Transcript: ISBA 2016: Adventures with dementia - Neil Mapes

Dementia Adventure is a registered charity that is dedicated to supporting people to live well with dementia and have a sense of adventure in their lives.

Podcast Episode: ISBA 2016: Adventures with dementia - Neil Mapes

Category: Mental health 

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

DM - Donald Macleod
NP - Neil Mapes

DM Well it’s now my pleasure to introduce Neil Mapes who’s the Chief Executive of Dementia Adventure. Now Neil is the founder and co-director of Dementia Adventure, which is an awarding winning community interest company and charity, which specialises in supporting people with dementia and their families, to have adventure experiences. Neil will share his own thoughts about how we traditionally respond to those diagnosed with dementia and the barriers we need to overcome if we are to help those with dementia and their family enjoy their lives to the full. So would you welcome Neil Mapes to the stage. Thank you.

NM Hi everyone. Thank you Donald for the introduction and for Don and Ben and all the team at Shared Care Scotland for inviting me to speak. Feeling quite at home, my dad’s name’s Donald. That’s the 3rd Don of the day. But thank you also for everybody for coming. I hope to be an inspiration. I hope to be practically useful and inform you about how people with dementia are an untapped potential. We’re talking about unlocking potential today, aren’t we? And unlocking the potential of people with dementia I guess is the theme of my presentation. I’m going to just introduce you to how I’m going to use the 20 minutes. So I’m going to start by giving you an introduction of some of the policy and legislation which is quite country specific. But I think it’s quite important that in your own country you understand and are clear about the legislation and policy that does empower you to support people with dementia to take risks. I’m going to be talking about positive risk taking. I’m also going to be showing you positive risk taking, so you’ll be pleased to know the presentation moves quickly on from a lot of word based slides to a lot of photography.

So I think it’s important that we see and hear from people living with dementia about why it’s important to get outdoors and why it’s important to go and have adventures. And I’ve also interspersed into the slides our 10 top tips. So if you’ve had a reservation about including people with dementia in your short breaks or if you’ve got a wish to include people with dementia in your short breaks then hopefully I’ll be of some help to you today. This is our mission. It’s a relatively simple one. It’s our collective mission here in this room. Very simply we just need to enable people who are living with dementia to get outdoors. Often they’re stuck inside too much of the time at a detriment to their own health and wellbeing, but to connect with themselves, to connect with their communities and have this sense of adventure in their lives. So that’s why Dementia Adventure exists. Why I’m here is that I’ve had 3 grandparents live and die with dementia and I guess in the past you might have described me as a young carer. So we’re known for our holidays, if anybody knows us at all. Let’s just have a quick show of hands as to who’s come across Dementia Adventure and our work. So we’ve got lots of new friends to meet on this conference.

We do holidays - I’ll explain a little bit about them and show you some photography associated with them. They’re small group holidays were the person with dementia comes with someone that they know well. And we have a staff member and a group of volunteers that totals a group of 12 people. We go all over the UK and we’re providing 20 holidays this year for families with dementia. Actually just coming back to the last point. Jamie’s presentation was wonderful. Hopefully some of what I say will be equally wonderful, but it will certainly chime with a lot of what Jamie said. I really like this idea of asking families ‘what is your dream?’ Photograph in the bottom left here is a lady Nancy McAdam and you’re going to hear from James McKillup after myself. A lady with dementia. Her dream was to white water rafting and she said you guys are that Dementia Adventure, aren’t you? Can’t you make white water rafting happen? And put me on the spot somewhat. But we did enable white water rafting to happen for Nancy and her good friend Agnes - very well-known figures here in Scotland in the campaigning for change for people living with dementia. I’ll mainly be talking about the holidays. We also do walking programmes and train people to set up dementia friendly walks in local parks. Do a whole raft of training - got a new programme called Dementia Adventure in a Box, trying to package up more materials for people to be more helpful.

You want to more about research - we publish research with Natural England recently called Is it Nice Outside, asking people with dementia and their family carers about their experiences outdoors. That’s on the website as well. So we do research project every year. But we’re mainly talking about positive risk taking and I’ll quickly take you through some legislation and policy context. So the Nuffield Council in 2009 gave us this really interesting insight into this concept of risk benefit assessment. There’s no risk free option. And they were calling for risk assessments to be banned at the time and everybody rejoiced and risk benefit assessments is a more balanced approach. And that sort of policy document was important and is an important reference point for building confidence in doing this work. But the Department of Health in England had this risk paper called Nothing Ventured, Nothing Gained and actually they largely said that we’ve got an overly cautious approach to risk Skills for Care said that actually choice and control essentially means taking risks. And the Mental Health Foundation and the Joseph Roundtree Foundation did a report on dementia friendly communities and that there is this untapped potential of people living with dementia and that there is this sense that people are wrapped in cotton wool, as Jamie quite accurately describes.

There’s a whole raft of different legislation that empowers us to do the right thing. The Human Rights Act is a piece of legislation clearly. The Carers Act - the minister spoke about before, maybe particular legislation in your country that you need to look into in a bit more detail that empowers you to do the right thing, and to do the things that we’d all love to do more off. So how do we do this stuff? So if the policy and legislation is there to ground us in doing positive risk taking, how do we go about doing it? Here’s our 10 top tips to find out what people want. It’s very simple really, isn’t it? It starts with people at the centre of decision making and the centre of choice. I love this idea of a wishes tree - very similar to this idea of pursuing dreams. Separate to care services. What do you wish for? What would you really love to have in your life that you don’t currently have in your life. We asked this question in the context of the outdoors. Sometimes people say ‘oh yeah I want to go to the coast and I want to have fish and chips on the coast.’ Other people say ‘well I want to go Kentucky Fried Chicken and have that spicy chicken.’ It’s not always this beautiful outdoors moment. But do start by asking people - sometimes we do it with a wishes tree. Agnes and Nancy here in the garden may simply be gardening, getting into a local park

There’s a really lovely book published by Jessica Kingsley, publishes about dementia in the outdoors, and the subtitle is A Breath of Fresh Air. It may simply be getting out of the building for 5 minutes for a breath of fresh air. And here’s the lady on the coast. Might be farms. The outdoor environment provides us with such variety and such opportunity. This couple - the gentlemen here were really fascinated by steam trains. So if steam trains is your thing then North Wales is the place to go. I’m sure there’s other locations with a wide selection of steam trains. But having an opportunity to go to these sorts of things and by taking these programmes is ultimately fundamentally based within choice and control. So we design our holidays around what people want and what they tell us they’d like more of. And that’s how we’ve grown over the last 6 or 7 years. Choice and control can be big things, like white water rafting. But it can be little things as well - down the path that you choose to take through the park. And we support carers and care organisations to think really carefully about whether the person with dementia does actually have a choice. And even the route that they take through parks for example. So it can be down to really small choices too. Getting an opportunity to feed the horse.

So this is a group of people with dementia on one of our holidays. You get bonus points if you recognise where this is. Harder for the international guests. Take a guess. Very good guess - Loch Lomond. It looks very much like Loch Lomond, doesn’t it? It’s the Lake District. We were on a walking holiday for people living with dementia. Younger people in this particular photograph - we cater for all ages and all types of dementia and all stages, hopefully, where it’s suitable. And you see Lucy the other founder of Dementia Adventure in the centre there. But hopefully what you’ll also see is smiles. Ultimately it’s about bringing joy back into people’s lives. And we go on fairly significant walks where that’s what people want to do. I think this is a great shot - if you want to see the video of this, there’s a whole series of videos and our You Tube Channel. And the folks in New Zealand got in contact with us recently and said ‘hey, you guys are doing white water rafting with folks with dementia. That’s our thing! We’re the white water rafting experts.’ So yeah, it’s a relatively risky activity, but actually it can be made relatively safe at the same time. And having this risk benefit analysis. And this came about through work with Pauline Knox and Moray Council, up near Forres, and this is on the River Findhorn. But actually what you don’t know is that everybody in the boat was trained by us. It wasn’t just that we’d booked a boat trip and gone straight on it. A lot of care and attention had gone into that trip, as you can imagine. They’re laughing at Jessie falling in the water, who’s our adventure leader. And this is Jessie in the yellow hat looking mightily relieved, cos he is responsible for the safety of the trip. But Agnes and Nancy fulfilling a dream. We also go to Kielder Water in Northumberland and this is a lady after her zip wire experience. So we do all sorts of things. And yeah, joy - joy and excitement. Alan sailing in Cornwall. And the man that you’ll hear from in a minute with his driving experience, James McKillup. We supported him to go driving as part of the work with Moray Council up in Scotland.

Football - all sorts of ideas. Football-Golf - I don’t know if anybody’s come across Football-Golf so far, that’s using a football instead of a golf ball. It might be gardening, birds of prey, there’s all sorts of things. And what we find with family carers is that the invitation to meet their loved one outdoors and to go and be with them outdoors is fundamentally really different from going into a care setting and being invited to being through the threshold of a care facility of some description, But actually fear clouds their judgement and actually we’re not often taking a really balanced approach to risk. We look at risk assessments in a really negative way often. They’re disempowering - we lose confidence to go and do an activity because of this thing called a risk assessment. But if we’re as thorough about the benefits as we are about the risks then we develop confidence. This is Derrick, climbing the rigging of a sailing boat on a Thames barge on a 5 day sailing holiday with people living with dementia actively sail the boat. And he’s about 70 foot up on the rigging with the boat swaying and leaning to. Derrick’s problem actually is language. His memory’s not too bad, but his language lets him down more often that they’d like. But he’s physically very able as you can see. And here he is with his friend who came with him on the holiday. And his wife hates sailing - she gets seasick, so she stayed at home. So I’d like to just pose this image for you and just ask you to consider this when you go about supporting people with dementia - what are the risks? How can we control them, let’s think carefully about risk of course, but let’s also think about how we can me maximise benefit. Really nice image here. The person with dementia, John, on the right is actually instructing a family carer about how to sail the boat. And it’s a really nice way of turning the tables.

We worked with an organisation recently called Wet Wheels and they’re doing power boating for people with disabilities. And they’ve adapted power boats so that wheelchairs can access the boat and be clamped down. We had a lady with dementia that was 26 and she approached us with her sister and her mum, saying that they couldn’t go on holiday together and they wanted to go on holiday with our support. Extremely young - one of the youngest person we’ve ever supported. And this is them about to get on the power boating trip. This is the lady in question. We’ve also done those sorts of trips up in Scotland. So improving the environment is important.

Let’s look at environments that we spend time in outdoors. This is an outdoor classroom that’s initially established and set up for children, but what you’ll see here is a storytelling chair in a horseshoe for people to sit on, but actually he only people sitting on it are the staff on the particular trip. Seating is a continual issue in green space environments - not enough space on this chair - simple things really. But looking at … so we support organisations like Natural England, Wildlife Trusts, a series of green space organisations that run and manage green spaces. How can you improve the environments so that it improves access for everybody - improves access for people with dementia certainly. But it’s important that when we approach risk and think about positive risk taking and the likes of people with dementia that it’s not a one size fits all approach. It has to personal and flexible, just because I’ve done white water rafting last week, doesn’t mean to say I’m gonna want to do it again this week. Just because I’ve done white water rafting doesn’t necessarily mean I’m safe to cross the road. So it’s all sorts of time and precision and person specific nature to risk.

This is on the Isle of Wight which is one of those quite risky chair rides, you know what I mean, where you go over … this is over a gorge in the Isle of Wight. But again the faces for me just tell us and reaffirm to us why we do this stuff. It’s about happiness and about shared time together. Lots and lots of families have told us that they don’t want a holiday separately. That isn’t a holiday, that’s just time where I sit worrying about the person that I love. We want to get away together - we want a family based experience. We do all sorts of things. Anybody that’s a kayaker in the room will know that you all have to face the same way. So we’re not experts in everything. What you also don’t know is that we’re not far from the shore. But the reason for showing this photograph is adaptation. The gentleman with dementia in the middle couldn’t get in backwards. The act of doing this was really difficult, you know, to just go in forwards and we’ll make do. But actually I think it’s important that we build confidence individually and in groups and socially. And I think there’s a big challenge socially and it’s all building confidence that people with dementia have more capabilities than we might think they do. But certainly individually it’s important when we support people with dementia to build their confidence slowly. And actually doing the successful things enables us to build that confidence. And John here has been on 9 different holidays with us. And he helped us design a canal boating holiday. And at the start of his journey with us he wouldn’t have done that. And I think the repetitive notion of successfully completing trips enables him to take more risk every time.

This is a group up in Moray, where we do some training in a place called Newbold House. We were there last week. That’s an organisation - to come back, going to struggle to say this work - respitality concept, where there’s a local facility, a local community hub, that is a wellbeing retreat, essentially, for want of another phrase, that’s starting to open its doors and starting to put on more programmes for the community, but particularly people with dementia at the same time. So are there places in your communities that exist where people with dementia don’t yet have regular access that they would benefit from going to? There might be gardening there, there might do things in all kinds of weathers.

This lady’s got quite a mischievous look on her face, hasn’t she? I would be worried if I was the photographer. But you can do things in all weather, and sure there is some weather in Scotland in particular that’s not always as sunny and warm as it is now. And I think it’s important that we think about activity across the seasons as well as in the better weather weeks and months. But ultimately confidence and trust are really hard to earn at times, particularly where we enter people’s lives with dementia and we haven’t known them prior to their dementia. It can be hard work and a long time in developing that trust and we can break it really easily and we need to be really careful not to do that.

This photograph’s really nice for me - Jessie and a gentleman with dementia that came out of a care home to go to a farm. And the reason why they’re laughing is because they’re having banter and argument over football. The men just bantering about Arsenal and Chelsea and Tottenham and you know these sorts of things. I think it is important for men to have that male banter at times and to think about how we build trust together and confidence in each other’s company. And Jessie here with one of the ladies up in the lakes. But it is important that we’re thoroughly prepared. Where we find we’ve supported or worked with organisations where things have gone wrong in a mild or a moderate way often it’s because people haven’t picked up on something in their preparations. They haven’t thoroughly prepared. And that goes for this risk … concept of risk benefit assessment before you go, but it’s also a dynamic process. It’s something that you do in the moment. So you might be familiar with these green gyms. There’s gyms in parks in different places now. We weren’t expecting people with dementia to leap onto them, but that’s what they did. They saw them and they were ‘oh great, we’ll have a crack at that.’ And it might not be in your paperwork in terms of your risk benefit assessment, but at the moment you need to decide, you know, what are the risks of them engaging with it and what are the benefits of them doing so. Actually they’re quite dangerous these machines, they can take the skin off your shins, can’t they, on some machines. So you do need to be careful of them - risk benefit. And these sort of zip wires and other facilities in parks that you may not have prepared for that people might want to engage with, you never know. We have a principal of safety in numbers, so that people with dementia are always outnumbered by the people without dementia. That works on a number of levels. It helps the people with dementia feel safe, but it also feels less like they’re getting taken out somewhere and more like a family based experience. And that’s like when we do our holidays we’ve got four people with dementia and eight people that don’t have dementia. Four being family carers and four being the Dementia Adventure team. And that way friends are welcome, children are welcome. It feels more like an extended family experience than it does a service provision.

Anybody guess what these ladies are looking - we’re at the coast? These two ladies have been supported to come out of a care home in January and its freezing cold, as you can tell, they’re really wrapped up warm. What might they be looking at? Children playing. They’re just … the thought of having access to children when you’re in a care facility and seeing children playing on the beach. Having an ice-cream if you can, but January wasn’t particularly the best month for ice-creams. Normal inclusion - I think the … coming back to Jamie’s talk again, I think it’s making the extraordinary ordinary and that these sorts of things, hopefully over time I’ll be giving less of these presentations cos it’ll just feel like normality for more and more people, more ordinary lives. But it is important if we’re going to be taking risks together, if you’re going support me to do something risky that potentially I haven’t done before, that there is a circle of support and that’s it’s just not one person that’s taking all the responsibility. And if that person is a family carer then we need to do everything we can to support that family carer to have circle of people they can go to. It might be a neighbour, it might be the pub landlord, it might be a formal organisation, but we need a circle around that family so that we can continue to take positive risks and enable people to live lives to the full. So we got to … hopefully you’ve seen the pattern now, we’re trying to do metaphorical messages along with the photographs.

Here’s our circle of support. And here’s another one - and James is in this one as well, who you’ll be hearing from next. Under … sort of supporting each other to look at how we can provide outdoor experiences across a particular part of Scotland near Inverness. Often people with Dementia, particularly as dementia goes into more advanced stages, the need to get out of doors is greater. Our challenge and how we support them to do that is greater. And we need to be creative and support of each other and find experiences that are meaningful for people. If you’re wondering what this lady’s eating it’s a raspberry. But just simply getting out and picking fruit, it doesn’t need to be an enormous adventure. We’ve got this concept of micro adventures that we’ve come across Alistair Humphries, he’s a National Geographic adventure, he’s got this brilliant concept of micro adventures. It only needs to be for five minutes really. And in terms of our mood lift at least. So a circle of support. This is one of the few photographs where you’ll see me dancing. This is Dr Richard Cohen, he does dance workshops with people with dementia, getting people to be mobile and take activity and so we do things indoors as well as outside. But I think it’s important finally to allow room for no activity. Sometimes we’re so focussed on activity and doing stuff that simply getting outdoors is enough. When we ask people with dementia and their family carers about getting outdoors that one came up a lot. We just want to get outside, don’t really want to do a huge amount all the time, we don’t want to be part of a formal structured walking group all the time. We simply just want to listen to the birds and get into the fresh air.

I’d short hair there, it looks grey there, don’t it look grey? Not grey now is it? But simply just chilling out and relaxing and being out somewhere together doesn’t always have to be a jam packed activity programme. Finally if you are embarking on supporting people with dementia to take risks, either individually or in groups, or you’re thinking about people with dementia and taking part in a short break provision that you’re part of, it is important that you regularly review the work - regularly review with the people living with dementia, their family carers, the team that supporting the delivery. It is a huge emotional rollercoaster every time we do an adventure. And it’s really important that you review your practise, however you do that, whether it’s a reflective learning log, or staff systems. We find it really important, not only in the development of future breaks, but in the quality assurance in making sure that you review what you’re doing. Particularly where things have gone wrong.

Looking after ourselves, we’ve got the gentleman with dementia looking after a little chick here. So ultimately our message is one of prevention - prevention through delay and no doubt James will talk about this to some degree when it comes to his turn. If we can keep people active mentally, physically, socially, that have dementia, then there’s a great opportunity to delay their symptoms getting worse. I’m a firm believer in that and I’ve seen that in all sorts of different situations. I’ve got a slide here from the Alzheimer’s Society that essentially tells us what many of us know in that a healthy lifestyle is the fundamental starting place for helping avoid, or reducing your risk of dementia. But certainly if you’ve got dementia living as well as you can. So doing all those things that we know to be good for us. But what’s good for the heart is good for the head. I’m not sure everybody’s got that message yet in the context of dementia. And that’s it’s never too little and it’s never too late.

There’s various different people on the team. We’re a small team - there’s only 15 people in the organisation. We’re a social enterprise and a charity. There’s a whole rafts of people back at the office in Essex where we’re based, but we work nationally and increasingly internationally. So if we can support you in any way we’ll be really pleased to do so. These are some of the people. So help us spread the word, do raise awareness of us as an organisation back in your countries. Do look at the research, do have a look at the training. We have holiday brochures, for people that are interested in the holidays. Got a limited supply, but everything’s on the website. We have a training brochure as well. We do various different programmes, but if you’d like to know more about Dementia Adventure in a Box, that’s the complete package of training. And similarly we have all kinds of staff members that love what we do. They see our presentations and say crikey I’d love to come on one of your holidays as a volunteer. We have volunteers from the health service and the Alzheimer’s Society and all kinds of different organisations. So if you’d like to help us we’re looking to recruit about 300 volunteers over the next 2 years. To try and expand our reach with volunteering. And unsurprisingly you’ll see the word fund-raising. We’re always looking for new funding opportunities. So please do visit the website, there’s Facebook and Twitter and there’s a mailing list you can join as well if you wish. We hope that we’ve been useful. I hope that we’ve showed you some imagery and some messages that’s both got you thinking differently about what people with dementia might want to do and about their inclusion in the short breaks and where you live and the services that you organise. Do get in touch if we can help you with anything at all and do share on social media if that’s how you’re connecting. Hopefully it’s been interesting and I’ll conclude there and just say thank you very much for your attention and I wish you well in everything that you’re doing for folks with dementia.

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