Magic moments in dementia care services

A storytelling approach to learning and development

Learn Inspire Empower Enable Foreword Older Persons Commissioner As Chair of the 3 Nations Dementia Working Group, I have played a role in helping deliver a series of webinars some around the impact of COVID 19 on All professionals working across health people affected by Dementia. As well as being united against dementia we and care services should understand the now find ourselves united against COVID 19 as well, which has had a major challenges people living with dementia can effect on people living with dementia and their carers. We must learn from face, and the positive difference they can the experiences, with health and care workers and third sector organisations make by providing the right support and continuing to play an especially important role in supporting and protecting the creating Magic Moments. rights of people living with dementia during the crisis in the UK. Today learning from these stories to improve dementia care is more important than ever. We’ve seen the huge difference that moments of kindness have made to people’s It has been my pleasure to witness people with a diagnosis and their supporters lives throughout the pandemic, and this is overcome doubt, lack of experience and confidence to tell their stories that have something we need to hold onto and build changed hearts and minds with content that cannot be questioned, or motives upon as we move forward together. doubted as the testimony in this document illustrates . I would like to thank all of the people No one who reads these stories will not be affected by the purity and bravery living with dementia who overcame doubt, of the contributors all affected by Dementia. The people who delivered these inexperience and a lack of confidence to make moments were more concerned with their purpose than their own comfort. their voices heard and share their experiences so generously to create this valuable resource. We witness in this document extraordinary examples of courage, people speaking for the first time wracked by anxiety and self-doubt but doing it As you will see, their stories are both powerful anyway, refusing to be defined by their diagnosis, demanding a place where and moving, and highlight why kindness, decisions are made and sharing the most difficult aspects of their lives enabling empathy and compassion are so important in a better understanding of the impact of a diagnosis. the delivery of truly person-centred care, the kind of care that we would all hope to receive So, we should salute all whose voices are heard and those who will be heard in should we need it. future, those who battle daily, the changes a diagnosis can have. Let’s celebrate for everybody is beyond brave in their own way our loved ones, friends advocate and allies. Heléna Herklots CBE Not all superheroes wear capes not all warriors carry armour. Older People’s Commissioner for Wales Courage doesn’t always roar. sometimes courage is that small voice at the end of the day that says;

“You know what I will try that again tomorrow, I will be heard “

Nigel Hullah 3 Nations Dementia Working Group

2 Magic Moments in Dementia Care Services - Foreword Welcome Why should we collect and talk about stories?

Human beings are storytelling animals This ‘Magic Moments in Dementia Care Using the DEEP approach, Public Health This engagement has helped shape the who make sense of the world through Services’ booklet has been inspired by the Wales, Improvement Cymru brought development of an all Wales Dementia narrative1. They also learn most Developing Evidence Enriched Practice together people with dementia, family Care Pathway of Standards for the effectively when they talk together and (DEEP) programme, a co-production carers, practitioners, managers and person’s journey. The pathway has been learn together2, rather than passively approach to learning and development researchers, to share and talk about structured around four key quality themes watching PowerPoint presentations or that was developed by the Wales School 'magic moment' and 'tragic moment' highlighted as important to people. These reading strategies. In developing a set of Social Care Research4. The DEEP stories from their experiences of dementia themes include accessible, responsive, of national standards for dementia care approach has demonstrated that learning care services. We achieved this through a journey, partnerships and relationships. services, we therefore wanted to take a through talking together about people’s series of regional events and associated Compassion and kindness were identified co-production approach that values stories, both good (‘magic’) and not so meetings with stakeholders throughout as critical attributes central to the and learns from the real life experiences good (‘tragic’) is powerful in effecting 2018/19. As a result, we discovered what underpinning of the four quality themes. of people, rather than imposing standards positive change. matters most to people both delivering that do not necessarily connect with the and receiving dementia care. reality of everyday lives3.

Welcome - Magic Moments in Dementia Care Services 3 Quality Theme

Accessible Responsive Journey Partnerships and Quality Themes Relationships

Accessible – able to get help, support and advice when needed

Responsive – meeting my needs at the right time, in the right way

Journey – navigating to the right support / service at the right time

Partnerships and Relationships – working together to achieve the best outcomes.

Underpinning the four quality themes is • We have the right to be respected, and KINDNESS – how we care for each other, recognised as partners in care, provided speak to one another, engage with each with education, support, services, and other, work with each other, comfort training which enables us to plan and each other and support each other. make decisions about the future. • Our service and community response The pathway of standards reflects the needs to be equitable – whether you live spirit of the Dementia Action Plan 2018 in a rural or remote area or in a town, – 2022) where the focus is on the person Kindness and it needs to meet diverse needs, with dementia living a full, active life and for instance people with protected promotes independence, coproduction characteristics who may be living with and integration of services to meet each dementia and people who may be able individual’s needs. The standards also to understand only their first language align to the following Dementia Action as their condition progresses. Alliance dementia statements: The stories are supported by learning By sharing the stories and key • We have the right to an early and exercises to enable people to use the messages we hope to illustrate why accurate diagnosis, and to receive stories in this booklet or capture and it is so important that we build on the evidence based, appropriate, learn from new stories. The exercises capacity to continue to share significant compassionate and properly funded explain how to deliver exploratory experiences about services, both care and treatment, from trained people talk activities with the aim of having a ‘magic’ and ‘tragic’ moments. Working who understand us and how dementia conversation about dementia, shaping in partnership, talking, listening and affects us. This must meet our needs, practice and creating change ideas that understanding, will enable us to learn, wherever we live. will result in continuous improvements grow and be inspired to continuously in dementia care. improve, to shape our dementia care services together in a way that matches our community’s needs.

4 Magic Moments in Dementia Care Services - Quality Themes The Stories

experience and she was also asked to Lean on me speak with the same organisation in Wales again. She went there and this time, I The community working together drove her there and stood by the side of to support groups, places and the stage. Again, she held the audience organisations to be dementia friendly in her hands. The story behind this lady is Keeping me and accessible that she had her diagnosis with dementia and she is a member of the women’s “Brian was asked to do a talk for an ‘me’ church group and she brought the subject organisation in Wales and he couldn’t do to the group and they said ‘We would Language Understanding people, where they it. He was asked if he could recommend rather you didn’t speak about that’. The are now and enabling them to feel someone and we recommended an 86 lady said ‘I have been speaking about it in matters comfortable with who they are year old lady who in her former life was a another town’. The group members asked model, very tall and from Ireland. We went Making reasonable adjustments ‘What have you been speaking about?’, “My story was regarding a friend who over to Ireland to one of the conferences so that the person is able to ‘Well, I have speaking about dementia transitioned and then got dementia. Their and she came. We asked her if she would participate in their life and dementia through the community’. partner supported them, but because speak around the communities and they had forgotten where they were, The group asked ‘Would you give us the “When I spoke French to a lady we got her life story written down, who they sometimes regressed to an earlier talk?’ The group that had made her feel who was being nursed in bed and she was and she had an amazing story. time and we were concerned that they very uncomfortable for having a diagnosis, her face lit up and she replied Then we padded it out into the dementia couldn’t be themselves. Sometimes they actually wanting something that she in French. From there her care friendly communities stuff. I went along were okay, sometimes they weren’t. had to offer, she became part of the included a French speaker”. with her and I said ‘It is alright, I will be group again. She raised their stigma and The solution was every day the person’s with you. I will stand alongside you and then was asked to speak at lots of other partner made out two sets of clothes if you can’t do it, it is okay. If you can’t church groups within her area, so while and they wore whichever they were do it, you can just try’. So we stood on we supported her for the first two gigs, comfortable wearing and if it changed the stage and she started to speak and after that, she was on her own and out during the day, it didn’t matter if they very hesitantly, she found her feet, held within the community and changing other wouldn’t change, they supported whoever the audience in the palm of her hands. people’s lives. That to me was massive”. they were. I wrote that out with some I stepped back, stepped back, stepped work that we did, saying – would I feel back and she had such an amazing comfortable if I had done an advanced directive saying I must be treated as a woman and then if I could be that in my future I might be questioning myself, why didn’t someone determine this for me?”

Accessible - Magic Moments in Dementia Care Services 5 The Stories

hugging, massaging of his hands and feet I wanna hold had been an important element of our visits and brought us great comfort and this was now gone. My husband lost more your hand weight and deteriorated further while I And when I touch you, I feel happy was unable to visit. inside, It’s such a feeling that my love, I When the amended guidance was issued can’t hide, I can’t hide for inpatient visiting, the ward team and senior nurse were instrumental in setting I have always visited my husband mostly up safe visits, recognising the positive everyday and I would visit for anything impact this would have for us both. My between 2-4hrs and was able to feel that initial visit after not seeing him for over a I still had a role to play in his care. He month was a real rollercoaster. On the one would always eat well with me, where hand I was so relieved at last to be able to sometimes he wouldn’t with the ward see and hold him again, but the realisation staff and staff also observed that his most of how much he had progressed over that settled part of the day was during my time was a great shock. However, even visits. from the first visit it was clear to see how my physical presence and touch was The sudden introduction of the Covid19 reassuring again for him. no visiting policy had a negative impact on us both, particularly as he had no The ongoing empathy, compassion understanding of why I wasn’t able to visit. and support from the whole team, in Despite trying to maintain daily contact continuing to facilitate the visits during via video-calling, facilitated by the OT this very difficult time, has eased my and the nursing staff, it proved to be very distress and also I believe some of my difficult. The nature of the dementia meant husband’s distress. Please pass on he was often unable to comprehend what my thanks to the whole team for their we were trying to achieve, which was care and support and in continuing to very distressing for me. Sensory factors, recognise what an important role my especially touch, like holding hands, visiting has as part of his ongoing care.

Responsiveness - Magic Moments in Dementia Care Services 6 Quality Theme Responsiveness You can do it! Creative ways Enabling by matching the person’s skills However professionally experienced we think we and abilities to the demands of the task are, people are still more capable than we realise

“I work as part of the dementia team in a thought it was such a wonderful thing. A “My story is a bit, old, but it’s something nursing home and I have been working lot of the staff when she is eating, see that that’s stayed with me for a long time. with a lady that as a child, registered she shouts and she looks really annoyed, A couple of jobs ago I was working as deaf as a result of meningitis and she her facial expressions are normally, that a liaison nurse in a care home. I was had had a stroke or CVA which left she looks annoyed. But throughout when visiting somebody sitting beside this lady her immobile, bed-bound; she’s got I was doing this technique she didn’t, and I was aware of another lady the other no communication and she has been she was just quiet, she was content, she side of her and her daughter sitting with diagnosed with dementia. She gets was in control, she was happy. So for me her and the lady that she was visiting was “I’ve still got assisted when she’s fed and with my it was a magic moment and a lot of the very quiet, very frail and her daughter got observation she gets very agitated when staff noticed: look how quiet and look how out her iPad and started tapping away at something she’s being fed and she’s got no control content she looks and she’s engaging with it. I thought she’s obviously a bit bored, over the task. I recently went to dementia you with her eyes, her eyes lit up, it was she’s just answering some emails, doing training and occupational therapists were wonderful. some social media whilst her mum isn’t to give” demonstrating the hand-to-hand feeding speaking, but no and what I like about The importance of people being technique, so I couldn’t wait to go into On the downside of things, a carer walked this story and why it stayed with me, it able to participate in purposeful work the next day just to see if I could past me and said, “That’s a one-trick proved me wrong and it made me think roles work with this lady to make this process pony”. Also, another carer walked past me differently. Her daughter got up the piano a little bit more positive for her. I wanted and went, “We haven’t got time for that” - app on her iPad and started playing and “Attending the Men’s Shed enabled to see how much function she had in the I was on cloud nine, then I got hit with the then she handed the pad to her mother me to make decorations for hand and the elbow to see if I could get a negativity. So the next day I went in and I and her mother started playing as well. Christmas, also taking over the coffee range of movement; I said I could do this did exactly the same thing again and the That has stayed me with me because it’s morning in chapel on a monthly basis with her, unfortunately it was very difficult patient responded to me like she did the proved me wrong and I just hope that and being able to collect money for for me to communicate with her because day before and it didn’t take that much it’s always taught me that you shouldn’t the Alzheimer’s has been a magic I don’t sign, but she does manage to lip- longer, so all it means is that this lady has judge people however professionally moment for me”. read on small sentences. got control of what she’s doing. It was experienced we think we are, people are just lovely for her to feel that she’s doing still more capable than we realise and I started doing the hand-to-mouth and something and I had a lovely smile out of people can always prove you wrong and she engaged with me straight away; it was her at the end of the activity, she wasn’t that’s what I like”. mind-blowing, I thought it was amazing flustered and if you can take that away its and she was in control, she was holding good, so my end result is that I’m going to me back when she wasn’t ready for the try and train the staff with all their patients next mouthful, it was a magic moment - so that’s my magic moment”. and I cried when I got home because I

7 Magic Moments in Dementia Care Services Simply delicious! Empowering independence through does. When she saw the wine glass she meaningful everyday activities said, “Oh, thank you.” Picked the wine glass “Working alongside a young lady who’d up, with the ‘pinky’ up as well and drank. been diagnosed with Alzheimer’s for a That was a good moment”. six-week period. She’d previously enjoyed cooking for her family but had stopped doing so as was unable to follow complex The sun recipes. We worked jointly to find less- “Helping my Pride before complex recipes for her favourite things doesn’t to cook. Working alongside staff daily, spirit sing” prejudice her abilities and confidence improved, Identify people’s strengths and resulting in her undertaking adapted always shine The importance of finding the key to interests to enable them to participate tasks that she was able to do prior to unlock the magic moment her diagnosis. On leaving our service on TV in activities that are meaningful she independently cooked meals for her “Thursday is my magic moment “A 96 year old lady came in for an family and was supported by occupational Ensuring we have established multi- because people will come in, being assessment with her son and daughter in therapists in the community team”. disciplinary teams to provide a holistic ‘down in the dumps’ and after law. Through the assessment, she didn’t assessment with access to range of twenty minutes singing and dancing, mention art at all, but it was only after interventions everybody is having a magic moment. when I gave her feedback about how she A gentleman, who loved his wife to bits, had performed and I had said how well A toast to life “I was visiting a lady in a nursing home who couldn’t walk, said after the session she had done on the visual spatial test and who was referred for a communication to me, that he actually got his wife back”. the box was the best box I had ever seen. I history assessment because she was hearing said “Wow your visual spatial is excellent, voices and hallucinating and had you did really well on that” and her son Understanding the person to challenging behaviour. On visiting the lady, then said “Well, actually she used to do understand what might help I noticed she was sat by a large television a lot of art, although hasn’t done for a that was constantly on. Switching off the couple of years now, but that is something “I work with people with advanced stages she used to really enjoy.” I asked “Well of dementia on the mental health wards. television the voices stopped and the lady became calmer. After speaking to the why, what happened, why did it stop?” There was a lady on the ward. She was a and he couldn’t really remember why it nurses and psychiatrists her medications diplomat’s wife, so she’s been everywhere, had stopped or what had happened for it were reviewed. Anti-psychotic medication all round the world and she’s come from a to stop, so they said maybe we will get a was stopped and the lady became a lot very highly sophisticated background. We sketch pad and some pencils and go back were having trouble trying to get her to calmer and communication improved”. to that which was really good. I’m hoping drink fluids. So, I thought - I’ll try her with to see some art work when I next see her” fluids in a wine glass and see how she

Responsiveness - Magic Moments in Dementia Care Services 8 Quality Theme Journey Understand what really matters

Providing the right advice and support at the right time

“We think this story may be tragic and resistive to any input really from any care. about whether or not he was doing the perhaps magic. We were called out He was offered a carer assessment – he right thing for his wife about someone suddenly to see a chap who was having didn’t want anyone in there, he didn’t coming in and assessing. When it was problems with his wife, who had been want anyone involved and just through explained that people were talking about diagnosed with dementia and she had talking with him, initially I thought why how to keep his wife at home and that is been very confused a couple of days was this guy so resistant. In some respect, what everyone else wanted. They wanted previously. She didn’t recognised her own he didn’t want any GPs to take over the her to stay in her home, in a place that A helpful home and some other issues, so I went house because of other issues and he was she recognised and be cared for as well out to see them and he was very resistive getting quite tearful, but I was looking as possible at home, he started to accept starting place to any care that had been offered. She through what he was saying to me and help to keep his wife at home, so that is had a UTI, which at that time had not recognising what he was saying… he was the magic”. The Importance of a timely dementia been diagnosed, but we had a feeling afraid of losing his soulmate and that was diagnosis to ensure that life is lived well that that was the issue. He was very, very his main issue. People were talking it over “I was speaking with a relative who rang to advise that their father had passed away. They were calling to thank me and the team for the support and for providing a diagnosis. By providing the diagnosis, the family were able to take control of the illness and were determined to make memories, especially around what was relevant to their father by revisiting places of interest, storytelling, something they probably would not have done. A powerful conversation where they highlighted the positives as opposed to the negative impact of a diagnosis”.

9 Magic Moments in Dementia Care Services - Journey “Don’t judge me, just love me” Supporting people to get the right support and care to enable them on their journey

“I was going to see patients with an acute to go out and he was a speaker, public out she likes me to take her a doughnut, time ago. They were what she used to clinical need within the community and I speaker, so I learnt a bit more and he do the crossword with her. She liked the wear but things started to fit her so she met a gentleman there that was needing told me that sometimes his wife got quite Royals so it was at the time of the Royal looked smart. She became the lady that the clinical care side of things and his distressed, would get quite jumbled. It just weddings, I took her the supplements, she deserved to be and her husband was wife was with him. When I first met his happened to be over a holiday period, so nothing much just out of the Sunday able then to go out and carry on his things wife, she used to come and sit in the living I went back and forth to this house lots of paper, she was so pleased. I eventually because we organised a sitter, so he had room and sit very quietly. I’d get on with times in one particular week. got an assessment for a memory clinic, or his social stuff addressed. So, my magic my job and I used to visit this gentleman primary mental health services and was moment really is I think that, just by taking twice a day and I went back to the office So I went the next day and his wife was able to help Mr …..as well in that. notice when I went into that house; not and told them I had done my job, handed having a little bit of panic, she got quite just of the service user that was on our over and they said, “You’re going back anxious, she needed the toilet, couldn’t From recognising and referring on, the caseload, we’re looking around and taking there this afternoon.” They said, “I bet remember where it was. I said, “Don’t lady got the services that she needed and notice, making sure that his wife had what his wife is still in that blue dress though worry, I’m here, I’m a nurse, I can take her”. was able to carry on at home. She wasn’t she needed, so together they had six good isn’t she?” So they didn’t laugh at her, but Took her to the toilet and the poor lady able to go out anymore, it got a little months before things got so bad that she they didn’t really think about what they had four pairs of pants, four dirty pads bit too advanced for that, not with him had a fall and went into hospital. She’s so were saying or what they were seeing I and each pair of pants just layered on top anyway, but she did go for an ice-cream advanced now bless her, that she needs a don’t think. So when I went back, indeed of the other, very evident then her clothes with her daughter once - had her hair cut, placement rather than home. So my magic yes, the lady was still in a blue dress, still were much too large for her. I had a good new clothes, I spoke to the daughter. She moment is really that I gave them six sat there and I took the time to sit and relationship with the husband, so I asked, had got clothes that fitted instead of the months of good quality time together and look and observe and obviously make “Do you need help? Can I help you? Can big clothes on her, which was from a long that’s my story”. conversation with his wife while I was I refer your wife into some services to see looking after the husband. I came to if we can see what’s going on?” So that realise she was a school teacher, she was did happen. After I found out she was a a music teacher, she was a very social teacher, I’d go and see to the husband person in her time, but is obviously not and do crosswords at the same time and able to carry out these things any longer she would sound out, a very intelligent and I thought this isn’t right, this lady’s lady. As we said, it’s just because there’s not making her choices as I believed that a dementia, it’s not they’re not intelligent, she would perhaps like to. They were a their thinking is a little bit different, so we very educated family. The gentleman used used to do crosswords together. I found

Journey Journey - Magic Moments in Dementia Care Services 10 Quality Theme Partnership & Relationships Living a life Building ‘The fundamental things Recognising and seeing a patient as a person confidence, apply, as time goes by’

“Whilst working on a dementia ward and Actions, behaviours and relationships we have with people and how we in a day hospital, I spent time compiling nurturing deliver care will affect how we make people feel a life history for each patient, with the co-operation of patients’ families and happiness “When I went to visit a mum who is cared while he was in a residential care home, carers. Photographs and a history of their Enabling networks, connections and for by her daughter, I can remember going which was lovely in many ways in that I childhood, schooling, work and family relationships into the lounge area and mum was sitting could visit him whenever I wanted and life as well as hobbies, likes and dislikes on a lovely comfy chair in the corner, all could walk the dogs. I had been down helped me and other staff to work with the “We set up a group called Cognitive the photos of the family were beside her to South Wales with both of my dogs patients using reminiscence, talking about Stimulation Therapy for people we visited on the mantelpiece and she had the sun and one of them had tragically died and their jobs and hobbies etc. Staff stated who had a diagnosis of dementia. It coming in on her face. She was wrapped I came back with just Tumbles. Dad at this changed their attitude to patients, ran over six to seven weeks and to see in some lovely blankets and she just this stage wasn’t verbal, he was at quite reminding them that they had lives prior people who were nervous and quiet in the looked so peaceful, calm and relaxed. We a late stage of dementia and I went to to dementia. Also patients were engaged beginning and by the end of the group were talking and her daughter went up see him, didn’t think he would notice that in therapeutic activities often resulting in much more confident, smiling, laughing to her, held her face and said “can you I didn’t have Gruff with me, but as usual less use of medication for agitation and was great. My magic moment is that the remember who I am, do you know who I Tumbles came down and laid his head therapy could be tailored to their previous people continued to meet up after the am” and the mum said “I don’t know who on his feet and I chatted and he smiled interest and skills, the pleasure was group had finished”. you are, but I know that you love me” which is what normally happens, but evident. Life history could be taken on and I just remember being really touched then after a while he looked down and hospital visits making staff aware of their at that time”. Tumbles was a bit restless, twitching in likes and dislikes. This was prior to “this his sleep. Dad looked down at him and is me”. Participants enjoyed building up said “Where is the other one?” I replied the information talking about past events. “Sadly dad, Gruff has died, there was an Staff stated it changed their outlook on Good grief accident” and he looked sad and we were the person, reminding them that they both sad together. The next thing he said were a person not a patient”. The Importance of understanding “I think he’s missing his brother” and it people’s relationships past and present was very much about my Dad missing his and the feelings they have associated brother. I don’t think he ever spoke to me with the relationship again after that, but there was just this “To understand this, you will need to one moment where he was just absolutely know that my father is one of five siblings, with me in the sadness of the dog and the he is the youngest and he is very close to sadness of him and his brother and it was his brother. His brother had died 15 years just beautiful”. before my dad had dementia and for a

11 Magic Moments in Dementia Care Services - Partnership & Relationships Dementia is everyone’s business

Understand and really “get me” to support and enable me through my journey

“It’s very difficult to say and to identify I’m aware of that”. should be doing it. I didn’t realise that my know what makes them tick, what’s at the a magic moment because my life is dementia is not unique to me because end of it and being in a support network is full of them – coming here today is a All of my friends who support me, many everywhere I go, people share it, Sharing not easy because of the various things. magic moment, meeting like-minded of them I’ve served with and I’m known my dementia, whether you like it or not, people is a magic moment, but there are as ‘the dementor’ and what they tend to you are and it’s very important that we So my magic moment was suddenly things that make you catch your breath do is they tend to tell me things I don’t do understand that it takes a while for people realising all the people that support sometimes which you haven’t taken into right rather than things that I deliberately to get you to understand where you’re me get me, which I didn’t think before, consideration prior to this realisation do wrong. I was going to a meeting with coming from and almost with dementia, I thought they were doing it out of and it was that my dementia is shared the Welsh Government. I was with Chris when you meet somebody, it’s like having friendship, loyalty and duty, but no, they by everybody, everybody shares my and Jayne and I had a lift to the station a girlfriend for the first time, you need to get me”. dementia - wherever I go, whatever I do, off Alan and I had a lovely 3-piece suit whoever I see, right now in this room, on but I forgot to put a shirt and tie on. you’re all part of my dementia journey But you see the reason I’m comfortable because wherever I go dementia is with with this and I think it’s a metaphor for me; I can’t leave it at home and I can’t the way services should be provided; all pretend it’s not there, it’s there. I live these people know my history, they all Everyone is an expert! alone and whenever I speak anywhere I’m know my preferences, they all know my always sometimes introduced as: Nigel, ambitions and I’ve still got ambitions. Working in partnership to establish new ways of work to enable the man who lives alone with dementia. I They all know my weaknesses and my to support effective care and transition wish, I wish. There’s about 10 or 15 people weaknesses are I guess my temper, I’ve who keep me afloat and I was off to get got a terrible temper and if you want to be “Mum had been living independently, Psychiatrist that I wanted to implement drunk with a friend of mine, a taxi driver, friends with me, that has to be taken into driving etc. A series of mini strokes left a contented dementia plan for my mum. Alan and he said, “I know more about consideration. I think that should form the her very confused and lacking mental The Consultant showed interest in the dementia now than I ever have before”. I basis of a social care provision. It should capacity to make decisions about where method and offered to stay involved to said, “You’ve learned to read have you?” be based on people who come into your she would live. In hospital for six weeks help implement it. When the time came, He said, “No”. He said, “It’s watching you”. room and come into your home and don’t and during this period I read up about he met with staff at the care home and I said “What?” He said, “Because I know say, “What would you like me to do?” dementia, including a book ‘Contented with me to help implement the plan. The now that it’s not the big scary thing I They know what needs doing. They know Dementia’. Towards her end of time in Consultant continues to be involved”. thought it was”. I said, “I’m just one person, how you want it done and they know who hospital, I mentioned to the Consultant

Partnership & Relationships - Magic Moments in Dementia Care Services 12 Quality Theme Partnership & Relationships Time and Conflicting attention Understanding the person and their interests abilities to support and enable them to participate in valued activities Understanding people’s relationships to support people through the “When I was an occupational therapist in journey a memory clinic and often in the Valleys, we would get people who would come “Mine is a magic and a tragic moment. very late on in diagnosis and very often It is about two perspectives isn’t it? they are at crisis stages. We had a lady I was asked to do a mental capacity who had a dementia and her husband A major miner assessment for someone within the was caring for her. The lady was having Support and enable the people to team and it was around respite. I difficulties with her self-care and the meaningfully participate and engage in have met this gentleman a couple of husband was finding this difficult to their communities times before and his wife and it was manage. The husband would lay out the finding things that he liked to do. He clothes, she would get up and would had actually made his own furniture, sometimes wash and dress - if she I am going to talk about someone you “No, he’s not doing it right – I’m going to for example, his coffee table, his TV did dress, she would stay in the same don’t know. His name is Cliffy, but he gave show you how it’s done” and he got up stand etc. and it was fantastic work. clothes. Her husband would say he me a shining example of why people with and actually took the lamp from the tour There was a workshop at the back of wanted her to go into residential care. It dementia cannot be ignored. guide, the care staff were amazed. He the garden which he could no longer took me quite a period of time to work out hadn’t spoken for about two years. He We were part of a group who were access because his wife didn’t take what the route of the problem was. Took hadn’t communicated until he got out of looking at the feasibility of using a mine him there so we explored getting a me quite a few months and by the time his wheelchair and I asked, “Why don’t as a place for visiting, for people living support worker to come in and get this I had finished working with this lady, I you get a job here?” Charlie, the care with dementia. I happened to be there hobby back. He was all for it and really remember her dressed in all her beautiful home worker was next to me and she was when Cliffy was there. Cliffy was from a engaged and positive, but for me the clothes, as she was always a very well in tears. She said “This makes it all worth- nursing home and in a wheelchair - he tragic thing was that his wife wouldn’t dressed woman and she would put her while” and it does. had difficulties communicating. There allow him to do that, it was that barrier makeup and jewellery back on, she got were these wonderful curators that were Don’t be surprised with what we can do, that it was too much work and she liked to the bottom of the stairs and she had ex colliers and I love talking to them because we can do a lot. Cliffy, you’re a him to sit in his chair and be still and done a twirl and her husband said, “Wow, because they have more stories than me! hero. You’ll never know it and never want it was de-skilling. It was really sad. We thank you for bringing my wife back to to know it, he just did what came naturally could do lots with this gentleman who me” and after our input, she stayed at They were showing us the safety lamps by showing people the proper way to use still had the ability to do something home for 18 months longer and that for and Cliffy was sat in his chair. All of a a safety lamp. He might have dementia, that he enjoyed”. me was my magic moment. It is part of us sudden, he jumped up and said “He’s but he is also a proud old collier”. working together with dementia services not doing it right” and he said again, and how they want to be”.

13 Magic Moments in Dementia Care Services - Partnerships & Relationships Using stories of How to: Shape our Learning experience to shape both Simple exercises for exploring and learning service development, from stories improvement and learning

The stories listed are full of meaning, The stories in this booklet are supported It’s good to talk as were the conversations we had by some simple exercises to help about them. They give us insight into people talk about and learn from the an introduction to Exploratory Talk what matters most in dementia care ‘magic moments’. Stories can generate services and point the way to the sort of ideas for change – we call them change Reading these ‘magic moments’ will to facilitate these kinds of conversations, standards we should be working to and ideas which can lead to improvement invariably stir an emotional response. We called Exploratory Talk, which has been give us food for thought for learning. projects that are shared to spread the are all touched by stories. However, there used to support group learning with both improvement across dementia care. It is a danger that we are touched, but adults and children. The stories, those ‘magic moments’ is important to encourage sharing and have also contributed to creating not moved to do anything differentas a to create your own ‘magic moment’ This is a talk in which every member of a coproduced set of standards for result of this. stories that can be used to learn, the group is invited to contribute; reasons dementia care services and this booklet inspire, empower and enable others. One of the best ways for stories are asked for and given; contributions are can be used to support implementation. to support learning and practice treated with respect. A level of challenge development is to share and explore them is expected and ideas are chained together, in small groups. This allows together elaborated and explained as participants to think and talk about some the discussion proceeds with the group of the values, ideas and issues that are aiming to reach a negotiated agreement. contained within the stories. In so doing, participants begin to shape and develop Crucially, the group will encourage their own thinking and the thinking speculation and hypothesis. Discussion of others. As a result, new ideas and groups begin by agreeing on a set possibilities emerge. of ‘Ground Rules for Talk’ which will generate Exploratory Talk. The group Lyn Dawes and Neil Mercer, University of takes responsibility for its discussion and Cambridge, have developed an approach no roles are allocated.

Shape our Learning - Magic Moments in Dementia Care Services 14 How to: Shape our learning It’s good to talk Ground Rules for Exploratory Talk Exercise 1: Preparation Exploratory Talk: requires: Select 8 to 10 ‘magic moment’ stories from this booklet, or from your own • Everyone will be asked to say what they • A topic, which merits discussion. For Facilitating a simple practice. Using PowerPoint or Word, type think example, ‘magic moments’ from this Exploratory Talk each ‘magic moment’ on a separate A4 booklet • We will listen and think about all points discussion around sheet with its title and ideally a creative of view • Time in which to agree or generate common picture from the Internet that Ground Rules for Talk ‘magic moments’: illustrates the ‘magic moment’ (see care • Ideas will be challenged; reasons will be home example below). Once completed, asked for and given • Time for the discussion to unfold Possible context – this exercise would print off each illustrated ‘magic moment’ • We all share all relevant information • A clear use or purpose for the products be ideal in a practitioner team meeting, on a separate sheet of A4 paper. of the discussion. For example, what are or a consultation exercise involving • We can ask for clarification, explanation, the implications of the ‘magic moments’ practitioners, family members and people elaboration, or speculation and our discussion on our practice? with dementia • We work towards a group The chance to hear and consider a range understanding of each other’s point of Time needed – this exercise requires 30 of points of view in equitable discussion view. to 45 minutes is invaluable. In addition, such reasoned By ensuring that the language of reasoned discussion enables participants to Group size – ideally around 15 - 20 people discussion is used, the group can expect assimilate the tools of reasoning which to understand more about the topic or benefit thinking when subsequently Setting – a room with a circle of chairs ‘magic moment’ and more about one problem-solving alone. and floor space so that people can walk another and can frankly share areas of around and spread out. uncertainty and lack of knowledge in a ‘safe’ forum. Some of the ‘magic moments’ in this book may appear risky to some and not to others. These different perceptions can be valuable in challenging Until death us do part assumptions and uncovering hidden issues that may need to be addressed. A man in our service who lived with dementia asked me for a pencil and tape measure which he could see on the desk. I did not know why he wanted them, but gave them to him. From that day on he did not put them down. For a start, he used them to measure the floor with a big smile on his face as he did so. When his wife came to visit she commented that she had seen a big improvement in his mood, as he was constantly smiling and busy, measuring and recording information. This man had been an undertaker and that he was probably measuring us up for our coffins! This man had been an undertaker since he was 14 and this had been the family business for many generations. A small plastic tape measure and pencil had made all the difference to this man, through which we were able to support him in achieving a sense of familiarity, purpose and achievement.

15 Magic Moments in Dementia Care Services - Shape our Learning Facilitating the Instructions for the • Why did you pick this story? At the end of the discussion ask everyone to sit back down in the circle of chairs and • What are the important values or exercise provides the exercise facilitate a general discussion about what themes within this story? has been shared, referring to the flipchart background Tell participants that you are going to • Does anyone agree or disagree with notes. talk about ‘magic moments’ using an Start the exercise with everyone sat in a this? approach called Exploratory Talk. Once everyone has had their say, invite circle. Tell everyone about the importance • Is anyone worried by this story? Were them in turn to share their ‘last words’ on of valuing stories from practice, e.g. ‘magic Give them a short description of there any risks? the subject, ideally what they think could moments’ and how they can inspire Exploratory Talk and ask them to be done within the service or organisation us much more than bullet points on a • Does anyone in the room have identify some ground rules for talking that would support more ‘magic moments’ PowerPoint presentation. You can also something else to say about this story? together about the ‘magic moment’ like the ones that have been discussed. It point out that people make sense of the stories. • Does anyone have any similar or is important not to put pressure on people world through stories and learn and grow contrasting stories from their own to say something if they do not want to. through sharing and talking about stories Once these have been agreed, ask practice? Give them the opportunity to say “pass” if with others. You might want to share the the group to listen carefully to each they don’t want to say anything. following Terry Pratchett quote: of the ‘magic moments’ in turn. Invite • What are the implications of this story about the way we work? individual participants to read out loud Hopefully, by the end of the exercise, you “People think that stories are shaped one of the ‘magic moment’ stories in • What are the implications of this story should have a list of ideas for action and by people. In fact, it is the other way turn until all have been shared. for our managers? a group of inspired, better connected and around” encouraged people. After they have all been read out, tell • Can anyone think how this story could participants that you are going to lead to another, perhaps even more place the ‘magic moments’ spaced out ‘magic moment’ stories? on the floor and invite them to stand Whilst participants are talking, it is helpful Set the Ground Rules by the ‘magic moment’ which seems to have someone writing down key points the ‘most magic’ to them. for Exploratory Talk on a sheet of flipchart paper. For example, some of the following themes may come Discussion groups begin by agreeing Invariably people will pick different up: Relationships matter, people need on a set of ‘Ground Rules for Talk’ which ‘magic moments’ or the same ‘magic meaning and purpose in their lives, a will generate Exploratory Talk. The group moment’ for different reasons. This sense of belonging or continuity with past takes responsibility for its discussion and is a rich source for learning. Once life etc. no roles are allocated as in Reflective everyone has selected their story, invite them to start talking about why Exercise 1 established the ground rules. Repeat this process for all the ‘magic they have chosen this story, taking moment’ stories. each selected ‘magic moment’ in turn. When discussing each story, you can tease out the conversations by asking a range of questions. For example:

Shape our Learning - Magic Moments in Dementia Care Services 16 How to: Shape our learning It’s good to talk

Regulation, inspection, guidelines and Thinking about ‘magic • When will we know it is too risky? protocols have a place, but that place Exercise 2: • What will we do to stop this activity if is more commonly concerned with moments’ in your own and when it is becoming too risky? ‘Magic moments’ and Positive Risk- organising and managing services. In the Taking, by Steve Morgan case of ‘magic moments’, if any attempt life and how to create The answers to all of the above questions is made to over-analyse the moment the are not straightforward, but they are Reading through the ‘magic moments’ them for others: magic will be lost… you can’t care plan worthy of exploring if we are to nurture outlined in this booklet reminds us that for them to happen! The following reflective questions can creative, kind and wise practice in we are all a collection of our past joys, be explored individually or as a small dementia care services. experiences and even challenges. So we need something very different group. Reflecting on your experience of if we are to create the conditions for ‘magic moments’ in your own life. In a world all too often dominated by They represent our way of searching magic to happen. We need to adopt a fixed rules that demand compliance, for personal connection, meaning and ‘glass half full’ approach by asking, “What • What did you used to do? we need practitioners who do the right identity. Each and every one of us is an is it we can do and how can we make it thing for the right person, in the right individual and so are our magic moments; • What did you enjoy the most? happen?” Just identifying the difficulties way and at the right time. This cannot be deeply personal experiences that bring and how we should stop them simply • Where did you live? achieved by following rules. The American a tear to the eye of the beholder and of doesn’t work. The most important skills Psychologist, Barry Schwartz, suggests anyone else that witnesses or reads about • Who have you met and known? are those of every day courtesy and that the best health and social care them. common sense, combined with a few • What was the smallest thing that gave workers are like jazz musicians. you the most pleasure? In all of the stories, a consistent message ‘magic moment’ type of questions. “Don’t get me wrong. We need rules! is that someone took a risk in order for the • What risks were associated with your Jazz musicians need some notes… but ‘magic moments’ to emerge. It might be own ‘magic moments’ and were they Things to bear in mind: too many rules prevent accomplished a risk about an activity, a risk regarding worth taking? jazz musicians from improvising, and as the nature of relationships, or a risk of • It’s about our personal histories, so a result, they lose their gifts, or worse, failure in stepping outside the norm or gently enquire about the past Creating ‘magic they stop playing altogether”. pre-determined care plan. Positive risk- • Listening to people moments’ for others: taking, in this context, is all about creating Extract from TED talk available at: • Focus on them rather than make the experiences that produce that tear of www.ted.com/talks/barry_schwartz_ assumptions about them • What is the potential ‘magic moment’? joy, the passing smile, the kind word, a our_loss_of_wisdom tiny act, a bold action, a big achievement, • Use the person’s own language, not the • Why will it be so positive for the or a rekindled wish. Taking a risk is jargon of services individual? We hope that exploring these stories, standards and learning activities will so important in all of our lives, so the • How can we make it happen? question is how we can go about doing it • What does risk and taking a risk mean promote the wise and virtuous practice with others who may be more vulnerable for them? • Who needs to be involved in making the that is necessary to make the spirit of the for reasons of health and personal • Being observant in order to see the decision? Dementia Action Plan 2018 – 2022 a living and vibrant reality. circumstances. Often we ask ourselves smallest of reactions to personal • Who else needs to be informed? and others “What is the risk of doing reflections and experiences • Who needs to do what? **Exercises adapted from the DEEP project, Swansea something?” In positive risk-taking, we University’ • Taking action to support the moment have to ask a different question i.e. “what • How will we know when it happens? is the risk of NOT doing something?” to become a reality (or considering the rare occasion when it is a risk too far).

17 Magic Moments in Dementia Care Services - Shape our Learning Digital Storytelling by Digital Communities Wales

Digital storytelling is a simple, creative process through which people with little or no experience in using online technology can tell a personal story as a short film using still images, narration and music.

Using simple and usually free apps, digital “Themes in the stories include older stories can be created with a smartphone adults’ lives, experiences living with or tablet. Digital engagement is crucial to diseases, and factors that contribute the process of putting together a person’s to longevity. Positive changes in older story so support for the individual telling adults are confidence, level of speech, the story may be required. Encouraging sense of purpose and fellowship, social participants to reminisce and tell stories engagement, motivation and, intent to from their lives can have many positive change one’s health behaviour.” health benefits and capture magic moments.

The following is from research undertaken Digital Communities Wales (DCW) by Innovation in Ageing in 2018: offers training sessions: for apps “Digital storytelling benefits seniors as that are available on Apple devices it promotes active reminiscing, and the and apps available on Android direct participant involvement in the devices. During the session DCW will story creation on a digital platform. It also demonstrate how you may use these challenges the limitations of dementia, apps to upload images and combine possibly creating new paths inside the them with a narrative or written text brain or delaying the decay of existing and music to create powerful short ones.” films for learning.

18 Magic Moments in Dementia Care Services HOW TO: evidence Change ideas learning from stories

Conversations and stories or any narrative When the stories and exercises in this FIVE Ws – key questions to shape and is called qualitative data and is vital booklet have been used to develop evidence learning and development that can in the world of health and social care conversations and new stories about quality improvement. Stories support dementia care, and change ideas have create Magic moments in dementia care the numerical data, (quantitative data), been generated, we would like you to share your stories and learning. as it brings a reality to the numbers. • Tell your magic story • What difference has this magic story Stories can paint a real picture about the A simple template has been developed made to you as a person and to your experiences of people who receive care • Why is your story magic by Improvement Cymru and practitioners practice? and the people that deliver care. • Who is involved in your magic story - engaged in the National Dementia Care who are the people connected to your • What difference has this learning By using this booklet we hope Programme, to encourage reflection story and who has learnt the most - for opportunity made to people living conversations will happen and stories will and learning. It is important to capture example: you, your colleagues, family with dementia and their carers and be captured that in turn produce ideas how the stories and exercises have and carers, the wider community families? for change. Stories can be explored to impacted on the knowledge and skills of • What other learning opportunities do help us understand the detail and learn the people that provide care which will • Where and how can you share this you need to develop your practice about what really matters, what is really result in a positive impact on the quality learning with other practitioners and and who you will discuss this with? happening and what people are thinking of life to the person living with dementia, carers - there can be many ways to use and feeling. This process will help us focus families and carers. this learning in a variety of settings on the ideas generated that can make The learning template is available to • When and how will you use this a difference to the quality of care and download on the Improvement Cymru learning opportunity to evidence a supports a quality improvement approach Website, https://phw.nhs.wales/services- change in your practice? that can be shared, resulting in a change; and-teams/improvement-cymru/ along to the care practiced, to the environments with guidance on how we can share this of care and to new initiatives developed work nationally as part of a learning from and adopted. stories resource. You can learn more about Quality Improvement methodology includes Improvement in Wales by visiting asking the FIVE WHYs to get to the root Improvement Cymru’s website. cause of a problem, we have used a similar approach by using the FIVE Ws to focus on the learning and development that can shape the way dementia care is delivered.

Change ideas - Magic Moments in Dementia Care Services 19 Acknowledgements

A special THANK YOU to: References: Further reading:

All the people who attended the 1. Gotschall, J. (2012) The Storytelling Andrews, N. and Beer, C. (2019) “The workshops - for taking part and sharing Animal: How Stories Make Us Human, Story of Georgie Muscles: A Narrative significant experiences both the ‘Magic’ New York, Houghton Mifflin Harcourt Approach to Nurturing Well-Being and and ‘Tragic’ moments of dementia care Evidence-Enriched Practice in Health and 2. Lipman, M. (2003) Thinking in service delivery. Social Care,” Storytelling, Self, Society, 15 Education, 2nd Edition, Cambridge, (1), 92-107 Nick Andrews, Lyn Dawes, Neil Mercer Cambridge University Press and Steve Morgan and the Wales School 3. Bate, P. and Robert. G. (2007) Bringing The DEEP Project: for Social Care Research for their work user experience to healthcare www.walessscr.org/en/deep shown in this booklet. improvement: The concepts, methods Improvement Cymru are the all-Wales and practices of experience-based The creators and editors of this booklet: Improvement service for NHS Wales. We design, Abingdon, Radcliffe Nigel Hullah, Nick Andrews, Rebecca are experts in developing, embedding, Hanmer and Michaela Morris for their 4. Andrews, N., Gabbay, J., le May, A., and delivering system-wide improvements The drawings in this booklet have been expertise and dedication in supporting Miller, E., O’Neill, M. and Petch, A. across health and social care: created by the children of Bishopston and inspiring everybody to create and (2015) Developing Evidence Enriched www.phw.nhs.wales/services-and- Primary School, Swansea, supported by experience ‘Magic’ moments in dementia Practice in Health and Social Care with teams/improvement-cymru/ the educational charity XLWales - care. Older People, York, Joseph Rowntree Foundation Integrated Storytelling: 4 Highpool Lane, Newton, Swansea, XLWales and the children of Bishopston www.artsinhealth.wales/integrated- SA3 4TT - Primary School, Swansea for the lovely storytelling www.xlwales.org.uk drawings

Improvement Cymru for supporting this work as part of the Dementia Care National Programme

Additional drawings created by Primary School children in Cardiff.

20 Magic Moments in Dementia Care Services - Acknowledgements