newsletter - youngdementia uk jan … · newsletter spring 2011january 2015 ‘people with dementia...

20
Newsletter January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who. You quite naturally start to chat with whoever is next to you’ - Madeleine

Upload: others

Post on 24-Jun-2020

0 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

Newsletter Spring 2011

Newsletter January 2015

‘People with dementia don’t have a big ‘D’ on

their foreheads … you don’t know who is who.

You quite naturally start to chat with whoever is

next to you’ - Madeleine

Page 2: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

2

Editor’s Highlights

And it is the same in the world

of young onset dementia.

Radio4 breakfast news carried

a report on frontotemporal

dementia a few weeks ago.

I’m sure a few years ago the

story would not have made it

onto the news. The House of

Lords event in December will

have informed MPs of the

issues of YOD. I was at the FTD

conference in October, and

the sense of hope that a

treatment was on the way

was very evident. There is a lot

of research into identifying the

illnesses, and understanding

what is happening and how

to help people coping with

the effects.

Living with young onset

dementia is never going to be

fun. But like clear, blue skies in

winter, there are things that

make it more tolerable; some

are described here.

An evening at the Café. A walk

with friends. A visit from a

support worker. Assistance in

staying on work.

The Books on Prescription

scheme described here has

at least one book specifically

on dementia affecting

younger people.

Good luck to the National YOD

Network, and how appropriate

that YDUK has had a great part

in setting it up. I am sure the

team will not take their eyes

off the ball of the individual

support that can make such a

difference to how tolerable

living with YOD can be. In the

wonderful words of the Turtle

Song, making our choice to

belong together.

Happy Spring, everyone.

Helen Beaumont

Editor

Hi Everybody

I hate winter: getting up in the dark, going home in the dark, almost

always being cold. But it has its good points – bright, sunny summer

days never seem as bright or as clear as winter days with the sun

shining on new snow. And we are over the worst. The days are

noticeably longer now, and signs of spring are around in bulbs

pushing up. The changes are slow, but happening.

Events & activities All of our social events and activities in Oxfordshire for younger

people with dementia, their family and friends are listed on our

website and the enclosed Events flyer. Put the dates in your diary!

Page 3: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

3

Direct Line

Hurrah for the passion, energy

and determination that inspires

us when we look each other in

the eye, listen to the reality of

life with young onset and

decide to change things.

And thinking about inspiration,

a powerful source is the person

living everyday with the

condition. There are

opportunities to broadcast

powerful personal messages -

from talking to a friend about

the impact of YOD, to social

media, writing, presenting and

educating others, and by living

by example which so many of

the people we know with

young onset dementia do.

Within our team we are taking

a close look at how we

support people with personal

experience to share their

thoughts, shape both YDUK’s

services and influence wider

society. Benefits all round of

course, including for the

person with dementia.

After contributing to the young

onset gathering, ‘Jacqui really

seemed to come alive and it

was fabulous to witness. Still on

a high when I saw her today!'

Jen, YDUK support worker.

More of that then please!

Tessa Gutteridge

Director

‘A breath of fresh air’. A glorious thought at any time of the year?

And a description of our recent gathering of people living or

working with young onset dementia.

In the words of Eloise and Christian, our Italian colleagues who

made a special trip to join us - ‘Your highly inclusive approach to

living well with dementia is for us a breath of fresh air - so much so

that we are now committed to setting up a similar organisation in

our community’.

2014 conference delegates brimming with ideas

Page 4: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

4

Young Onset Support

Welcome to Liz and thank you

Yvonne, Tanya and Sean

YDUK is delighted to welcome

Liz Greenlaw as a One to One

support worker. She comes

from a social work background

and has personal experience

of supporting someone with

dementia. It is great to have

her as part of the team.

But we are very sorry to lose

Yvonne, Tanya and Sean.

Yvonne Longstaff has worked

for us as a One to One support

worker for four years and gave

great support to a number of

people in that time. We’ll miss

her and we wish her all the

very best. Good wishes also go

to Tanya Beechey, who joined

in September but has decided

to move on.

Sean Hodgson is also moving

on and will be leaving in

February. He has been the

Coordinator of our Café and

socials which have been such

great events through the year.

A real highlight was Sean and

his daughter entertaining us

with their music. Again, we wish

him well.

Dementia Congress 2014

Brighton

What an event! Three days of

talks and workshops with over

50 poster displays and stalls

giving information about so

many different products and

services to enable people with

dementia to live well. Phew, it

was hectic!

What made all the difference

was the voices of people with

dementia being heard

throughout the Congress and

especially those of people with

young onset dementia. They

loudly and clearly wanted

good quality support

accessible to all, and to be

actively involved in

developing such support.

Next year the Congress will be

in Telford - anyone interested

in going?

Kicking the Bucket – a festival

of living and dying

Oxfordshire’s unique festival

ran for a second time this

autumn with one session

focusing on the end of life

Living well with dementia means

different things to each of us

Page 5: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

5

issues facing people with

dementia. The room was

packed as Dr Jennifer Bute,

who is living with dementia,

spoke of what she wanted at

the end of her life.

She was accompanied by a

GP and a solicitor who both

gave their views, as well as by

John Killick who enables

people with dementia to

express themselves through

poetry. It raised so many issues

– and none were resolved – but

it was a valuable opportunity to

think about how best to support

people living with dementia at

the end of their lives.

The Nosebag café generously

donated the proceeds of the

week’s cake sales to YDUK.

Frontotemporal dementia (FTD)

FTD is a complex condition

which has a huge effect on

every aspect of daily life. It

has long been a frustration that

FTD is not covered by health

funding (Continuing Health

Care, CHC) as it isn’t regarded

as a complex health need.

Miranda, Peter’s wife is

spearheading a campaign to

get this reassessed. She has

gathered information and

stories from several other

people living with FTD in her

area to present to her MP and

to Baroness Sally Greengross.

The Baroness’s response was

very supportive, she said,

‘I agree that more needs to

be done to support people

with dementia, both with

regards to CHC and more

generally. The APPG (All-Party

Parliamentary Group) on

Dementia aims to hold the

Government to account for

the dementia services they

provide and to campaign for

more and better dementia

care … I will ... happily raise

the issue of CHC in the House

of Lords to get a response

from the Government.’ This is

good to hear and let’s hope

the Government’s response is

supportive too.

Keeping YOD on the agenda

Diane Garfield reports on a

YOD awareness event at the

House of Lords on p15.

Anna Eden

Support Services Manager

Page 6: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

6

Family Support

DESK courses Recently Emeline and I sat in

on a DESK course (Dementia

care: Essential Skills and

Knowledge). The free course

attracted a variety of people

including family, friends and

neighbours of people

diagnosed with dementia.

The three-hour sessions

covered a range of topics

including information about

different dementias and what

we know about the brain;

understanding behaviour,

improving communication and

exploring changing

relationships with someone

with dementia. We joined in

some exercises that gave real

insight into someone living with

dementia and how to help

them live well. Catherine, who

ran the course, has a wealth of

knowledge and experience

and both Emeline and I found

the course very useful.

There will be further courses

throughout 2015 at various

locations including Witney,

Kidlington and Didcot. For

more information email [email protected]

or phone Catherine Arakelian

on 07751 809271

Anna McNally

Family Service Support Worker

Carers’ Call to Action

Conference Emeline and Anna were also

the YDUK reps at the Carers’

Call to Action (CC2A)

Conference.

There was a wide range of

speakers, followed by a round

table exercise to create our

own services and present a

Dragons’ Den style pitch!

The CC2A supports the needs

and rights of family carers

living with someone with

dementia. They have created

five aims and a 20-point

checklist of what services and

support should be available. If

you would like to know more,

or want to sign up to CC2A, go

to the website www.dementiaaction.org.uk/

carers

Dementia Equity Toolkit Available soon - for every

health and social care

services commissioner - clear

information on inequality issues

within dementia, young onset

included. YDUK contributed so

watch this space for progress.

Page 7: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

7

Socials

band to get us all on our feet

in February.

As some of you know, I will be

leaving YDUK after February’s

Café. I have enjoyed running

these lively evenings and hope

you have enjoyed the events

we have put on. There’s still

lots to do before I go though!

Sean Hodgson

Café & Socials Coordinator

PS Here’s a sneak preview of

the musical entertainment

coming to the Café in the next

few months.

February - Square dancing

night with Cornucopia

March - Irish night with Mark

Chilvers

April - Rock ’n’ Roll with Elvis

May - The Shapes

June - Phil’s disco

For dates see the enclosed

Events flyer.

Many people come to the

Café every month and it is

always good to see new

faces. We celebrated in style

at our Christmas Party with

over 75 people coming to eat,

drink and dance. It was great

to see so many people

enjoying themselves!

The Café food has continued

to be a hit. In October I tried

the world’s easiest yet gooiest

sticky toffee pudding and

people are still begging me for

the recipe ... so I’ll see what I

can do.

Each month there are different

performers and recently, as

well as some favourites

returning, we enjoyed a new

act called Gilmour and Jaz, a

jazz-rock singer/guitarist duo.

They enjoyed performing for us

and would like to come again.

We already have a full

programme planned for 2015

including a square dancing

Page 8: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

8

Dr Louise Ritchie, Research Fellow at West Scotland University,

shares early findings from a study on dementia in the workplace.

Little is known about the experiences of people who develop

dementia whilst in employment. The University of the West Scotland

is currently working on a two-year UK-wide research project funded

by the Alzheimer’s Society to try to understand more about the

employment related experiences of people with dementia.

The research is ongoing, but we’d like to share five of the

emerging findings.

1 People with dementia CAN and DO continue to work

post-diagnosis

We were pleased to find that of our 13 case studies, 8 people

continued to work post-diagnosis. 2 A good support network is important

A strong support network was important to support continued

employment, providing information to enable the person with

dementia to continue work. 3 Dementia awareness is essential

In some cases, workplaces held dementia awareness sessions for

employees. Workplace representatives reported that it helped

them to understand dementia and how to support their colleague. 4 Employers need support as well

For all the employers interviewed, it was the first time that their

organisation had experience of an employee developing

dementia. They all wanted to do their best however, many felt

ill-prepared and unsure where to get further support. 5 In some jobs continued employment may not be possible

For some, continued employment was not possible. The majority of

these cases involved jobs where there could be an impact on the

health, safety or wellbeing of the person with dementia, the

workforce or the public.

Get in touch

To find out more, or to participate in the study, please get in touch

through the website or email [email protected]

(This was adapted from a blog posted on 6 November 2014 at

www.alzscot.org/talking_dementia)

Dementia in the

Workplace

Page 9: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

9

Turtle Song

In the autumn, Turtle Song brought together a group from YDUK

with music students from Oxford University, to write and

perform songs. They were led by Carolyn von Strumm and

Jon Petter. Over nine Friday mornings, music was played, songs

created and learnt with dance steps to go with them. It was highly

ambitious and hugely enjoyable. Twenty people were involved

and the final performance was a triumph. A DVD will be produced

for all those involved.

‘Give me the gentleness to overcome stigma

The sense of humour to avoid humiliation

The patience to master memory

And the diligence to energise apathy.

‘Finding our voice, making our choice to belong together,

Living our life with our heads held high!

Finding our song, moving along with our hearts together

Living our life with our heads held high!’

I think this could become the YDUK anthem!

A big thank you to all

involved and especially

Turtle Key Art, The Royal College of Music, English Touring Opera

and the music students. I know that so many people who were

part of it all were very sad at its end.

Anna Eden

Support Services Manager

Page 10: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

10

Fundraising News

What a way to finish the year!

Frilford Heath Golf Club has

raised a staggering £14,600 for

YDUK after choosing us as their

club charity of the year for

2014. Members, sponsors,

friends and neighbours took

part in golfing and social

events throughout the year,

including a coffee morning

held by Gwyneth and John

Goss which raised £2600 alone.

Special thanks go to club

captains Gordon Neilson and

Mo Seaward for all their hard

work and to everyone at

Frilford Heath for their support

and generosity.

Do you have links to a sports or

social club?

Could you put YDUK forward

as charity of the year at your

local sports club or gym? Or

do you have friends or family

that might put us forward at

theirs? The money that Frilford

Heath Golf Club has raised

could keep our Café running

for about two years; support

like theirs is invaluable. I would

love to hear from you.

helenlerwill@

youngdementiauk.org

What a year 2014 was for

YoungDementia UK. Our

fundraisers are a busy bunch –

cycling to Paris, baking cakes,

holding garden parties and

tennis tournaments … the list

goes on! A big thank you to

everyone who supported us

last year and also to all of the

Purple Angels for making the

year so special - more on them

in the next issue.

In fine voice to raise £700!

Blue skies greeted us for carol

singing in chilly Wallingford

where wonderful local choir,

Cat’s Chorus, kept us all in

tune (mostly)! Doug and

Graham did a fabulous job of

organising the event and

mobilising a superb army of

collectors. Meanwhile Anna

and her singers took a rather

warmer tack in East Oxford -

singing in pubs to bring the

regulars some Christmas spirit!

Hello, I’m Helen, Community

Fundraising Manager for YDUK

Page 11: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

11

Volunteer Profile Hi, my name is Lorraine and I

have been a YDUK volunteer

for over three years. I came

here from South Africa in 2002.

I worked in dementia homes in

Wales and Oxfordshire until I

retired in December 2013.

In October 2014, I married

Vaughan who is a Trustee of

YDUK. It was from Vaughan

that I first heard about YDUK

and volunteered to help.

Café nights are fun. The role of

volunteers ranges from

decorating the hall, setting

tables, preparing and serving

food, and - the highlight of

any evening - washing up!

It’s great to be part of YDUK,

and to meet you all at the

Café and other social events.

Lorraine Billings

Volunteer to raise funds As well as their paid work for

YDUK, our staff team often

volunteer both their time and

effort to raise funds or help

at events.

Jen raised £750 running the

Oxford Half Marathon, inspired

hugely by the people she

supports and those who lined

the route to cheer her on. She

has vowed to do it again next

year, even faster, but for now

wants to thank everyone who

sponsored her this year.

Meanwhile, Rachel and her

family ran the Brighton Colour

Run. Rachel says thoughts of

the people she supports

spurred her on but her boys,

Fin and Jacob, just

enjoyed running under the

arches of coloured

powder at every kilometre.

’It’s often called the

happiest 5k run on the

planet’ said Rachel, ‘and

we definitely think it is!’

Page 12: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

12

Team Member Profiles

Mark & Helen

I joined YDUK as the One to

One Service Coordinator in

September 2014. I work three

days a week and manage the

One to One support in Oxford

and the north of the county.

I have a mental health nursing

background and also worked

as a lecturer in further and

higher education, teaching

health and social care, before

joining YDUK.

When I’m not working for

YDUK, I’m usually writing

learning materials for a book

or course, playing football for

West Oxford dads, making

bread for a local deli or trying

to persuade my children that

it really is bedtime!

Mark Walsh

One to One Service

Coordinator

Soon after I first saw the advert

for Community Fundraising

Manager, I read a piece in our

village newsletter about how

YoungDementia UK supports a

local family. I thought then

‘I would love to work for a

charity like that’.

I’m based near Chipping

Norton and have two small

children who don’t really

understand what fundraising is,

or why I appear now and then

with bags full of money. I’m

just waiting for them to tell

their friends that Mummy’s

a burglar!

I love to get outdoors with the

family as much as possible –

walking, cycling or camping

and I can’t resist the odd

music festival or two over the

summer months.

Helen Lerwill

Community Fundraising

Manager

Page 13: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

13

YDUK Like Minds

13

YDUK Like Minds Groups Like Minds groups give people

with young onset dementia an

opportunity to meet informally,

make friends and offer each

other support.

Our Like Minds groups are

funded by The Dementia

Engagement & Empowerment

Project (DEEP). This project

aims to give people living with

dementia across the UK

opportunities to put forward

their suggestions for service

developments and activities,

or to contribute to other topics

of interest.

Our groups meet once a

month for coffee, chat and

friendship in Oxford, Abingdon

and Banbury. Sometimes we

have special events or visitors.

A new group is planned for

Witney in 2015 - if you’re

interested contact Mark Walsh

for details.

Dementia Alliance International DAI is a non-profit group of people with

dementia from the UK, USA, Canada,

Australia, Germany and other countries

that seek to represent, support, and

educate others living with the condition.

DAI members facilitate and provide online

support groups for people with dementia

through Facebook and Zoom (online video conferencing). For

more information, visit the DAI website where you can become a

member, sign up for their newsletter and get updates on

forthcoming online webinars, Memory Cafés and more. http://www.dementiaallianceinternational.org/

Page 14: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

14

National YOD Network

Launched

Making it happen – the

National Young Onset

Dementia Network London, close to Big Ben: 17

passionate individuals decided

the time was right to bring this

Network into being. In fact,

time was pressing and change

urgently required. Individuals

like Keith, Rosemary, Sandy

and Richard live every day

with the impact of young

dementia. They are willing to

spend their precious time

contributing to the Network

steering group. They will keep

us connected with their reality,

where there is no clocking off

at 5.00pm.

The point is to improve the lives

of people living with YOD.

We’ll harness passion, energy,

experience and knowledge

to ensure we do just that.

Effective connections with

people with personal and

professional experience of

YOD will be forged. And we

will use these connections to

break down the barriers to

living fully.

People describe bleak

situations where there is little

or no support. We want good

information and support for

everyone with young onset

dementia and their families

regardless of where they live

across the UK.

In the words of Chris, living with

YOD, ‘we want a brighter

future’.

More details soon.

Tessa Gutteridge

Director

Some members of the National YOD Network Steering Group

Page 15: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

15

groups at UCL (Myrtle Ellis Fund

and Frontotemporal

Dementia Support Group)

that provide support for

younger people diagnosed

with dementia.

Diane Garfield

Founding member

Myrtle Ellis Fund

Memoria In November, Re-live

presented a powerful

theatre production entitled

‘Memoria’ exploring the com-

plexities of life with dementia.

People living with a dementia

diagnosis, family members and

professional carers shared their

stories with a live and online

audience. Karen, diagnosed

with Alzheimer’s at 51, said,

‘For younger people you’re

told you can’t work. There’s

nothing. Here, I’ve made new

friends and my voice is heard.’

http://www.re-live.org.uk/

House of Lords Tea On 9 December, Baroness Sally

Greengross hosted afternoon

tea in the House of Lords to

raise awareness of YOD

amongst politicians and

representatives from various

medical and social care

spheres including opticians,

occupational therapists, nurses

and social workers.

Speakers focused on the

problems such as getting a

diagnosis, day-to-day living,

and the tough decisions that

must be taken along the way.

People with YOD face a lack

of provision tailored to their

specific needs. Financial

support is a minefield of

extensive form-filling for review

by social care professionals

who do not understand the

challenges being faced and

therefore refuse access to the

appropriate levels of support.

It is hoped that policymakers

will use the materials shared at

the event to inform their work,

raising awareness and

ultimately allowing people with

dementia and their families to

choose their preferred caring

environment - whether it’s at

home with reliable and

consistent care-workers or in

care homes catering for YOD.

The event was organised by

the charitably funded support

Baroness Greengross and guests

Page 16: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

16

YDUK Homes

YoungDementia UK Homes is

now working with the Rushy

Bank Partnership to seek

planning permission for a

mixed-housing development

which will include our

pioneering supported living

facility off the Burford Road

in Charlbury.

The development will provide

30 homes as well as Homes’

blueprint facility for people with

young onset dementia.

Homes’ decision to become

part of the Rushy Bank project

follows concerns raised about

our previous choice of site west

of the cricket club. We took

these concerns very seriously

and, though we felt they could

be mitigated, we decided it

was worth taking advantage

of this new opportunity to

place our development within

a lively community-focussed

housing scheme.

Architectural plans for the

Homes’ facility have been

slightly reconfigured to fit our

allocated area of the site, but

the overall space and size of

rooms has not changed.

The Rushy Bank Partnership has

consulted local residents about

the plans and Frequently Asked

Questions are available on the

YDUK Homes website.

The application will be

submitted to West Oxfordshire

County Council by the end of

January 2015, with a decision

expected before Easter.

Jane Norman

Director, YDUKH

Cwmgelli Lodge - a real alternative

to an older person’s care home

Cwmgelli Lodge is a flagship development for younger people with

dementia, located in the Cwmgelli area of Blackwood, Caerphilly.

The Seren Group, working in consultation with the Alzheimer’s

Society, meets regularly with their review panel of younger people

with dementia. The panel have already influenced the design, name

and colour schemes at Cwmgelli Lodge, which is expected to open

in summer 2015. For further information contact

[email protected]

Page 17: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

17

Books - on prescription

The Reading Agency, along

with the Society of Chief

Librarians, has been looking at

services and activities public

libraries provide for people

with dementia and their

carers. Their work has led to

the Public Library Dementia

Offer and the national launch

of the ‘Reading Well Books on

Prescription for dementia’

scheme at the end of January.

With help from dementia

healthcare experts, people

with dementia and carer

groups, 25 books have been

selected that provide support

and advice for people with

dementia and their carers.

Health professionals will be

able to prescribe books from

the list for patients and the

titles will be available free to

borrow from public libraries. For

more information go to http://

readingagency.org.uk/ adults/

news/reading-well-bookson-

prescription-

dementiascheme.html

One not to miss! ‘Welcome to Our World’ is not

just another book about

dementia, it is really quite

unique. The eight contributors

have one thing in common.

They all have a dementia

diagnosis - the majority young

onset. However, there the

similarity

ends as

their lives

have all

been so

different.

‘I had to write clearly and

succinctly. I so enjoyed the

experience and hearing other

people’s stories. We hope, in

reading the book, you will

derive as much satisfaction as

we did writing it’.

‘I wasn't sure writing would be

my thing, but after the first day

I was hooked. I enjoyed …

other people’s stories and

writing my own’.

‘When I wrote my introduction

the book was unfinished, no

wonderful piece from Jo

Brand, and the writers were all

busy on their contributions,

superbly supported by their

student buddy. But I just knew

that we had something

special. When I held the

finished book I was proved

absolutely right’.

Keith Oliver, Chris Norris,

Chris Ryan - authors with

young onset dementia

Welcome to Our World costs

£5 from Waterstones or can be

bought via the Alzheimer’s

Society online shop.

Page 18: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

18

Research Request

Sheffield University

research project:

children and young

people who have a

parent with dementia

About 10 years ago, when my

children were 15 and 13, their

father began to behave oddly.

Over six months or so we

noticed changes in personality

and behaviour, and, after a

lengthy and convoluted

process, young onset

dementia was diagnosed.

Experiencing and observing

how my children lived with and

tried to make sense of their

dad’s behaviours led me to

propose this research project,

entitled ‘The perceptions and

experiences of children and

young people who have a

parent with dementia’.

We are asking children and

young people from 7 to 25 to

tell us their stories of living with

a parent with dementia. Our

aim is to produce a variety of

resources to help other

youngsters in this situation.

If you, or someone you know,

might be interested in taking

part please email me,

[email protected]

Pat Sikes, University of Sheffield

Roger’s Walk & Talks People with dementia don't

have a big 'D' on their

foreheads so when you go on

a Walk & Talk, you don't know

who is who, which I really like.

There's no stress. It’s not formal

or over-organised and as you

walk along you quite naturally

start to chat with whoever is

next to you. You may end up

in a really serious discussion or

you can just chat about the

weather or the countryside.

The walks are long enough to

enable you to talk to different

people or to walk on your own

if you want some peace. I've

been with and without my

husband, who

has dementia,

and enjoyed

both times.

Roger, the

organiser of our

walks is lovely -

so a big hurrah

to him for

organising them!

Madeleine Stewart

Page 19: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

19

And finally ...

19

Wheels for All Following on from Nick and June’s story in the summer

issue, Mark Walsh is looking for people who would be

interested in joining him at Wheels for All Oxfordshire

which provides inclusive cycling opportunities. By using

specially adapted cycles and trained leaders, the activities are both

physically and mentally stimulating and most importantly, fun for everyone

involved! Participants can try out a wide range of bikes, build their

confidence, socialise and have fun! If you are interested, please contact

Mark at [email protected] or find out more about

Wheels for All at www.oxfordshiresport.org/wheelsforall

Need a holiday? Fancy a touring break? Dementia Adventure tell us

they have just the opportunity for you.

‘Jesse Reed and our luxury VW Caravelle are at

your disposal. Your next adventure starts here!

Whether it’s a week in the Cotswolds or a city break

in Dublin, we can tailor a trip that works for you’.

The open road awaits! For more details go to the

Dementia Adventure website.

Moving Music Concerts Jacqueline du Pré Building, St Hilda’s College, Oxford, OX4 1DX

Tuesday 10 February 2015

11.30-12.30 (refreshments from 11.00am)

Radley College Musicians

2.00-3.00 (refreshments from 1.30pm)

Magdalen College School musicians & Christine Cairns leading songs

People living with dementia and their family, friends & carers welcome

Entry £5 inc refreshments - carers free

Contact 01865 286660/251305 to reserve places & disabled parking

Page 20: Newsletter - YoungDementia UK Jan … · Newsletter Spring 2011January 2015 ‘People with dementia don’t have a big ‘D’ on their foreheads … you don’t know who is who

Contact us

YoungDementia UK PO Box 315 Witney OX28 1ZN

[email protected] www.youngdementiauk.org

Registered Office 7 Mount Pleasant Crawley Road Witney OX28 1JE

YoungDementia UK Company No 4142850 Charity No 1085595

Could we send your newsletters electronically? It saves us money so if

you’re happy to receive future editions by email, or if you want to be

removed from our mailing list altogether, please email

[email protected]

Fundraising

Community

Helen Lerwill

07479 940847

Trusts & Grants

Alex Taylor

01844 216926

Events

Anna Eden

01865 794311

Newsletter

Sharman Oldham

01865 390842

Director

Tessa Gutteridge

01993 776295

Finance

Karen Warner

01865 861907

Admin

Joan Dutton

01235 531973

Communications

Kate Fallows

07748 304207

Support Services

Manager

Anna Eden

01865 794311

One to One Service

Mandy Blair

01235 819230

Mark Walsh

01865 246241

Family Service

Emeline Keown

01865 747698

Anna McNally

01865 7615480

There are lots of ways to contact us - via email, Facebook, or Twitter, or of

course you can get in touch by phone or post.

To email any member of the YDUK team listed below, please use the

following format [email protected]

Contact phone numbers for some of the team are below and the postal

address of the registered office is at the bottom of the page.

Next Newsletter - copy deadline for the next edition of the newsletter is

Tuesday 21 April. Please send items for publication to Sharman Oldham or

pass on via any member of the YDUK team. We’d love to hear from you.