KEY POINTS

1. Cycling from East Yorkshire to County Down over the space of
   a week to raise awareness of the issues dementia raises, point to solutions and practical help (including a checklist of what to do if somebody is thought to have, or has, dementia), reduce the sense of isolation, celebrate the lives of people who have dementia, have some fun and make new happy memories.
   
   
2. Meetings of Minds, Music and Images for dementia awareness in Goole, South Yorkshire, South Manchester, Liverpool and on the Ards Peninsular, County Down again to raise awareness of the issues dementia raises, point to solutions and practical help, reduce the sense of isolation, celebrate the lives of people who have dementia, have some fun and make new happy memories.
   
   
3. Early diagnosis is vital in dementia because then the person with dementia can understand their condition and make decisions about their treatment, care and affairs before it is too late.
   
   
4. The quest for a cure is crucial, and so is achieving a high quality of life for those who have the condition before the cure is found and put into effect.
   
   
5. A person with dementia has patchy memory, but still has eelings and their reasoning powers. If they do not have a present memory to explain the way they are feeling, they go back to the last memory of when they felt like that, and use that to explain the present feeling. They don’t live in the past; they use the past to explain the present.
   
   
6. The aggression displayed by people with dementia is usually a reaction to trauma caused by the dementia and people’s reaction to it, rather than the dementia itself. The more those with dementia feel life is as normal, that they are contributing, the more relaxed they are, the better their brains function and the better their quality of life.
   
   
7. Dementia is a very isolating disease, for those with it, and for those caring for them. The cycle ride and the links to it are intended to symbolically link people together; the Meetings of Minds, Music and Images is intended to be a celebration, to be fun, to promote relaxation and enjoyment.
   
   
8. iIn my experience the SPECAL Method of dementia care developed by Penny Garner through the Contented Dementia Trust greatly enhances the quality of life of people with dementia, and those caring for them through it's pragmatic approach focussed on maximising wellbeing.
   

BACKGROUND TO THIS ACTIVITY

My Mother has dementia but it has been a very long road to getting a diagnosis. While I don’t want to see any individual at the coal face
blamed, I do feel that there have been significant shortcomings in terms of missed opportunities for earlier diagnosis, and that as a result my Mother has been denied the opportunity to understand her condition and take decisions about it while she still was able to do so.

Now it is too late, and there are a lot of difficulties. They have now been through all the assessments, but my Mother is refusing care (because she thinks she can cope and as she has put it to the psychiatric team
and social services “anything I need, Graham will do it”). Forcing care on her will traumatise her, forcing her into a home will traumatise and completely disorientate her. That is why I strongly believe early diagnosis is so important, because the basics of the care structure, and personnel, can be introduced into their lives, with their consent, when it is still possible for their brains to properly embed it.

When someone has dementia, my experience is that there is a lot of pointing you in the direction of potential sources of help, but little in the way of what I see as meaningful help. The wide range of different agencies that need to be dealt with is in itself confusing. This is at a time when the dementia sufferer and family members or other carers are feeling at their most stressed and in need of help and guidance. It almost appears that the system is configured to prevent as many people as possible accessing services – thus keeping costs down
(but actually in my view increasing hidden costs to families, and the nation as a whole, considerably).

Searching on the Internet late one night, I discovered the book “Contented Dementia” by Oliver James (http://www.contenteddementiatrust.org/2012/02/11/contented-dementia-book/). This is by far the most helpful source of practical advice and insights I have found. It is light years ahead of anything else. It is based around the SPECAL Method of dementia care which is constructed around principles – for example “Don’t try to defeat dementia with logic”.

Trying to “defeat” it is the instinctive reaction and the wrong thing to do, because the more you confront the dementia sufferer with logic and the evidence of their memory gaps, the more stressed, even traumatised they become. The more stressed they are, the less well their brain functions, and it is that stress that seems to be behind the aggression, and shut downs, that are often seen in dementia patients rather
than the progression of the disease itself in most cases.

The SPECAL Method was developed by a lady called Penny Garner, and the book was written by her son-in-law (he wrote the well-known book “Affluenza”. I attended a course Penny ran. She is an amazing lady, a real life force where on meeting her you feel your life has been transformed, for the better. I felt that I had met a kindred spirit.

I decided I wanted to make some good come out of the difficulties our family has experienced - celebrate peoples lives, reduce feelings of isolation and help to raise awareness.

HOW THE IDEA CAME ABOUT

The idea came out of listening to BBC Radio Ulster (and Radio Foyle) “Your Place and Mine” programme. I discovered it when searching
the BBC site for programmes on the Easter Rising around Easter time. I was feeling very isolated MYSELF, and I listened to one programme, enjoyed it, listened to another, was fascinated, and then I was hooked. 8am on a Saturday morning is now sacrosanct (the programme starts at 8.05, but I like to be ready).

In each programme there are visits to a wide range of people and
places; it’s a really informative and enjoyable programme. The presenter, Anne Marie McAleese, is very warm and friendly, brings everybody together and has a great sense of humour. A real feel-good programme, and there is a strong sense each Saturday of travelling to a very beautiful part of these islands in the mind, and feeling connected to it, during a period when travel there is out of the question (I have very happy memories of visits to Northern Ireland and all things being equal would have visited again the first part of 2016).

I emailed Anne Marie about a term frequently heard on the
programme (having some "craic". She replied on air with an explanation (it's about having some fun, a good convivial time). Another day I sent a comment about a lady featured on the programme who did a walk from Enniskillen to the Wash to raise awareness of the fact that the curlew is in danger. I jokingly said I’ll have to do an Ouse-Ards cycle ride (Burr Point on the Ards Peninsular being the most easterly point in Northern Ireland) in an email he sent about half an hour before that day’s programme started. Then on the programme that morning a chap ion Derry Londonderry had organised a cycle ride activity, and the idea of the Ouse-Ards and Foyle-Ards cycle ride to raise awareness during Dementia Awareness Week 2017 came into my head.

TO SUMMARISE

We now have the basics of an awareness raising activity – a cycle
ride from the Yorkshire Ouse to the Ards Peninsular using the Trans-Pennine Trail carrying favourite images and song titles of people who have dementia, and stopping off for Meetings of Minds, Music and Images in South Yorkshire, Manchester and Liverpool, rounding off with one on the Ards Peninsular (where we will sing the favourite songs, and do some dancing). These will be fun, enjoyable activities (craic) celebrating the memories of those who have dementia, and
building new happy memories.

There are a lot of details to work out, and people to entice
to join in. Alzheimer’s UK are on board nationally (which facilitates me
approaching all the local Alzheimer Societies), as is Contented Dementia Trust which is the one I most want to support (but at the same time I want to be inclusive, as the whole point is to bring people together and reduce isolation). Anne Marie is aware of the activity, and that she and her programme gave me the idea. With this basic vehicle of an activity, we can bolt on extra activities as we develop things.

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