Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
My dad had become forgetful in terms of his short term memory. Mum accompanies him to appointments because his processing of information is slower and he can't always...
I am a 77 yrs old married man with a digagnosis of frontal lobe alzheimer's which I inherited from my late mother who had parkinson's ( parkinson's is caused by a...
My wife of 50 year's who has had a heart op and cancer, had a very hard upbringing, and has just been diagnosed with Alzheimer's she has been very brave and we have...
Iain had always been good at knowing where places...
I’m 87 but I’m quite fit so that helps a...
Took my partner for diagnosis and the doctor confirmed she has Alzheimer's. This was 10 years ago. She is now in a care home which I am happy with. But, she has never...
I kept forgetting words and I said to my wife, "Why...
Dad first became aware of something being wrong when...
Nurse asked about memory at annual check up and did basic paper test. Said result was borderline. Referred to clinic a few months later. Continued during Covid. Saw...
Although it only been a year since my wife was diagnosed with dementia we have felt that we are not important or an urgent case, Social Services keep tell us that they...
Lockdown seemed to be the downfall of Mums health. I...
As I write this I can’t help but cry my mom is now in a care home as we could not care for her safely at home. What an amazing human being she has four children of...
My dad had become forgetful in terms of his short term memory. Mum accompanies him to appointments because his processing of information is slower and he can't always recall information he needs to provide. If anxious about forgetting upcoming appointments, he becomes fixated and can ask us 5 times in 30minutes. This happens throughout the day. It is exhausting for us and worrying to him as he is unaware of the repetition. I want decision makers to know that adverts and information all stress the importance of early diagnosis yet for the first few years, practitioners repeated oral question tests and said there is improvement and mri's have shown no damage to indicate dementia. My concern is by the time scans do show it, it is probably too late for treatment to be effective. He has worsened in other ways which, thankfully, the memory clinic nurse has documentated from mum's accounts. At times mum has found it very hard and I have had to find my own ways to support them both. We are told medication won't help. If it wasn't family, there would be no support only 6mth reviews to inform us of his progress which we are aware of anyway as we see him daily. Before diagnosis dad thought he was going mad and worried a lot because he hadn't been given a diagnosis therefore couldn't understand what was happening to him. Early diagnosis could have reduced this. For those carers who require DLA or PIP, the paperwork needs to be greatly reduced in its length and complexity as several older people I know of have abandoned it due difficulty completing it. Help that is easily and quickly accessed will be a massive help and will not cause adfitional stress which those affected do not need.
Elizabeth
I am a 77 yrs old married man with a digagnosis of frontal lobe alzheimer's which I inherited from my late mother who had parkinson's ( parkinson's is caused by a lack of dopamine in the brain) I am on donepezil Hydtochloride 1 M0 mg in the the morning and Memantine Hydtochloride 20 mg at night I still retain a lot of my long term memory I under stand that cases of frontal lobe alzheimer's that the short term memory is the first to go ?
Alexander
My wife of 50 year's who has had a heart op and cancer, had a very hard upbringing, and has just been diagnosed with Alzheimer's she has been very brave and we have had some wonderful help from a Memory Clinic . l am just coming to realise what the future has in store for us both. I just hope l will get help when I need it from the Council and the Government.
Ray
Iain had always been good at knowing where places were and driving there unerringly. Suddenly he could no longer do this and his memory was obviously affected. Couldn't remember having visited his daughter's flat, where he had stayed several times. He was invited to the memory clinic in our surgery in the autumn of 2020 but told it was minor memory loss, no diagnosis - then Covid struck and no more memory clinic appointments.
Finally, it was when he was in hospital after a fall that the Dr kept complaining that he was not diagnosed with dementia that we obtained a diagnosis. Then the wonderful Alzheimer's Society was available with all their help and advice and local groups to meet others to hear how they cope. Socialisation is so important, both for me and especially for Iain.
Finally, it was when he was in hospital after a fall that the Dr kept complaining that he was not diagnosed with dementia that we obtained a diagnosis. Then the wonderful Alzheimer's Society was available with all their help and advice and local groups to meet others to hear how they cope. Socialisation is so important, both for me and especially for Iain.
Priscilla
I’m 87 but I’m quite fit so that helps a lot.
Some time ago, I fell over in a park, and hit my head, and I think that was the beginning….since it caused damage to me brain.
But I’ve never experienced anything serious, apart from one thing: serious memory loss. If I move about at home, (say, from the kitchen to the living room) I often forget what I’ve changed rooms for!
And I get into terrible trouble, trying to remember the name of so many things, people, places, activities, whatever….
But I have to tell people I have Alzheimers because they don’t understand my funny behaviour! But I find most people still treat me as ‘ordinary’ and forget that, actually, I am disabled!
Some time ago, I fell over in a park, and hit my head, and I think that was the beginning….since it caused damage to me brain.
But I’ve never experienced anything serious, apart from one thing: serious memory loss. If I move about at home, (say, from the kitchen to the living room) I often forget what I’ve changed rooms for!
And I get into terrible trouble, trying to remember the name of so many things, people, places, activities, whatever….
But I have to tell people I have Alzheimers because they don’t understand my funny behaviour! But I find most people still treat me as ‘ordinary’ and forget that, actually, I am disabled!
Gerry
Took my partner for diagnosis and the doctor confirmed she has Alzheimer's. This was 10 years ago. She is now in a care home which I am happy with. But, she has never had a scan and therefore struggled to accept the diagnosis - and so did I and the family.
Irene
I kept forgetting words and I said to my wife, "Why am I forgetting all these words?" and she suggested I told my doctor. I was diagnosed with Alzheimer's when I was 65 and must have got it when I was 60, so have been told it is young onset dementia. I was introduced to the Alzheimer's Society and going to events they organise is helping me live with my dementia.
Graham
Dad first became aware of something being wrong when he could not remember the roads around him. He would get confused very easily. Trips to the doctors made little difference. It was only when he tried to turn right into traffic at a roundabout that things came to a head. Once he was finally able to get to a referral, they confirmed what we as a family already knew. Alas this was the start of an endless and stressful battle with GPs and specialists to try get appropriate and timely treatment.
Mark
Nurse asked about memory at annual check up and did basic paper test. Said result was borderline. Referred to clinic a few months later. Continued during Covid. Saw consultant and had CT scan same day. Then saw neuropsychologist a few months later who gave diagnosis. Took 3 months for MDT to agree medication!
Jessie
Although it only been a year since my wife was diagnosed with dementia we have felt that we are not important or an urgent case, Social Services keep tell us that they are aware but not forthcoming with any help. it is sad that I no longer seem to be married to my wife of 44 years. each passing day i am just left to cope with the changes, worst of all is I cannot understand what she wants, While it may seem like there is a lot of help out there it can be confusing while the person who need help is classed as able to make their own choices...
Mike
Lockdown seemed to be the downfall of Mums health. I noticed more and more that she was forgetting or repeating things. There were such obvious signs. I finally persuaded her to see her Doctor which then created another battle. The Doctor offered no support, didn’t really believe me and I felt completely let down. Only after pushing for help after another hospital stay after falls, was I listened to. The hospital pushed through tests and results eventually proved positive. After trying to keep mum at home and struggling to get carers she is now in a care home. The hardest decision I have ever made. Never doubt you. You know your loved ones better than anyone. More should be done to prioritise this horrendous and soul destroying illness.
Hazell
As I write this I can’t help but cry my mom is now in a care home as we could not care for her safely at home. What an amazing human being she has four children of her own and fostered around 30 children and babies in her lifetime. We had to fight to get a diagnosis and help. More needs to be done to help with early diagnosis treatment and help for families caring for dementia patients they deserve and have the right to receive the best care.
Louise Cherry
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?