Nutrition and Hydration with John Major

Melanie:

Welcome to the Family Carer podcast, where we help mums, dads, aunts, uncles, daughters, sons, friends, anyone who's providing care for a family member or a loved one to feel supported in their role and connected to their community. This week we're joined by John Major who was himself a family carer for his late wife following her dementia diagnosis. His lived experience and insights provide comfort as well as practicalities and I hope that you'll find those useful. John's experience subsequently led him to become involved with the Alzheimer's Society with dementia research and leading into his current collaboration with Bournemouth University on their tomato research project, which hopes to improve nutrition and hydration for people living with dementia. In this episode, we're going to explore what carers should know about meal provision and ensuring proper hydration for their family members. Why good nutrition is important for people receiving care and what that might look like. and how family carers can accommodate changes in taste buds and preferences in their loved one's diets. So if you're currently providing care for somebody and you're struggling a little around nutrition and hydration and want to find out more, then this episode's for you

I'm Melanie Cohen. Stay with us.

Hi, John. How are you today?

John:

I'm well, Melanie. Thank you very much. Nice to be invited here.

Melanie:

Thank you very much for joining us. It's great to have you. So I have met you before, and I've had the pleasure of hearing you speak. But for anybody who doesn't know you, perhaps we can start by just allowing you to introduce yourself. Right.

John:

Well, Although we met in very much academic surroundings on a university campus, I'm not an academic. I'm very much a family carer, or was originally. Not necessarily that I thought I ever would be. But my involvement with dementia goes back 30 years. When my wife turned to me once in the morning and she said, we have a problem. And the problem was that she was feeling that her thought processes were being challenged. So it wasn't some of the obvious signs, forgetfulness or anything. It was her thought processes were being challenged. And she'd just nicely turned 50. And so it came as a little bit of surprise. And we thought, well, what could it be? Now, she was rather suspicious of what it could be. We went through the usual routine, but because of her age, there was no question that anybody was trying to, you know, the GPs couldn't push this off. She had a referral, and yes, she had an Alzheimer's diagnosis. So that was the start point, I'm afraid, and that was some 30 years ago. Wow. And so we walked together the pathway for 18 years.

Melanie:

So you've got real lived experience around this, John?

John:

Well, at that time, yes, because although I realise that everybody presents differently along the, as they go along, well, the pathway seems to be well talked about, but also they progress differently as well. Yeah. Possibly at 18 years was a slower, Generally speaking, a gradual progression, but that cannot be taken as the norm because everybody is different and we ought to remember that. But I think what I did learn overall was that by going along the line, observing things, reacting to circumstances, surprise me now, in retrospect, how I'm now able to use that experience, hopefully for the benefit of others.

Melanie:

Yeah, amazing. And it's so I'm so grateful that you've come here today. So as we can really allow you to share that that experience with our listeners, because I know that yours was your experience was directly related to that Alzheimer's diagnosis with your wife. But I think regardless of the health condition, the experience as a family member can be likened or many people be able to relate to that regardless of what the condition is that their loved one has been diagnosed with. And I think when we're talking today, much of what you're saying will relate back to the Alzheimer's, but it doesn't mean that it's only relevant for people who have that diagnosis. OK, so you mentioned that your wife presented you with that question one morning, which must have been a great shock at the age that she was at the time of 50. So how long ago was that? How far back are we going?

John:

We're going back to 1994, 95, the end of 94. So this literally is a 30-year mark.

Melanie:

So I should imagine that the support you got at the time from the doctors and the services that were available were probably very different to what people have access to these days.

John:

The word support doesn't come into it I'm afraid. The consultant with the diagnosis was very good, but, we're talking about now mid-90s, the consultant said, but there is no service that the NHS can offer you at the moment. There is no medication whatsoever, nor on the horizon that is prescribable yet. But, should other conditions develop, then of course the NHS will be available. Well, over the 18 years, the other conditions did, and because of the lack of help that was available in the first place, it probably became harder for those conditions to be dealt with, but that's another matter. The other issue was that she said that there will be no social care available because at the moment social care for dementia services starts at 65. I sought clarification for that. I said, we're talking potentially of a terminal condition. but it's age-related to support. Because the whole ethos at the time was that it was an elderly person's condition, therefore services can be shared. So somebody that presented to us said no. So in answer to your question, when you first opened our chat and you referred to support, wow, where was that support?

Melanie:

You must have felt very isolated, abandoned almost.

John:

Yes, it was a very difficult situation. I tried to familiarize myself with what was available. You have to remember that there was no internet, so I couldn't log on to any information sites and download information. I did contact the Alzheimer's Society. who was not the organisation that it is now in the mid-90s. And they sent me an information pack, a lovely pack, I can remember it now, a nice yellow folder, with 30 black and white double-sided A4 sheets, all beautifully printed. And that was a frightening amount of information at this stage. And this was the first point that I realised, is that what a carer needs is information that is relevant to the condition that they are currently facing. They want to know how to deal with this, whereas this, although very useful, very helpful, and I've used it in other ways as part of my own learning process. That really wasn't what I wanted at the time. And it's a question of providing information that is relevant at the time as well as just preparing for the progression so you can anticipate and handle it accordingly.

Melanie:

I think that's a really good tip for our listeners, to focus on what's relevant at this moment, with the condition that your loved one has been diagnosed with, rather than, and as you've quite rightly said, we now have the internet, and it's very easy just to do your own research, but it can very quickly become very overwhelming. So I think just focusing on the now.

John:

I mean, since then, well, I'll give you an aside. I always was a bit of an awkward person, I suppose. So once we'd sorted ourselves out, and I got this information from the Alzheimer's Society, but then I sought a meeting with my MP. And a bit like all MPs, they try to find out what it is you're going to talk about, and try to indicate it to his office, et cetera. So I think he was really anticipating that I was going to complain, and he was ready for that. I said, I'm not here to complain. I'm here to ask what I can do, because the current situation is totally unacceptable. Well, I've discovered that is the way to work with an MP, because he was absolutely wonderful. He opened doors for me, set up introductions to the regional head of commissioning, the chief executive of the local health care trust, the social care directorate, and as well as the Alzheimer's Society. And I was invited to a few meetings of the old parliamentary party, dementia group party meetings. So all MPs from various parties were all there for dementia meetings. They meet fairly frequently. And so I was invited to some of their meetings as well. So this was a door opener.

Melanie:

So that sounds like the start of your journey to actually trying to help others who found themselves in the same situation.

John:

That was the start of my journey and then in conjunction with the Alzheimer's Society, which I then went back to and they suddenly realised, ah, this person is, so I became a volunteer. So I've been a volunteer with the Alzheimer's Society for a long, long time. And originally it was awareness raising and trying to get services, trying to get carer support as well as individual support. So, we now have support services, yes, memory assessment services, et cetera, et cetera. But 30 years ago?

Melanie:

You didn't?

John:

No. So, yes, things have improved. And I changed what I do, as circumstances changed, because once things were started to happen, once we started to get the support, then I wanted to readdress what I did. And one of the things going back to that memorable day 30 years back was my wife then said to the consultant, she said, well, I am so young for what was classified as Alzheimer's to have a diagnosis. Can I offer myself for research? And she was told, there isn't any. Now, again, things have changed. Yes. Seriously, things have changed. So when my awareness-raising and campaigning role was not quite what was needed, I joined the Alzheimer's Society Research Network. Amazing. Because then the Alzheimer's Society was already starting to fund research, but the ball is rolling. There's now a number of people funding research. But what I've done, and there's now a number of Alzheimer's volunteers, we're bringing lay experience. So people that are watching us chat now, they have this experience. And it allows us to bring a different perspective to research, to its outcomes, to discussions with the academics that are doing the work, as well as reviewing and agreeing funding. But we have a different perspective as to where research is going, what's really needed, what are the priorities.

Melanie:

Yeah, absolutely. That real insight of what the services need to be able to deliver. And so essentially you're steering the future of those services, which is, I guess it sounds to me like that's where you felt you needed to put your energy when your wife had that diagnosis and you found that there wasn't the support out there that you needed. you felt that's how you could influence the future and hopefully that meant that along that 18 year journey that you had with your wife that you did receive some support that you needed or the support certainly improved over time.

John:

It improved but for example When she was offered a place to attend a day centre, because we had recognised that she could attend a day centre, yes, OK. Although she wasn't originally meeting the age criteria. But she went to a day centre, it's from Social Security, and after two meetings, they said, we can't really handle her. She's got dementia. And we said, well, yes, that's why. So then they announced that there's going to be a specialist dementia day centre. She did a few visits there, but she'd already progressed to the point where it was beyond their capabilities. Now, I was still looking after her as a carer. but they could not handle because the expertise was not actually within the structure. Now, I do think things have changed, but some of these frustrations, there's a long way, a lot to learn, a lot to pick up, and a lot of people need to pick up. the experience. Anybody that's delivering care develops it on the ground, but a professional caregiver, whether it's a day centre or such as yourselves, you've got to be fully aware of what is happening.

Melanie:

Absolutely.

John:

There are certain weak things also, because when, for example, a carer, with their weak spots, is meeting the changes that come along. Remember this vividly, for example. I used to try to keep my wife involved in things as much as possible. And, I mean, initially I had to introduce myself to the kitchen. I was a really stone-age husband, I'm afraid. So I introduced myself to the kitchen and then, of course, I was introduced to the washing up. However, she used to assist me with the drying. And one day, oh, we'd all love to do this. She suddenly said, she put the tea towel down and she said, I can't do this anymore, and walked out. I never went back to the kitchen again. Oh, I'd love to be able to do that.

Melanie:

I'm sure many of our listeners also would love to do that.

John:

Now, what a reaction, you see. Now, you have to say, you've got to accept that. That is it. There's no point in revisiting it. There's no point in asking her, would you like to try again? That's it. You've got to accept that. And this is a marker that you've got to remember. Things change. You need to accept it. And your response to a carer's response has to be total agreement. Don't argue. Don't be confrontational. Don't say, well, you did it yesterday. Just accept it and smile. Because this is their window to the world. I feel sorry for my wife having to look at this, but never mind. I probably had a little more hair then.

Melanie:

So you mentioned the kitchen which leads us in really nicely to the nutrition and hydration piece because I know you're involved with the tomato project at Bournemouth University which focuses on nutrition and hydration for people who are living with dementia and I don't want to go into that in too much detail today because that's another whole topic in itself. But clearly you were very driven to becoming involved, more involved with improving outcomes for people living with dementia through nutrition and hydration. So maybe talk to us a little bit around what you feel would have been useful for you to know back then around nutrition and hydration and where you see the benefits for the people who are receiving the care.

John:

Right, okay. Let me take this along the way round, if I may.

Melanie:

Of course. Especially if it involves a story, because I always love your stories.

John:

When I got involved in research, I concentrated, and this may surprise you, I concentrated, because we were given the choices, what were their specialities, not to look on the care side, but on biomedical.

Melanie:

Okay.

John:

Because I thought, right, my caring now is coming to an end, or pretty well recognizing the end of the pathway. So my caring is finished. What can I do to actually stop this condition in the first place, et cetera, et cetera. So a lot of the research that I've involved myself with, not just with the lay reviews and monitoring research programs, programs that I've lived with at various universities, where we've been looking at brain tissue. If it's been live, it's been mice, fruit flies, you know, this sort of thing. Not actually human people, et cetera, et cetera. And it may be surprising to the viewers, but the lived experience does have a relevance. Because throughout this, you're looking at, well, where is it going? What is it going to deliver? And you've got to look very much precisely at what is the aim of the research, but also make sure that its information, its findings, are shared so that subsequent developments can follow on, that nothing has to start from scratch, et cetera. So it builds. And strangely enough, therefore, that's how I spent most of the research time that I've done related to the Alzheimer's Society. But however, Bournemouth University had contacted me quite a long time back. And the first thing I used to do with Bournemouth University was speak to their second year nurses training. And in those days, I used to talk about the needs of carers, and so that they could get an understanding of carers, and also demonstrate to them how the carers can be a great source of information. Because nurses are being trained in the universities, but they will then be going into acute hospital settings. An acute hospital is the last place for anybody with dementia to be. It's not the right environment at all. But the nurse's task, the doctor's task, is to look after the condition that's put them in the acute hospital. But because of underlying dementia, it makes that task harder. So the carer is a source of a vast amount of information how they can handle that dementia. So I used to develop this as part of the second year training programme with Bournemouth University for their nurses. I think, as you can see, probably that opened my door to a rather closer connection with Bournemouth, and although they don't do biomedical research, they do specialise in some great work in research surrounding dementia and care. I therefore met a number of the people and discussed. And I was delighted when Professor Jane Murphy approached me and she was talking about this hydration and nutrition project that they were thinking of. They hadn't got the funding, but we started to talk about it. And you know, the more Jane talked about it, I thought, well, I've done that. I've handled that, I've responded to that. And to suddenly realise that the lived experience that I hadn't been using on the care side directly was suddenly, wow, yes, because, because, et cetera, et cetera. And you start to see a structure. So this is where the tomato project comes into this and how the relevance of it. And so, yes, that was the start point. I contributed to the application for the funding, we got the funding, and now I'm part of the project team. We are coming to the end, the testing is in hand at the moment, towards the end of the phase one, and I'm quite sure in a few months' time, I'm quite sure that we'd be able to love the opportunity to come back, if not just myself, but some of my colleagues from the Tippie Project team, and share the findings, because this is what drives me. I don't want these findings to be locked away on a university shelf. They have to be delivered.

Melanie:

Translated into accessible resources for family carers.

John:

To family carers, and also people delivering care, such as yourself, and their staff should be caught up in this. And this project is perfect for that, from possibly throwing up the first signs of potential changing, Because you've got to be ever aware of changing, changing habits, not eating as much. If the person is living by themselves, and the family unfortunately doesn't see them every day, some of the signs could be missed. And you've got to be very careful to pick up this.

Melanie:

So what, other than not eating as much, what other signs might people look out for?

John:

Well, weight loss might be an indication that they aren't taking their food. Either sort of obvious weight loss or even things like a plate, the tooth plate, not fitting or slipping suddenly, starting to slip, etc. These are all little signs. that you've got to look out for. And a living carer, apparently, they will observe and then react accordingly day by day. But someone that isn't living with the carer, these can be missed. The occasional visit, oh, you're looking a bit thin, or you're looking too well today. This is the challenge, and we've got to try to address that. So it is important that there's a good balance. As people progress with the condition, let's be realistic about it, their food tastes will change. My wife, for example, started to bunch food up in her mouth. Cheeks were puffing out, et cetera, et cetera. The solution to encourage her to chew was to actually spice the food a little bit. Or put it another way, I suppose my cooking was too bland. So I would spice it up.

Melanie:

And that worked for her?

John:

Well, the brain realised there was some food there.

Melanie:

Chew it. So there are tips, there are practical steps that you can put in place when you notice these changes.

John:

These are some of the tips that are in there. How to handle that, how to handle place settings, how to go, finger food, snack rather than knife and fork things. Avoid clutter. Recognize that holding a cup is going to become a challenge. So there's various items of crockery available to two-handled cups, to spouted cups. Yes, I know you may not like it, but as the person progresses, they aren't going to be concerned about like or not like. It's are they getting enough to drink? Are they getting enough to eat? All of this, so colour of crockery, all of these are all part of this project, subject to the testing that's going on now. I mean, we had a mildest PPI group, which reflected the population at large. For the listeners, can you just explain what PPI is? That's a public and patient involvement group. So it's a group of people, dotted around the country, that went through, so they were carers, And we've reflected the culinary and dietary or religious-based variances throughout the country. And they've made input throughout this as well. And it's great that we've got their views. And now these are all part of. So yes, we have recognized. That's phenomenal. Because the dietary requirements are so varied across the country, that is now reflected, summarised down without wearing, no obvious labels identifying it, but there has been this input from all different communities that we have to represent. So we want to reach out to as many people as possible. So I'm looking forward to the next stage.

Melanie:

It's very exciting. All of this research is being funnelled into a really practical guide by the Sounds of Things that people can take whatever's relevant to them at that time.

John:

Yes. We hope that when we come to see you next, maybe we can have things to show you. The idea will be a little pocket handy guide or handbag guide for the family carers, as well as a nice visual publication, hard copy, so that they can refer to it, but then the little pocket guide acts as daily reminders. A more detailed one for your people, for your staff. Because this has to be part of their training. And what's being done in the testing now is actually training people, caregivers, to fully get to grips with it. And then they are testing it in practice. And this is what we're waiting for in the findings now. I'm anticipating they're going to come back and say, this was fantastic. It has improved the dietary needs of the people that are drinking more, et cetera, et cetera. They're making fluid levels up. They're better balanced. They've handled this, et cetera, et cetera. It covers all sorts of things. It covers from restlessness during food, getting up and walking around. It also tips on the environment because, for example, things like TVs on at mealtime, that's a distraction. Control the environment. If people are used to eating as a family group, they'll try to maintain it as a social group, not isolated.

Melanie:

Not just about the food on the plate, is it? It goes much deeper.

John:

Oh, it goes much, much deeper. And then it's colour as well on the plate. It's a balance of food, different colours. My mistake, the blandness if you like, it's get the balance right. Make it attractive, make it enjoyable, but recognise where we are going.

Melanie:

Yeah. I mean, John, I could sit and talk to you all day about this. I love hearing all of your stories. I love the fact that you're so passionate about sharing your experience and putting it in such good use for others to benefit from now and in the future. So thank you so much for coming and joining us today. But yeah, sadly, we're running out of time. I first met you at the Aging and Dementia Research Centre at Bournemouth University, an event that they were hosting, when I listened to you as a keynote speaker there. I was struck at that time by your compassion, your patience and your drive and determination. I'm really delighted that you agreed to come and talk with us today. So thank you very much. I'm sure that all of your tips will provide a lot of reassurance for our listeners as well, because as we know, as you know, it can often feel quite lonely and isolating and challenging. Indeed. So, yes, very reassuring. So thank you very much for joining us today.

John:

My pleasure, Melody. And frankly, I just wish to help, to share and to make life that much easier, because I wouldn't want anybody to have to walk down that 18 pathway again that I had to.

Melanie:

No, I'm sure you will be accompanying many people either directly or indirectly through all of the work that you're doing. So thank you.

John:

Thank you, Melanie.

Melanie:

Thank you for listening to the Family Carer podcast and thank you again to John for joining us today. I'm looking forward to catching up with you again soon and to welcoming you back when we talk again in the future about the Tomato Project and can share all of the resources that you're busy trialing at the moment as part of that. So if you'd like to sign up to our newsletter so you can stay in touch with everything that's happening locally, we'll pop a link in the show notes so you can do that. But yeah, it's time for us to say goodbye. So don't forget to subscribe and share this episode with anyone who you think could benefit from it. And finally, just as another shout out to the great work at Bournemouth University, the team there developed a research informed toolkit comprising a freely available material to deliver person centred nutritional care for people living with dementia. It's been used all over the UK. and in fact overseas as far as Australia. And it was the winner in 2019 of the CN Award for Nutrition Resource of the Year. So it's another incredible example of the work that's done locally here within the BCP area that we can all benefit from. Thank you, John. That's brilliant. I'm sure that we overran on time but it's difficult not to when we're chatting. Yeah, I love all of the tips that you give and just the insights with the food pouching.