We extend our thanks to all,
and further gratitude to the Alzheimer’s Society for their 2021 Local
Dementia Profile report which has provided us with critical
information about people living with Dementia in the City, and much
of their research is referenced throughout this
Strategy.
Pivotal to making this
Strategy work, will be the delivery of its Action Plan. It is our
aspiration that on reading the action plan, those people who
offered us vital feedback about our services currently will hear
their voice, and will see our ambition to respond.
|
Jamaila Hussain,
Dementia Lead,
Corporate Director of Adult Social Care and Integration,
City of York Council
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Denise Nightingale,
Director of Mental Health Transformation, and complex care
Vale of York CCG
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Contents
About the strategy
Our Vision
National Context
Local context
Demographics
Age Friendly, Dementia
Friendly City
The Dementia Pathway in
York
Preventing Well: The risk of dementia is minimised
Living Well: I can live normally in a safe and accepting community,
with post diagnostic support available
when I need it
Diagnosing Well: timely,
accurate diagnosis, care plan and review within the first
year
Supporting Well:
Safe high-quality
health & social care for people with dementia and
carers
Dying Well:
To die with
dignity in the place of your choosing
1.
About the Strategy
This is a Dementia Strategy
for the City of York, and a priority of the
York Health and Well Being Board. Its intended audience is the
citizens of York, people leading local health and social care
organisations and the health and care workforce, and community,
voluntary and social enterprise organisations – in short
everyone involved in the experience of both drawing on and offering
support for people with dementia.
We recognise that the
participation and contribution from people with dementia and their
families and carers is vital in designing and improving dementia
care and support. The York Dementia Collaborative has had a key
role in ensuring voices are heard, and through their knowledge and
experience, they will continue to actively influence service
development and provision, particularly highlighting gaps in
services which lead to poor outcomes for people.
There are different levels of
accountability for the Strategy’s delivery, but it provides
the framework within which local services can deliver quality
joined-up improvements to dementia services, address health
inequalities, and realise a shared vision for dementia support in
York.
The strategy has been
developed through collaboration between City of York Council, the
Dementia Collaborative, Healthwatch York, local community and
voluntary providers, our local NHS Mental Health service provider
(Tees Esk and Wear Valleys Trust), the Vale of York Clinical
Commissioning Group, and York Teaching Hospital. Through face to
face conversations, online surveys and focus groups with people who
have experience of living with dementia in York, and with those
staff and organisations who have learned experience of the
opportunities and challenges this creates, we have been able to
better understand how York can become a better place to live, with
better quality services for people with dementia and their
carers.
This strategy is a
living document, which we hope will make a real and positive impact
for people in the City. It is complimented by a detailed Delivery
Plan, which considers the tasks required to reach our ambitions. As
the Delivery Plan is a working document, it is available for anyone
to see on request.
Our
Vision
Our vision is to make sure that
people with dementia, their families and carers, are supported to
live life to their full potential. We want the people of York to be
able to say:
·
I live in a dementia
friendly community
·
I know who/where to
turn to for information, advice and support
·
I know I have access to a timely
and accurate diagnosis, delivered in an appropriate
way
·
I can live a life of
my own
·
I have access to the
right support that enables me to live well at home for as long as
possible
·
My voice is heard
and makes a difference
·
I know that when the
time comes, I can die with dignity, in the place of my
choice
National Context
An estimated
675,000 people in England have dementia, the majority of whom are
over 65 and
have underlying
health conditions. They are supported by a
similar number of carers, many of whom are older people themselves.
It is estimated that a quarter of people in acute hospitals and
three quarters of the residents of care homes have dementia;
yet 200,000
people with moderate and severe dementia do not get any kind of
funded or professional support (Health and Social Care
Committee’s 7th report
2021-22). The number of people living
with dementia in the UK is set to rise to 1.6 million by
2040.
Dementia is not a
natural part of growing old and, although dementia is more common
in people over the age of 65, the condition can also be found in
younger people. When a person develops dementia before the age of
65, this is known as ‘young-onset dementia.’
As the number of
people living with dementia, and the complexity of their situation
steadily increases, the government and NHS England have pledged to
make improvements to dementia care a key priority. The scale and
the need to prevent, diagnose, support, live and die well with
dementia will only become greater (Alzheimer’s Society,
2021).
The NHS Five Year Forward
View and
the
Prime
Minister’s challenge on Dementia 2020 set out a clear rationale
for providing a consistent standard of support for people with
dementia and their family and carers. The
Well Pathway for
Dementia has five elements based on the
themes outlined in the Prime Minister’s Challenge - they
reflect the breadth of the experience of people with dementia,
their families, and carers, from prevention to end of life
care.
Ageing well and
caring for people with dementia are both key priorities in
The NHS Long Term
Plan. The Plan focuses on the need
for people to be helped to stay well and to have control over their
support, using tools such as personal health budgets and assistive
technology. It also calls for a transformed workforce with a more
varied and richer skill mix, integration between health and
social care, and the expansion of service models such as
Anticipatory Care (advanced care planning), Enhanced Health in Care
Homes, and Urgent Community Response Teams. The aim of these
initiatives is to ensure that everyone receives the right care, in
the right place, at the right time.
Local Context
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1 in 20 people over 60, & 1 in 5 people
over 80 has a form of Dementia
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Of those 2,812, only 1,554 people have received a
diagnosis
The dementia diagnosis rate for York is 53.2% - the average
for England is 61.7%
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It is estimated that 2/3 of people with dementia in York are
living in the community, whilst 1/3 are living in care
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The value of dementia support provided by unpaid carers in York
is £71.3m
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Age Friendly, Dementia Friendly
City
We recognise that it is
important to support people living with dementia to live the life
they choose and to feel included in the community. Through the
dementia-friendly communities programme, organisations in
York have agreed to try to make the city ‘dementia
friendly’, making it a good place to live for people with
dementia and their carers. York’s Dementia Friendly
Communities programme is working to improve four key areas in the
City:
·
Improving our
place: Making York as easy as possible to
move around and enjoy, with uncluttered and clear signage, and
making public transport and facilities comfortable, easy to use and
accessible. York already has many assets in terms of leisure,
cultural and spiritual resources, which we can enable and encourage
people with dementia to enjoy.
·
Improving our
people: With training for staff who
provide key services in the wider community, such as in banks,
libraries and shops, we can improve customer service and
'understanding of needs', and remove stigma.
·
Improving
resources: Using the ‘dementia
friendly’ forget-me-not symbol to denote dementia-friendly
services and venues (theatres, cinemas, cafes) we can support
businesses to become dementia-friendly and recognise such
credentials. We can consider the needs of people with dementia when
developing all services, not just health and care
services.
·
Improving
networks: By encouraging people with
dementia and carers to network and share experience and creating a
York Dementia Action Alliance, partners can commit to action within
their own organisations and support this movement, building a sense
of corporate responsibility across all sectors.
The Dementia Pathway in
York
A dementia
pathway will begin at the point that someone becomes aware of
changes to their memory, or other symptoms associated with
dementia, and will progress through diagnosis, post-diagnosis
support, living well with dementia, and eventually end of life
care(Alzheimer’s Society,
2021). The national Dementia Pathway describes how support should
‘wrap around’ a person when theyneed
it and is dependent upon how much they
need at each point
in time- sometimes close and intense, and sometimes more distant,
but there if and when required.
In York, we recognise that we
have work to do in each section of the pathway, and we have used
the 5 recognised stages to illustrate our strategy to provide
better support for those living with Dementia in the
City.
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Current Challenges &
Opportunities
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What ‘Good’
Would Look Like
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·
York has a larger than national average gap between actual and
expected prevalence of dementia. Primary care have a challenge to
proactively seek and assess people who may be at risk, and identify
the condition as early as possible to ensure the right people get
the right support at the right time.
·
Much of York’s health and social
care support starts with a person’s strengths, and the city
has a long history of building resilient communities, where it is
understood that local people are best placed to understand and find
solutions to their needs. This offers the opportunity to develop
community networks to prevent, reduce and delay the need for formal
support for people with Dementia.
·
Recent survey results demonstrate that
many older people in York experience loneliness, a distressing
emotion which research links with dementia.
·
There is growing awareness that untreated
depression can be a risk factor for dementia, and that treatment of
depression in older adults is lower. Research is also demonstrating
a link with frailty.
·
Works by the Alzheimer’s Society tells us that language barriers,
cultural perceptions of dementia and a lack of culturally
appropriate diagnosis and support services can all affect how
people interact with and receive services.
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·
People live, work, and socialise in communities that promote health
and wellbeing, and reduce social isolation.
·
Campaigns, such as ‘What’s good for your heart is good
for your head’, and campaigns targeted on the basis of local
public health data, are visible in the city to reduce the risk
factors which can contribute to a third of dementia cases.
·
Over 75% of the over 40/65 population (including those with a
learning disability) have an NHS health check where dementia is
discussed. The uptake is monitored quarterly, and the percentage of those where dementia is
discussed reported to the Health and Wellbeing Board.
·
Community connectors, such as Social Prescribers, Local Area
Coordinators and Adult Social Care Talking Points, as well as third
sector organisations, ensure sufficient reach across the City
(including reaching into Dementia Hubs) to get the right
information to the right people in a timely manner.
·
Primary Care identify symptoms of conditions which may contribute
to dementia (such as depression and frailty) in older adults and
treat them appropriately.
·
We are proactively addressing issues such as language barriers and
cultural perceptions on dementia to positively impact how people
interact with and receive services.
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Key Actions &
Priorities
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·
Develop the work of the Ageing Well partnership around York being a
Dementia Friendly City.
·
Ensure Public Health have a forward plan for preventative campaigns
which include regular reference to reducing the modifiable risk
factors linked to dementia, including making tangible progress
towards York being a carbon net zero city.
·
Develop a dedicated space for information and advice about Dementia
on Live Well York (an information and advice community website for
all adults in the City).
·
Work with Public Health and our local GP’s to develop what is
included in, and how performance is measured on the NHS health
checks in the City.
·
Ensure in-reach from community connectors to Dementia Hubs to
promote the support that people can access within their own
communities
·
Develop assurance around diagnosis and treatment of depression in
older adults in the City
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Current Challenges &
Opportunities
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What ‘Good’
Would Look Like
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·
Our
diagnosis rate (54.7%) is below the national average (61.7%) and
the national target (66%). This means that there are
significant numbers of people living in York with undiagnosed
dementia.
·
The
fear of stigma can prevent a person from accessing a diagnosis, and
we need to provide good information about dementia and the benefits
of diagnosis
·
We
have a challenge to ensure we are taking all opportunities to
diagnose young-onset (under the age of 65yrs) dementia.
People often
face different challenges (e.g., keeping working, having a young
family), and there is often a long wait for diagnosis as other
conditions are explored. Follow up is critical and the support
designed for older people is often not suitable, meaning people
with young onset dementia can find themselves isolated within their
community.
·
We need to ensure that the diagnosis pathway is seamless and that
we minimise bottlenecks to access the memory service and
neurology.
·
We
have an opportunity to continue work already started to reduce
delays in referral from GPs to the memory clinic by making the
process easier for GP's without compromising the quality of
referrals.
·
We
must develop a post diagnostic pathway of support, as consultation
with citizens has told us that many people have felt unsupported
after diagnosis, and feedback would suggest that there is
inconsistency across the City.
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·
Organisations involved generally in care and support, are skilled
in identifying the symptoms of dementia, and know what steps to
take to support people to receive a diagnosis. Likewise they are
aware of
the impact of common physical health problems on
cognition.
·
The Dementia work stream of the Humber and North Yorkshire
Integrated Care System, will support and monitor targeted work in
primary care where diagnosis rates remain low (<3.3%), with an ambition for diagnosis rates
to be above 67% by the end of this Strategy’s lifecycle.
·
There are embedded processes for monitoring and reporting the
average length of time people are awaiting diagnosis. The benchmark will initially be against
pre-pandemic timescales, and the ambition
will be a maximum of 6 weeks between referral and diagnosis. This
includes people under the age of 65, people with alcohol related
dementia, people with learning disabilities and people from BAME
and minority groups.
·
People know what to expect of the diagnostic process, and diagnoses
are delivered in a compassionate way, using positive hopeful
language (which signals the beginning and not the end of a
process). Diagnosis is also timely,
affording people the best opportunity to ensure their wishes are
considered in the development of their support plan and more chance
to take part in research if they wish to do so.
·
We
build upon the current pilot with people 90+ and people considered
vulnerable, and consider diagnosis for ‘harder to
reach’ communities, such as those who can’t leave their
homes, those with other ill health complications, and those with
delirium. We offer support to people discharged from hospital with
delirium, to monitor their cognition and prevent
deterioration.
·
We have adapted referrals pathways between hospitals and
importantly the A&E department, to make it easier to refer
directly from these settings into memory assessment
services.
·
There is integrated
working between neurology, neuroradiology and psychiatry in
assessment of young onset dementia and Parkinson’s Disease
Dementia (as per the NICE guidance). We are exploring the use of a
Picture Archiving and Communication System within the Memory
Assessment Service.
·
People
diagnosed with dementia and their family or friend carers have easy
access to information on planning and making choices about their
care at the end of life. Information and advice is easily
accessible throughout the person’s journey and as their needs
change. This includes
access to support and advice around medications routinely used
following a new diagnosis of dementia, including written
information to allow people to make informed decisions about
treatment options.
·
With support from the ICS, we explore and implement technological
solutions to ensure that people with dementia have a single digital
health and care record that is accessible to them and to all health
and care professionals involved in their care. This includes access
to advance care plans.
·
Referrals made
to the memory service (from primary care and other care providers)
is streamlined and efficient, with all involved understanding what
is required to reduce the delay from referral to assessment as much
as possible.
·
Our
Memory service:
o
Accepts
referrals from sources other than primary care, especially in
urgent or crisis situations.
o
Builds on existing work to explore alternative diagnostic pathways,
for example, using other professionals and tools such as DIADEM,
and proactive in-reach to care homes
o
Has
clear pathways to enable effective and consistent access to
psychiatrists, psychologists, occupational therapists, social
workers and dementia advisers, as well as linguists and
interpreters, during the diagnostic process.
o
Provides a
choice of modalities such as telephone, video conference or face to
face appointments where appropriate
o
Has a diagnostic pathway for young onset
dementia and GPs are responsive to symptoms
o
Has a post-diagnostic dementia adviser
service, with automatic referral to the service unless people opt
out.
o
When people
have been prescribed medications, they have access to a named
memory nurse within the service for advice, support and changes to
their dose.
·
People
with dementia and their carers are able to influence the design of
pre and post-diagnostic support through their involvement in the
implementation of this strategy.
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t Challenges
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Key Actions &
Priorities
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Deliver training to the health and social
care workforce to ensure skills in identifying the symptoms
of dementia, knowledge of the impact of common physical health
problems on acute cognition, and of the steps to take to assist
someone to receive a diagnosis.
·
Develop a programme of targeted support for GP practices to
increase the rate of diagnosis, supported by Dementia
Coordinators.
·
Develop monitoring and reporting processes to track the time people
are having to wait between referral and diagnosis
·
Set clear expectations around how and
when diagnoses are delivered and what people can expect in terms of
support and advanced care planning at this stage
·
Raise awareness and increase the use of
the DiADeM tool (the Diagnosis of Advanced Dementia) to support GPs
in diagnosing advanced dementia.
·
Work with the ICS to develop and
implement technological solutions for shared care
records
·
Improve the integration of dementia advice and community support
within GP practices.
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Current Challenges &
Opportunities
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What ‘Good’
Would Look Like
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·
People of York
have a varied experience of Dementia Support services. There are
examples of good practice, and there is an opportunity for
collaboration within the market to model the good work going
on.
·
Engagement
research found many stories of services working well together, but
some reported not receiving any support at all, and others gave
examples of inflexible and impersonalised support.
·
York’s
care and support market is facing unprecedented workforce
challenges, both in terms of recruiting and retaining staff
(currently this challenge is faced across the workforce, from
volunteers to nurses). This impacts both upon the available skills
to deliver good quality dementia care and upon the number of spaces
within care homes registered to support people with
dementia.
·
High land value
in the City presents a further challenge which prohibits investment
from larger specialist Dementia services.
·
There are
challenges in discharging people with dementia safely from hospital
because of issues such as finding the right level of support for
people with complex needs, or knowing whether their support is
primarily to be provided by health or social care.
·
There are
gaps in
provision for people with young onset dementia and alcohol related
dementia. Carers of people with young onset dementia report a lack
of age-appropriate activities and support, and the need for support
to be flexible to accommodate employment.
·
York’s rate of emergency hospital admissions for people with
dementia is lower than the national average (3375 per 100,000), but
people with dementia are staying in hospital twice
as
long as other older people.
·
There is a challenge in finding crisis support around the
clock.
·
There is a challenge to ensure that all health and social care
staff who may support someone with dementia, have the appropriate
level of training.
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·
People of York are able to make informed choices about the support
they need, using readily available information, advice, and
guidance, which is accessible in different formats and covers
issues such as financial support, carers’ rights, and local
support options. Community connectors such as the Council’s
Talking Points, Local Area Coordinators, Social Prescribing, and
third sector organisations, are available to offer this in
person.
·
People with
dementia are involved in planning their support, and different
approaches are used to ensure their maximum
contribution.
·
Support, stopped due to coronavirus
precautions, has been safely reinstated without the need for
unnecessary further assessment, and the support required to aid
recovery from the adverse effects of Covid-19 is
considered.
·
Work is underway towards a single digital health and care record,
to help reduce the need for people to tell their story multiple
times, and to increase their control over their situation. This
work includes efforts to mediate the risks of digital
exclusion.
·
Everyone who has received a dementia diagnosis, and their informal
carers where present, have immediate short-term support to help
come to terms with their diagnosis, and plan for the future.
·
People with dementia who live alone are supported where needed and
receive appropriate information and support to ensure they can
maintain social networks, activities and live safely in their own
home. Assistive technology is proactively considered.
·
People are automatically referred
to a dementia adviser in either the Memory Service or primary care
(with the ability to opt out); and everyone with a dementia diagnosis has a named
health or social care professional within
one of these services, to support them to coordinate their care
from the point of diagnosis to the end of life.
·
Evidence-based,
post-diagnostic support interventions are provided for people with
dementia and carers/family members where present, including support
to maintain inclusion, occupation and identity, and social
relationships; and tools such as personal health budgets and
assistive technology to increase choice and control.
Where anti-psychotic medication is appropriate, its use is closely
monitored to ensure safe and high quality practice.
·
Support is
provided in a strength based way to the person and not their
‘dementia’, and
is delivered in a way which is considerate of their
individuality.
Decisions made about diagnosis, care
or treatment, are made collaboratively with the person and, where
there is a carer/family member, they will be included.
·
Where
a person with dementia has a carer, there is appropriate support
available to enable that carer to have breaks from this role if
needed, both on an emergency and planned basis
·
The risk of a crisis is prevented wherever possible and where a
crisis occurs there is a comprehensive joined up offer of support.
This means that where admission to hospital, inpatient facilities
or residential care cannot be avoided by a community response, the
person receives compassionate and skilled support, in dementia and
carer friendly environments, and is discharged without unnecessary
delay (utilising the Mental Health Liaison team and specialist
Nurses in primary & secondary care).
·
Opportunities have been taken from the creation of the Integrated
Care Board to simplify the funding arrangements for support for
people with severe dementia.
·
People who live in Care Homes receive appropriate assessment and
diagnosis, and subsequent care planning, as clinical leads are able
to identify the needs of their population and the right pathway for
support. The Care Homes and Dementia team are able to provide
clinical input and quick access to advice and support for care home
staff, which will enhance health, enabling residents to thrive and
to avoid unnecessary hospital admissions.
·
We have a diverse workforce (including peer supporters and newer
roles to the dementia field), with a broad skill set. Every health
and social care professional directly supporting people with
dementia should be trained to at least Tier 2 of the
NHS-backed Dementia Training Standards Framework, and
we learn from people with dementia
themselves, actively drawing on their expertise in training
offers.
·
The Council has a Market Position Statement which promotes
collaborative approaches to delivery of services, and all
commissioned support is required to use a dementia specific approach to care
delivery.
·
We
have the appropriate system-wide
data to inform planning and commissioning of high-quality
dementia
support
services, including regular engagement and ongoing conversation
with people with dementia. We promote active
engagement in research by
people with
both lived and learned experience of dementia to build an evidence
base for practice (e.g., Dementia Enquirers).
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t Challenges
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Key Actions &
Priorities
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·
Ensure that information, advice and guidance is readily available,
accessible and provided in different formats, including in person.
Explore the idea of Dementia Hubs, which provide a physical space
for people with dementia and their carers to visit to access
information, advice and support.
·
Audit health and care records to
establish where support may have been suspended due to the
coronavirus and seek assurance that work is underway to remedy
this.
·
Monitor and contribute to work underway
to develop a local shared care record.
·
Work to develop a clear pathway of
support following diagnosis, both in the short term and throughout
the person’s lifespan
·
Work to develop evidence based, person
centred interventions and support for people with dementia and
their carers
·
Work to develop how the system supports
people through crises, to ensure choice and control and minimise
the negative consequence of intervention
·
Develop the work of the Care Homes and
Dementia Team and the skills of clinical leads within Care Homes to
ensure appropriate diagnosis, assessment, support planning and
review for care home residents.
·
Work to embed the Dementia Standards
Training Framework across Dementia Support providers in the City,
and ensure that there are contractual obligations to deliver a
dementia specific approach
·
Work to develop a minimum data set which
allows us to monitor progress in how we support people with
dementia and their carers; and to consider gaps in knowledge or
provision which warrant research.
·
Learn
from good practice locally around hospital discharge, to increase
the number of people who have a safe discharge from hospital at the
right time, to the right place, with the right level of
support.
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Current
Challenges
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What ‘Good’
Would Look Like
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The
Alzheimer’s Society’s 2021 survey found that 13.9% of
carers in York reported feeling socially isolated. Loneliness
associated with social isolation can link with dementia.
·
York citizens
have reported a need for improved way finding and signage in some
public buildings
·
There is a
challenge to address the stigma associated with dementia and reduce
the fear of diagnosis and social exclusion
·
There can be a
challenge to support people at home with dementia as their
condition progresses; but equally a challenge for a person to leave
their home, their familiar environment, and the impact upon
familial relations.
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People are
enabled to live at home through dementia friendly communities and
tailored home support.
Dementia awareness is improved through dementia friends training,
media communications, social networking; and assistive technology
is used wherever helpful.
·
Community spaces and building-based support is accessible and
dementia-friendly, and local universal services (e.g., opticians,
hairdressers etc) have the opportunity to build their skills to be
dementia friendly.
·
People affected by dementia and their carers (where present) feel
accepted, supported and understood in their communities. They can
maintain and develop their relationships and be able to contribute
to their community.
·
There are mechanisms for an open and ongoing conversation between
people with dementia and service providers so we are constantly
striving for better conditions in which people with dementia can
live a good life.
·
York’s employers support and value people living with
dementia and their carers, and people are able to make meaningful
contribution.
·
York has an Inclusive Transport Strategy, which recognises that not
all disabilities (including dementia), are visible.
·
The Disabled Facilities Grant (DFG) is used to support those who
are eligible, to adapt their homes to make them safe and suitable
for their individual needs; and there are suitable housing options
for people who need to move to somewhere with support but do not
necessarily require a ‘care home’.
·
We positively influence how people perceive living with dementia
for the people of York through active campaigns and
intergenerational projects; and discrimination and disabling
language, attitudes and environments are challenged. Established peer support groups and similar
initiatives are supported to help build resilience, ensure support
which accounts for people’s individuality (e.g., Nursing with
pride, Free to be me in care), human rights, and develops social
action solutions.
·
There are ongoing
opportunities for people with dementia and carers to access support
interventions, information and education following diagnosis,
to help them to live in the way
that is important to them for longer. This includes
age-appropriate activities &/or support to access mainstream
activities for people with Young Onset Dementia and Alcohol Related
Dementia.
·
Our Carers’
strategy includes a specific focus on carers of people with
dementia (including those with young onset), detailing the support
available to them, including access to evidence based
interventions, psychological support, practical training,
bereavement support, and vital breaks where needed.
·
Unpaid carers are routinely offered a flexible assessment of their
own needs (virtual or face to face) and are treated as partners in
the care of the person living with dementia.
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t Challenges
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Key Actions &
Priorities
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·
Contribute to the work of the Ageing Well
Partnership, meeting an objective of the City of York
Council’s Plan, to promote dementia friendly services and
buildings.
·
Contribute to York’s inclusive
transport strategy to ensure that the issue of non-visible
disabilities is acknowledged and addressed.
·
Information, guidance and advice
developed to address the different stages of the Dementia Well
Pathway.
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Consideration given to the spaces, places
and people who can encourage open and ongoing conversations about
creating the right City in which people with dementia and their
carers can live good lives.
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Contribute to campaigns and
intergenerational projects being developed through the Ageing Well
Partnership.
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Ensure symbiosis between the Dementia
Strategy Delivery Plan and the Carers’ Strategy Delivery Plan
to ensure the right opportunities and support are available for
carers of people with dementia.
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Current
Challenges & Opportunities
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What ‘Good’
Would Look Like
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We know in the advanced stages of dementia there is often a hidden
cost to those who provide support, as their caring role can
increase, they can feel more isolated, and they can feel extra
pressure if involved in making significant decisions on a
person’s behalf. We want carers to feel valued and supported,
and able to get support when needed.
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Nationally there is some research to suggest concern about the
number of mixed professionals who visit a person when dying at
home.
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We work in partnership with people with lived and learned
experience to break down barriers to good quality health and social
care at the end of life.
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Everyone has the chance to have the right support and setting at
the end of life, and to be as comfortable as possible. There is
support for people to die with dignity in a place of their choice,
and all efforts are made to avoid unnecessary obstructions to
this.
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People with dementia have choice and control, and are included in
decisions relating to their end-of-life care. Where the person
themselves lacks the mental capacity to make decisions, family and
carers will be provided with the relevant information and tools to
support best interests decisions.
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All
people living with dementia and their carers have the opportunity
to discuss advance care plans at each stage of their
pathway.
We have appropriate information, advice and guidance to enable
people to make early and informed decisions around planning for the
future and end of life care. We also have information which
supports families, friends and carers to identify
signs of a changing condition, where to go and what to
do.
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Advance care planning training is offered to any professional
working within the field of dementia care and we have effective,
including improved nonverbal communication strategies, and use of
people’s life stories to ensure person centred support.
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All
directly delivered or commissioned services meet agreed and
recognised standards for end of life care. Work has been done to
assess the use of the Gold Standards Framework, One Chance to Get
It Right, and Priorities of Care for the Dying Person as national
frameworks which could ensure best practice locally.
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We have an agreed best practice protocol for assessing pain, which
can be utilised widely to assess the impact of pain and discomfort
in people who have difficulty vocalising their needs.
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Families and carers are provided with timely coordinated support
before death, at the time of death, and during
bereavement.
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There are opportunities for people with dementia, their families,
and staff from key stakeholders, to share knowledge and experience
to inform best practice, and consider research opportunities to
improve this.
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We have ongoing audit and monitoring of services to identify gaps
in service delivery in order to ensure that capacity of specialist
palliative care provision meets demand in all settings.
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Key Actions &
Priorities
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Alongside people with lived experience of
dementia, research the barriers which exist to people receiving
appropriate end of life care and support, and work to address
these
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Develop information and guidance to
support people with dementia and their carers to make decisions
about the support they want at the end of their life
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Alongside people with lived experience,
identify and deliver appropriate workforce development around
advanced care planning and end of life care
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Ensure we have the appropriate support in
place for families and carers for when their loved one is diagnosed
as end of life.
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Audit and monitor the availability of
palliative care both in community, health and care home settings,
and set out a framework of monitoring and review to ensure
sufficiency.
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