there is help and benefits that cant be accessed if dont have diagnosis. he has vascular dementia so meds arent an issue but you need an early diagnosis to be able to have the meds and for them to do some good.
at least we knew what we were dealing with although still comes as a shock. the memory clinic diagnosed 2 weeks before first lockdown. it was a lonely time as he was also sheilding. i do think that thememory clinic needs to be more supportive and proactive when there ia a diagnosis instead of just shipping us back to the gp.

My mum was diagnosed in 2017. It took me roughly 2 years though as I had to fight to get my mum seen by her GP. Eventually she had a memory test and that led to her seeing a specialist and a diagnosis of early onset dementia. She has not seen a specialist since though . She has been seen by a memory nurse several times but only because I have to seek them out for help which is very limited as my mum doesn't engage and refuses help. I don't get much help because of this and feel very frustrated at lack of help