Dementia Digest-PPI talk 8th March 2022

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Peter Middleton speaking about his experiences of being a Public and Patient Involvement

(PPI) representative on research, evaluation projects and as a consultant.

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Peter Middleton (Guest)
Hello everyone well.

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Peter Middleton (Guest)
Today, for one day only, you've got the unique opportunity to hear about research projects as seen through the eyes of an actual lab rat, me.

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Peter Middleton (Guest)
So first let me tell you a little about myself so that you can verify my credentials as a real live lab rat.

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Peter Middleton (Guest)
Well, I've got young onset dementia and I'm a Jack of all trades. I used my lived experience to help Alzheimer’s Society and anyone else who can use some help to educate campaign and fundraise.

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Peter Middleton (Guest)
I've got a background in public service and a passion for technology, especially where it can improve lives.

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Peter Middleton (Guest)
I’m an ambassador for Alzheimer’s Society and a member of the Santander Bank steering group, The Three Nations Dimension working group, The Deep Network and I work with other national and international organisations.

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Peter Middleton (Guest)
Locally, I'm involved with the Northampton Disability Forum.

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Peter Middleton (Guest)
The Defining Young Dementia Project and the Young Dimension Network and other dimension related products. I'm also a Blogger and I enjoy public speaking.

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Peter Middleton (Guest)
It's my aim to be a voice for change and improvement in the world of dementia for as long as I am able.

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Peter Middleton (Guest)
Over the last three years or so since my diagnosis, I've been prodded, probed, and interrogated by some of the best academics and research scientists. I bared my soul and everything else and jump through hoops at the request of people who want to gather information and test theories or many different dementia related topics.

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Peter Middleton (Guest)
I'll spend hours completing questionnaires and even more time online completing cognitive tests and other weird and wonderful concoctions disguised as games or puzzles.

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Peter Middleton (Guest)
I stoically endured full physical examinations and answered intimate personal questions. And all because I want to help to add to the sum of knowledge around dementia and other comorbidities.

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Peter Middleton (Guest)
I've given them my time.

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Peter Middleton (Guest)
I've given effort that sometimes left me exhausted or emotionally drained. I've made journeys offered at my own expense and sometimes on fools errands.

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Peter Middleton (Guest)
But I still do it.

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Peter Middleton (Guest)
And I'll continue to offer myself as a lab rat or Guinea pig for as long as I am able. I simply feel that it's my duty, and if I'm honest, it also gives me a buzz to know that I'm playing a small role in the advancement of science and that my participation may one day benefit others.

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Peter Middleton (Guest)
But enough about me. What about the practicalities?

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Peter Middleton (Guest)
Finding the right candidates could be a problem for you people.

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Peter Middleton (Guest)
Dementia is a portmanteau word that embraces a vast collection of disparate diseases. Even you experts can't seem to agree on a common definition of the word Dementia. Five minutes of do they will show you articles that talk of the four types of dementia and others that speak of the ten types of dementia. Other articles talk of nine, twelve or more. I guess it all depends on whether alcohol related, brain damage, Parkinson's disease and a whole raft of maladies where brain damage may relate to memory loss fit under the umbrella.

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Peter Middleton (Guest)
Now I'm convinced that they do, but I'm sure you'll correct me if I'm wrong and will understand why many people like me a little confused when they first start to educate themselves on this subject.

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Peter Middleton (Guest)
So you want to recruit people who matched your criteria as closely as possible?

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Peter Middleton (Guest)
Well, good luck with that. Until there's a National Register of people living with dementia, you'll have to rely on referrals from professionals, websites like Dementia Research UK or join dementia research. The good offices of other dementia charities and local groups and organisations to advertise opportunities for participation.

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Peter Middleton (Guest)
And all of this may limit the pool of potential candidates.

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Peter Middleton (Guest)
Next, you'll need to screen your candidates for suitability.

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Peter Middleton (Guest)
Do they have the right type of dementia?

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Peter Middleton (Guest)
Are they at the right stage of their journey into dementia.

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Peter Middleton (Guest)
Are they at the right age, do they live in the right area, have they got any comorbidities or take any medications that might interfere with results?

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Peter Middleton (Guest)
Are they tech savvy enough to complete any online elements or attend online interview or therapy sessions.

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Peter Middleton (Guest)
Do they have a study partner? I don't. My wife works full time and has little time to hand hold me. I don't need much of that at the current stage of my journey, but often that seems to be a pre-requirement for any participation.

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Peter Middleton (Guest)
I'm sure there are host of other things that an outsider like me isn't even aware of.

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Peter Middleton (Guest)
Well, that's narrow things down considerably already. Well, I'm trying to illustrate is that your pool of eligible candidates may not be as big as you would like. And then there's a good chance that some of your candidates may already have been involved in multiple research projects. Indeed, I myself, I'm often signed up to two or three projects at one time, and surely there's a danger here that my input may be tainted by exposure to repeated cognitive testing and questionnaire fatigue.

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Peter Middleton (Guest)
So one of the major keys to success in your endeavour is to look after the people you've selected as participants.

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Peter Middleton (Guest)
Now let's look at a few of the things you can do to keep your Lab Rats on board.

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Peter Middleton (Guest)
Explain the broad aims of your research and the necessary requirements for volunteers, clearly and without jargon.

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Peter Middleton (Guest)
People won't be so likely to volunteer if they don't understand your general objectives or unsure if they meet the selection requirements.

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Peter Middleton (Guest)
I once travelled a long distance and waited a long time for a medical examination, only to be told at the last minute that I didn't meet the age requirements.

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Peter Middleton (Guest)
Make sure all your forms and questionnaires and surveys or dementia friendly.

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Peter Middleton (Guest)
Lots of whitespace. Clear instructions for completion. What's the date format for example?

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Peter Middleton (Guest)
Not too long and complex and not too many fancy coloured bits and bobs in the page design that can distract.

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Peter Middleton (Guest)
Contact your participants and introduce yourselves in a collegiate and friendly way, not like a clinician or academic.

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Peter Middleton (Guest)
Remember, it's us who are doing you a favour and treating us like team members is good for our self-esteem and morale and will pay dividends throughout your research.

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Peter Middleton (Guest)
If you're asking anyone to make visits to a lab or a test centre

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Peter Middleton (Guest)
Make sure that they have the offer of remuneration.

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Peter Middleton (Guest)
Also, think about providing refreshments and a quiet area.

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Peter Middleton (Guest)
Comprehensive location information before they go and environment that is dementia friendly, no shiny white glass like floors or big black mats that could look like holes in the ground to some of us.

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Peter Middleton (Guest)
After all, we’re the ingredients in your research recipe.

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Peter Middleton (Guest)
You need to keep us fresh, healthy and happy.

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Peter Middleton (Guest)
Keep regular contact with your participants. It's only polite and it makes us feel like part of the team.

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Peter Middleton (Guest)
Why not offer to list the person as a collaborator on any papers that may be published as a result of the research, why not? You don't have to be an academic to understand how Maslow's hierarchy of needs works. People want their contributions recognized.

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Peter Middleton (Guest)
And once the research is complete, a final thank you letter is much appreciated and if it's appropriate and possible, a brief summary of what was learned or links to any scholarly papers or articles that may have been published as a result.

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Peter Middleton (Guest)
In the research with a clinical trial

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Peter Middleton (Guest)
Make sure that anyone on the placebo is offered the opportunity to obtain treatment with any approved medication that may eventually result from the trial if medically appropriate for them still.

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Peter Middleton (Guest)
And remember.

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Peter Middleton (Guest)
We want to be appreciated.

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Peter Middleton (Guest)
Updated.

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Peter Middleton (Guest)
Recognized and remunerated.

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Peter Middleton (Guest)
In conclusion, I suppose I hope I haven’t bored you all, and I know I'm largely preaching to the converted here, but I know all the things I've mentioned today are incorporated into your project planning and I'm sure they are. And if they're not, then they ought to because they'll increase the chances of your success and reduce instances of people dropping out.

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Peter Middleton (Guest)
I could talk to you forever, really, but in my opinion, I suppose you've suffered enough now and it's so it's time for you to share the load.

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Peter Middleton (Guest)
So I'm going to ask you to throw some questions and opinions at me now.

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Peter Middleton (Guest)
I'm an open book, so please don't hesitate. I'm no expert in your arcane academic and medical skills, but I am expert in Pete Middleton and his experience as a lab rat.

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Peter Middleton (Guest)
So let's exchange knowledge, opinions and good practice and thank you for welcoming me as a squeaker uh speaker today.

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Peter Middleton (Guest)
Uh, and now over to you.

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Jacqueline Parkes
Does anybody have any questions?

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Jacqueline Parkes
I mean, can you see hands, Ali?

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Alison Ward
I can't see any hands up at the moment, but if you want to write any questions in the chat or speak, please do.

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Alison Ward
Umm Pete, thank you for sharing your experiences. And I was just wondering if oh we've got some hands going up, which is fantastic.

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Jacqueline Parkes
Yeah. I heard.

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Alison Ward
And I was just wondering if you could say a little bit more about the when you've done and used measures in, in research projects and how that process is has been for you in terms of you know how long you sit and do measures for or how many you do in a in consecutive succession and what sort of best practice you would advise in terms of that?

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Peter Middleton (Guest)
Well, sessions can be tiring.

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Peter Middleton (Guest)
But of course it all depends on the type of research you're doing. I have engaged in one 10 or 12 two hour long.

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Peter Middleton (Guest)
Uh cognitive sessions there, which were all about play therapy.

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Peter Middleton (Guest)
And do you know, I wish they'd gone on longer because there was such fun, and I was so involved that I was really disappointed when they came to an end.

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Peter Middleton (Guest)
Uh. Other times when Sessions have involved

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Peter Middleton (Guest)
Uh.

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Peter Middleton (Guest)
Physically tiring things like uh when they're checking eye movement.

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Peter Middleton (Guest)
On screen and things like that. Sometimes they can go on I think too long.

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Peter Middleton (Guest)
Also.

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Peter Middleton (Guest)
There's something about those cognitive tests.

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Peter Middleton (Guest)
Which are showing you pairs of things that disappear on screen.

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Peter Middleton (Guest)
And you have to get.

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Peter Middleton (Guest)
You have to see how many pairs you can find.

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Peter Middleton (Guest)
Uh, they tend to repeat a lot, and I know that after three or four I'm having trouble keeping up and I'm getting things wrong and I start to feel quite disappointed with myself because I know that I'm not performing as well as perhaps as I used to.

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Peter Middleton (Guest)
And so.

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Peter Middleton (Guest)
Uh.

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Peter Middleton (Guest)
I'm almost reluctant to continue with the tests because they're showing me my faults.

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Peter Middleton (Guest)
Very clearly and that's not an easy thing to live with. The only thing that makes me do it is because I know that it's all for a good cause.

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Peter Middleton (Guest)
Uh, and many of many of the tests are very similar as well, so you become after a while.

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Peter Middleton (Guest)
Uh.

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Peter Middleton (Guest)
Quite expert in getting answers rather than naturally.

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Peter Middleton (Guest)
Um, supplying them?

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Peter Middleton (Guest)
And it's difficult not to.

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Alison Ward
Thank you, Peter. Really that's really helpful. And we've got a few people who've got hands up. I can see Sarah Smith. You were first to put your hand up. Thank you, Sarah.

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Jacqueline Parkes
Brilliant.

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Jacqueline Parkes
Yeah.

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Smith, Sarah K (HWB)
Hi, it's not really a question. It's a bit of a statement, Pete, you're an inspiration and it's because of people like you that we managed to do our jobs. And I think if we could clone you and we could have one per university, that would be amazing. But you know, gosh, keep up the good work, that's phenomenal. And the way you speak and you know you make accessible to us and that's what's so important. So just thank you so much and really interested in what you have to say.

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Jacqueline Parkes
Thank you. Thank you.

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Peter Middleton (Guest)
You're very kind, Sarah, and I'm. I'm always.

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Peter Middleton (Guest)
I'm very well aware that, especially in the world of dementia.

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Peter Middleton (Guest)
There's an awful lot of. Uh.

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Peter Middleton (Guest)
Uh.

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Peter Middleton (Guest)
People encourage lived experience.

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Peter Middleton (Guest)
In in many fields it's still not encouraged.

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Peter Middleton (Guest)
Uh, and I guess it's not encouraged even now as much as it ought to be.

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Peter Middleton (Guest)
Very often when you go and you look at some of the dementia charities and look at the top end of them, there's nobody with lived experience on their boards.

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Peter Middleton (Guest)
You know. They come to us when they want things but they don't want to involve us at top levels.

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Peter Middleton (Guest)
Uh, I guess it's because they don't understand us. You understand that? It's my short term memory that's gone. My cognitive ability is still there are still what I was, you know, on the day of my diagnosis.

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Peter Middleton (Guest)
Uh, the neurologist didn't pour all the marbles out of my jar. You know they're still there. I have trouble finding them every now and again.

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Peter Middleton (Guest)
But they're still there, you know. And I think there's also the belief among some academics and people in the Dementia world that people who are living with dementia can be loose cannons.

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Peter Middleton (Guest)
Add so maybe perhaps we're not always.

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Peter Middleton (Guest)
Trusted.

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Peter Middleton (Guest)
Especially when we're speaking to politicians and people like that, just in case we put our foot in it.

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Peter Middleton (Guest)
And I and I must honestly say that I know one or two of my colleagues who probably would, but only only because they're so passionate about trying to do more and better for people living with dementia.

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Smith, Sarah K (HWB)
I imagine it's the politicians that are loose cannons Pete, I really do. But you know the idea that, Umm, I mean, how can we possibly know what it's like? You know, we can't know unless we have a diagnosis of dementia ourselves. We can't no, we can't write about it. We can't imagine it. We can't theorize about it so this is why, you know, you should be and you are a course in Northampton. But you should be collaborators.

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Peter Middleton (Guest)
Yeah.

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Smith, Sarah K (HWB)
And equal partners in everything that researchers do. Fortunately, you've got a great place there where you are, but you know, and if people with living with dementia knew more about your kind of experience, you know, and I'm sure more people would sign up. But like you say, there is this traditional view of people participating in research as Lab Rats and, you know, and that's not, it's not what it should be, is it?

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Peter Middleton (Guest)
And we can't find them, Sarah. Many of my colleagues and I was. I was at a meeting of peers on Saturday and many of my peers, and there were a dozen of us there, all living with various types of dementia there, some with quite rare dementias are saying no one has ever approached me to ask me to do any research.

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Smith, Sarah K (HWB)
So it's just.

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Peter Middleton (Guest)
You know, we need to do more. You know, this was in the three Nations Dimension working group. So perhaps and we were saying there we in the three Nations Dimension Working group we need to put ourselves out there more.

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Peter Middleton (Guest)
You know, it's not, you know, you know, it's our fault too.

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Smith, Sarah K (HWB)
Well, thank you. You are valued, you are essential and you know we will get to clone you hopefully in the future.

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Peter Middleton (Guest)
Thank you.

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Jacqueline Parkes
Thank you.

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Alison Ward
So we've got Barbara has got our question, yeah.

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Jacqueline Parkes
Uh, Barbara.

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Alison Ward
Hi, Barbara.

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Barbara Balocating Dunn
Good afternoon.

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Jacqueline Parkes
Afternoon, Barbara.

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Barbara Balocating Dunn
Hello I'm the local one from Stanwick.

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Jacqueline Parkes
Hi.

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Barbara Balocating Dunn
I don't know, Pete. I'm. I just want to reiterate as well what the spirit mentioned you've been.

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Barbara Balocating Dunn
You’ve shared a lot of wonderful advice and recommendations. I am a PhD researcher myself. I'm in the second year of my PhD and ever since I found your blog and it's really helped to focus keep my thesis and and my research focused on why I'm doing what I'm doing. So I really enjoyed reading your blog and keeps so many things in perspective. So even when I'm doing it.

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Barbara Balocating Dunn
Uhm, I question I have for you. Is that so I'm putting together*

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Barbara Balocating Dunn
Information to submit for recruiting participants in the future study, and I worry that I'm providing too much information for a person with dementia because the university, I'm based at Loughborough University, we have to provide a participant information sheet as well as an informed consent form to sign and.

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Barbara Balocating Dunn
I tried to keep things as simple and straightforward as possible, but in the back of my mind I feel like I'm providing too much information.

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Barbara Balocating Dunn
So do you have any suggestions on you know how to go about that? Or do we

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Barbara Balocating Dunn
Get the information and just sort of follow on you know just based on reactions and help people feel and and.

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Barbara Balocating Dunn
Basically, they found that if I if I am providing too much information that too.

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Barbara Balocating Dunn
Uh, you know too much.

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Peter Middleton (Guest)
OK. Well, Hi Barbara. Thanks by the way, you're one of the few people who provide some really good feedback for me on my blog. Sometimes you think you're shouting into a vacuum.

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Barbara Balocating Dunn
Hello.

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Peter Middleton (Guest)
But it's people like you who proved to me that I'm not. And that's the reason I keep blogging so thanks for that and

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Peter Middleton (Guest)
Yeah, well, yeah, it's the, It's the oldest story in the book, isn't it? When do you stop writing?

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Peter Middleton (Guest)
How do you know when you've when you've written enough, and whether you've your pitched it at the right level?

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Peter Middleton (Guest)
It's awkward.

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Peter Middleton (Guest)
Uh, I guess the only way to do it, it's to include in your editorial loop.

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Barbara Balocating Dunn
Uh-huh.

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Peter Middleton (Guest)
Some people who are living with dementia, but even then, you know, we're all individuals.

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Peter Middleton (Guest)
I would say as long as you keep things jargon free and make sure that anything you put in there is is a necessary element of that.

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Peter Middleton (Guest)
Uh, of what, what you need to do and use simple English.

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Peter Middleton (Guest)
In fact, there's a whole language called simplified English.

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Peter Middleton (Guest)
Which has a very limited vocabulary of about 200 words.

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Peter Middleton (Guest)
It means that you can translate your forms into a different language. Is very easily then 'cause. It's a very predictable thing.

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Peter Middleton (Guest)
You know, consider using that to write your forms out and as I say lots of white space, bullet points, you know, keep it, keep it simple and easy to read through, please.

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Peter Middleton (Guest)
And you won't go wrong.

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Barbara Balocating Dunn
OK.

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Barbara Balocating Dunn
Thank you.

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Alison Ward
Thank you.

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Alison Ward
Pete, I was just thinking about the blog. Is that the link that you've got behind you is that your link to the blog if people want to connect to it?

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Peter Middleton (Guest)
Yeah, I started to write a blog.

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Peter Middleton (Guest)
Yeah, I started to write a blog about a year and a half ago for my own benefit really. I didn't want it to be like so many blogs are lots of photographs I've taken on my walk with the dog every day and what I have for dinner.

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Peter Middleton (Guest)
But things as I’ve entered the world of dementia.

00:19:50.770 --> 00:20:02.170
Peter Middleton (Guest)
As a demented person, I found that I was, I was having epiphanies every day. I was learning interesting new things that I could relate my experiences too.

00:20:03.180 --> 00:20:08.640
Peter Middleton (Guest)
And I wanted to document them and I wanted to, I wanted to speak to someone about them.

00:20:09.360 --> 00:20:17.040
Peter Middleton (Guest)
Well, I had no one to speak to about them, so I spoke about them on my blog, hoping that people would respond and engage in some sort of uh

00:20:18.990 --> 00:20:26.000
Peter Middleton (Guest)
An academic conversation with me and maybe clear some of my misapprehensions about things.

00:20:26.750 --> 00:20:38.040
Peter Middleton (Guest)
You know, I'd never heard of confabulation or pareidolia or some of the strange, some of the strange things that that we encounter on our journey sometimes. Lucid dreaming.

00:20:38.680 --> 00:21:08.420
Peter Middleton (Guest)
Goodness gracious me, I I I cancelled my Netflix subscription because I don't need it anymore now 'cause it because I I have lucid dreaming, you know? And isn't it strange? You know, I can wake up at 2:00 o'clock in the morning with a whole poem in my head and go and write it down on my whiteboard. You know, I I'm creative in my sleep. So, so, so many interesting things are going on. And I wanted to document them. And I still do now. I want to talk about the political things as well.

00:21:08.680 --> 00:21:27.370
Peter Middleton (Guest)
That are going on in the world of dementia and you know, where funding is concerned. I want to look at the medical advances and the technical advances for people with dementia It’s a massive subject. I want to look at what battles we need to fight because like anybody who's got a fight. so you know we need to know which ones to pick.

00:21:28.260 --> 00:21:35.810
Peter Middleton (Guest)
And I want to know what they are and then I want to communicate that so. So that's why I got the blog many, many different reasons.

00:21:38.670 --> 00:21:45.940
Jacqueline Parkes
Brilliant. UM, we've got Pascal. Uh has got it. Got his her hand up Pasco.

00:21:47.400 --> 00:21:47.800
Pascale Heins (Guest)
Yes.

00:21:47.440 --> 00:21:47.850
Jacqueline Parkes
Her.

00:21:48.460 --> 00:21:48.750
Pascale Heins (Guest)
I.

00:21:50.490 --> 00:21:56.370
Pascale Heins (Guest)
Yeah, it's always difficult to say. Nice. Nice to meet you. And thanks for your talk. It's so interesting and inspiring.

00:21:57.100 --> 00:22:08.930
Pascale Heins (Guest)
Yeah, I I have one question because you said it's really important to keep people with dementia updated about the research process. Uh, what is a new experience, the best way to do it?

00:22:10.340 --> 00:22:14.270
Peter Middleton (Guest)
I think that the relationship, if you can, I don't know. It depends of course, how many.

00:22:14.960 --> 00:22:44.020
Peter Middleton (Guest)
Uh, how many lab rats you've got, doesn't it? But if you can, you know, I think the relationship, the best relationship tab with somebody, as I said, and it's a collegiate ones, you know, treat the people who are who are your subjects as team members 'cause, you know they are we are we we want to be, we want to be team members so treat them just like you would you'd see members maybe have a a webinar every now and then now that people can't get out.

00:22:44.730 --> 00:22:49.600
Peter Middleton (Guest)
Uh, you know, that's the way to keep people in touch. Maybe have a newsletter if it's a long project.

00:22:50.570 --> 00:22:51.400
Peter Middleton (Guest)
Every now and then.

00:22:52.130 --> 00:22:56.190
Peter Middleton (Guest)
Obviously there are things you can't very often in projects there are things you can't.

00:22:56.880 --> 00:23:02.420
Peter Middleton (Guest)
Tell you can't give away. We understand that. Let us know what we can expect and what we can't expect.

00:23:03.170 --> 00:23:08.390
Peter Middleton (Guest)
You know, and I've known people on clinical research projects who want to be told whether they’re on the placebo or not from day one.

00:23:09.710 --> 00:23:14.720
Peter Middleton (Guest)
So that 'cause if they're not gonna be if. If they're going to be on the placebo, they don't want to take part. Well, you know.

00:23:16.150 --> 00:23:24.820
Peter Middleton (Guest)
Sort of defeats the object really doesn't it? But. But there are people like that. So you know, keeping in touch with people, there are many ways, but they're all about really.

00:23:26.840 --> 00:23:36.680
Peter Middleton (Guest)
They're all about making people feel valued and making them feel part of the team and making them comfortable. Also, if you're speaking to people about something, if they're comfortable.

00:23:37.530 --> 00:23:45.380
Peter Middleton (Guest)
They'll naturally be more relaxed and more honest and more valuable. You'll get more out of them, especially people with dementia. It's hard for us sometimes to speak.

00:23:46.030 --> 00:24:00.300
Peter Middleton (Guest)
I mean, I'm excited about speaking to everybody today so I'm full of it and I can't. I can't stop. But tonight, I’ll probably have trouble finishing my sentences. You know, I this meetings too short for me. I I take it you're talking to us from the Netherlands.

00:24:02.050 --> 00:24:02.700
Pascale Heins (Guest)
Yes.

00:24:02.140 --> 00:24:04.570
Peter Middleton (Guest)
Well, you know what you're doing some great work.

00:24:05.190 --> 00:24:20.700
Peter Middleton (Guest)
In the field of dementia, I'm looking into the elder clowning that's going on in some of your care homes and some of the work that people are doing there because I'm convinced that we ought to be using therapies like that here in the UK and we just don't so much.

00:24:21.550 --> 00:24:22.290
Peter Middleton (Guest)
You know, so.

00:24:22.350 --> 00:24:27.770
Peter Middleton (Guest)
Yeah. So this international thing that we have going, it was also just wonderful.

00:24:28.510 --> 00:24:34.470
Peter Middleton (Guest)
You know, we could steal each others ideas like crazy can’t we and learn from each other. And that's a good thing.

00:24:33.960 --> 00:24:36.950
Pascale Heins (Guest)
Yeah, definitely. OK, thank you very much.

00:24:36.700 --> 00:24:37.240
Peter Middleton (Guest)
Thank you.

00:24:37.350 --> 00:24:37.850
Jacqueline Parkes
Thank.

00:24:37.900 --> 00:24:38.790
Jacqueline Parkes
You Pascal.

00:24:39.460 --> 00:24:42.650
Jacqueline Parkes
Uh, we have Nathan?

00:24:44.170 --> 00:25:05.230
Nathan Stephens
Yeah. Hello. Hi. Hi. Pete and uh. Yeah. Cheers. And it's great to see the enthusiasm. Mm, I got a question. I mean, it's a bit of personal experience to me. I'm an unpaid carer from my grandmother who's living with dementia. I'm also a PhD researcher and at times I find it hard to detach myself from my care responsibilities and.

00:24:44.990 --> 00:24:45.670
Jacqueline Parkes
Hi, Nathan.

00:24:46.400 --> 00:24:47.050
Peter Middleton (Guest)
My Dyson.

00:24:55.890 --> 00:24:56.250
Peter Middleton (Guest)
Yeah.

00:25:06.120 --> 00:25:12.550
Nathan Stephens
Uh, and obviously being a research and I just thought like obviously you sound like you've been around academics and professionals a lot.

00:25:13.260 --> 00:25:16.250
Nathan Stephens
And doing PPI, however sort of.

00:25:17.490 --> 00:25:27.010
Nathan Stephens
That experience of academia and around professionals in the terminology and all the rest of it, and the system, they sort of enhanced or hindered your ability to offer, really raw.

00:25:27.690 --> 00:25:30.550
Nathan Stephens
Real life PPI about the experiences living with dementia.

00:25:31.520 --> 00:26:00.320
Peter Middleton (Guest)
Well, that's a really good question. And I have I'm gonna disappoint you, 'cause. I'm gonna say my answers are going to be both because, yeah, I'm, I'm learning new things. Of course the jargon that you use just trips off the tongue and you don't even have to think about it, doesn't it? And for me, I often have to write things down and go away and do a bit of research on that for that three letter acronym because I love my head but I don't really understand it. But I don't want to look as if I don't.

00:25:32.500 --> 00:25:33.390
Jacqueline Parkes
Good question.

00:26:01.160 --> 00:26:07.990
Peter Middleton (Guest)
And I don't feel as if I can ask because the rest of the company will be bored listening to an explanation of something that they already know about.

00:26:09.880 --> 00:26:20.390
Peter Middleton (Guest)
Uh, but on the other hand, knowledge is power, so once I do understand that it, it shines a light onto my own.

00:26:21.320 --> 00:26:26.200
Peter Middleton (Guest)
Perception of, of the things that are happening to me. Does that make sense?

00:26:27.070 --> 00:26:31.010
Peter Middleton (Guest)
Sometimes I don't understand what's happening to me. I know that I'm changing.

00:26:31.880 --> 00:26:39.670
Peter Middleton (Guest)
As there go down this journey, I know that some you know some I that when I hear a piece of music now.

00:26:40.410 --> 00:26:44.810
Peter Middleton (Guest)
And I burst into tears because I can't I I can't control it.

00:26:45.740 --> 00:26:46.670
Peter Middleton (Guest)
I um.

00:26:48.690 --> 00:26:58.500
Peter Middleton (Guest)
I want to know why it piques my interest. I want to come to terms with why do you see? I know it's part of the journey, but it's but it still surprises me.

00:26:59.300 --> 00:27:01.880
Peter Middleton (Guest)
When something new happens, especially as we're all so different.

00:27:03.020 --> 00:27:17.100
Peter Middleton (Guest)
I I guess in a way dimensions like depression, there are hundreds of different types of depression and no, you know, no two seem to be the same and no two people's journey seems to be the same. There are certain things we can say, you know that people with I don't know.

00:27:03.110 --> 00:27:03.540
Nathan Stephens
Yeah.

00:27:17.150 --> 00:27:18.700
Peter Middleton (Guest)
We have. Uh.

00:27:19.960 --> 00:27:32.280
Peter Middleton (Guest)
Lewy body disease may have may be prone to certain symptoms and other people not but.

00:27:33.420 --> 00:27:37.250
Peter Middleton (Guest)
But that's but. But that's just, you know, the, the little things.

00:27:38.060 --> 00:27:45.900
Peter Middleton (Guest)
It's like pick n mix, isn't it? Yeah. We all seem to have different. We all seem to to be living with slightly different things. Strange.

00:27:46.820 --> 00:27:51.680
Peter Middleton (Guest)
I mean, you, you, you do you, are you a member of any peer groups for for, for carers?

00:27:46.920 --> 00:27:47.350
Nathan Stephens
Yeah, I.

00:27:52.310 --> 00:28:06.880
Nathan Stephens
No, no. I mean I've joined like the is it a National Institute for Health Research becoming but involved in dementia research. I'm part of that and but no I found I found it like hard to associate myself with my caring.

00:28:07.770 --> 00:28:20.580
Nathan Stephens
Role as I've got more into the PhD I’ve sort of forgot about what it's like to be a Carer, and I find it for hard to unpick my experience now and it's I just thought it was interesting in my own head and just wanted.

00:28:20.090 --> 00:28:29.120
Peter Middleton (Guest)
Yeah, it is it. Yeah. I mean, the thing is when you when you go to carers groups too, and you speak to other carers, a lot of it is doom and gloom, isn't it?

00:28:29.870 --> 00:28:31.850
Peter Middleton (Guest)
You know, there's not much that's uplifting.

00:28:32.890 --> 00:28:35.830
Peter Middleton (Guest)
You know, but but you. But the person you're caring for.

00:28:36.710 --> 00:28:37.610
Peter Middleton (Guest)
You know the.

00:28:39.530 --> 00:28:44.110
Peter Middleton (Guest)
Is there are many uplifting moments, aren't there during the time you're caring.

00:28:45.180 --> 00:28:47.080
Peter Middleton (Guest)
You know, because that person’s happy.

00:28:48.650 --> 00:28:55.370
Peter Middleton (Guest)
There, there. You know, I always think, I’m told we mustn't say that we're living well with dementia by some of my colleagues?

00:28:56.060 --> 00:28:57.180
Peter Middleton (Guest)
But I honestly am.

00:28:58.200 --> 00:29:07.510
Peter Middleton (Guest)
And when I move away from the now to what whatever place I'm gonna go to later on if you know what I mean in my head.

00:29:08.310 --> 00:29:11.300
Peter Middleton (Guest)
I may not be responsive, but it doesn't mean that so I'm not happy.

00:29:12.530 --> 00:29:14.560
Peter Middleton (Guest)
It? It's difficult, isn't it?

00:29:15.700 --> 00:29:19.640
Peter Middleton (Guest)
It's really difficult. I can't put myself in the shoes of a Carer.

00:29:15.860 --> 00:29:16.600
Nathan Stephens
Cheers Peter.

00:29:20.660 --> 00:29:21.850
Peter Middleton (Guest)
Uh, I can't. I've tried.

00:29:26.700 --> 00:29:27.910
Peter Middleton (Guest)
It's a yeah.

00:29:28.910 --> 00:29:33.130
Peter Middleton (Guest)
It's difficult. I never thought I'd be able to put my shoes myself in the shoes of a person living with dementia.

00:29:37.230 --> 00:29:39.230
Peter Middleton (Guest)
You know, all I can do is make sure that.

00:29:40.220 --> 00:29:47.460
Peter Middleton (Guest)
I try and put everything in place so that my partner, when she later takes over as my Carer as I know she's prepared to do.

00:29:48.140 --> 00:29:50.930
Peter Middleton (Guest)
Uh, that she already understands that.

00:29:54.150 --> 00:29:54.690
Peter Middleton (Guest)
Uh.

00:29:56.470 --> 00:30:01.950
Peter Middleton (Guest)
That I've I would appreciate everything she does and that I would still love her. Doesn't matter how I.

00:30:03.170 --> 00:30:05.690
Peter Middleton (Guest)
might behave later on?

00:30:06.730 --> 00:30:08.330
Peter Middleton (Guest)
That's not me. That's the dementia.

00:30:12.410 --> 00:30:17.830
Peter Middleton (Guest)
Dementia doesn't stop you loving somebody. It might stop you expressing it. That's it. I'm afraid that's the bottom line.

00:30:20.110 --> 00:30:22.400
Jacqueline Parkes
And I think that's a.

00:30:23.430 --> 00:30:53.590
Jacqueline Parkes
Incredibly poignant, Peter and I think it's very honest and open and I've just picked up from Dawn in the chat box and I just wanted to feed that back to you at this point. because it's really helpful. Hi, Peter. Thank you for such an insightful presentation. I think very few of us can put ourselves into the shoes of somebody.

00:30:53.700 --> 00:31:01.380
Jacqueline Parkes
with dementia, or even somebody who is caring for somebody 24 hours, and I think it's really important to understand that.

00:31:03.230 --> 00:31:32.560
Jacqueline Parkes
You're not just caring about somebody, are you loving them and in a relationship with them so Dawn's talked about from personal experience Care Buddies can be beneficial, but the problem seems to arise when there is a lack of understanding in their roles and maybe there is this blurring of roles between being wife, partner, husband and carer and there's some blurring around the edges. So I know you and your wife are have a very good strategies.

00:31:33.350 --> 00:31:36.790
Jacqueline Parkes
for leading each day as it comes, don't you?

00:31:39.300 --> 00:31:47.670
Peter Middleton (Guest)
Everybody works differently, you know, but Pam and I have never had any secrets from each other. We've always.

00:31:46.900 --> 00:31:47.230
Jacqueline Parkes
So.

00:31:47.730 --> 00:32:01.270
Peter Middleton (Guest)
Uh, uh sat down and talked about anything any great, any large or small events in their lives, and come to a mutual agreement. It's called blame sharing, and it's worked for us.

00:32:02.650 --> 00:32:04.060
Peter Middleton (Guest)
So we always do that.

00:32:04.720 --> 00:32:12.790
Peter Middleton (Guest)
Yeah, you know, it's another. It's another conversation, I suppose. But, you know, when you after you're diagnosed when you leave that neurologists office.

00:32:13.340 --> 00:32:16.570
Peter Middleton (Guest)
Uh, you got to get cracking 'cause you got work to do.

00:32:17.250 --> 00:32:36.970
Peter Middleton (Guest)
Uh, you've gotta put things in place and cement them so that you can live the rest of your lives as best as you possibly can and get on and enjoy them so you do with those LPAs those lasting powers of attorney. You do that will, you have those end of life conversations you figure it out.

00:32:37.720 --> 00:32:38.110
Jacqueline Parkes
Wow.

00:32:37.830 --> 00:32:42.000
Peter Middleton (Guest)
You figure out what you're gonna do with your, your pensions and your money situation, and then you get on with it.

00:32:42.620 --> 00:32:43.120
Jacqueline Parkes
So.

00:32:42.760 --> 00:32:43.240
Peter Middleton (Guest)
It’s done.

00:32:44.050 --> 00:32:44.450
Jacqueline Parkes
Yeah.

00:32:44.050 --> 00:32:49.010
Peter Middleton (Guest)
But too many people don't. If they, they won't confront those problems.

00:32:49.920 --> 00:32:51.430
Peter Middleton (Guest)
And of course, they’ll only get worse later.

00:32:50.320 --> 00:32:50.580
Jacqueline Parkes
Yeah.

00:32:53.010 --> 00:33:03.110
Jacqueline Parkes
And I wanted to thank you, Nathan very much for that honestly and for that question, I think it's really good to share those thoughts with us so thank you very much for that.

00:33:00.760 --> 00:33:01.120
Peter Middleton (Guest)
Yeah.

00:33:03.400 --> 00:33:04.760
Nathan Stephens
No you're welcome. Cheers.

00:33:05.240 --> 00:33:20.050
Jacqueline Parkes
From Tessa we have a a comment and a question Peter. Peter, have you been part of the Dementia Pioneer projects via deep? If So what research did you do? Did you drive?

00:33:21.180 --> 00:33:22.420
Peter Middleton (Guest)
I said no, I haven't.

00:33:23.040 --> 00:33:30.800
Peter Middleton (Guest)
I must be honest, I've used deep actually I've used them so far, but because there's so full of knowledge.

00:33:31.490 --> 00:33:34.020
Peter Middleton (Guest)
And they're very pleased to give it.

00:33:36.330 --> 00:33:47.250
Peter Middleton (Guest)
Uh, I don't know if you can hear me. I've got a message to say. Recording and transcription. Oh yeah. No, we're alright. Yeah, they're very pleased to give it. So I've been involved with their craftivism initiative.

00:33:48.220 --> 00:33:51.170
Peter Middleton (Guest)
To show that you know people live with dementia can still do stuff.

00:33:51.910 --> 00:33:54.390
Peter Middleton (Guest)
Uh, I I keep their little.

00:33:54.990 --> 00:34:07.590
Peter Middleton (Guest)
Uh, they little tag on my website that says, you know, that says I’m a dementia craftymiss, you know, and I, you know, I because I I made my own my own blog site and they’re pioneering projects that you see.

00:34:08.580 --> 00:34:15.060
Peter Middleton (Guest)
Deep for me are the go to people if I want to try and start something up locally and I need advice?

00:34:16.750 --> 00:34:20.250
Peter Middleton (Guest)
That's what I that's what I've been using deep for so far.

00:34:21.460 --> 00:34:38.680
Peter Middleton (Guest)
I get I. I read their newsletter but like but they haven't been involved with me. They haven't been in touch with me to involve me in anything personally. Well, one day I hope they do. They know that I'm available. And one day I hope they do, but I don't think they're involved in much around by Northamptonshire, if anything at the moment.

00:34:40.700 --> 00:34:48.770
Jacqueline Parkes
Uh, thank you for that, Pete, and certainly Tessa’s put a link in the chat box for those of you that might be interested UM.

00:34:50.740 --> 00:35:08.600
Alison Ward
Just wanted to go back to Dawn’s question if that's alright. Jackie, I think we missed off her last bit of her question, Dawn was asking about Buddying Pete. UM, and she said if you were to design A do and don'ts of buddying, what would be the most important advice?

00:34:50.780 --> 00:34:51.200
Jacqueline Parkes
About.

00:34:55.600 --> 00:34:55.950
Jacqueline Parkes
Yeah.

00:35:10.580 --> 00:35:13.310
Peter Middleton (Guest)
We're talking about peer to peer buddying now.

00:35:13.990 --> 00:35:18.540
Alison Ward
I I don't know, Dawn, maybe you could confirm whether it's peer to peer.

00:35:19.180 --> 00:35:24.490
Alison Ward
Uh in the chat, but if we if we take it as peer to peer for now Pete, is that alright?

00:35:25.170 --> 00:35:27.420
Peter Middleton (Guest)
Yeah. Yeah, well, I'd say.

00:35:28.240 --> 00:35:28.880
Peter Middleton (Guest)
Uh.

00:35:30.070 --> 00:35:37.230
Peter Middleton (Guest)
That's if you're setting up a peer to peer buddy, and you've got to moderate that buddy in to start with.

00:35:38.240 --> 00:35:38.990
Peter Middleton (Guest)
Uh.

00:35:39.760 --> 00:35:45.010
Peter Middleton (Guest)
There are certain types of dementia in which people become.

00:35:47.370 --> 00:36:02.590
Peter Middleton (Guest)
Can become a little bit weird if you know what I mean. I I have, I do know cases of one or two ladies who are living with dementia, who I'm in contact with, who have been contacted inappropriately by people on chat boxes on the zoom.

00:36:03.480 --> 00:36:06.430
Peter Middleton (Guest)
And other bits and pieces.

00:36:07.610 --> 00:36:20.270
Peter Middleton (Guest)
Uh, which they've understood and dealt with. But you know, I wasn't even aware that that people, you know, the people did that sort of thing, but they do so when you match people, you've got to match them very carefully, I think.

00:36:21.170 --> 00:36:23.470
Peter Middleton (Guest)
Also, you need to match their politics.

00:36:24.520 --> 00:36:29.170
Peter Middleton (Guest)
Uh, because what you want is buddies, not adversaries.

00:36:30.170 --> 00:36:42.040
Peter Middleton (Guest)
So I don't know it to a certain extent look at how matchmaking sites do things I guess where they match people's interests. And I think that's quite useful and also.

00:36:43.300 --> 00:37:03.050
Peter Middleton (Guest)
Do, willl you be doing it online or are we talking about people who are local and could actually meet up to go to the cinema together or you know, or or social events or something like that? You know, there's an old gentleman in the village. I call him old, he's my age and we go to the cinema every now and then together, we go walking together. We're buddies.

00:37:03.870 --> 00:37:05.370
Peter Middleton (Guest)
You know, and that works really well.

00:37:06.200 --> 00:37:06.710
Peter Middleton (Guest)
Uh.

00:37:07.440 --> 00:37:18.970
Peter Middleton (Guest)
Uh buddies are good when you when you're walking, especially you can walk in a group and you can drop in and out of conversations just by slowing down or speeding up when you're walking just to walk alongside someone else for a little while.

00:37:19.790 --> 00:37:24.560
Peter Middleton (Guest)
And when you’ve heard the same story twice, you just slow down a bit and speak to the next person.

00:37:26.050 --> 00:37:35.750
Peter Middleton (Guest)
And that works quite well. I'm all for buddying and I think it's great. My problem is I can't find enough bodies. People with dementia we can't find each other? Where do we, where do we find each other?

00:37:36.410 --> 00:37:37.010
Peter Middleton (Guest)
Uh.

00:37:37.600 --> 00:37:38.310
Peter Middleton (Guest)
Uh.

00:37:39.460 --> 00:37:42.370
Peter Middleton (Guest)
You know anyone from Northamptonshire will know that.

00:37:43.240 --> 00:37:46.460
Peter Middleton (Guest)
There are lot more people living with dementia than we ever see.

00:37:46.710 --> 00:37:47.980
Jacqueline Parkes
Uh. Uh.

00:37:47.310 --> 00:37:50.070
Peter Middleton (Guest)
We find it hard to winkle people out they’re hidden away.

00:37:50.770 --> 00:37:51.940
Peter Middleton (Guest)
We just can't find them.

00:37:52.730 --> 00:37:53.140
Jacqueline Parkes
Uh-huh.

00:37:53.280 --> 00:38:07.220
Peter Middleton (Guest)
Maybe there ought to be some sort of law that says every time a neurologist makes a , uh, a diagnosis that they ought to be putting names on a register to be contacting, I don't know.

00:38:05.740 --> 00:38:09.110
Jacqueline Parkes
Yeah, yeah.

00:38:12.120 --> 00:38:12.650
Jacqueline Parkes
Okay.

00:38:16.660 --> 00:38:17.800
Alison Ward
Thank you for that, Pete.

00:38:19.620 --> 00:38:22.740
Alison Ward
Has anyone got any more questions or comments they’d like to share?

00:38:29.480 --> 00:38:32.100
Jacqueline Parkes
We've got one from Fleur in the chat box.

00:38:36.300 --> 00:38:44.450
Jacqueline Parkes
In your personal opinion, do you think there is enough support for care givers looking after somebody with dementia, someone with dementia?

00:38:45.830 --> 00:38:57.470
Peter Middleton (Guest)
Goodness, supposing I said yes Fleur you know I was properly mad wouldn't you. Of course, there's not enough. There's nowhere near enough care. Uh, support for caregivers.

00:38:58.360 --> 00:39:10.030
Peter Middleton (Guest)
You know, I was talking to someone the other day and you know we have and I'm not making a parody but we have Alanon for families of people with drinking problems.

00:39:10.860 --> 00:39:32.980
Peter Middleton (Guest)
Why don't we have Carenon so it's not just the carer who's having support wrap round it’s the families of the carers. If the carer is one brother or one son or one daughter of the person living with dementia, what about the other sons and daughters? What about the questions that are on their mind? How do we wrap care about them?

00:39:34.100 --> 00:39:36.020
Peter Middleton (Guest)
You know, there's nowhere near enough care.

00:39:37.060 --> 00:39:43.370
Peter Middleton (Guest)
Uh, and a lot of the care, a lot, a lot of the meetings that are there for carers.

00:39:44.840 --> 00:39:57.120
Peter Middleton (Guest)
They're still mixed with meetings for people living with dementia, and it's very difficult for someone with dementia to go to a meeting where there are Carers talking too, because the conversation that we here, which is from the Carers heart.

00:39:57.850 --> 00:40:02.500
Peter Middleton (Guest)
It's quite frightening and quite disturbing for us on our journey.

00:40:03.150 --> 00:40:05.090
Peter Middleton (Guest)
We'd rather not know about that yet, thank you.

00:40:05.640 --> 00:40:07.550
Peter Middleton (Guest)
Uh, because uh?

00:40:08.140 --> 00:40:09.810
Peter Middleton (Guest)
It because it's scary.

00:40:10.970 --> 00:40:11.570
Peter Middleton (Guest)
So.

00:40:12.520 --> 00:40:13.880
Peter Middleton (Guest)
I think we need to keep.

00:40:15.100 --> 00:40:23.680
Peter Middleton (Guest)
The two apart, except of course, for where we're on committees where we're giving our points of view and our voices.

00:40:24.270 --> 00:40:26.040
Peter Middleton (Guest)
Of lived experience.

00:40:26.700 --> 00:40:30.130
Peter Middleton (Guest)
But of course, you know, I’ve got to keep my carer sweet.

00:40:30.840 --> 00:40:39.640
Peter Middleton (Guest)
Because she's going to be my carer. She's my PA at the moment, she’ll be my carer further down the line so I want to make sure there's as much support as possible for her.

00:40:41.450 --> 00:40:43.350
Peter Middleton (Guest)
Because I won't be able to do it myself.

00:40:45.690 --> 00:40:48.770
Peter Middleton (Guest)
But at the moment, there's nowhere near enough nowhere near.

00:40:53.150 --> 00:41:11.300
Peter Middleton (Guest)
And that's my opinion. In fact, I've been trying my local library to get a Carer’s group in there, not just for carers or people with dementia, but carers have a lot in common anyway, and there are carers for people with autism out there as you know for people with special needs. Why don't all the carers get together?

00:41:12.130 --> 00:41:14.640
Peter Middleton (Guest)
I think you share the load and maybe look after each other.

00:41:15.730 --> 00:41:20.700
Peter Middleton (Guest)
Every now and then. You know and why is there no respite for carers, for goodness sake.

00:41:22.240 --> 00:41:30.820
Peter Middleton (Guest)
Quite often when carers are sent on respite they’re sent away with the person they're caring for, there's not much respite there, is there? We're going to have a chalet for a week.

00:41:31.970 --> 00:41:37.450
Peter Middleton (Guest)
Then take the person you're caring for with you. No, actually, you'd like to go on your own for a week wouldn’t you?

00:41:38.440 --> 00:41:42.220
Peter Middleton (Guest)
Just to get a breath of fresh air and get your head above the water a little bit and take a breath.

00:41:46.490 --> 00:41:48.000
Alison Ward
Thank you, Pete. That's some.

00:41:48.780 --> 00:41:50.840
Alison Ward
There's some really good points there and I think.

00:41:51.470 --> 00:41:55.900
Alison Ward
I think it comes down to again that what you were saying about how.

00:41:56.600 --> 00:42:06.520
Alison Ward
How would you know? You don't often know who the other people are in your local area. Who maybe will be to support each other and provide that that kind of.

00:42:07.580 --> 00:42:10.130
Alison Ward
I was going to say Collegiate but you know the peer support.

00:42:11.440 --> 00:42:12.250
Alison Ward
With each other.

00:42:13.710 --> 00:42:20.450
Alison Ward
And I I know service provision is different across the country and then I'm sure people from other countries will agree as well that there's.

00:42:21.050 --> 00:42:27.660
Alison Ward
There's not enough consistency in what we're providing and how we're providing it. So that makes it even more challenging I think.

00:42:28.540 --> 00:42:33.740
Peter Middleton (Guest)
I worry for those who are on their own, I worry for the carers that are caring on their own.

00:42:34.650 --> 00:42:35.750
Peter Middleton (Guest)
And that that.

00:42:36.320 --> 00:42:37.320
Peter Middleton (Guest)
Don't know.

00:42:37.950 --> 00:42:52.210
Peter Middleton (Guest)
That there are people out there who can help them. They don't phone Alzheimers society or one of those dementia charities and ask for help. They don't phone Age UK or whoever that person might be. I worry about the people who are living with dementia, who were on their own.

00:42:53.130 --> 00:42:55.590
Peter Middleton (Guest)
And that we haven't contacted yet.

00:42:56.380 --> 00:42:57.950
Peter Middleton (Guest)
Uh, yeah.

00:42:59.200 --> 00:43:02.400
Peter Middleton (Guest)
Yeah, but that's a big job, we've gotta do too, I think.

00:43:03.260 --> 00:43:04.570
Alison Ward
Yeah, absolutely.

00:43:06.040 --> 00:43:18.370
Alison Ward
I think I just in response to what you've been talking about as well, Nathan responded and said that, you know, it's about social, economic support needs and it's a social justice matter as well.

00:43:20

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