Dementia Support Line
Share your story
If you're ready to tell your story, we want your voice to be heard.
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.
I was a clever boy at school, passed the 11+ exam in...
Well, I am on a new trajectory but it is strangely familiar.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago....
My husband was diagnosed in Jan 2022 with “ mild...
My dad was diagnosed with vascular dementia and my mum Alzheimer’s, both sadly passed away in 2017 and 2020. Now my sister has been diagnosed with both, so our...
My Husband 84 years old has Dementia ,and i am his carer
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and...
HOPE AND PURPOSE… These are the two most cherished...
I realised my memory was getting worse & my GP arranged a memory clinic test where I was immediately referred to a specialist who,after a series of tests,diagnosed...
For the last nine years I have been trying to get my best friend to be listened to by myself about having "essential tremors" taken seriously than 'just essential...
My mother’s dementia began with some forgetfulness, then she had delusions and hallucinations. She was mid-80s, my father 5 years older and he struggled to care for...
My husband aged 89 was diagnosed with dementia 3 years ago though the family were aware years before the formal diagnosis. He also has arrhythmia & both of us, in...
Both my parents had dementia, dying in 2017 and 2022...
My Daughter with Down,syndrome was diagnosed at 38. We suspected at 32. During her younger years the lack of support was appalling. Now she is on direct payment which...
I was a clever boy at school, passed the 11+ exam in 1960, went to a grammar school, then to Trinity at Cambridge (at the same time as King Charles)... postgraduate I was an officer in the RAF played "international" rugby for the UK Combined Services against the French armed forces, later was a World Champion at a sport I could do sitting down (advanced Aerobatics). Now I have what you call "dementia" but which I prefer to call "fullmentia", as I can still describe the path I took to walk to primary school aged 5 but hardly anything about what happened yesterday. Despite having successfuly flown aeroplanes upside down (in competition for Great Britain), I am no longer allowed to drive a car - which is crazy as the safety requirement is "situational awareness" not "memory". I am driven around by my devoted wife, and I work very hard not to point out all the potential dangers that I spot before she does. Having "dementia" doesn't mean I am incompetent, just that my memory storage capacity of recent matters is somewhat reduced. So that is how it appears to me today, tomorrow I won't remember what I have written so will probably repeat myself somewhat ;-)...
Alan
Well, I am on a new trajectory but it is strangely familiar.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago.
With my husband , we are at a stage where on some days he acknowledges he has a problem and others when he does not. I find the latter more challenging.
The speed at which my husband has become unwell has been staggering and this has been the hardest thing for all the family, to date, to deal with.
For now we are resigned to taking one day at a time and when life feels unfair and very tough, be comforted by the knowledge thst we have beautiful children and grandchildren, who make the tough days more bearable.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago.
With my husband , we are at a stage where on some days he acknowledges he has a problem and others when he does not. I find the latter more challenging.
The speed at which my husband has become unwell has been staggering and this has been the hardest thing for all the family, to date, to deal with.
For now we are resigned to taking one day at a time and when life feels unfair and very tough, be comforted by the knowledge thst we have beautiful children and grandchildren, who make the tough days more bearable.
Andrea
My husband was diagnosed in Jan 2022 with “ mild vascular dementia “ we were told he didn’t need any medication and there was no follow up. Fast forward to September 2023, my husbands memory declined rapidly, we then had a social worker who was useless, a CPN who was amazing and warned social services that we were heading towards a crisis point. By this time my husband had times when he didn’t know who I was. He had moments when he would be verbally aggressive towards me. On Nov 10 last year he was admitted into a care home, and my world fell apart. Four days later he was moved into another care home, because the first one was disgusting. A few months later he was seen by a different doctor who said he didn’t have vascular dementia he has lewybodies dementia with Alzheimer’s. Had he been diagnosed correctly in the first place and given the medication he is now on , I would have been able to keep him at home for longer, especially as we live in an extra care housing scheme with care staff on duty day and night. Something needs to be done about this as what happened to my husband not only turned my world upside down but also my husband’s and our daughters.
Carolyn
My dad was diagnosed with vascular dementia and my mum Alzheimer’s, both sadly passed away in 2017 and 2020. Now my sister has been diagnosed with both, so our family journey begins again.
Suzanne
My Husband 84 years old has Dementia ,and i am his carer
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and treat him accordingly .
More joined up thinking about treatments need to be done .
Also more advocates for Dementia patients ,when trying to get the right help
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and treat him accordingly .
More joined up thinking about treatments need to be done .
Also more advocates for Dementia patients ,when trying to get the right help
Georgie
HOPE AND PURPOSE… These are the two most cherished things that are lost when that diagnosis drops! BUT I DECIDED TO IGNORE this loss of purpose and get a NEW one? HOW? Well, I submitted myself for study, research and championing the cause to get awareness out there through Alzheimer’s Society, Facebook, and You-Tube. My granddaughter helps produce & guide my You-Tube videos nudging people to get that early diagnosis. (@minusmymemory if this can be included in the story)? So, yes it’s a bad thing, but it’s only the end if you simply do nothing but feel sorry for yourself and let it be the end! Blessings, John
JOHN
I realised my memory was getting worse & my GP arranged a memory clinic test where I was immediately referred to a specialist who,after a series of tests,diagnosed Alzheimer’s. Having been a member of Mensa for many years this worried me greatly.
2 years later I am still coming to terms with it. I fail to recognise people in the street,forget friends names & occasionally take a wrong turning when out in a small town I’ve lived in for 15 years. As a widower I live alone & worry about when my illness progresses & I cannot cope without support. I have adopted many coping strategies (eg:cooking is only on air fryer,microwave & toaster as they switch off if I forget them)but resent the limits to my lifestyle imposed by my illness.
2 years later I am still coming to terms with it. I fail to recognise people in the street,forget friends names & occasionally take a wrong turning when out in a small town I’ve lived in for 15 years. As a widower I live alone & worry about when my illness progresses & I cannot cope without support. I have adopted many coping strategies (eg:cooking is only on air fryer,microwave & toaster as they switch off if I forget them)but resent the limits to my lifestyle imposed by my illness.
David
For the last nine years I have been trying to get my best friend to be listened to by myself about having "essential tremors" taken seriously than 'just essential tremors!?' as of last year Alzheimer's dementia and Parkinson's are intact what I was frustrated and dreading because if someone had listened in the first place life would not be miserable now.
Amanda
My mother’s dementia began with some forgetfulness, then she had delusions and hallucinations. She was mid-80s, my father 5 years older and he struggled to care for her. I lived 50 miles away. She became a compulsive walker and after being admitted to a care home she escaped one night. She died aged 88, not recognising us or speaking. Her sister then followed exactly the same progression time-wise so it appears genetic; certainly nothing to do with diet, as my father ate her cooking and at 101 his brain was as sharp as ever. I hope I take after him.
Gillian
My husband aged 89 was diagnosed with dementia 3 years ago though the family were aware years before the formal diagnosis. He also has arrhythmia & both of us, in common with many others, hope that “the heart overtakes the brain” to spare him the indignities of the latter stages of dementia.
Gerry
Both my parents had dementia, dying in 2017 and 2022 respectively in nursing homes after care at home became impossible. The real injustice at present is that dementia per se in whatever form doesn’t count as an illness as of course it did in the past. ‘Social’ and health care must be integrated to provide the support people need and deserve.
Alison
My Daughter with Down,syndrome was diagnosed at 38. We suspected at 32. During her younger years the lack of support was appalling. Now she is on direct payment which I administrate. I am 82 and disabled myself. We have one L/D Dementia nurse for the whole of our huge city. Vast majority of the care is given by me and careworkers I employ with her D.P. The pressure on carers is huge.
jill
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?