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My husband, Bill, was only 53 when I noticed things weren’t right and this was in early 2013. He was anxious and afraid of what was happening to him but couldn’t explain how he felt. I went to the GP first without his knowledge to try and explain his behaviour and to ask the GP to make him an appointment. The GP didn’t agree to my request at first but then asked Bill to go to the surgery. The GP wasn’t sure what was happening to Bill but said he would refer him to the Neurology department but there would be a long waiting list. I decided to make a private appointment for Bill to be seen earlier as it was having a huge impact on our lives. We got the appointment later in 2013 but not a proper diagnosis. We then saw a neurologist through the NHS who was amazing and arranged for a brain scan and eeg plus other tests. Bill was finally diagnosed in 2014 with early onset dementia/probable Alzheimer’s. We went through the whole devastating process and sadly Bill passed away in January 2023, aged 63.
I hope GPs are now more aware of the impact of dementia and I hope the waiting time for a diagnosis is now a lot less.

My father was diagnosed with Alzheimer's 10 years ago. My mother looked after him until her death in August 2019. Within 2 hours of finding my mother dead in bed, my father had moved in with us and stayed with us during the Covid pandemic until April 2021 when I made the incredibly difficult decision to put him into a Care Home.
It was really hard, he was sonambulant and often went missing with everyone running around the village and fields to search for him. He was doubly incontinent and unable to do much for himself. The stress of looking after him day and night really took it's toll on my health as well as that of my 24 year old daughter who still suffers from anxiety. By the time he went into a Care Home he had little idea who we were as a family.
My father is now 93 years old, the money for his care has run out (almost £300,000), has advanced Alzheimers and the Local Authority now want to move him to a cheaper Home even though the Home, GP and the independent Assessor have both said he should not be moved.
They take £2,750 a month of his Pension (leaving him with about £15 per week) and the contribute just £200 per week. They say we should contribute £1,600 per month to make up the difference, which we can't afford.
They say on one hand that he doesn't need 1-1 care, however he can nothing for himself. Now unable to feed himself, walk, hardly speaks, and just eats and sleeps his care needs are very high. So high in fact, that no other Care Home will take him on!! It's an oxymoron really.
Until he needs dedicated nursing care, they say they can do no more.
It's incredibly stressful and too sad for words that a man who fought for his country, was in the Foreign Office, a Military Historian with over 20 books to his name and paid all his dues over the years is reduced to this undignified end. In some ways I'm thankful that he is unaware.

Everyone said “Oh you can live for years with Alzheimer’s “. So when my mum was diagnosed in April 2022 I started to get everything in place to keeping her safe and getting the help she needed to stay at home. My youngest brother lived with her so luckily knew she wasn’t alone at night. I myself and a family friend decided we could take care of her ourselves and if necessary later down the line we would get careers as extra help. My other brother said he would do what he could and so did my adult children. Sadly in May mum fell out of bed and broke her shoulder so was admitted into hospital. From there it was decided she needed to recover in a residential home. Again I was planning for the long term and so carried on getting everything ready for her to go back into the house she loved. Sadly she deteriorated very quickly and within a few weeks she was bedridden. I watched as my once full of life and ever up to an adventure mum became a frail old woman. Very often she thought I was her mum and it broke my heart. She became very angry and again I bore the brunt of that. Never the less I loved her and didn’t let her see how upset and helpless I felt. The day I was taken into the office and told she was now going to be on end of live care I fell apart. On October 2022 she passed away in the early hours before the nurse on duty had time to call me to be with her. So 6 months from diagnosis she was gone. I felt cheated which sounds selfish but I really thought she would have more time. Looking back now I feel that maybe it was a blessing that she didn’t suffer for years and we didn’t have to witness her slowly disappearing from the person she once was. During those few months the Alzheimer’s Society was a wonderful support and I’m grateful to the people at the end of the phone for letting me have someone to talk to. I only hope that in time this cruel disease can be eradicated.

We went through a 2 year period from seeking advice from our doctor to getting the official d diagnosis from the Memory Clinic.
It came the same time I broke my leg and Covid kicked in. I also became my wife’s sole carer. Due to Covid, information and contact with the agencies was limited.

Well which story? My mother, mother in law and now my daughters mother in law were dealt the cruel hand of dementia. Each one took more than 2 years for us to have a formal diagnosis and all too late to really link in with community day care , or slowing down drugs. My mum was pleasntly happy in her confusion until she died, but my my MILaw was tormented, anxious, scared until she died after 5 years in a nursing home, 2years lying in a bed unable to communicate.
We all struggled with them, and now 10 years later nothing has changed in the speed of getting treatment after we knew what was wrong with my daughtdrs MILaw! 2 years from going to GP to finally starting on some medication to help. Tooò slow still !

God bless those that care and help dementia sufferers a chap who moved in next door to me was suffering with what I can only imagine must have been excruciatingly difficult and he thought I was playing loud music all night to him it was real eventually after trying to reason with him for 2 hrs he attacked I knew he had dementia so I did not retaliate but it has shocked me how many people incorrectly said I should of hit him its not about me or my ego it's about dementia sufferer going through a living nightmare sufferers need a diagnosis and support I fear disaster looms for the sufferer there family carers and general public the government needs to understand this action for diagnosis is vital for everyone no brushing under the carpet

My husband John visited our GP for a problem shoulder but mentioned to him that he was worried about his memory. GP did the usual quick test and agreed John needed further input from the memory clinic. 3 weeks later we had an appointment and John is now on medication. Johns quick action and GP will help greatly as his diagnosis has been recognised early.

My mum, Olwyn, was diagnosed with Alzheimer’s at the age of 75 in 2015. Every step of the way from diagnosis through support for her changing needs to care when she was no longer able to look after herself to her end of life treatment was an absolute battle for her and me as her primary carer. The NHS does not have the time or the resource to support an individual with a diagnosis or their care-givers in a way that is helpful or meaningful. It was an emotionally draining and time-consuming journey where, thankfully, I was able to fine some support, almost exclusively, from small local volunteer run organisations that gave us all an acceptable quality of life. These provided respite care, advice about financial and physical support, reduced my feelings of guilt and isolation and generally gave us both a reason to carry on. Social services and the NHS provided almost no support at all and the GP was of little help.
There needs to be a massive change in joined up support across voluntary organisations, the NHS and Social Services to provide meaningful support at all stages of this difficult journey that is effective and value for money. No-one wants to take responsibilities for making peoples lives with dementia better as they have neither the resource, guidance or funds to do so and this needs to change now. People with dementia can have long fulfilling lives if they are supported and signposted to the best way to live.

Getting an Alzheimer's diagnoses for my wife was important because it confirmed our fears and gave a reason for what was happening, however initially it was up to loved ones to raise concerns and seek help.
Once a diagnosis was verified a course of action was initiated, but it soon became apparent there is limited support for Alzheimer’s patients and Carers.
Memory Clinic had a limited impact due to limited appointments, once the level of mental capacity had been assessed and medication started regular appointments ceased, leaving patient and carer in limbo not knowing where to turn to.
In our case, my wife went through an episode of sundowning which brought us into contact with the police who referred us to Social Services. Future incidents involved hospital stays and more referrals to Social Services, but limited funding made any support restrictive.
Social Services were unable to provide any support apart from signposting because majority of funding had been allocated to more headline gripping causes.
Changes that are needed include the need for a recognized continuous compulsory education on all forms of Dementia, which Doctors, Nurses, Carers and Health Professionals need to complete yearly, because in our experience knowledge and understanding of Alzheimer’s and its stages of progression are lacking in not only different fields of health but within the same fields.
After getting an Alzheimer’s diagnoses, as a Carer it soon became apparent, I was on my own to find what support or lack of support is available and to remain positive in face of adversity, therefore there is a need to help carers with Mental Health Issues. Similar to a lot of carers, I have a diagnosis of stress, depression and anxiety.
When accessible support is available it varies in quality due to organisations thinking they are Alzheimer’s aware but have little understanding because they rely on their knowledge of support friends and relatives received. We had the support from a local company who provided companionship, however, failed to acknowledge lack of cognitive impairment would have on conversations.