The budget has come round once more

by Wendy Mitchell.

Well, the budget has come round once more and with comments such as ‘plugging the gap’ bantered about, it just highlights the brink on which we stand for social care.
Reading about social care needs and provision and benefit regulations being changed doesn’t give me ‘Hope’.

However, when I look at research proposals for funding into ‘better ways to live’ and ‘better ways to care’, this gives me exactly what I’m looking for – HOPE.

We have to normalise talking about research and to do this we must have GPs and all other healthcare professionals, like psychologists, district nurses or OTs, physios, all coming on board. These are often the very people we see most often. To normalise talking about research would normalise involvement.

So I’m here before you today as someone all researchers seek out on a daily basis – a willing participant…..
Why am I so willing? Because I like to be involved, because being involved and valued gives me HOPE

Without research we can’t change the future…..so to all healthcare professionals, I ask that you hand out hope today – it won’t cost you anything and will give that person hope at a time when hope is in short supply.

To all healthcare professionals

by Wendy Mitchell

Imagine yourselves in my shoes – being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……Services are non existent so you feel abandoned.

That’s what happened to me when I was diagnosed.

Now, Imagine, if someone came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say.. Imagine how that would make you feel………
Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had an valuable opinion and views that mattered.

That’s what happened to me when I started to be involved in research.

As soon as I was diagnosed I wanted to take part in research – however, my clinicians decided for me that I wouldn’t want the hassle, so never offered me the possibility.
That should have been my decision to make, not theirs.
All it would take is for clinicians, any healthcare professional, to hand out hope – by simply handing over a Join dementia Research leaflet and allowing me to make that choice.

We need to have an alternative to just hoping and wishing you don’t get dementia but this can only be achieved through research. Being involved makes you feel valued as you’re contributing to possible future developments – you could be helping your children, which is a great driver to being involved in research.
We all know there is no cure and without willing volunteers to test new theories, new technology, and new ways of living, we’ll never find the best ways to live with dementia whilst we’re waiting for that elusive cure.

Please hand out hope as hope is all we currently have……

Thank you

Dementia is still playing catch up.

Why? Not only are we way behind in research investment compared to other conditions, we desperately need people willing to participate in research to help find a cure, a disease modifier or just to improve the quality of our lives.We are no different to the rest of the population in our hopes and aspirations. We are different because dementia is not being treated equitably with other conditions.

We are on a mission to make a difference and with our #handouthope campaign we don’t want to make a little difference we want it to be significant and lasting.

There are some people, who can really help us to make that difference and IT IS YOU, the PROFESSIONALS. You help us manage our lives but you can help us to do more. You are the ones who see us when we are diagnosed and then support us as we continue our lives. Through your engagement, you have the means to inform your patients of the research opportunities. We know how important your time is, so please will you just #handouthope, share our message and hand over a Join Dementia Research leaflet to your patients?

It will make a difference and will add to the hope of me and my friends. Right now with a dementia diagnosis, Research is our only hope.

Please …….. will you? And if you do, THANK YOU

Hilary Doxford, living with dementia

PS I do research, it helps me personally in many many ways

You can download or order Join Dementia Research materials free of charge.
http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/

  

Join dementia research

by Chris Roberts.

After a diagnosis of dementia your whole family also receive the diagnosis, it becomes a team effort, it can affect everyone around you.

As yet there is no cure for any of the dementias or anything to prevent it, but there are ways, living a healthy lifestyle etc, that we can reduce the risk.

What we then need is hope, hope for the future, this is what research gives us!

This is why it’s so important for people to be aware and to know that research is taking place.

It’s not all invasive, most research is surveys or regular testing to see how it progresses, the researchers will even arrange home visits.

As well as the people living with dementia we also need people with healthy brains so comparisons can be made.

Together we can make a difference, please be a part of our research team!

“join dementia research today, it’s so easy to do”

You just fill in your details and you will be matched to appropriate programs from all over the UK, you can do as little or as much as you want.

The campaign we’ve just launched with #handouthope is to try and get health professionals, clinicians etc to give out information to patients they see about taking part in research. We can’t do this on our own, we need everyone’s help so please show your support on social media by putting up selfies together, holding or showing your hands to signify handing out hope by way of information on how to ‘joindementiaresearch’ to show that we are all standing and working together to #handouthope to those that need it.

Get involved today, please 🙏🏽

Chris Roberts,

55 years old, living with mixed dementia, vascular damage and Alzheimer’s disease

#HandOutHope

by Hilary Doxford.

There is always hope, but sometimes we need help to find it. Hope makes a tremendous difference to my quality of life. I find that hope from research, both as an active participant and just knowing what is actually happening out there.

When I received my diagnosis of early onset Alzheimer’s disease, I like most had questions. My first, how long have I got? My second, what research can I get involved in? The answer I received to my second question, was ‘I don’t know’ and this from a neurologist who I would expect to at least point me to relevant information even if he didn’t have a personal interest in research. That day I left the clinic feeling, desolate, despondent, abandoned and very alone, I saw no light at the end of a tunnel, and didn’t even know where the tunnel was.

Shortly after, I was asked to sum up my feelings in three words. Those three words were fear, despair and hope.

The first two because I was still learning that my pre-conceptions of dementia were all focused on the late stages of the disease. But I included hope, because in the first week after my diagnosis, I did my own research into dementia research and found out an amazing amount. That ignited my hope. At that time Join Dementia Research did not yet exist. If it had it would have been a huge boost to my morale.

Sadly today, I all too often hear similar stories, no information, no signposting, no hope. Why? Ignorance is no excuse. If I were a clinician having to deliver such a horrible diagnosis, I would want to help my patient come to terms with it any way I could. Providing information on research in particular Join Dementia Research will make a difference. Maybe not in the first days, weeks or even months after diagnosis and I am not suggesting it is rammed down people’s throats. Everyone is different and wants different information and at different times. But suggesting they search online for ‘Join Dementia Research’ or hand over a Join Dementia Research leaflet with ‘you may find this of interest, maybe not today, perhaps tomorrow, but others in your position have found it helps’ is all we are asking clinicians to do – #handouthope either at diagnosis or a subsequent appointment.

Please share our message.

You can download or order Join Dementia Research materials free of charge.
http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/