Oxfordshire News Issue 3/2016

Young Dementia Network to launch at conference in September Sarah Plummer, National The Network is being created Development Manager at to influence, educate and YoungDementia UK will share connect people in order to the exciting news of the improve the lives of people launch of our new Network for affected by young onset. people affected by, or with professional experience of, To find out more or to sign up, young onset dementia. The please visit our website Network will be launched on 27 www.youngdementiauk.org/ September at our conference young-dementia-network being held in association with the Journal of Dementia Care.

Doing Dementia Differently Following Stockport-based EDUCATE’s spring visit to YoungDementia UK in Oxford, eight of us paid them a return visit in June.

First stop was a young onset dementia workshop. Each person with dementia shared what helps them live well and their wish list for anyone else with the condition. Everyone felt staying active and involved was vital.

Later, at the Stockport Plaza, we enjoyed a memorable evening of music, poetry, film and theatre, mainly performed by people with dementia. Jacqui read her poems to rapturous applause from the 500+ audience!

We spent mealtimes, breaks and travel-time deep in talks about what enables people with young onset dementia to live a full life – and came home with ideas and plans aplenty.

Holidays to Float Your Boat

My husband Martin and I had always travelled a lot, even after his diagnosis with frontotemporal dementia in 2012. But though I still enjoyed it, I was very aware of the stress such trips put on me. I found Dementia Adventure (DA) online and we signed up I joined the boat ‘Provident’ for a sailing break. in Portsmouth and we sailed to the Isle of Wight in the After booking, I was anxious evening, after a lovely meal. whether Martin would enjoy it, how would we manage his Next day, the Skipper sometimes difficult behaviour explained our route and in close proximity to others, warned us of challenging was it safe etc, etc. conditions ahead! We then set off past the Needles for But I needn’t have worried. As the open sea. well as four people living with dementia and accompanying As the waves grew higher I friends / family members, there felt increasingly queasy and were four staff from DA, plus wished I hadn’t enjoyed such the captain and two crew - all a hearty breakfast! We were there to support us. deluged by a huge wave. Feeling sick and cold, I was Martin visibly enjoyed the fresh not at my best but, buoyed air, scenery and sociability of by borrowed warm, dry our five days aboard. clothes and my fellow sailors I Challenges arose but help was got through it. always at hand, along with lots of laughter. It was a lovely I enjoyed taking the wheel on holiday, helped by glorious the final afternoon, and felt weather so I’ll always be glad honoured next morning when that I didn't cancel. Sailing a the Skipper asked me to take London barge along the Essex the boat the last few miles coast was brilliant - the right into Brixham harbour. It experience of a lifetime! rounded off an enjoyable trip. Janet Green Peter Hill 2 For info about Dementia Adventure - www.dementiaadventure.co.uk

Getting together

The Supper Club ‘There are no strangers here, Founders’ only friends you haven't yet Garden Party met’ - a famous quote which Almost 100 people fits the Supper Club perfectly! attended this year

and Millway Barn, There is something for Appleton proved everyone. Time to catch up a lovely venue. with friends is important so the Despite breezy, overcast first hour is always quieter weather we all had a before the main entertainment super time. The buffet starts. Recent themes have table groaned under all included summer holidays and the delicious bring and the1960s but, theme or no share food and the music theme, every Supper Club played by Fiddlebop was aims to offer tasty food, good just perfect for the company and great music! occasion! Special

thanks to all who Supper Club regulars, Mick helped out. The and Angie Way, share what it pictures speak means to them. for themselves!

Sue Smith ‘What are we going to wear? Socials Coordinator Getting ready for a meal, a little dancing and talking to our friends. It's down to the Supper Club at Cassington. The entertainment could be anything from Elvis to Hawaiian themed. We eat our meal to a bit of background music then go and have a boogie on the dance floor. We chat, laugh and dance all at once. Can't wait ‘til the next one!’ Save the Date ...

Christmas Party! Thursday 8 December, Do join Mick, Angie and the 7.30-10pm, at Cassington Village Hall. rest of us at 7.30pm on the Invitations and details will come later fourth Thursday of the month but for now, make sure it is in your diary! at Cassington Village Hall. 3

Out & About

Take part in our new film Last year we created a short film ‘Make A Point About Young Onset Dementia’ which gave you an opportunity to have your say about young onset dementia and how it affects your life. It was really well received so this year we’re Lavender for Liz looking to create a follow up. Liz Woods had often said she would love to visit a lavender This time we want to produce a farm so YDUK’s Liz Greenlaw film that shows the value of set up a trip to Jacob’s Field having support. This support Lavender Farm at Islip, near may come from anyone - Oxford. Liz G continues ... family members, friends or professionals. We want it to be ‘Jacob's Field is a community really positive and show lots of run enterprise, using land different examples of the given by a local landowner. exciting and interesting things Volunteers plant, weed and you do and the benefits being harvest the lavender, and well supported brings. distil the oil on site. External producers use it in beautiful If you’d like to get involved in products, which are sold in the film, you can record a short aid of local good causes, video clip on a electronic including Vale House. device and email it to us. A lovely lady called Julie Or you can send us a photo welcomed us, showed us and a few lines of text, stating round and took care of Liz, what special things you enjoy who is registered blind and doing with the support of others has PCA. It was a scorching and we’ll edit it all together. hot day but there was nowhere better to be than in To find out more about the film a field of lavender with bees and how to get involved, buzzing and the lovely smell please email Kate Fallows, around us.’ Communications Coordinator [email protected] Where have you been Out & 4 About to lately? Let us know!

Planning Your Future

Legal & Financial Workshop Pathways Through Dementia offer free legal and financial information to those living with wishes around future health dementia and their families. So and welfare decisions. we were delighted when  Make a Will, so that your Sara Wilcox from Pathways wishes can be made known. came to Oxford to run a  And finally, contact Pathways workshop for us in July. Through Dementia with any specific concerns / issues. Sara asked about issues that particularly affect people with young onset dementia and talked about leaving work, redundancy, planning ahead and support for care. Key points from the session include www.pathwaysthroughdementia.org  See a financial adviser as soon as you can to identify Sara will also be speaking at your options in terms of YoungDementia UK’s joint mortgages/Wills/future plans, conference in September. We especially if you have young hope to use her presentation children. Some financial to create a resource for advisers will charge, others people affected by young may give a free initial session. onset dementia.

 Complete a Lasting Power of Attorney for finance and Members’ Tips health while you are able We are planning a new regular and consider who can act on newsletter spot featuring your your behalf if you are unable tips on any aspect of making to do so. There is no need to life with young onset dementia pay to register it until you easier. We’ve already had need to – and people on some great ideas from our Like benefits don’t have to pay. Minds Plus group, now called  Complete an Advance PACE, which we’ll share with Decision which will guide your you next time. Email your tips to family and lawyer on your [email protected] 135

Fundraising

It’s been a busy summer for In July Sarah’s house became fundraising. First there was a a hub of hard work and a hugely successful Film Night depot for the various stalls that organised by Eynsham Rotary she organised for the Muddy Club who were supporting us Waters Family Fun Day. We for the second year running, were overwhelmed by your and raised £715. donations for the raffle, bottle tombola and cake sale – thank you!

We were lucky to enjoy a really beautiful sunny day and even the rain late on didn’t dampen our spirits, as the event raised over £1,500!

Next up, two intrepid cyclists, nephews of YDUK Trustee Janet, set off on a mammoth cycle ride from London to Paris, amassing nearly £3500 for us and Charlie Platts raised £1500 by running the London Marathon. Our thanks to them all for taking on such energetic challenges! Thanks to all our amazing Lesley and Mary did a great volunteers – Rebecca, Sue, job running this year's Emily, John, Nick, Jacqui, Cake Sale in Paula, Charlotte Summertown and Paul for their which raised help on the day. £280. Thank you so much And a mega big to everyone thank you to Sarah who made or whose ideas, energy bought cakes, and enthusiasm or helped on made it such a 6 the stall. success!

Just as we were going to press the Co-op gave us a lovely surprise of a cheque for over In August, Martin Keown, £1,300, collected from plastic ex-Arsenal and England carrier bag sales in the footballer (and YDUK’s Kidlington and north-west Emeline’s brother-in-law!) Oxford stores. gave a football loving audience of over 120 people And finally, we’re starting to the low down on his club and plan our Dementia Friendly international career, his views Festive Christmas concert on on Euro 2016 and the 3 December, to raise money upcoming football season. for YoungDementia UK and The evening was a big Daybreak. Please come along success, raising over £2,100! with your friends and family. Huge thanks to Martin for so Tickets are available from generously giving his time. www.youngdementiauk.org/ festive-concert Coffee & Cake Our Coffee & Cake appeal If you’d like to fundraise for us raised over £2,000 in 2015. contact Helen This October it’s back again [email protected] and we want you to help us raise even more ‘dough’!

Last year, cake sales were organised up and down the country - keen bakers held sales at home, at work, with their young onset groups, October’s the month at church and even in a for Coffee & Cake! hospital! Could you run one for us this October? It can be as large or small as you want and held anywhere you think someone will buy a cake and a cuppa - or several! 7

And finally ...

Culture Corner Two Moving Music concerts will be held on Thursday 6 October at 11.30am & 2.00pm in the Jacqueline du Pre Music Building, Oxford, OX4 1DY. Reservations 01865 286660. £5, carers free. Refreshments ½hr beforehand.

Chipping Norton Theatre’s Christmas pantomime ‘Robinson Crusoe’ runs from 15 November to 8 January, with a ‘Relaxed Performance’, suitable for those with dementia, at 2pm on 8 December. Bookings 01608 642350.

The ‘Kicking the Bucket’ Festival in Oxford will include a reading of young onset dementia play, ‘Don’t Leave Me Now’ on 5 November. Further details to follow soon.

Goodbye & Good Luck! Sadly, we’re saying farewell to Anna McNally, Young Onset Dementia Adviser, who has been such an asset to our team and to the families and friends she supported. Wishing you the very best of luck in your new job!

Contact us There are lots of ways to contact us—via email, Facebook, Twitter, or by phone or post. To email any member of the YoungDementia UK team, please use the format [email protected] Some useful contacts are

Support Service Manager Support Coordinator Anna Eden Mandy Blair 01865 794311 07958 721324 Communications Young Onset Dementia Adviser Kate Fallows Emeline Keown 07748 304207 07909 060430 Community Fundraiser Helen Lerwill 07479 940847

YoungDementia UK PO Box 315 Witney OX28 1ZN 01993 776295 www.youngdementiauk.org [email protected]

Registered Office 7 Mount Pleasant Crawley Road Witney OX28 1JE YoungDementia UK Company No 4142850 Charity No 1085595