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My mum, Debbie, was officially diagnosed with Frontotemporal Dementia known as FTD at the young age of 56. Symptoms which could easily be misdiagnosed as menopause had started to develop over some years, family grew concerned and arranged a visit to a menopause specialist, within a few moments of the appointment we were advised to see a Neurologist, we went privately to have this done and finally received a diagnosis.

Unfortunately mum has been declining much faster than we ever anticipated, it had been just over a year since the official diagnosis and one expression myself and my family have used on multiple occasions is how “It feels like we are in a nightmare that we just need to wake up from”, Mum is young, beautiful and strong minded but this condition has stripped her of her voice, confidence, and independence. Many people have not heard of FTD, nor do they understand how different it is compared to other forms of dementia and admittedly prior to mums diagnosis, I was the same. I wish FTD was spoke about more, and I will make it my mission to help spread the word on this rare type of dementia, it’s a difficult journey for all involved once a loved one receives the diagnosis, but you aren’t alone.

I wish more research and funding could be put towards rarer types of dementia and that the rarer types of dementia had some more coverage.

Thanks for hearing my story,

I am choosing my words carefully because I know that the person close to me who is showing signs of cognitive impairment does not wish to face the reality of what is happening to them. We have had an open conversation with this person about their memory problems and behavioural changes, but they refuse to get screened by the GP. It is tough. I understand that they are scared but it does none of us any good when we cannot talk openly about what is going on. And it has caused schisms in our family. One side of the family (the person that might have dementia and my sibling) are determined to bury their heads in the sand, while my other parent and I want to move things along. Dementia can introduce such a complicated dynamic into families, especially when there are people in the picture that don't want to face it. We are following the lead of the person experiencing changes, for now. We are taking each day as it comes. But if the changes increase, I am going to have to insist. It is a conversation I am not looking forward to; last time I spoke to my parent about their cognition, they cried and it was very difficult.

I’m very close to someone that is experiencing the most cruel disease imaginable. I’ve been their close friend since their partner EVENTUALLY received the diagnosis. My close friend is active in doing presentations for funding (EDF, Omaze) and appearing on TV, talking on the radio to raise awareness. She is amazing and I am soooo proud to call her my friend. She deserves to be mentioned in the Kings New Years Honour list x

I supported a friend of mine who had dementia. He was a father figure to me. He was such a kind and gentle soul. When he reached moderate stage of dementia he had recurrent aspiration pneumonias, which required admission into an acute hospital setting. Every time he was admitted his experience gradually got worse as did the care he received. Four months ago, this gentleman again was diagnosed with another pneumonia however, this time the decision was made that he would not to be admitted into acute stetting as he was at end stage dementia and the Nursing home was his home where he could be with staff who loved and cared for him. The one area of concern was the lack of palliative care support he and the home received. The GP made decisions over the telephone the GP only called out to the home once to see this gentleman. End-of-life medication was not increased to the correct amount despite the staff from the nursing home repeatedly calling the GP, which resulted in an end-of-life experience no one should ever have to go through, never mind witness. The staff at the home were so kind and caring yet the medical profession seemed to let this gentleman down. We need to lobby for proper palliative care in the community for people who are living with Dementia.

When I was 11 years old my Mum started to show symptoms of dementia, we did not know it was dementia for a further 6 years! she was young at 50, and treated for depression and vitamin deficiency. At the age of 60 she went to live in a care home as her dementia had progressed enormously. All of her care from diagnosis to end of life was inappropriate for her age, and delayed. I had no support as a carer, and left school early to look after her, my mum died aged 63. I have worked for Alzheimer's Society for 24 years, and it amazes me that my story is one that is still told, of delayed diagnosis and support. The difference that can be made to the lives of people affected by dementia with a timely diagnosis and support is immense, it must be made a priority so that no one has to go through dementia alone.

I’m not ready to share our story because its like waiting to be swallowed by a black hole. This is not where we expected to be after 40 years of marriage- its so cold.

My parents both died from this awlful disease .My Father 16 years ago from Lewy body dementia and my mother this year from Alziemers.
The impact this has had on our family has been immense.
I ended up giving up work during the covid pandemic to care for mum.
My parents had to fund all their care and despite the thousands of hours family members have spent supporting them this illness has been a massive financial drain.
The emotional toil it takes is also huge. Watching those you love those who have cared for you begin to struggle and eventually become totally dependent on you for all their needs is really hard.
There still seems to be a stigma about dementia and a sense that it's an inevitable part of growing old.
It's not of course but we should be putting so much more into research diagnosis and treatment.
Trying to look after someone with dementia is difficult but the system isn't joined up.
Medical care ie physio SLT district nurse may be excellent but co -ordinating support over years is exhausting.
Training for cares whether family private or those working in care homes is essential. We need to really work at raising the status of those who care for those suffering from dementia.
I share these few insights in memory of my dear Dad and mum in hope that things will change for the better.

Husband 68 with brittle diabetes, Parkinsons and dementia. Parkinsons undiagnosed for over 20 years, professionals said symptoms were diabetic consequences. Diagnosed in Lockdown no follow up for over a year. No clue it could lead to dementia or what dementia could involve. Dementia diagnosis September 2023. No real follow up. Rapid decline.
Increasing diabetic problems. July 2024 placed in a nursing home. Continues to decline. No short term memory. Marital relationship devastated