Changing Times 2020 - youngdementiauk.org€¦ · Changing the present, changing the future ‘...
Transcript of Changing Times 2020 - youngdementiauk.org€¦ · Changing the present, changing the future ‘...
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
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 [email protected]
‘ 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