The Challenge of Dementia No. 10
The challenge of Dementia has now been the subject of no fewer than nine of my articles in this newspaper and I am glad to have had some feedback from readers.
Thanks to increasing publicity about Dementia in the press, on radio and on TV, many more people have become aware of the condition which is becoming more widespread: One in three children born today will develop some form of dementia. By 2050, two million people in this country will be living with this challenging disease.
Awareness is good - but it is not enough on its own. Frustratingly, a cure, or even effective treatment, is a distance away. We all need to learn the basics of Dementia support, because this support, however limited, can be life changing, even life saving.
Quite rightly more people are now learning about life support and CPR. Defibrillators are being fixed to more and more walls nowadays, but any of us are more likely to need dementia support than CPR and the use of this valuable life saving equipment.
To end my series of articles on a positive note, I have recently formed a group call DOTS: Dementia, Optimising The Support. I have realised that locally, there are a number of groups and individuals who are involved with some form of dementia support - e.g. Dementia Harborough, VASL, Alzheimer’s Society, AGE UK and Leicester Musical Memory Box, to name a few. It occurred to me that it would be useful for these groups to talk to one another, as well as other interested parties or individuals - in other words to join up the dots - always a useful and positive exercise.
I would very much like to hear from anyone who would like to be part of DOTS. Membership is not onerous and we are not a fund-raising group, but are just sharing ideas with a view to passing on information to those who need it. We also aim to add to the current awareness, knowledge and skills that can be of practical help. We plan to start Dementia Friends sessions locally and to move towards Kibworth, as a village, becoming more dementia friendly. The more dementia accepting and supporting we become, the less we will actually need to talk about it.
As Wendy Mitchell, author of ‘Somebody I Used to Know’, who was diagnosed with Alzheimer’s disease some years ago, has pointed out: “Nothing changes overnight, so why are we made to feel the diagnosis is the end. People forget there is a beginning, there's a middle, with so many adventures still to be had.”
However, we also must not trivialise dementia, because, at the other end of the scale, this disease can be described as savage, ripping identity and dignity from a person and challenging their carers to the limit.
Ideally, those with Dementia, especially in the latter stages, should have access to specialised clinical support. Such support can come from having access to an Admiral Nurse - a specialist Dementia nurse - their expertise is vital when the condition becomes more challenging.
Thanks to Dementia UK, there is now an Admiral Nurse at LOROS and two now at Leicester Royal Infirmary. There are also two in Oakham and one in Kettering. I met with Hilda Hayo, CEO of Dementia UK, recently and she hopes there will soon be positive news about the first community- based Admiral Nurse in Leicestershire. As I have mentioned before, I am a member of a fundraising group in Charnwood who have worked tirelessly to raise money for these much needed community nurses.
When I met Hilda Hayo on 5 June, together with JohnTillotson, we were able to add to the fund with a cheque for £1,820 from Kibworth & Fleckney/Market Harborough Rotary Clubs combined, following a charity theatre night. The Trustees of the Betty Ward Charitable Discretionary Trust also donated £10,000. The late Betty Ward was a lifelong resident of Kibworth Harcourt. One of the trustees, John Tillotson, experienced first hand the urgent need for an Admiral Nurse locally.
In the future, I hope to report back with further positive news on how the Kibworth community is continuing to support those (L to R John Tillotson, Gwyn Jones, chair of the fundraising committee and Hilda Hayo.) who have drawn the dementia card and those who are caring for them. I will also update readers with news of Admiral Nurses. If you would like to join ‘DOTS’, contact me on firstname.lastname@example.org.