Red Nose Day and Dementia Diaries

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Dementia

Tomorrow, Thursday 26th February, in a Comic Relief first, the Red Nose Day twitter feed will be dedicated to the issue of dementia. The idea is to give people living with dementia the chance to share the realities of living with the illness and to raise the profile of the issue in the UK using #DementiaDiaries.

850,000 people in the UK have dementia. [i]

We will get a unique insight into life with dementia and a chance to hear from people who have benefitted from the money raised through Red Nose Day.

One in 20 people living with dementia in the UK are under 65 years old. There are over 40,000 people under the age of 65 with early onset dementia in UK, including 2000 people under 40 years old. This is expected to rise by a fifth to 50,000 cases by 2051. [ii]

My grandfather had dementia, and whilst I was living in Saudi by then and hadn’t seen him for a couple of years I remember stories from my dad who visited him up in Scotland.  He hadn’t always lived in Scotland, and looking back on it maybe if he had still been living in London there might have been more support for him from the community.

Grandad, Walter, was born in 1916 in Newcastle, the youngest of seven children.  His mum died when he was just six and his dad brought him down to London to grow up and go to school.   In 1929 he moved into the house in Acton that was then the house he remained in until he left in 1986 to move up to Scotland.   My granny had died by then and in a story worthy of a Barbara Cartland novel Walter was back in touch with his childhood sweetheart, Mabel who had tracked him down a few years before and been very supportive as my granddad nursed my poorly granny.   As children they had met, fallen in love, been separated when their families moved away but continued to write to each other.  Unbeknown to them their parents had intercepted the letters and never passed them on.  Thinking the other was no longer interested, they stopped writing, forgot about each other and married other people.

In 1986, a couple of years after granny died, Walter and Mabel married and relocated to Scotland where Mabel’s children lived.

Sadly Mabel died a few years later and grandad was alone in Scotland, removed from the support system he had around him in London.  A charity fundraiser (go figure that I am now doing something that he was also passionate about) and church warden there would have been an army of people to help him had his dementia been evident then.

Grandad’s final days would have been very different if he had access to the help there is today.   The signs were fairly gradual that something might be wrong.  My dad recalls conversations that grandad thought his son and daughter in law were stealing from him and that my dad must, must take a particular canteen of cutlery with him next time he came up.

52 per cent of people with dementia in the UK do not receive a formal diagnosis[iii]

Another time my dad visited and took granddad out for the day they had a lovely day and were sitting on a park bench when suddenly granddad started talking in German.   Quite funny really, they had never chatted in German before and I could almost hear the smile in my dad’s voice on the other end of the phone as he told me about it.

You see living with dementia is not all “doom and gloom”.

Tomorrow Comic Relief want to create a diverse and open conversation about dementia, and to do so they need to hear from you.

There is no cure, but for those people who are diagnosed, there is a crucial distinction between simply living with the condition and being able to continue to live well as an active member of their community. Initially after diagnosis, people with dementia often move from feeling frustrated and embarrassed to feelings of shock, grief and isolation.

And that is certainly what we think granddad felt.   Very isolated up in Scotland, and he had also fallen pray to a gang of conmen who literally frog marched him to the bank to get £10,000 out to pay for shoddy building work.    The bank didn’t question why this frail old man suddenly need that amount of cash and thankfully from what I have seen these days, questions would be asked and maybe an alarm bell might go off somewhere.   Granddad eventually moved into a home when my dad realised that actually he could no longer care for himself. As my father was living and working in Brussels he couldn’t do anymore than he already was.

The facilities that were available back then are nothing like what we have now. Thanks to projects funded by Comic Relief,  people with dementia have access  to a variety of projects which offer all kinds of support. Comic Relief jointly funds with the Joseph Rowntree Foundation The Dementia Engagement and Empowerment Project (DEEP). Hosted by the organisation Innovations in Dementia it is helping people with dementia to connect with and support each other, both locally and nationally, so that their views and experiences can shape the services and policies which affect them. There are now 50 local dementia involvement groups (DEEP groups) across the UK.   Initiatives like this enable people living with the condition to continue to live well and remain an active member of their community.

Comic Relief funded projects focus on helping people and their families to live well with dementia just after they are diagnosed.

Please get involved on Thursday 26th February and share your experiences of how you’ve been touched by dementia. Help to spread the news and share information about the day with your family, friends and colleagues to help raise awareness of this fantastic day. The takeover will give people living with dementia a new platform to tell us their story and we hope you can be a part of it.

To date too little has been heard from people with dementia about their experiences and what support they need to live well. The Dementia Engagement and Empowerment Project (DEEP), a project which uses cash raised through Red Nose Day, is helping to change that and ensure people with dementia have a voice.

Follow all the conversation throughout the day here – @rednoseday using #DementiaDiaries

It is predicted that there will be over a million people with dementia by 2021.[iv]

Every year 225,000 people develop dementia in the UK, that’s one every three minutes.[v]

Too many people with dementia aren’t living as well as they could: 40 per cent felt lonely recently, 61 per cent felt depressed or anxious and 34 per cent don’t feel part of their community[vi]

Do get involved, it really is going to be a really enlightening day tomorrow and I for one can’t wait to hear more about Comic Relief is helping and supporting those diagnosed.  As well as hearing from those already diagnosed.

[i] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2761

[ii] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=341

[iii] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1521

[iv] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=341

[v] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2761

[vi] http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2761

Dementia photograph courtesy of Shutterstock

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  • It is heartbreaking to watch someone suffer this awful condition. I saw so families torn up by it when I was nursing and so many tears from patients who couldn’t understand what was happening to them. There needs to be more support for everyone and it’s wonderful that Comic Relief is doing this work!

  • Thank you for highlighting this ……… especially the fact that it is not just a disease of ”the elderly” . At long last the media are beginning to listen !

    I lost my late mum to Alzheimers four years ago at the age of 82 . It was a truly harrowing experience in lots of ways . I will never forget the day I took mum out for a drive in the countryside on a lovely hot day and I stopped on a Common where there was lovely views over the five valley’s of Stroud , in Gloucestershire where she lived .Beside the road there’s a small family run ice cream factory and knowing mum loved ”99’s I went to buy her one ……..she loved ”flakes” ! On my return to the car I gave her the ice cream and she swiftly took it from me , pulled the chocolate flake out and promptly threw it out of the car window !!!!!!!! When we got back to her home she turned to me and said ”I don’t know who you are, but thank you for taking me out”……!!!!!!!!!! I was stunned, my own mum didn’t know who I was.. The next two years were a nightmare, with ups and downs , and hindsight being a wonderful thing .Lots of regrets about having not been aware of the need to have been ”on the ball” as a family over Continuing Healthcare at the time.

    To my horror , six months later my best friend was diagnosed with Early Onset Alzheimers . She was in her 50’s . Getting that diagnosis was a minefield , with Dr’s and Consultants continually telling her there was nothing wrong and to ”take a holiday” ! She was a very well liked and respected Solicitor /Advocate , in her ”prime” ……. now she can’t tell the time or handle money without a struggle ……. anything to do with ”numbers” . she’s a very positive person , and has worked hard to read again and can live reasonably independently albeit with some assistance from me ………as she lives alone . She’s scared , frustrated yet she tries to hide it most of the time .

    The introduction of self service tills which are being rolled out in shops, banks etc does cause problems for those with Alzheimer’s ( and other dementias etc ) because of the keypads …numbers , again ! ) and the fact that sufferers are much better with engaging in ”face to face” contact , and need more time .

    It’s wonderful that you and other bloggers and Comic Relief are highlighting the everyday problems which patients , family and friends encounter ……….. and change the perception that it isn’t just a disease of the ”elderly” ……….it’s striking working age people , at a time when some are themselves are caring for their elderly parents and/or grandchildren .

    As a society we need to do far more to stop the stigma of this disease and look for ways to engage with patients and try to understand their needs and not put more barriers in their way .

    Sorry this is so long, but, it’s an extremely important topic .