Changing Times 2020

Changing Times 2020

Changing the present, changing the future

‘

Here we are in 2020 and yet many of the 42,500

people with young onset dementia do not have

what they need and want to adapt and live their

lives. We, at YoungDementia UK, are determined

to change that now and in the future.

Together with Jacqui and others living with young

onset dementia, we are working to -

• Challenge inequality by improving access to

support from diagnosis onwards

• Challenge ignorance by improving

understanding with specialist information

and advice

• Challenge isolation by improving opportunities

to connect with others

In the past year So how do we do this? We have made good progress

with our Young Dementia Network collaboration which

advocates for better dedicated services through

policy and practice changes.

We have continued meeting needs directly through

sharing information and advice, personal experiences

and expertise via our digital channels, and through our

Young Dementia Oxfordshire service. Though we are

national in aspiration, this direct support connects us to

the reality of life with young onset dementia which

informs our Network and digital activity.

Charity changes We have had a year of fluctuating fortunes.

Mid-year resource challenges brought forward a

planned review of our work. This enabled a sharper

focus that we believe will achieve most impact for

people affected by young onset dementia.

We reduced our costs and restructured our team.

It was sad to lose valued team members and

volunteers, but pleasing that other charities welcomed

our wonderful Oxfordshire Supper Club and Sheffield

pilot group. A successful fundraising appeal closed the

year giving us a stable base from which to reset.

I received my dementia diagnosis the hard

way. It was a complete contrast to my breast

cancer diagnosis. The care and support

couldn’t have been more different.

I had regular check-ups and was given

information at every stage of my treatment.

I had a Macmillan nurse for aftercare, but with

my dementia diagnosis, it was the opposite.

Jacqui, diagnosed with young onset

dementia aged 49

I was extremely lucky to have had a YoungDementia UK advisor from

the very start of my husband Kirk’s diagnosis. She was so informative,

answering every question and giving invaluable advice. She was a

lifeline and with her support I became a stronger person.

It made me think how privileged I was to have had that essential help

and advice - to not have that support must feel like being on a boat

that’s sinking. I strongly believe that everyone across the country

experiencing young onset dementia should have access to help.

Jan, family member

‘

Looking ahead And for the future, we continue to be guided by

the expert voice of people living with young onset

dementia. Our clear focus will be developing our

influence, and thereby the influence of people with

young onset, through the Young Dementia Network.

We will further strengthen our provision of digital

website support and our Young Onset Dementia

Advice service.

And over the next year, whilst we consolidate our

new structure, we want to understand our progress

in delivering our mission to pursue improved service

provision for younger people with dementia and

their families in the UK.

COVID-19 is with us, affecting individuals,

communities and the health and social care system.

There is a greater need than ever for our services.

We have been able to swiftly adapt by offering

information and advice to individuals and groups

through digital channels.

Our fundraising, as with the wider charity sector, has

suffered with the cancellation of events and the

redirection of trust funds to crisis responses. We will

monitor this carefully and factor it into our plans.

2020-2021 will have its difficulties. We will approach

every choice and challenge with our goal that

everyone affected by young onset dementia has

access to specialist support to adapt and live life by

2025 at the forefront. As always, we will keep the views

and experiences of people with young onset

dementia at the heart of our decisions.

There is a real risk with the effects of the pandemic

that the needs of those with young onset dementia

are neglected. YoungDementia UK will be working

hard, together with our

highly valued collaborators

within the Young Dementia

Network, to make sure

this does not happen.

Amanda Stratford, Chair

Tessa Gutteridge, Director

Changing services by working collaboratively

Why did we set up the Young Dementia Network?

Young onset dementia, mostly 30-65 years, is

progressive, incurable and life-changing for the

person and their family. Dementia changes

thinking, behaviour, memory – in the end it

changes everything. People with young onset

are scattered across urban and rural localities,

from all walks of life and are seldom a priority,

yet are difficult for professionals to support.

Awareness amongst the public and healthcare

professionals is relatively low. Dementias that affect

younger people are more likely to be rare, complex

and result in different needs. 

This lack of awareness and recognition together with

under- or misdiagnosis and under-reporting has led to

unacceptably low levels of good specialist services.

Diagnosis can be bewildering, taking on average 4.4

years, double that of dementia in older age. People

are left to navigate confusing systems that are not

designed for them and face a postcode lottery as to

whether specialist support is available.  It usually is not.

Recent evidence from The Angela Project, the largest

study of young onset dementia in the UK, is now

available for the Young Dementia Network to utilise to

improve diagnosis and post-diagnostic support.

YoungDementia UK was pleased to be on the project

steering group and promoted involvement of Network

members – research is vital.

The study was dedicated to Angela who was

diagnosed with dementia at 51 years of age.

She had symptoms for three years before getting a

confirmed diagnosis.

Many people experience diagnostic delays like

Angela. Many of the estimated 5,000 people

diagnosed each year feel abandoned and alone.

Many people experience inadequate post-diagnostic

support like Jacqui.

The Angela Project research found that between

42% and 60% of people received no follow up in the

first six weeks after diagnosis. Only 20% had ongoing

care management from young onset specialists.

Young Dementia Network membership

Young people living with dementia - 11%

Family members / friends - 30%

Professionals - 59%

Total 2909 members

at end of March 2019

This is what we want to change! And why we are

dedicating more effort to leading the 3000 member

strong Young Dementia Network. The Network

advocates for the needs of those with young onset

and gives a platform for people living and working

with young onset dementia in the UK.

The Network’s policy, practice and service

improvement work is at a high-level and will take time

to achieve. Meanwhile, this work is enhanced by the

creation of young onset dementia resources to boost

the knowledge of professionals and the public.

The Network was pivotal to the inclusion of young

onset within the government’s Dementia Challenge

2020 which should continue into the 2025 plan.

This past year has seen the Young Dementia Network,

through Peter, leading on those actions and agreeing

our aims that by 2025, all people with young onset

dementia wherever they live -

• are able to access timely, compassionate and

accurate diagnosis within a service which meets

their needs

• are coded accurately according to the specific

diagnosis to provide more accurate prevalence

data for service development

• are able to access support that meets their

evolving needs and is sensitively delivered by

trained staff.

Future plans

We plan to grow the Network membership to 3500

this next year and continue identifying effective ways

to involve members. Together we will pursue our

high-level policy changes and monitor the impact of

the post-COVID-19 world to ensure that young onset

dementia needs and wants are not neglected.

Network member Peter’s story It seems a long time now since the day I realised

my wife had vascular dementia. She was 59 at

the time. I couldn’t believe there was no support

for people of our age; I found being a 24-hour

carer very stressful and struggled to cope.

Eventually my wife went to live in a nursing home and

as a form of therapy as much as anything else, I got

involved with the fight to improve carers rights, and

services for younger people with dementia.

I became involved with a number of dementia

charities and I sit on the government’s Dementia

Programme Board. I am also really pleased to be on

the Young Dementia Network steering group.

The Network is particularly important. From practical

guides for GPs, to starting to bring about real change

within NHS systems, we are having a positive impact

on previously

under-recognised

young onset

dementia support

and services.

Over the years,

because of

dementia, I have

met so many

wonderful people who are doing their very best to

improve lives in often appalling circumstances.

I believe my life has improved significantly as a result.

So sad that it’s only come about through the loss of

such a lovely person.

Read Peter’s story in full on our website

www.youngdementiauk.org/peter-w-story

Creating change through better information and resources

Through the Young Dementia Network, we have

created a portfolio of resources which we added

to this year and are planning new ones too,

based on The Angela Project evidence. People

living with young onset dementia need change

now and these resources help inform, advise

and improve awareness.

For younger people and family members, this

year, following a successful pilot, we launched the

young onset dementia ID cards. Designed in

collaboration with Network members, they are

intended to be a convenient and discrete way of

storing personal information and asking for help

if needed.

We have been told that they are, ‘simple and clear’

and give the user confidence knowing it’s there if

needed. One card is intended for a person living with

young onset, the other for family members and

supporters to use when out and about. In the couple

of months after launch, over 2300 cards have been

mailed out.

The Personal Checklist, initiated by a Network member

to aid conversation when attending an appointment

with a GP, enables individuals to record symptoms

they, or a family member or friend, may be

experiencing. Alzheimer’s Research UK, Dementia UK

and YoungDementia UK have endorsed the checklist

and it has been downloaded from our website 6300

times in the last year.

For health professionals, we created young onset

dementia guidance primarily for non-specialist

dementia support workers and advisors. One survey

respondent told us, ‘It's flexible, provides links to

resources, prioritises and considers the unique

differences from the impact of a young onset

dementia diagnosis.’

Another said, ‘I provide post-diagnostic support

and feel the guidance provides all the information

compiled in one place. It is practical and very useful.’

In the past few months, the guidance has been

downloaded from our website over 300 times.

‘ I truly believe that these cards will

make a massive difference to our

lives and am so pleased that you

have decided to roll them out.

Mrs Ansell, Canterbury

‘ This is a highly neglected area of

research. As a minority group of

people, we represent a different,

yet valid set of circumstances

from others which can add to

the knowledge around the lived

experience of dementia.

Julie Hayden, The Angela Project

research participant

Future plans The Network will collaborate with The Angela Project

in developing and promoting more new resources

based on their findings.

Included are A Living Care Plan for the younger

person with dementia and family and guidance in

its use, a clinic service self-audit tool based on what

matters most to the person and their family during

diagnosis, and Guidance for Commissioners on

setting up a young onset service.

For Commissioners, Service Developers and

Providers, in collaboration with The Angela Project

team, we published the Good Practice in Young

Onset Dementia.

This research study gathered views from professionals

and over 230 people living with, or caring for, someone

with young onset dementia. Large-scale evidence for

what works in young onset has previously been scarce

which makes their research findings so important.

We are thankful for the excellent co-operation and

goodwill of the Network steering group. Greater than

the sum of its parts, the collaboration contributes hugely

to our goal of enabling everyone affected by young

onset dementia to have access to specialist support.

We are also grateful to The Angela Project team whose

hard work and commitment has shone a light on the

inequalities faced by younger people living with dementia.

Find out more or join the Network www.youngdementiauk.uk/

young-dementia-network

Download Network resources www.youngdementiauk.org/

young-dementia-network-resources

Changing through expertise in young onset dementia

The past year has been a time of change for the

charity following the restructure of our team and

reduction in our one to one support offering in

Oxfordshire. Then from nowhere COVID-19

appeared in our lives, creating a challenging

time for us all.

Our Young Dementia Oxfordshire advisors support

people affected by young onset and their family

members in the county. This is usually via face to face

support sessions, peer support groups held in local

community venues, telephone and email; plus our

website, newsletters and social media platforms

provide freely accessible, young onset specific news,

information and resources that are available to all.

Creating a virtual service

Their vital work helps reduce the social isolation people

affected by young onset dementia face. When the

coronavirus crisis escalated, it became clear that face

to face support and groups were no longer possible.

We moved swiftly to change the way our support was

delivered, adapting to using video conferencing in

order to continue our regular group support.

Attendance at these virtual get togethers quickly grew

and our programme of group support was expanded.

Whilst online groups do not work for everyone,

interestingly, we have found it has enabled some

members to take part who normally are unable to

attend face to face groups due to issues around work,

transport and care. The experience has been very

positive overall and will inform how we look to deliver

support in the future.

Adapt provides early stage support Throughout the last year, we expanded our early stage

support delivered via our Adapt programme. It offers

one to one support enabling the individual to discuss

their diagnosis, work through how to tell others

including their employer and access information

sessions which are co-facilitated by members.

Feedback from these sessions told us 88% of attendees

felt better supported and 75% felt better informed and

connected. Participant Alan Alston said, ‘It's one of the

most helpful things that I been involved in.’

We also launched a series of Adapt films designed to

educate and inform, featuring people affected by

young onset dementia sharing their experiences.

These meetings are my saving grace

and I can recharge my batteries.

It was a real tonic to hear everyone,

it has made me more positive.

It gives us a connection with everybody

which is so important to keep.

Young Dementia Oxfordshire group members

share their thoughts on our virtual groups

‘ ‘ ‘

Clive’s story Champion kickboxer Clive received his diagnosis

of young onset Alzheimer’s disease in January

2019, aged 62. Initially he did not want to face

the reality of his diagnosis but by May 2019 was

struggling to cope with independent living.

It was at this point that Liz (pictured) from

YoungDementia UK started to support him.

Over the next few months, Liz built up a relationship

with Clive and he gradually felt able to trust her to

help. He says, ‘Liz made me feel more relaxed and I

knew that when she visited, she would help me sort

out all the things that worried me.’

In collaboration with his family, social services and with

our support, Clive now receives monthly PIP payments

and is able to manage his money and bills more

consistently. He has moved into extra care housing,

where he feels safe and knows help is on hand.

Due to the COVID-19 situation, Liz is not able to visit

Clive for now, but they keeps in touch regularly.

Clive says, ‘I now feel so much better. I feel more

confident and am enjoying life. If it wasn’t for

YoungDementia UK and the support from Liz I

wouldn’t be here now.

‘I would like people who are going through the

same thing to reach out, as you need people

behind you. I didn’t realise until I had support just

how hard it was for me.’

Positive Activists Consultants & Educators (PACE)

Our PACE group for people living with young onset

has taken part in research projects and some members

have become regular presenters on external training

programmes, receiving wonderful feedback.

One student nurse said after a presentation at Brookes

university, ’Thank you for sharing your story with us.

You have really opened my eyes and allowed me to

understand young onset dementia. It was very insightful

and valuable to learn how a diagnosis and the

condition can impact a person and their family’s lives.’

And finally, the collaborative music workshop project

Turtle Song, run by Turtle Key Arts, has become a

regular feature in our calendar. It is always a

resounding success with our musical members.

Future plans Our plans for the coming year include an exciting

service signposting project. We currently list over 200

young onset groups and services in the Find Support

section of our website. We will be undertaking a

collaborative piece of research work to create a

fuller picture of dedicated young onset groups and

services across England.

We will then redevelop the support section of our

website which will enable younger people living with

dementia, their family members and professionals to

find vital support services more easily, such as Young

Dementia Oxfordshire, which in the last year alone

provided support to over 325 people in the county.

Read Clive’s story in full on our website www.youngdementiauk.org/clives-story

How you have helped us change lives for the better

We are leaving a gift in our Will

to YoungDementia UK because we

want our money to go to improving

the quality of life for both people

living with dementia and those caring

for them, especially when it strikes at

such a young age.

David and Mandy Nixon

‘

For more information about how you can

donate or raise funds for YoungDementia UK

fundraising@youngdementiauk.org

www.youngdementiauk.org/get-involved

YoungDementia UK provides

a much needed service.

I wanted to raise more

awareness and support for

this charity and felt the best

way I could achieve this was

via fundraising.

Kenny Hope

‘ In the past year, we have been

amazed by the vast range of

fundraising activities and events

individuals and groups have taken

part in. Below are just some of the

incredible things people have

done to raise crucial funds for

YoungDementia UK.

Peter Berry who is living with young

onset dementia nominated us for

the Adnams Southwold Pennies

scheme, raising a whopping £10,700.

Kenny Hope, who is also living with

young onset dementia, set himself

an incredible physical challenge and

climbed Mount Kilimanjaro, raising over

£6,200 in the process.

The daredevil challenges continued with

Latisha Davey, Anna Harrison, Helen

McCready and Rachel Niblock all taking

part in skydives. Whilst 16-year-old Youssef

O’Sullivan bravely did a 300ft bungee

jump, cheered on by his dad, Des, who is

living with young onset dementia.

Not to be outdone, and continuing the

sporting theme, Des’s friend Tim Falla ran

the Edinburgh marathon for us; 12 year old

Martha Danks took part in the Great North

Swim; Jason Bufton and his footballing

friends held their 4th Burford annual charity

match; a team from Wrigleys Solicitors LLP

took part in the Yorkshire Marathon

Corporate Relay 2019 and Sarah Oakley

and friends walked an incredible five million

steps in September to raise money for us.

Other notable walkers were Anne Bajorek

and family who climbed the Yorkshire

Three Peaks and the 31

wonderful people who took

part in our Walk For… event

at Blenheim Palace raising

over £5,600.

Fundraisers ran quizzes,

fashion shows, cake sales

and bowling events and

others raised money for us

in lieu of wedding and

birthday presents or kindly

chose us for donations in

memory of a loved one.

We could not continue our vital

work in these difficult times without

your generous support. Thank you.

Detailed accounts for 2019-2020 are

available on our website

www.youngdementiauk.org/our-publications

Income £532,996

Trusts & foundations - 42% Community & other fundraising - 30%

NHS & social services contracts - 16% Members - 10%

Others - 2%

Expenditure £472,722

Staff, service development & service activities - 65.5%

Cost of raising funds - 28% Admin / e-office - 6%

Governance - 0.5%

Thanks to

Shape History

for creating an alternative Christmas

advert for us and for managing our

successful Christmas appeal.

Special thanks to the following organisations

and individuals for their significant contributions

Adnams Southwold

Bartlett Taylor Charitable Trust

Blake Morgan Solicitors

Blenheim Palace - Charity and Community Bursary

Bouttell Bequest

Childwick Trust

Doris Field Charitable Trust

Eleanor Rathbone Charitable Trust

Forte Charitable Trust

Gerald Palmer Eling Trust Company

Greys Court Trust

Hazel and Leslie Peskin Charitable Trust

Helianthus Charitable Trust

Invesco Cares Foundation

John and Susan Bowers Fund

John Ellerman Foundation

Lunaria Trust

McLay Dementia Trust

Michael and Anna Wix Charitable Trust

Mr and Mrs J A Pye's Charitable Settlement

National Lottery Awards for All

Pharsalia Charitable Trust

Rayne Foundation

Roger Stammers

RS Brownless Charitable Trust

Shanly Foundation

Sir Jules Thorn Charitable Trust

St Michael’s and All Saints’ Charity

Stanton Ballard Charitable Trust

Tesco Bags of Help

Tudor Trust

West London Synagogue Charitable Fund

Woodroffe Benton Foundation

For a full list of our supporters go to www.youngdementiauk.org/our-supporters

These figures show our total income and

expenditure for the last financial year, but the

totals mask the hard decisions that were taken

in October 2019 and the changes that were

made in the last quarter which will be better

reflected in our next year’s financial accounts.

Following the decision to scale back our operation

and refocus our efforts in a more cost effective way,

whilst continuing to focus on the needs of the

people we support, we have significantly reduced

our costs and attracted several one off donations

to assist in our reset.

Halving our cost base has meant that we have been

able to weather the initial challenges of COVID-19,

but even with a new reduced income target, the

times ahead will remain extremely challenging as

all our income sources are threatened at the same

time as demand for our support has increased.

www.youngdementiauk.org

Company No 4142850 Charity No 1085595

YoungDementia UK

PO Box 315 Witney Oxfordshire OX28 1ZN

Tel 01993 776295 mail@youngdementiauk.org

‘ My friends and I have been

working for years to get

dementia on the agenda

and addressed in a

meaningful and

compassionate way.

I fear we will again

disappear and be left to our

own devices as the virus

sweeps us either under the

carpet or under ground.

We are determined not to let George and his

friends down.

With your support, and our commitment, we will

strive to keep young onset dementia and the

need for specialist support firmly on the agenda.

YoungDementia UK team

George Rook lives with young onset dementia

and is a Young Dementia Network member

Front cover photograph - Des O’Sullivan, diagnosed with young onset dementia age 60 and his son, Youssef