Of course dementia is terrible – it’s cruel and so far incurable; it’s the condition that those over 55 fear most.  But as a campaigner and writer I feel lucky because the people I meet – those living with dementia, their families and carers, and others involved in the sector – are often so inspirational.   I am humbled by their resilience, their cleverness, their passion, determination and skill.  In my third vlog I pluck out just a few names from the scores upon scores I could mention (to those who don’t feature, huge apologies – but I hope I can interview some of you in future films).    Speaking of which, if there is someone or something – an organisation, charity, drama or enterprise – you think worthy of a vlog, do let me know. 

But for now, here are a few of my inspirations and below, as ever, is the transcript.   Once again, the best way to view the podcast is to click play and then click on the four small arrows bottom right to go to full screen. 

Hello, I’m Pippa Kelly and some of you may know me through my dementia blogs and articles.  In this series of podcasts I’m going to tell you a bit about what’s happening in the dementia world, and I’m going to focus on the very best practice and some of the inspirational people I’ve met along the way. I’m delighted to say that once again, I’m with my old friend Sue Saville, who has very kindly come along to talk to me about the inspirations, both people and organisations, I’ve met through my work.

Sue: It’s great to be with you again. Some people might think that your work with dementia, and writing about this condition, might be quite depressing, but you’ve not always found it so, have you?

Pippa: No, it can be depressing and I don’t like to try and sugarcoat the pill. You’ve got to be honest about what it is and it’s a really cruel and nasty condition, but I’m always very keen to emphasize that there is a life after dementia. It may be a different life and perhaps a limited life, but there is certainly life after a dementia diagnosis.  And the people I meet, who I’m going to talk about today, are people who, for me, show this really well in all sorts of different ways. I’ve broken down the people I’m going to talk about into three categories.

There could only be one choice for the first category and that is of course the people with dementia themselves, the people we’re here to talk about – they are everything that we are here for. The second category is that of people who are affected by dementia indirectly, so that might be a family, or carers – and I’m not only talking about what they do to support the person with dementia, but how sometimes those people will decide that they want to use their experience and do something to make life a bit better for other people with dementia and their families and carers going forward. And then the third category is a cohort of people who I’ve talked about before, and these are the little-known army of people called Admiral Nurses, who are specialist dementia nurses.

Sue: So what about those people, who’s inspired you?

Pippa: Actually, I should preface this whole podcast by giving my apologies to those people I don’t mention because it’s always a bit invidious to pick out certain characters. I have met several people with dementia – we all have of course – but through my writing (and I think perhaps because I am a writer myself) the one person I’m going to choose (and this might be slightly controversial because she’s been in the news already a lot recently) is Wendy Mitchell.

Wendy Mitchell was diagnosed with Alzheimer’s at the age of 58, a young age. Like so many people I meet with dementia she is doing everything she can to show others that there is a life after diagnosis, and she’s telling it as it is too. She has lots of attributes that I think are really important. She uses humour; she uses truth. She wrote a best-selling memoir – it is extraordinary that somebody with dementia is now a best-selling author! Who would have thought that? So, at a stroke, Wendy is diminishing the stigma that still clings to dementia. Stigma comes from people being frightened about something, and ignorant about something, and because they are frightened they don’t talk about it – so the ignorance remains, and then a vicious circle breeds, which leads to stigma. Just by being themselves and putting themselves out there, people like Wendy Mitchell, and so many others I could mention, reduce that stigma. That’s absolutely brilliant.

Sue: Does it in some way break down the fear that the rest of us might have – that there but for the grace of God go our loved ones or go ourselves? Does meeting someone like Wendy break down the fear of what can happen with dementia? She gives you a little light shining inside the reality?

Pippa: Oh absolutely. She gives you tremendous hope but, as I say, without being too “apple pie” about it – she’s very truthful. Her memoir is called Somebody I Used To Know, which is a very clever title. She talks you all the way through her journey with dementia – from the very first inklings that something is wrong (when she trips over a couple of times on her runs) to the practical steps she takes to be able to deal with it once she’s given up work. She describes what she did around the home – taking doors off cupboards, labeling things, using iPhones and iPads as really good reminders, and setting pingers and timers. So in all those very practical ways she provides support for other people.  She also reveals the extent to which her daughters were huge in her life and very helpful. This is often the way of course with family members.

But she also talks about two really important things. One is – as in the title of the book – that occasionally, not too much, but through the book, she has conversations with her younger, pre-dementia self, “somebody I used to know”. And that’s where you see that, for all that it takes away from you (she can no longer go for her runs, she can no longer work – it is a sort of succession of losses), at the same time it gives to you. For example, Wendy used to be a very, very busy person. She worked in the NHS all her life and had her two daughters; she did all sorts of things and lived life at full tilt, very fast – just like lots of us do – with no time to stop and think, and just dwell in the moment. Now that she finds herself with dementia, she talks about that. She says that now, “I stop. And I think. And I live in the moment”. We very rarely do that, and there’s something about that – there is something very positive about that.

And I relate to Wendy as a writer because what she decided to do fairly early on was to write a daily blog.  Now, I know because I’m a blogger (my blogs seem to get sparser and sparser!) that daily blogging takes a lot of effort. And of course because Wendy has dementia her blog has become her paper memory. She wrote her wonderful memoir with a journalist who, when I spoke to her (the journalist, Anna Wharton) she told me that without Wendy’s blog there was no way in the world that they could have written the memoir because, of course, Wendy wouldn’t remember.

So, for all those reasons, I chose Wendy. She’s a very articulate woman and she’s a very, very good writer. But also, in her book, she tells you about the the fear. She doesn’t shy away from that. There is one very strong passage describing how Wendy became so busy that she didn’t blog for two weeks. She has a way of sort of talking through her fingers. Even now, when her speech is a little slower than it was once, she has a wonderful way of talking through her fingers on the laptop. But because she hadn’t blogged for two weeks, when she went back to it, she had completely forgotten what to do. She sat there in front of her laptop and didn’t know what to do. Eventually, she typed something with her fingers and then she saw the envelope icon and a name she vaguely remembered – I think it was Sheila – and she sent an email. The friend who received it saw a lot of gobbledygook so she emailed Wendy back and said Wendy, this is gobbledygook. Wendy then emailed the friend back but what she wrote was still gobbledygook. So the friend had the foresight to tell Wendy to copy what she typed, which she did and then, slowly, the skill came back to Wendy, but she realized that she could never stop doing it again. And in that lies the seeds of what it’s like for everybody with dementia. Because it is such hard work. At one point Wendy says that you have a choice in a way: you can sit at home on your own and just let it all completely overwhelm you and give up, or you can get on with life. And okay, it’s going to be a different life and there is no cure, but you can still have a very full, rewarding life.

Sue: So it sounds like there are lessons to be learnt then from someone like Wendy that might apply to all of us – life lessons, mental health lessons involving routines, and things we can all do with regards to living in the moment.

Pippa: I think so – very much so. It is this way in which – especially with iPhones and things – we do seem to spend a lot of our life just not enjoying the time, the moment, as it is. Often we’re taking a photograph of the moment as it is, rather than actually living the moment as it is.

I think it’s also something to do with facing our own mortality. I remember once writing about a man who discovered he’d only got six months to live but said that in a weird way this was a sort of gift. It sounds odd to say that. But the knowledge made him stop and think. He’d been a very high level executive and he realised that he hadn’t had lunch with his wife for about seven years. And he just thought, hang on a minute, I now know that I have a finite period (which of course we all have, but in his case it was put in sharp contrast). So he decided that he was going to spend his time with his wife, his immediate family – the first inner circle – then the broader family, then the friends and colleagues, and so on. The moments that he cherished – I think he called them golden moments or precious moments – were very, very simple. They involved doing things like rowing across a lake or something, they weren’t dashing about and not living in the moment. I do hear that from quite a lot from people with dementia.

Sue: That’s an interesting point, that none of us gets out of this alive, this life.

Pippa: Yes, it’s finite.

Sue: And that, actually, perhaps we all need to be reminded of that sometimes, and that’s a very beneficial thing.

Pippa: Yes, and another person I did want to mention who lives with dementia, and who will be remembered, is a chap called Chris Roberts. Together with his wife Jayne (and I often talk about people with dementia and their family carers as being like two sides of one coin because they’re almost inextricably linked, and it can be really tough as well for family members) this couple allowed into their home, for a year, a Panorama crew (a cameraman) and that took immense courage. It really draws on your reserves to allow that to happen. There were several moments during the hour-long documentary when you just thought wow – imagine doing that! So, for example, Chris is a lovely person with a great sense of humour, he is very down-to-earth (very like Wendy actually) and when he was asked what he would advise other people to do in his situation he said, “Take life by the danglies and run with it”. It was by far the best quote of the programme. And that kind of sums up Chris – that’s brilliant.

But at the same time there were some really difficult moments to watch. For example, in the night, when Chris was railing against the disease that he has. And you saw Jayne his wife having to barricade the door so that Chris didn’t wander out in the night. Another really strong recollection I have of the programme is when Jayne and Chris go off in their camper-van. Their camper-van, a sort of Winebago, is great because the surroundings are familiar for Chris, which is very helpful, and the two of them tour all over the place in it, going to conferences and all sorts of things – they are both great ambassadors. Anyway, Jayne is asked by somebody off camera whether she’s thought about taking respite care for her or Chris and she says she has but she doesn’t want Chris to go into any sort of home or anywhere just for a week or something. I remember thinking that that was probably because Jayne thought Chris wouldn’t receive such good of care as she gave him at home, or something like that, which is what I commonly hear. But she didn’t say that; she said she didn’t want to do it because she was worried that if Chris went into respite care she wouldn’t want him to come back. She says this on national television.

Sue: That’s very honest.

Pippa: Yes, you’ve got to be truthful. And I think I’ve said this before to you Sue, if you’re going to do something like this, you’ve got to be honest otherwise there’s really no point. But I thought that was searingly honest and took a lot of courage on both their parts.

Sue: And then that brings us to the carers, fundamental really in the support of those with dementia. How important are they?

Pippa: The person I’m thinking of has become a friend of mine actually: she’s Zoe Harris. Her husband Geoff had dementia and she looked after him at home – they had two teenage daughters and it was all very difficult. Then, towards the end, Geoff went into a care home, and Zoe realized that the carers in the care home didn’t know Geoff’s preferences, his likes and dislikes. This was nothing to do with the medical side of his care; it was to do with small things which normally you would just tell somebody. But of course when you’re getting to that stage of dementia, you can’t communicate so well. So, for example, Geoff liked to have his tea black, without milk, but the carers kept changing and they didn’t know that and because Geoff couldn’t communicate, over one weekend he became so dehydrated that he literally couldn’t walk across the room. This was just because it wasn’t known that he took his tea black. It was so simple. And they didn’t know that he liked his chair up against a wall for some reason, otherwise he became agitated. Whatever it might be, they didn’t know these little foibles, or peccadilloes, or preferences, or tastes – how you like to live your life – people don’t know about these things. And so, at a very simple level, with her husband in the care home, Zoe put a chart on the wall with little facts about Geoff, and the care home thought that it was really useful. They asked Zoe if they could replicate the charts and then, before you knew it, Zoe decided to set up something called Care Charts UK, which were simple charts. Then that became an online version and the idea has grown into an organisation called MyCareMatters which involves creating an online profile of the person with dementia. I know that the latest thing Zoe is doing with her MyCareMatters is to enable people to do advanced care planning, moving towards the very end of life. Of course that is also extremely important for people and it really helps everyone, including the family, those who are left behind. It’s very good to plan the way you want to live your final time.

So, you can see that there are all sorts of people who have been affected by dementia – often through a family member – who then decide that they want to make things better.

Sue: And that’s fantastic, when people share best practice which then brings those benefits to the wider audience. And of course, there’s enormous benefit and support from professionals, and you’ve found out much more about this and done some work with some of these professionals who are absolutely central to the care of some of these people.

Pippa: Yes, absolutely. I haven’t worked with them but I’ve written about them. Often, when I ask people if they have heard of these specialist dementia nurses called Admiral Nurses they look at me and I realise that they haven’t and they don’t know that they’re out there and they can provide so much help – it’s unbelievable.

I wrote a piece about Admiral Nurses a while ago and all the families I interviewed – a good 10 or so families I interviewed in depth – told me that these nurses were Godsends, miracle-workers, lifesavers – but the sad fact was that for a long time there weren’t very many specialist dementia nurses (Admiral Nurses) in this country. To put that in context there are four-and-a-half thousand Macmillan nurses in this country, who have sort of the equivalent role in cancer care, and for a long time there were only about one hundred Admiral Nurses. That was for various reasons. 

The important thing about Admiral Nurses is that they focus a lot on the family of the person with dementia, not just on the individual with dementia, and they bring with them a variety of skills. They are really everything from navigators through the journey to really highly qualified nurses – it’s very important that they are nurses, they nearly always have some sort of psychiatric background and a geriatric background. And they are also counselors and advisors. They have so many different roles within what they do. This makes them quite expensive and I think this is partly why their numbers didn’t grow. But a few years ago, some really good evaluation was carried out on the role of Admiral Nurses and it was found that if a family has one of these nurses it reduces the number of acute hospital admissions, so in doing so they save the state money.

Sue: So the health economics kick in.

Pippa: They kick in and then of course, hey-ho, surprise surprise, suddenly their numbers are going up almost exponentially. Having stuck at around one hundred for about 26 years, within the last two or three years they’ve more than doubled – because now their value, not just in human terms, which this was always realised by those who use them, but in economic and financial terms, to the country, is being realised. One of the evaluations took place in Sutton and it was discovered that over the course of one year, one Admiral Nurse saved £300,000. As one council leader (I think it was Sutton Council) said, now that this is known, it is a no-brainer – it is helping at a human level and it saves us money: what not to like?

Sue: To hear about the value that those Admiral Nurses bring is fantastic, and to hear about all the people who inspire you too. But you must have other topics that you’d like to talk about in future podcasts?

Pippa: I have, absolutely, and I’d like to take this opportunity to say to everyone that I’ve done a few podcasts now, they’re out there, and I hope that you’ve enjoyed watching them.  Now I’d love to know what you’d like me to talk about going forward. So do put comments on social media or on my own blog and let me know what you’d like me to talk about and who you’d like me to talk to.

Sue: I look forward to those Pippa. Thank you so much.

Pippa: Thank you Sue.