Network of Dementia Voices We had joy, we had fun we have

The Newsletter from the UK Network of Dementia Voices

August/September 2020

Contents:More news from the network ......................... Page 10 to 15Closing thoughts ..................... Page 16

Updates from Innovations in Dementia projects........................Page 2News from the network ........... Page 3 to 7 Sunflower results ................ Page 8 and 9

We had joy, we had fun... we have the winners from the sunflowers!

Claire from Shindig in Sheffield came back from a restorative holiday. As she left, the owner of the bed and breakfast charged a quarter of what she should have paid. They said to her ‘You have run your fingers through my soul’. Sometimes we just have no idea of the power of what we can give without even knowing we are doing it! Afterword: Claire says she has danced to this rock song ‘on many occasions in Sheffield Leadmill night club’. Thanks for sharing that wee secret Claire!We have great delight in sharing the results of the DEEP sunflower competition! Please see pages 8 and 9 for the results and some fabulous sunflower specimens. We have learnt that size is not everything and that it is indeed the taking part that counts. Thanks to Budding Friends Exeter (pictured) for kicking off the competition. The DEEP Network have shared gifts of 30 copies of “The boy, the mole, the fox and the horse” as featured last month – which we know has given so much joy to the people who have received them. Dot (a former teacher) received her book; she is now struggling to read but she loves the illustrations.Enjoy a super bumper 16 pages of inspirational news this month. Stay safe and well in every way xxx

Place your hands on my hope, run your fingers through my soul’ – Reef. Challenge your assumptions – this is not Shakespeare or a biblical quote – it’s a rock song!

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“I believe I have green-fingered powersSo, I planted the seeds of sunflowers.Soon they appearedIn the space I had clearedDEEP from the soil that empowers”A limerick by Frances from Brecon

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Updates from Innovations in Dementia projects:

Online TutorialsOnline tutorials: From the ‘Getting Along’ programmes we aim to create a series of online ‘tutorials’ for couples where a partner has been diagnosed with a dementia. These will be short 5-minute pieces and will be freely available.

Train the trainer As well as the ‘Getting Along’ sessions we will be running a ‘Getting Along’ facilitators’ programme for up to 32 people across the UK so the approach can be used as widely as possible.

Virtual “Getting Along” programmes to support couplesWe know that with the presence of a dementia, relationships can be strained. The lockdown has made this situation even harder for many couples. ‘Getting Along’ is a programme that looks to help you, as a couple, to avoid a lot of the traps that dementia sets. We will be running virtual ‘Getting Along’ programmes to support couples anywhere in the UK. If you want to find out more or if you know someone who might benefit contact [email protected] or ask your group facilitator.

Do you have any Tips you would like to share with others who have dementia? Maybe Tips about how you manage to remember things: how you keep friendships going; how you get the most out of health appointments; how you cope with noise. Or absolutely anything else!!! If so, please send them to [email protected] for our new website.

Tips for activistsYour facilitator will also receive some copies of “Practical tips for newer dementia activists, and their advocates and allies.” These come out of the Loud and Clear project which was funded by Life Changes Trust.

Dementia Tip-Share

Dementia Craftivists All facilitators in the network will soon be receiving some printed labels. These can be used by anyone with dementia who is creating arts or craft in your group. There is a space on the back for your own message. Please take a photo of the creation with the label on it, and send to [email protected] or ask your facilitator to do it for you. Then feel free to send your creation to someone else.There’s still time to order your face-mask kit from Gail Gregory. It’s free and very simple to make. Email [email protected]

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News from the network

Update from Up & Go in Leeds Nicky Taylor, one of the Up & Go facilitators, writes: Up & Go had a positive meeting again this week and discussed some the challenges we face. We are still meeting online and will be for the foreseeable future. Many of our group have been shielding and are very careful about re-joining the world. The Leeds Playhouse, where we meet, is still closed, but are making plans about reopening. We will be encouraging the meeting of small-scale groups of less vulnerable people first. Here are some photos from our very creative gang’s artwork. We have Warren’s beautiful paintings - he does paint by numbers and they are over and above anything I’ve previously seen of this method! We also have Lyn who has been knitting amazing NHS workers for a display at Lotherton Hall in Leeds. The hall has connections to Florence Nightingale and it’s 200 years since her birth, so they are celebrating her and our amazing NHS. Finally, we have Rosa’s wonderful poetry.

Hope by RosaSitting with Bobo by my sideLooking out of the windowWatching trees gently swaying in the breezeSquirrels running up and down the treesWhite clouds floating in the skyAn angel in the skyEverything is going to be alright now.

Life by RosaWhy, oh, why, do I feel like this?Sometimes the tunnel is long and darkAnother day it’s so brightWish everyday could be like thisMemories come and goBut memories of years ago are rememberedSometimes cannot remember what happened a few minutes agoSleep is on and off like a switchLoud noises not allowedGoing out can be scaryNot knowing which way to goTwisting and turning this way and thatBut we do get there in the end.

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An update from DementiaGo and DEEP United North West Wales Emma Quaeck, one of the group facilitators, she writes: We have kept in contact with all our lovely people since the start of lockdown and we are still doing that through phone calls and the newsletter. But we obviously need to move forwards now and start thinking about reconnecting with and restarting activities. So I have sent out questionnaires to the groups, to gather information, ideas, thoughts, and feelings about:-

1. Keeping in touch

2. Physical activity/exercise

3. The next steps

In general people are really wanting to get back to the activities and the exercise classes. They are desperate to see people again….but they are in no great rush and are not prepared to get involved in their communities, at least until the tourist season has slowed down a bit.

DEEP in Wales

So, here’s the DementiaGo plan to continue to support peoplePhone callsNewsletterFacetimeConnecting virtuallyZoom Meetings – small groupsZoom Exercise sessions- weeklySporting Memories ClubsDigital training, support, devices.Outdoor Gatherings (small local groups)For example-Walk and TalkPicnicsCroquetGardeningDoorstep / Garden Visits 1:1

Glenda on the go... great for co-ordination

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Wales – ‘Knowledge is Power’ booklet The Caban group members felt that they had gained hugely from sharing tips on services and assistance with other people living with dementia. They decided they wanted to pass on tips from their own lived experience to people who are newly diagnosed, through a friendly booklet. The ‘Knowledge is Power’ booklet is available in English and Welsh. The booklet has been a joint effort between three groups in Wales: Caban Bangor University Educators, DEEP United Dwyfor & Meirionnydd and Fuse & Muse Swansea, supported by the DSDC Wales Research Centre. It is full of information and advice to make life with dementia easier and more enjoyable. You will find information about many things including: benefits and allowances, discounts, travel, access and what different professionals can help you with. Every group facilitator will receive a paper copy in the post during September. Please ask your facilitator if you would like to see a copy and we can always send out some more. An electronic version of the booklet is available to download from the DSDC Wales Research Centre and DEEP websites.

Receiving a diagnosis whilst still working Liz Rose from YDUK PACE in Oxfordshire writes: We had a great meeting last month (July) where we put together people’s comments and advice on receiving a diagnosis whilst working. The group feel that this a real issue for younger people and something they would like to work on. COVID-19 obviously overshadows most issues at the moment, but we are looking at how we can raise awareness on the issue and work with others. We have not decided on when the group will meet face to face. Our general feeling is that we should not meet as a group until absolutely safe to do so. All the group members are able to attend via Zoom, so for the foreseeable future we will be meeting virtually.If you would like to join in the conversation about receiving a diagnosis whilst working, please also get in touch with Martin Robertson in Aberdeenshire who is keen to hear from you about your experiences. Martin can be contacted by emailing [email protected] or ask your facilitator for support if you don’t have email.

“Dementia is life changing, but it’s not life ending. Take advantage of every opportunity offered to you.

You must learn to ask for help, because nobody should be going through this on their own”.

Handy hints that might help make life a little easier after

a diagnosis of dementia

KNOWLEDGE IS POWER

This booklet was written by people living with dementia, for people living with dementia.

It includes information and advice that we hope you may also find useful.

466xx BU Dimentia A5 Eng 20pp with form.indd 1466xx BU Dimentia A5 Eng 20pp with form.indd 1 05/08/2020 18:1505/08/2020 18:15

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DEEP Friends in Northern Ireland would love to meet you!

Dementia NI members have continued to use technology to keep in touch and remain active. Over the last few months members have enjoyed a wide range of activities on Zoom. During lockdown we ran ten weeks of mindfulness and meditation classes. The aim was to help members develop new skills and support health and wellbeing during the difficult time of lockdown. One member said: ‘They were amazing and I really enjoyed them. It helped me to sleep better and to learn how to relax. Really beneficial’Our online yoga sessions started at the beginning of lockdown and are ongoing. The classes are taken by Ruth Chambers, who is a certified yoga teacher specialising in yoga for aging. Her sessions have been well attended and thoroughly enjoyed by members – which is obvious from this photo!Award-winning magician Nikola Arkane hosted a fabulous evening of storytelling, musicality, humour, and of course magic! Members thoroughly enjoyed the special performance and Nikola’s passion for magic from the comfort of their own homes. We have also been treated to three storytelling sessions from Liz Weir MBE. Liz is a storyteller and writer from Northern Ireland. Dementia NI member Davie McElhinney said: ‘The story telling was really great. It brought back so many childhood memories to me. Liz reminded me of when I was young turning turf in the bog. We had to light a turf fire first to keep the midges away - it never really worked. I remembered glass mineral bottles with black stoppers full of cold tea, hard boiled eggs and soda bread with red jam. I now buy a few bags of turf around Christmas, as the smell of burning turf brings so many happy memories.’This page is an excerpt from the Dementia NI newsletter produced by volunteers.Dementia NI are really keen to connect with other groups in the DEEP Network across the water by Zoom. Please contact Paula by email if you are keen to meet up [email protected] Please let us all know what you think!

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STAND A poem called …. Why Me? By Gerry King from STAND When I trip and fall or feel ill at ease.When I bang my elbows or skin my knees.When I burn my hands due to this disease.I never ask....Why Me?When memories of a life gone by.Start to disappear in the blink of an eye.My mind’s shutting down as it starts to die.But I never ask....Why Me?I see your face, but I don’t know your name.My memories of you are no longer the same.I look and smile as I hide the shame.But I never ask...Why Me?My brain is working overtime.As constant thoughts invade my mind.But still the memories fade and unwind.But I never ask...Why Me?Frustration and anger cloud my thoughts.Sometimes overwhelming, sometimes overwrought. Many battles lost; many battles fought.But I never ask...Why Me?So, remember me for who I am.Not me the disease, but me the man.Just walk with me and hold my hand.For the answer’s simple...Why Not Me?

Gerry with group facilitator Ruth

Coming Soon from STAND: A one-hour DVD about living with dementia. 3,000 copies have been funded to be distributed around the Kingdom of Fife in Scotland. They are kindly sharing a copy for every group in the DEEP Network too. Their mascot, a purple hippo called ‘Campus’, is available by special request only... or you can knit your own!

Life Changes Trust have funded a booklet, which was originally going to be a recipe book full of scrumptious cakes. However, as time has moved on, the idea has grown into a ‘STAND Recipe for Life’ booklet. We will also be sharing this across the DEEP Network once published in Autumn 2020.

A summer of DEEP sunflowers

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We have had some flops and non-starters. They’ve been eaten by the dog or swept away in a storm. We’ve had some small beauties suitable for bouquets.The seeds and powers of ‘wishful tall sunflower thinking’ have stretched the length and breadth of the UK. It’s been great planting seeds of hope and joy with you all.

Drum roll please, and THE WINNERS are...

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Gabrielle Howell is a member of “Sunshiners in Dover” Hythe, Kent. She and her 3-year old grandson Finley were the proud growers of a 10ft 6in sunflower which we don’t think is half bad. But they take second prize for the cutest photo by far (apologies to all the ones featuring cats, dogs and dramatic sunsets!) Gabrielle and Finley receive a hand whittled Sunflower trophy craftily created by George Rook.

2nd Place

Eddy Flory from York Minds and Voices receives the first prize of a very special edition DEEP watering can for his spectacular sunflower. It could audition for the beanstalk in Jack and the …with a staggering 11 and half foot! Eddy says he couldn’t be more delighted. When asked for any secret tips about his success he declined to comment.

1st Place

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Some Shropshire DEEP friends came together for a lovely, socially-distanced picnic – enjoying a wide-ranging chat in brilliant sunshine. The event took place in the beautiful Quarry Park, and people gathered in the shade of a tree just a few yards from the River Severn. The group chatted about the coronavirus pandemic, the student A-level results controversy, and (less seriously) about vintage TV comedy stars including Stanley Baxter, Dick Emery and Benny Hill. Other topics included the advantages and disadvantages of working from home as opposed to going into the office, and a shared love of Shropshire’s county town. All went well until – one hour into the picnic – the heavens suddenly opened and everyone had to dash for cover. Most got to their cars as quickly as possible as the torrent hit. But DEEP group facilitator Phil Gillam had travelled by bicycle and had no choice but to cycle home through relentless rain. “I’m not sure I’ve ever been that wet before in my life!” said Phil. “But it was a really lovely picnic.” Attending the picnic alongside Phil were Harry and his wife Lynne, John and Shirley and their daughter Cathy, and David. Several other group members had fully intended to join the picnic but had to send their apologies due to last-minute problems. But it was a truly enjoyable event and people said they were keen to do it again before too long.

We had decided as a group that it would be good for us to have a lunchtime picnic on the promenade in Gravesend. The site was risk assessed (naturally we also had a recce to see how close we could set up to be near the ice cream stand!) and we sent out joining instructions with a copy of the risk assessment to all those who said that they would like to come along. So on the day, everyone brought a chair to sit on as well as their sandwiches, cakes and drinks, setting up in a nice socially distanced half circle. Although most of us had met via Zoom meetings, some of the group were meeting up for the first time since lockdown which was really good to see. Luckily, the weather held up although the forecast was for rain. But even if there had been some rain, I don’t think it would have deterred the group, everyone had brought umbrellas! The two hours passed so quickly. But then time does fly when you are having fun. It was good to see so many happy smiley faces. We can’t wait to do something like this again! It was lovely see everyone, it certainly makes you feel normal, or as back to normal as we can be.

Kindred Spirits at Gravesend Prom

A soggy picnic in Shropshire

From Phil Gillam (also known as the current Mayor of Shrewsbury).

From local correspondent, Tom Hackwood

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Together Dementia Support – on the road again, with two of our ‘walk & talk’ membersWe were able to support two people to go out on a trip in our minibus. We had a risk assessment and made it safe following COVID-19 safety measures.* This was their first trip to our regular park since March (17 weeks!), and their first ice cream of the year in the open air. How they enjoyed it! They marvelled at the swans who had missed their regular weekly feed from the group. And the swans seemed happy to see our members- albeit a much smaller feeding session than usual.


Safety measures:* Sanitising when getting

on and off the bus: seats wiped down, and seat covers removed after each trip.

* 1 client in front and 1 at the back of the bus (2 metre distance).

* Masks worn whilst on the bus.

* Walking 2 m apart round the park.

Positives:• Improved mood• Physical exercise• Socialising• Reaffirming memories of the walks they used to do• Fresh air and good old vitamin D• Ice-cream!

Negatives• Takes as long to plan a trip for 2 people as it does for usual 15• Less able to take out on a rota basis to enable all clients to go out• Risk of low mood – going out then having to wait a long time • Despite all covid measures in place, ‘fears of passing on virus’ and how this may impact on the charity

“Happy go Luckies” in CornwallKatie, the group facilitator, writes: We are the all singing and all dancing (at a distance) “Happy go Luckies” in Cornwall. We love to take part in cognitive stimulating activities, physical activities and bingo every Friday. We also love tea and cake (a lot). We like to say were on an “adventure with dementia”… especially after seeing in Our DEEP News how upset Dementia NI were when they saw a greetings card saying, “adventure before dementia”. So, we decided to change it to “adventure with dementia” and that’s what’s on the back of my van that picks everyone up!

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Online events helping members to improve their technology skillsPathfinders in Kent say that they are noticing the art of speech is becoming more difficult. They are used to speaking with their own family and close friends. But because they are not tending to speak with others that regularly, they often find it is hard to talk with and understand others. Added to this, many of them report not doing as much as they usually do and this is giving them less to talk about. Attending online events helps. On the upside, they are noticing that they are getting to grips with technology more, with some members of the group even considering buying an iPad or Tablet!


Jill, facilitator of the Buddies group in Leamington Spa writes: Here we are meeting for the first time face to face since the very beginning of March. It was a lovely time and we were all so excited to see each other. The sun came out and we had an ice cream. We never stopped talking the whole time we were there. We are looking forward to doing it again, weather permitting. Otherwise we will keep on phoning on a Thursday morning to some and Zoom in the afternoon for others.

A reflection from Dr Sarah Mitchell, who sadly leaves the group she helped to set up, ‘Making Waves’ in North Tyneside. We wish Sarah the best of luck in your new role in Hartlepool and DEEP respect for everything you have achieved. Sarah wrote to her local commissioner as a parting gesture in support of keeping the group going.As a brief reflection, nearly all of our group members and families have noticed a significant decline in functioning and abilities during lockdown. Strikes me as an important reminder of the invaluable role of good post-diagnostic support - whether it be education, activities, connectedness and/or opportunities to meet others in a similar position. There will be so many little things we previously took for granted before we noticed the impact of them not being there!

Leamington Spa Buddies face to face again!

Making a move from ‘Making Waves’

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GP Prompt Card: feedback needed for Kirklees DEEP GroupKirklees DEEP Group came up with an idea earlier in the year of creating a GP Prompt Card. This should help the discussion with the GP in the hope of speeding up the diagnostic process. The leaflet is almost finished, and they would like some feedback from other groups on their thoughts before they send it to a final print. Contact [email protected]

The Scottish Dementia Alumni have been awarded a grant of £5,000 to create a resource to help GPs better support those living with dementia in their community. The funding has been awarded by the Life Changes Trust. The group, all individuals living with a diagnosis of dementia, are already experienced campaigners fighting for the rights of people with dementia. They, together with many others living with dementia, have identified that, while GP services can be incredibly supportive to individuals with dementia, there are also many areas which could be improved through better communication or with some clear feedback. The group will use the funding to research the lived experience of people with dementia. They will produce a resource that highlights areas for improvement and communicates with GPs what services work well for them. This project is important because GP services for people living with dementia vary by region and by GP practice, and the group members have each experienced varying levels of support. The project aims to research and present evidence for providing quality standards of support for people living with dementia through their GP practice. The Alumni will produce a booklet and video to help GPs with issues such as general communication, the information around DNAR (Do Not Resuscitate) forms, booking systems for appointments and online video appointments and consultations. Martin Robertson, the newest member of the group, said: ‘I am glad that the Life Changes Trust grant is showing the continuing importance of the Dementia Alumni and of people with dementia speaking out for themselves.’ Please contact Paula Brown for further details by emailing [email protected]. Or ask your facilitator to contact Paula.


Dementia Activists to help GPs in Scotland with a new resource

A DEEP reminder to have a look at the Young Dementia Network personal checklist (pictured above).

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Barbara of York Minds & Voices reflects on her experience of facilitating the facilitators! I was invited by our York Minds & Voices facilitator, Damian, to facilitate the DEEP facilitators Zoom. Colin (my husband) and I talked about it and I decided to give it a go. As always, Colin is there to direct and prompt. I became nervous as more and more facilitators joined the group on Zoom. The screen soon became full of friendly, happy people, from all over Britain. That was quite daunting for me, as this was my first time as a facilitator. By the time everyone had joined the group, conversations were in full swing. I then relaxed a little. I felt that my role was to ensure that each facilitator was given time to make their point and no one should dominate the session. As the meeting developed, I found that everyone was comfortable with me and my role. Everyone was given the chance to speak and discussed the topics raised. This gave me a big confidence boost to the extent that I was enjoying it too.The hour passed so quickly, and I felt that I had met a new group of friends. I received a round of applause at the end of the session, what was there to worry about? Thank you for the opportunity.Editor’s note - Barbara you were brilliant! Thank you for taking the plunge in at the DEEP end. Come back soon.

Michelle, who facilitates Dementia Voices East Dunbartonshire, has had fabulous feedback to the group newsletters she sends out! They have grown from 2 to 20 pages during lockdown! “The newsletter helps me feel connected. I enjoy reading them and the information is useful” and “a treasure trove of useful and moving items” Congratulations Michelle Candlish!

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Beacon guiding the way for meeting up The Beacon Club in Edinburgh have created some really useful guidance about meeting up again – please check their page on the DEEP website. Nancy Bryson, who facilitates the group, says: We started this week with 5 of our members going out, 2 yesterday and 3 today. Next week a further 3 members and volunteers will meet and hopefully get out for a walk and some fresh air. This is going to be a weekly event, so I am hoping that the members will become reacquainted with staff and volunteers. Small walks will build to become longer walks. Feedback from yesterday was good. Both members went out for short walks and then sat for a while in their gardens chatting to staff.

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Newsletter “a treasure trove” for East Dunbartonshire members


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Phone calls helping members feel valuedThe Beth Johnson Foundation peer support group facilitator Betty says: The good news for us is that one of the three members who could not previously join via Zoom is now able to. Members continue to write letters to other members, and have also started to telephone each other. The response has been fantastic, with those receiving calls saying how much they value the calls and those doing the calls saying how much pleasure they are getting from doing the phone calls. Members say they feel they valued and wished they had become more involved at the start of COVID_19. We are planning our first face to face meeting hopefully in the near future.

Clare, from Pathways in Bradford, writes: We have shared memories. One lady had danced at the Moulin Rouge and on stage in Japan and so the photos were fabulous. Kit and Julie were married when she was 17 and Kit 19, so their photos were beautifully sweet. I’m in the process of receiving the ‘tell us a secret’ entries. For example, tell us something other group members don’t already know about you, tell us a famous person/celebrity you’ve met, your claim to fame, what you wanted to be when you grew up as a child, a hidden talent. We’ve already got some fabulous examples that have had me in stitches or gaining new-found respect (even greater than it was) for our members.

Fran Hamilton, co-facilitator, writes: D-Mob now meet virtually on Zoom. We split the group into two calls and change the groups each time. This means that everyone gets to see each other over several calls. On the first calls, members decided that fortnightly calls would work best, and this seems to be going well. There’s been plenty of chat and lots of smiles and laughter, just like our non-virtual meetings. Everyone’s doing well, resilient as ever and full of best wishes for each other. Speaking to everyone weekly also meant that any niggles or worries could be talked through early.

Moulin memories gets the ‘Tell us a Secret’ entries underway

D-Mob are virtually all chats and laughs in Brighton & Hove

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Rachel Niblock – UK Coordinator for the DEEP networkEmail: [email protected] Mobile: 07720 538851

www.dementiavoices.org.uk UK DEEP Network@DementiaVoices

Closing thoughts

Next month:We would love to hear your ideas for a new national DEEP challenge to unite us through the autumn and winter monthsIt could be:• Jokes - appropriate of course, but maybe share a joke that makes you laugh

and might work for others too!• Haiku poetry - simple poems of three lines, (5,7,5 syllables) to express

something that matters to you.Thanks to Up & Go for kick starting the ideas. Please let Rachel have your ideas

Share our news...get in touch with your news, stories and images. You can: • Post them to: PO Box 616, Exeter EX1 9JB or email them to [email protected] • Telephone them to 07720 538851 or if you are a Dementia Diarist you can record your

news item there.

DEEP is supported and funded by:

Sometimes it is the small things that can make the biggest difference (and that can work in both positive and negative ways). We often dwell on the one bad thing in an otherwise good day; but a famous Persian saying is that ‘this too shall pass’. Worth remembering.

The small things (but they are big things) can unite us and give us joy. Another wise saying is ‘you reap what you sow’.

A personal favourite quote is ‘great oaks from little acorns grow’.

Budding Friends in Exeter have certainly reaped the rewards of their seeds. “

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Documents

Network of Dementia Voices We had joy, we had fun we have