Meeting to promote ‘Join Dementia Research’

Last week I was fortunate enough to be asked to speak at a meeting being held in Wakefield: the National Institute of Health Research Patient, Carer and Public Involvement away day. They were developing their strategy for the year ahead.

I attended with Sarah Daniels, Dementia Research Project Manager, as a lay member of Join Dementia Research. We were there to promote the forthcoming national launch of Join Dementia Research which is taking place on Tuesday 24th February. Both of us are involved with the launch down in London on that day – more to follow next week.

We decided that I’d go first with a talk about my journey and difficulty finding research:

I have a vested interest in research being carried out in the field of dementia. Being diagnosed with a progressive, deteriorating terminal illness focuses the mind on the here and now. If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn medical enigma. I’m not naïve enough to think that if a cure were found tomorrow that it would mend those parts of my brain that are broken, but it would rid my daughters and all the generations below me of that ‘inevitability’ that a diagnosis brings.

I spoke of the post code lottery that appears to exist in whether patients are offered research at the point of diagnosis. No clinician on my journey broached the subject of research – I had to go looking for it. I knew from my attendance at the Royal College of Physicians, where I  met researchers, that they found it difficult to recruit volunteers, yet here I was having difficulty finding research – crazy.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research. Where once they would have to assess their applicability, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public sign up for themselves.I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset to state in their Lasting Power of Attorney the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish – to talk to their family about their wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

The war on cancer and the amount of funding given to cancer research has seen a revolution in treatments being available – a cancer diagnosis is no longer the death sentence is was 40 years ago. We need the same to happen in the field of dementia research and Join Dementia Research will give us the tool to be able to bring together researchers with willing volunteers.

After Sarah delivered her presentation we were met with many questions – always a good sign. It evoked dialogue and discussion and they invited us to stay for lunch – another good sign and very nice too – so it was a very worthwhile visit.

More  on the launch next week………….

My experience of the media

Over the last couple of weeks I’ve been fortunate enough to be given the opportunity to experience many meetings with the media.

I had the wonderful experience of Channel 4 invading my living room. It really was a joy, if slightly scary experience… I did comment that I was disappointed that the word ‘suffering’ was used in the heading to the clip on the web, however, the presenter Victoria Macdonald, has redeemed herself and I had a text from her last week apologising and saying she has now got it changed – I imagine that those that write the article are often not the ones to put together the words on the web.

Jim from the BBC came to pick up his video camera last Thursday. He was a joy to work with and is involved in so many different projects. He was interesting to talk to and interested in what I had to say. His interpretation of our story is due to be screen early April, but the date is still to be confirmed.

Tom from the Guardian also did a good job miraculously reducing all the words me, Keith and Hilary had provided to fit the 2 page article he wrote on Still Alice – find it here:

http://www.theguardian.com/film/2015/feb/10/still-alice-alzheimers-accurate-dementia-sufferers-verdict

I said yes to all these because I thought they would write as I would write and accurately interpret the thoughts I wished to reveal. I have to put so much work into preparing for an interview to try to make sure all the right words are in my head – or at least some of them. The woolliness of thoughts is such a nuisance but that’s how I experience life on a daily basis. The challenge of preparing for interviews has certainly worked my sluggish brain so I see that as a bonus.
However, I also said no to quite a few. I wanted to get my voice out to as many people as possible but not at the expense of devaluing what I had to say. So I said ‘no’ to those which just didn’t feel right. I made the fatal mistake of saying yes, and then no to one tabloid. I naively thought saying no would be the end of it. I didn’t expect to continue to receive calls and email asking me to change my mind. Lesson learnt.

What all these ventures have produced are dialogue and that is exactly what I wanted. The comments, as always, to any article were very mixed. What a sad world the place would be if we all agreed with one another. With regards to Still Alice, those that criticised the film for concentrating on Alzheimer’s have missed the point I believe. The movie makers could have made 1001 different films and for each there would have been some who dismissed it as unreal or sentimental. What I see in the film, is a watchable, realistic portrayal of one persons experience. It is there to raise awareness and start conversations. It couldn’t possibly portray everyone’s experience of dementia as each is as different as the individual themselves.

Simply go and watch the film for what it is – a Hollywood interpretation of a brilliant novel of one person’s journey through dementia – simple as that. It’s due for general release on March 6th.

I’m just one of the many voices of dementia of the moment. None of this is done for personal gain,  apart from giving me the personal satisfaction of having my views heard.  As I’ve said before, my shelf life is short so I’m trying to make the most of it and raise awareness at every opportunity. I’ve still got much to say, so until I lose the ability to articulate, I’ll continue to stand on my soap box.

 

Link to an article in the Guardian

No blog from me today as I’m full of cold. I’ve even taken a couple of days off work – something unheard of in the past. Instead, here’s a link to an article published in the Guardian last Wednesday, written by Tom Seymour. He wrote a piece on Still Alice using the thoughts of Keith Oliver, Hilary Doxford and myself. It was a video on the web made by Keith, which made me realise that I too probably had Alzheimer’s. I’ll apologise on Tom’s behalf for the fact that the word ‘sufferer’ appears in the link title……..

http://www.theguardian.com/film/2015/feb/10/still-alice-alzheimers-accurate-dementia-sufferers-verdict

‘Still Alice’ Charity Premier

On Thursday, at 11.55 when this blog is published, I’ll be in London.  I’ll probably be nervously wandering walking around waiting for 12.30 to arrive so I can walk in the Curzon Theatre to await the arrival of Julianne Moore and the first British showing of Still Alice.

First, I’ll be meeting Christopher (who is living with dementia) and his wife Veronica who appeared in a Channel 4 programme called ‘Who Are You’  with Grayson Perry. I’ll also meet Angie ( a dementia support worker) and Gillian who she supports. I’m so looking forward to meeting their friendly faces first and having a chat over coffee to calm our my nerves.
If all goes to plan, at 1pm Julianne Moore will arrive and do all her interviews and will then sign up to become a Dementia Friend before introducing the film. While everyone is watching the film she will then come and spend time with us, chatting….with us……..amazing.
It will all be filmed and recorded so I hope that will enable me to remember this very special day for a long time – in the future, when my memory fades, my daughters will be able to watch the footage and I’m sure I will sit with them and still feel the very special emotion generated from this very special day.

Update on Channel 4 News – article is now being showed on Friday and not Thursday as first thought…….

Don’t anyone pinch me so I wake up from this dream – I’m happy where I am, thank you.

 

Update on meeting with NHS Employers

You may or may not remember, but when I was diagnosed last year I wrote a blog about the lack of support I found in the NHS – the very place I thought I would be sure to find advice about continuing to work well with dementia. As a result of this I approached our Director of HR, Dean Royles, about the lack of support available for our staff at St James Hospital. He put me in touch with NHS Employers.

Well, today we had our first meeting. I met with Ruth Warden and Jen Gardner and it was very positive. I came out hopeful that something would be put in place as they were full of enthusiasm to get it right. We are now planning to work together (brownie point for including someone with dementia in dementia related plans) to bring about awareness and raise the profile of the need for support. I’ll be helping to contribute to their design for documents to help employers support their employees.

We will be developing two strategies  -one to help employees with dementia or symptoms of dementia and the other to support carers juggling work and caring.

Head now full of ideas, so must go and empty brain into iPad before they escape……….

 

 

 

Reflections on the inevitable

It seems like the passing of Christmas and the start of another year has brought lots of people down in mood. The beginning of the year is never an easy time as all you want is to see the signs of spring and warmer, lighter days. For those with dementia I’ve realised it takes on a different significance. I’ve noticed that for those I now know with dementia, this time of year poses more thoughtful and fearful questions…namely ‘was last Christmas the last one as the real me?’ and ‘ will next Christmas be different?’ A very sad but realistic question to ask due to the cruel nature of the disease.

On days when you are down it’s very difficult to ignore such thoughts. However, I’ve decided that I can’t waste valuable time worrying about things over which I have no control. I try desperately to live in the present – today. Look forward to plans in the future. For example, I’m looking forward to working with Bradford University in October – goodness knows what stage I’ll be at then but I have no control over the disease, which just leaves the ‘looking forward to working with Bradford’. So I’ll try to concentrate on the bits I do have control over.
Sadly, as there is no cure, I feel my generation and our families can only sit and watch our decline. Moreover, each day  a sign or action can remind us of the inevitability of the disease. I’m not naive enough to think that if they found a cure tomorrow it would immediately mend brains already damaged. However, to sit and watch is wrong and a disservice to our children and the generations below us. We have so much to contribute – through making people aware of our experiences, making people listen, taking part in research – these are positives we can do. We don’t want or children to have that same feeling of ‘inevitability’.

One of the nicest outcomes for me from writing my blog has been to bring realisation to current and past carers as to why their loved ones behave in a certain way – their loved ones are a stage further down the line than me and can’t express what I’ve been fortunate to express through writing about it. Those are the valuable contributions I’m talking about. My fellow bloggers and I are able to bring the experience of dementia into the realms of those who don’t – surely this is valuable information. It’s also a way of taking the thoughts and fears out of our heads and into the written form. It’s a way of sharing our coping mechanisms in order to help each other and those who are looking for help. You can imagine the frustration and anger we feel at the inevitability of our decline but if we dwell too long on those thoughts we’d all end up queuing for the journey to Switzerland. I’ve got so much more to contribute until I succumb to those thoughts.

To do nothing seems cruel to our children; to do something, no matter how small, seems a wonderful gift to give.

No wonder we feel despair and have such dark moments at times. Allow us those moments without criticism. ‘Live for the moment’ is a message that comes out of the film Still Alice. I hope you’ll all watch it if the opportunity comes your way as it will give you a frightening glimpse into our world and our future and make you realise why it’s so important to live for the moment and try to make a difference.

Spring is just around the corner

Possessions v Memories

Just a quick note before I start today’s blog. Below is an article that has just been published about me on the News and info section of the Join Dementia Research website. Remember, everyone can join and make a difference. Just by expressing an interest, you’re making a statement.

http://news.joindementiaresearch.nihr.ac.uk/yorks-join-dementia-research-champion/

 

My little box of memories

Back to today’s blog! I heard someone say last week on the radio – ‘memories last longer than possessions’…….mmmm, maybe not for us all…… but I liked the principal of the discussion. The subject was people having too much ‘stuff’ these days. Do you really need that extra pair of shoes – (‘yes’ I hear you say Helen – ha!). One person spoke of having a ‘floordrobe’ as her wardrobe was so full that clothes were now spilling out onto the floor.

Those that know me won’t be surprised to hear that I have no problem having a clear out (I have a spare wardrobe – ha!). The only material possessions that have any real value in my world are sentimental possessions. It use to be a case of not being able to afford much, but even once I could, I suppose old habits die-hard and they just weren’t important enough.

Having said all that, I have to admit that my iPad has become my best friend (thanks Helen) and I seem to have developed a different attitude about ‘things’. This came about following a good talking to by my daughters, who said if I want something I should buy it – after all, I can’t take it with me 🙂

I’m sure everyone can relate to the concept of ‘valued possessions’. You must all know that sinking feeling when you lose something that has huge sentimental value…… For those of us living with dementia, our memories are our most treasured possessions and we lose some every day. Imagine if you lost something of special value everyday – that’s the daily reality for those of us living with dementia.

I’d give up possessions anytime if I could have some guarantee that my memories would remain intact…

Billy sitting in one of his possessions…

 

A day spent with leading researchers

I was invited to attend a workshop last Thursday at the Royal college of Physicians in London as a lay representative of Join Dementia Research – another WOW opportunity for which I’m grateful.
The workshop was attended by leading professors and specialists in the field of dementia research. The prospect was quite daunting but once we started to talk about the ‘slidy thingy’ on an IPad and they knew exactly what I was talking about, I settled down:) I also sat next to Professor Murna Downs, from the University Bradford so we were able to talk about her colleagues there, as I’ve been involved with them in the guise of Research Network volunteer for the Alzheimer’s society.
The aim of the workshops was to identify and consider new approaches to clinical research in dementia which could be taken forward by NIHR – National Institute for Health Research.

A leading researcher into cancer gave a talk on new approaches being adopted in the oncology world which was very interesting, after all, research into cancer has come on in leaps and bounds. There are quite obvious differences between the outcomes of cancer and dementia, but we have a lot to learn and a lot to gain from adopting and adapting some of their methodologies.
We took part in 2 workshops, both of which were very interesting – the language lost me some of the time – but I was able to contribute, put my point of view and was listened to. It was a fascinating day. I was privileged enough to meet some of the leading brains in dementia research and it was fascinating to see my world from their viewpoint.

The surprising outcome for me was that it highlighted 2 very concerning issues. I naively thought that there would be a close connectivity between the research community and the NHS – this doesn’t appear to be the case.. Whilst in selective areas there is a close relationship, in the majority there appears to be a very wide gap due to ethical concerns amongst GPs and NHS clinicians. The Researches described them as ‘protecting’ their patients from the research world. In my mind this is wrong – clinicians and GPs should give their patients a choice. It is not up to them whether or not a patient takes part in research. It should be the patients who are given enough information to be able to make an informed decision as to whether to volunteer.

It appears to be the classic ‘postcode lottery’ as to whether you live in an area that promotes and has research available. I personally think that the seed should be sown at the point of diagnosis or even before and regularly discussed as an option. After all, in the NHS, as someone who works there, aren’t we always talking about the importance of patient choice.

The second was the frustration that this brings both parties. The NHS has masses of data that would be valuable to researches – none more so than who has been diagnosed. I’m not saying they should ‘sell’ patient data by any means – definitely not – but, again, it should be down to patient choice. Public perception of ‘research’ seems to centre on clinical trials, but this is only one strand. Research is also ongoing into the care and prevention of dementia – how to live well with dementia. Researchers find it difficult to recruit volunteers and volunteers find it difficult to find research. This is where, hopefully, the new Join Dementia research database will succeed. Volunteers will register on the database to express their interest and researches will detail the research taking place. One can then be matched with the other and then enough information can be given to the volunteer in order to make an informed decision as to whether to take part.
A very interesting and enlightening  WOW day.

10 positive things people have said to me

 

Top 10 positive comments people have said to me – in no particular order:

1. “We’re so proud of you”

2. “You’re still you and I’ll always love you even when you can’t remember my name!”

3. ” What can we do to keep you well at work?” – sadly not by the right person but at least someone said it:)

4. “You’re so positive”

5. “What can we do to help?”

6. “Would you like to comment on a plan to help those with dementia?”

7. Would you like to attend a conference to give your perspective as someone with dementia?”

8. “You’ve changed my view of those who have dementia”

9. “Can you think of what we could do that might help others with dementia”?

and finally

10. “Why don’t you do a blog!” – the best of all:)

To all those people, especially Sarah and Gemma, thank you:)

If you find it difficult to know what to say to someone living with dementia, some of these questions may be a useful starting point.

 

Top 10 things people have said that I wish they hadn’t

Top 10 comments people have said to me when they’ve found out I’ve got Alzheimer’s – in no particular order 🙂

1. “Oh no you poor thing”

2. “So when will we know you have Alzheimer’s?”

3. ” I’d go off sick if I were you”

4. “You don’t look any different”

5. “How are you going to manage”?

6. “You’re so normal”

7. “We’d like to visit you at home” (I work full time)

8. The word ‘suffering’ many times over

9. “Is she capable of doing her job”?

10. “How long have you got”

Tomorrow, I’ll write the 10 things I’d like people to say to me.  Hopefully some of you will find this helpful if you’re not sure what to say to someone who is living with dementia.