Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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Dementia Action Plan for Wales 2018-2022 Taking Wales Forward
2
Contents
7 Chapter 1
Risk reduction and delaying onset
9 Chapter 2
Raising awareness and understanding
12 Chapter 3
Recognition and identification
15 Chapter 4
Assessment and diagnosis
18 Chapter 5
Living as well as possible, for as long as possible with dementia
23 Chapter 6
The need for increased support
28 Chapter 7
Supporting the implementation
31 Annex 1
Meeting the needs of specific groups
33 Annex 2
Detailed action Plan
43 Annex 3
How we will know – High Level Performance Measures
© Crown copyright 2018 WG31821 DIGITAL ISBN: 978-1-78903-626-8
3
Ministerial Foreword
Vaughan Gething
Cabinet Secretary for Health and
Social Services
We have a clear vision for
Wales to be a dementia friendly
nation that recognises the
rights of people with dementia
to feel valued and to live as
independently as possible in
their communities.
We want to create a society without This plan positively responds to this
stigma – where people living with challenge; setting out the range of
dementia continue to go about their day stakeholders who can support this agenda
to day life with the wider public who are and the actions required to make a real
understanding and know how to provide change. It has been developed with those
support. who know most about what needs to
be done to improve truly person-centred
This is not something that health and
dementia services – those with lived
social services can do alone.
experience of dementia, their families and
Achieving a dementia friendly nation carers and service providers.
requires a cross-Government, multi-
As a signatory to the Glasgow Declaration1
agency and society wide response.
the Welsh Government has previously
Our national strategy, Prosperity for All,
committed to promote the rights, dignity
challenges us to work differently, not just
and autonomy of people living with
across portfolios within Government, but
dementia. Through our engagement
also with our partners and stakeholders.
with stakeholders we heard about the
We recognise that dementia is a significant positive work of Dementia Action Alliance
health and social care issue which in developing a series of statements with
impacts not only on those living with people living with dementia and their
dementia, but on their families, friends and carers2.
carers too. We also recognise that whilst
dementia is more common in older people,
we also need to support those with young
onset dementia.
1 http://www.alzheimer-europe.org/Policy-in-Practice2/Glasgow-Declaration-2014
2 Further information can be found at: https://www.dementiaaction.org.uk/nationaldementiadeclaration
4
These are:
• We have the right to be recognised people with dementia. We have also
as who we are, to make choices supported closer working between
about our lives including taking primary care and residential homes
risks, and to contribute to society. through our link nurses. In response
Our diagnosis should not define us, to the most recent evidence we have
nor should we be ashamed of it. shifted a focus to risk reduction to
raise awareness of the steps a person
• We have the right to continue with
can take to reduce the risk, or delay
day-to-day and family life, without
onset, of certain dementias.
discrimination or unfair cost, to
be accepted and included in our This document responds to what we
communities and not live in isolation have been told through the extensive
or loneliness. engagement and consultation process
and emphasises the right of people
• We have the right to an early and
living with dementia to person-
accurate diagnosis, and to receive
centred, coordinated and quality care.
evidence based, appropriate,
From this engagement we know that
compassionate and properly funded
services need to be adaptable to meet
care and treatment, from trained
the individual needs of people with
people who understand us and how
dementia – for instance those with
dementia affects us. This must meet
young onset dementia and those with
our needs, wherever we live.
other conditions where dementia is
• We have the right to be respected, more common. The quotes embedded
and recognised as partners in care, throughout the document are taken
provided with education, support, directly from our consultation and
services, and training which enables represent the expectations of those
us to plan and make decisions affected by dementia.
about the future.
Our service and community response
• We have the right to know about needs to be equitable – whether you
and decide if we want to be live in a rural or remote area or in a
involved in research that looks at town, and it needs to meet diverse
cause cure and care for dementia needs, for instance people with
and be supported to take part. protected characteristics who may
be living with dementia and people
We have adopted the principles of who may be able to understand only
these dementia statements which not their first language as their condition
only underpin our plan, but will be progresses. These principles of
considered in the implementation of all equitable access will underpin each of
its actions. the actions set out in the plan.
Please see further information in
We have a strong platform to build annex 1.
on. In the last few years we have
provided additional funding to support As a result of views expressed in
improvements in dementia care. This our consultation and engagement
includes the introduction of dementia processes we have structured
support workers, occupational therapy this action plan around outcomes
support in older people mental health which follow a pathway approach to
units, and teams working within dementia care.
our district hospitals to support
5
These outcomes are:
• Individuals will understand the steps To support the delivery of our vision we
they can take to reduce their risk, or are investing an additional
delay the onset, of dementia. £10 million a year from 2018/19 to
support the delivery of key actions in
• The wider population understands this document, which include
the challenges faced by people :
living with dementia and are aware • Developing ‘teams around the
of the actions they can take to individual’ to provide additional
support them. support for people with dementia
• People are aware of the early signs and their families/carers.
of dementia; the importance of a • Reviewing and standardising the
timely diagnosis; and know where role of dementia support workers
to go to get help. – increasing their numbers as
• More people are diagnosed earlier, required.
enabling them to plan for the future • Development of an All Wales
and access early support and care Dementia Allied Health Practitioner
if needed. Consultant post which will give
• Those diagnosed with dementia advice and support to health boards
and their carers and families are and local authorities to drive forward
able to receive person-centred care service improvements.
and support which is flexible. • Increasing the rate and timeliness of
• Research is supported to help us dementia diagnosis.
better understand the causes and • Strengthening collaborative working
management of dementia and between social care and housing to
enables people living with dementia, enable people to stay in their homes
including families and carers, to be longer.
co-researchers.
• The roll out of the ‘Good work
• Staff have the skills to help them – Dementia Learning and
identify people with dementia and Development Framework’ to
to feel confident and competent in enable people who work with
supporting individual’s needs post- those living with dementia to have
diagnosis. the skills to recognise symptoms
earlier and help them feel confident
and competent in caring for
and supporting those living with
dementia.
• Introducing the principles of ‘John’s
Campaign’ across all health boards
and trusts.
6
Alongside this document we will also How will we measure
publish a compendium of notable
practice to assist service planners and progress?
commissioners in the implementation
of this plan. Progress against delivery of the plan
will be overseen by a Dementia Delivery
We will also ensure that we have
Assurance and Implementation Group
mechanisms in place to continue to
(DDAIG). Membership of this group
engage and listen to the experts by
will include people living with dementia
experience.
and their carers and families. Progress
The action plan, a result of working against this plan will also be a key vehicle
with and listening to a wide range of for demonstrating achievements and
stakeholders, is ambitious and areas for improvement outlined within the
person-centred. This co-productive Health and Care Standards for Wales.
approach will continue throughout its
The actions in this plan are summarised
implementation and will involve people
in Annex 2 to assist with monitoring
living with dementia, their families
progress. These will be formally
and carers being equal partners.
reviewed after three years to ensure
they remain ambitious and relevant.
It is also recognised that through the
implementation of any plan things do
change and in certain areas we have
detailed that further work is needed.
This will be reflected in the work of
the DDAIG.
7
Risk reduction and delaying onset
There is increasing evidence that there in recognition of the importance of
are steps people can take to reduce their improving awareness that simple
risk of developing certain dementias changes to lifestyle can reduce the risk of
or to delay their onset3,4 In 2014 we dementia.
signed up to the Blackfriars Consensus5
‘I can make informed choices about my lifestyle...’
3 http://medicine.cf.ac.uk/news/benefit-healthy-lifestyle/
4 https://www.scie.org.uk/dementia/symptoms/diagnosis/risk-factors.asp
5 http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf
8
Since then we have published guidance
on dementia risk reduction and we have We will:
launched national campaigns to increase • Ensure that risk reduction messages
awareness that it is never too early or too are included in relevant public health
late to make changes to your lifestyle, policies and programmes.
by following six simple steps.
• Promote action across the six
These are: steps to support people to change
behaviours and reduce their risk of
dementia.
1 Be physically active
• Ensure that people living with
dementia receive advice about the
2 Maintain a healthy weight changes they could be supported to
make to increase their general health
and wellbeing.
3 Be socially active
4 Avoid drinking too much What will be different:
alcohol People understand the steps they can
take to reduce their risk, or delay the
5 Stop Smoking onset of certain dementias.
6 Commit to review your health
Nothing about us
Healthy lifestyle choices remain beneficial without ALL of us – how
following a diagnosis and can help can we feel valued if we
people to feel better, improve wellbeing are not included from
and help maintain mobility.
the very beginning
We shall continue to respond to the
emerging research to ensure that
people can access evidenced based
advice and information to lower their
risk of dementia. We will need to make
this information available across all the
different groups in Wales.
9
Raising awareness and understanding
Our consultation has told us that stigma We have also been told that a diagnosis
and discrimination can result in a fear of dementia can make people feel
and reluctance to seek help and advice excluded and less welcome in everyday
when the early signs of dementia arise. activities they used to enjoy, leading to
feelings of loneliness and isolation.
‘I feel included and valued in my community…’
10
Some people also reported a lack of We need to make sure that all sections
understanding from family members, and of our population have the same
among health professionals, including opportunities.
their GPs.
Overcoming these issues will require
continued public education initiatives
We will: and awareness training so that more
individuals, communities, businesses
• Work with the third sector and and public authorities have a better
people with lived experience to understanding of dementia.
increase the number of people in
Wales who are able to recognise This will enable people to understand
dementia through expanding the challenges faced by those living with
initiatives such as dementia dementia and how they can make small
friends and dementia supportive changes that could help.
communities / organisations. Those that are involved in the planning
• Local authorities and health boards and designing of public spaces such as
to work with local communities shops, parks and transport systems,
and third sector organisations to will be encouraged to have processes
encourage them to open their in place to consider and involve people
services so that people with living with dementia in their design and
dementia, their families and carers audit processes in order to understand
can participate. their needs.
• Publicise and actively encourage Wales should be a place
educational settings to use the
where people with
“Creating a Dementia Friendly
Generation” resources developed dementia feel understood,
by the Alzheimer’s Society to build engaged, included and
inter-generational understanding valued
and awareness.
• Ensure NHS-employed staff who
come into contact with the public
(including porters, receptionists and
medical / support staff) receive an
appropriate level of dementia care
training (as specified in – ‘Good
work – Dementia Learning and
Development Framework’6).
Lower levels of awareness about
dementia and the existence of stigma
within some minority ethnic communities
in Wales can also result in these groups
being under-represented in dementia
services7.
6 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework?record-language-choice=en-cy
7 https://www.scie.org.uk/publications/briefings/briefing35/11 We will: • Work with local authorities, local to improve access to passenger health boards and Public Health transport information, enabling Wales so the needs of people living people to plan and undertake with dementia are considered as journeys on the public transport part of planning processes. network. • Ensure that transport planners • Develop and undertake training / operators consider the needs designed to raise awareness of people living with dementia in amongst transport workers of the the development of their services barriers that are encountered by including major contracts such as those with dementia when using the ‘metro’ and the rail franchise, public transport. What will be different: People understand the challenges faced by people living with dementia and are aware of the actions they can take to support them.
12
Recognition and identification
We understand that people may be We also want professionals to know what
reluctant to go to the doctor when they options are available for treatment and
are worried that they may have dementia. support if they refer people for a formal
We need to ensure people are aware of diagnosis.
the benefits of a timely diagnosis.
‘I am aware of the signs and symptoms of dementia and
I know where to go to seek help if I am worried...’13
Many people are worried about
dementia as they grow older, but some We will:
symptoms similar to those of dementia
• Ensure workforce plans are in
can occur for other reasons, such as
line with the principles of ‘Good
depression, infections, or as side effects
Work9’ to enable key front line staff
of medication. An early assessment is
to recognise the early signs of
important to identify other conditions
dementia.
which may be treatable.
• Ensure training for staff who work
with people who have a higher risk
We will: of developing dementia (such those
• Encourage GPs to take up the working in learning disabilities,
dementia component in the mental substance misuse, ambulance and
health Directed Enhanced Service prison services).
(DES) introduced in 2017.
• Review and update, as needed, the A consistent pathway will be developed
dementia awareness DVD for GPs. to enable people to get a timely diagnosis
and care and support. This will include
• Ensure that primary care practices
closer relationships with GPs and other
are able to evidence that they are
health professionals working in the
dementia supportive8.
community to promote case finding and
• Work with stakeholders to deliver appropriate assessment (for example
the most effective ways to increase reviewing medication and identification
awareness of dementia to ensure of other conditions) before referral to
timely diagnosis. memory services.
The pathway will also focus on those
outcomes which matter to the individual,
People have the right to a timely and cover the steps needed to ensure
diagnosis and our consultation told us that people with dementia are able to
that more needs to be done to ensure see the right professional with the right
this happens. To enable people to skills and at the right time – this includes
seek help earlier, more non-specialist access to advice on issues such as
professionals across the statutory and finance and employment.
third / independent sectors need to
be trained to identify those who might Those who are diagnosed with a
have the early signs and symptoms of cognitive impairment other than
dementia, and have clear information dementia, as well as those diagnosed
about where and how to refer on with dementia, must be offered an
appropriately. The roll out of the explanation of the difficulties they may
‘Good Work’ framework will be an experience and be provided with health
integral part of dementia learning and information and advice on memory
training programmes. strategies.
A person with dementia may also have
The stronger the web of other symptoms such as sensory loss,
support we weave, the perception or communication difficulties –
less likely people will fall therefore a variety of strategies will need
to be considered and offered.
through
8 http://www.olderpeoplewales.com/Libraries/Uploads/Dementia_Supportive_A_Checklist_of_Actions_for_Public_Services.sflb.ashx
9 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework – more information on Good Work is
available in the ‘learning and development’ section.14
We will:
• Develop a consistent clearly • Agree a common approach
understood diagnosis, care and to cognitive impairment (other
support pathway which incorporates than dementia) assessment and
standards of care and outcome intervention, with support offered to
measures. primary care by specialist memory
assessment services where required.
What will be different:
People are aware of the early signs of dementia; the importance of a timely
diagnosis; and know where to go to get help.15 Assessment and diagnosis We know that a timely diagnosis of and emotional support at an early dementia allows those affected to take stage can have a significant impact on the right steps to plan ahead and access the way someone is able to manage information, care and support. We also their condition over time and live know that accessing practical independently. ‘I have a timely diagnosis which enables me to make decisions about my care and support...’
16
I want to have access to We will:
a doctor to check if I have • Continue to implement the
dementia recommendations from the memory
assessment service national audit
However, despite small increases in and set targets for health boards to
recent years, currently only around 53%10 increase diagnosis rates by at least
of individuals in Wales with dementia 3% a year.
have a diagnosis. It is vital therefore that
we take action to improve the rate of • Work with stakeholders to identify
increase in diagnosis rates. and utilise the most robust clinically
validated dementia assessment
Our consultation has told us that people tool(s) for use in the Welsh
want the diagnosis process to be language and commission research
handled in an empathic manner, and as necessary.
one which leads to the provision of an
appropriate level of support in the right • Scope access to, and provision of,
place at the right time. They also want memory assessment services to
the process to be consistent and timely, those with learning disabilities.
accessed close to home and responsive • Ensure compliance with the Welsh
to the needs of their carers and families. Government’s All–Wales Standards
We recognise that dementia is not a for Accessible Communication and
single condition and receiving a diagnosis Information for People with Sensory
can be complicated, for instance by Loss.
cultural and language interpretations, or • Scope a programme of work that
other complexities such as sensory loss will capture, record, share and
or a learning disability. We need to work flag the communication needs of
with our partners and stakeholders to service users with sensory loss.
remove these barriers to support
and care.
As a first step we need to ensure that Dementia is life changing –
health professionals are well supported not life ending
to ensure that they have the right
knowledge and skills to make an The consultation also told us that people
appropriate diagnosis. They also need to with a diagnosis and their families and
be made aware of the help and support carers want someone to talk to about it,
that is available post diagnosis so they and what it means to them. They want
can be more confident that a diagnosis help to adjust to the diagnosis, plan for
will lead to an individual and their family the future and to be pointed to the right
feeling better supported. information and support. In response,
we will review and promote our dementia
Furthermore, diagnostic tools must be
helpline11.
available in a variety of languages, which
are culturally appropriate, and in various As part of this review we will ensure that
formats to ensure that health boards can we are able to sign post to the relevant
meet the needs of their population. services whether statutory, third sector or
peer support.
10 http://gov.wales/statistics-and-research/general-medical-services-contract
11 Helpline offers information, support and agency signposting for anyone living with dementia or their supporters. They can be contacted on
Freephone 0808 808 2235 or text ‘help’ on 8106617
We will also review the role of dementia
support workers alongside the We will:
development of the ‘teams around the
• Review and promote the all-Wales
individual’ (please see page 15 and 16 for
dementia helpline as a key source
more information) to ensure that a person
of information.
living with dementia has a key point of
contact to provide appropriate tailored • Review the capacity and role of
information and support as well as dementia support workers to
sign-posting. ensure all individuals with dementia
living in the community have a
This should include making sure that
dedicated support worker working
people are connected to local support
to agreed occupational standards.
networks that are available, including
peer support options and enabling • Ensure every diagnosed person
access to other financial and practical with dementia receives a tailored
support. People living with dementia also information pack in an accessible
need to be provided with information format including, as needed, digital
on what adjustments could be made to options, and is offered access
their lifestyle or environment to help them to a dementia support worker or
remain as fit and healthy as possible. equivalent.
This needs to be made equally accessible • Ensure that carers will be offered
for those in remote, rural and urban an assessment of their own needs
areas, and provided in a way that meets and, if eligible, a support plan will
language and cultural needs. be developed with them to identify
appropriate support (in line with
Opportunities for peer support for both
the Social Services and Well-being
people living with dementia and their
(Wales) Act 2014).
carers also need to be considered as
part of this work.
Getting a diagnosis of dementia is usually What will be different:
a process and not the result of a single
More people are diagnosed earlier,
test. This can take time if a person is
enabling them to plan for the future
referred at an early stage of the condition
and to access early support and care
and a ‘watch and wait’ approach may be
if needed.
necessary to make a confident diagnosis.
A working diagnosis of dementia, subject
to a final confirmation, can be helpful so
that individuals can access information
and support at the earliest opportunity.18
Living as well as possible, for as
long as possible with dementia
We have listened carefully to the lived how individuals have different ways of
experiences of those with dementia, as coping with and adjusting to the changes
well as families and carers, and heard experienced.
‘My support worker helps me and my carer access a
range of support for me to remain in my community…’19
Universally we have heard that we need • Supporting people in the early stages
to develop a support system that is: of dementia to ensure they have the
information and opportunity to make
• Available within the community to
decisions about their own future care
support people to remain in their
and support. This should consider
homes for as long as possible.
lasting powers of attorney12 and
• Flexible – with services able to respond advanced decisions13. For further
to an individual’s needs rather than information please see section on
expect people to adapt to what exists ‘capacity for decision making’.
already. • Enabling access to cognitive
stimulation programmes, such as
• Individualised – with a focus on what
teaching and practising memory
can be done, rather than what can no
strategies, which can improve both
longer be done.
cognitive function and quality of life.
• Able to respond to the needs
• Ensuring access to allied health
of carers.
professionals (such as physiotherapists
• Able to respond to the language and and occupational therapists) and re-
cultural needs of their population. ablement / rehabilitation services to
delay loss of skills and maintenance of
• Able to meet specific needs such as
life roles for longer.
those resulting from sensory loss,
learning disabilities, or young onset • Enabling access to assistive
dementia. technology and / or equipment and
making adaptations to the environment
This means that ‘one size will not fit all’ to maintain or improve a person’s
and we need to develop an approach independence, safety and wellbeing.
which builds upon the support that is
provided by dementia support workers. • Provision of flexible, enabling and
These should be in the form of multi- personalised respite support.
disciplinary teams who are able to adapt
• Ensuring access to advocacy support.
what is required as a person’s needs
change.
The team will flex to meet individual I will be helped to live
needs but their roles will include: independently for as long
• Developing individual care plans
as I can
• Maximising physical well-being for The underpinning approach for these
example advice and support to keep teams is that people have the right
active, eat well or prevent falls. to individualised and person-centred
• Communication support, such as care. We will continue working with key
speech and language therapy. stakeholders, including people living with
• Counselling support. dementia and their carers, to ensure that
this happens.
• Introduction to palliative care
interventions. These will include
the management of pain and other
symptoms with a goal of achieving the
best quality of life.
12 www.gov.uk/power-of-attorney
13 www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx20
We will: We will:
• Develop multidisciplinary ‘teams • Work with social care, health
around the individual’ which provide services and housing providers and
person-centred and co-ordinated involve people with dementia, their
care, support and treatment as families and carers to strengthen
needed. collaboration on a strategic
approach to housing to enable
• Develop an All Wales Dementia
people to stay in their homes.
Allied Health Practitioner Consultant
post who will give advice and • Enable housing staff to access to
support to health boards and local training to assist them to support
authorities to drive forward service people with dementia.
improvements.
• Consider the relevant
• Ensure that Regional Partnership recommendations of the “Expert
Boards (as required through the Group on Housing an Ageing
Social Services and Well-being Population” to inform future housing
(Wales) Act 2014), prioritise ways development.
to integrate services, care, and
• Review the Housing Aids and
support, for people with dementia.
Adaptations Programmes to ensure
that people are able to access
appropriate and timely support
Support to stay safe and (April 2019)
secure in the home
Housing partners and care and repair
Advocacy arrangements
agencies are also key to helping people
with dementia live independently and in a At the heart of rights-based and person-
way that provides a good quality of life. centred support and care, is ensuring
that the voice of the person remains at
This independence can be achieved the centre of any actions or decisions.
through the provision of a range of Throughout the course of a person’s
housing choices such as supported lived experience of dementia, the type of
housing or extra care facilities and access support they might need to express their
to physical adaptations in existing homes. views, to make decisions and to access
Housing staff (including those in extra entitlements will vary.
care and sheltered accommodation) It is acknowledged that the term
should have access to training to enable “advocacy” can be used to mean
them to support people with dementia to different things for different people.
live well. For some, acting as an “advocate” can
be considered to be part of a friendship
or a family relationship with the person or
in the course of a more general support
worker role.21
For others, part of their professional role Capacity for decision
will be to advocate for the people they
support. In some situations the role of making
an advocate can only be taken by a
person who is totally independent from The Mental Capacity Act (2005) provides
the person’s personal circumstances and a statutory framework for people who
any decisions or actions that need to be lack the capacity to make specific
taken. This is known as an ‘independent decisions, at certain points of time,
advocate’. for themselves. The Act also makes
Sometimes the involvement of an provisions for when people who have
advocate is required by law and there capacity want to make preparations for a
are particular or specialists areas of time when they may lack capacity in the
advocacy, undertaken by specialist future. It sets out who can take decisions,
independent advocates. in which situations and how they should
go about this.
The Act is intended to be enabling and
Talk to me about my life, supportive of people who lack capacity
and give me the support and aims to maximise their ability to make
I need to keep living the life decisions or to participate in decision-
making as far as they are able to do so.
I choose
One of the key aims of the Social
Other than when the appointment of an Services and Well-being (Wales) Act
advocate is required by law, it is not the 2014 is for individuals to be at the centre
intention of this plan to prescribe the type of decisions about them and to be
of advocacy or provider of advocacy at supported to have choice and control
different stages. over their lives.
However, the potential value of the role
of independent advocacy as “the voice
of the citizen” should be recognised at all Safeguarding
stages of a person’s lived experience of
dementia, explained and actively offered It is important to recognise that people
as a rights based approach to service with dementia may be at risk of abuse
delivery. and neglect. The Social Services and
Well-being (Wales) Act 2014 (Part 7)
strengthens existing safeguarding
arrangements for relevant partners (such
as NHS, Police or Probation) to have
a duty to report to the local authority
someone suspected to be an adult at risk
of abuse or neglect.
This is supplemented by a new duty for
the local authority to make enquiries to
determine whether any action is required
to safeguard adults at risk.22
The Act includes the establishment of This information is used to develop a plan
a National Independent Safeguarding to address the person’s needs, reducing
Board and Regional Safeguarding behaviours that challenge, improving
Boards. The national board is responsible understanding of their needs and their
for reviewing the effectiveness of quality of life. This also helps the people
safeguarding arrangements in Wales and around the person with dementia to know
makes recommendations to the Welsh how best to respond. In line with NICE
Ministers as to how those arrangements guidelines psychosocial interventions
could be improved. should always be tried first.
The Act also reaffirms the importance Where a person’s level of distress is
of advocacy during the safeguarding extremely severe or there is an immediate
process. risk of harm to themselves or others it
may be appropriate to use medication
such as certain major tranquillizers, or
We will: ‘anti-psychotic medication’. This should
be seen as a short term intervention and
• Ensure that relevant will need careful audit and monitoring to
recommendations received ensure that the use of such medication
from the National Independent meets guidelines published by NICE and
Safeguarding Board are considered is not overused.
and embedded into policy
development across Government
and integrated into operational
We will:
practice.
• Ensure health boards provide
access to evidence-based
psychosocial and pharmacological
Responding to people with interventions in line with Matrics
Cymru14 and other relevant
dementia experiencing guidance.
strong feelings
• Respond to the recommendations
of the Health, Social Care and
Some people with dementia have times Sport Committee’s Inquiry into the
when they become distressed, fearful or use of anti-psychotic medication.
frustrated. These symptoms of dementia
often represent attempts to communicate
a need that has not been met.
What will be different:
An explanation for the behaviour needs
to be developed from information People with dementia and their
gathered about the person, taking into carers and families are able to receive
consideration their physical health, person-centred care and support
medication, recognising triggers of which is flexible.
the behaviour and social and physical
environment.
14 www.1000livesplus.wales.nhs.uk/mental-health/23 The need for increased support Care and support in the individual’s home for increasing needs We understand the importance for dementia losing independent living skills. people with dementia to remain in their The new ‘teams around the individual’ own home for as long as possible. will need to be able to respond quickly Hospital admissions, particularly lengthy when challenges or crises occur. ones, increase the risk of a person with ‘I am reassured to know that my carer is able to access support too…’
24
This may also require specialist intensive All carers must have reasonable breaks
support for a limited period of time, for from their caring role to enable them to
example from social services, learning maintain their capacity to care, and to
disability teams and/or community mental have a life beyond caring. We also heard
health teams with training and experience that respite provision needs to be flexible
in crisis resolution support and meeting as the person with dementia, their family
complex needs. and carers, will all have different needs,
expectations and preferences.
Both the ‘teams around the individual’
and other specialist teams will need Therefore we need to ensure there are
to work together to ensure support different options for respite care which
complements each other. can be provided within the home or
outside the home and be relevant to
different age groups as well as providing
We will: opportunities for people living with
dementia to sustain and maintain their
• Ensure health (including Wales physical, intellectual, emotional and social
Ambulance Service Trust – abilities. Additional funding has been
WAST) and social services have awarded to local authorities across Wales
pathways in place to ensure the in order to develop new approaches
responsiveness of community to respite care which are based on the
assessment and ongoing needs of carers and those being cared
management services. for. We will also ensure that we learn
from the Older People’s Commissioner’s
Rethinking Respite research following its
publication in 2018.
Support for families and
carers including personalised
respite We will:
The ability of individuals with dementia • Ensure that the new ’teams around
to live at home for as long as possible the individual’ enable families and
is often dependent on the support carers to access respite care that is
of families and carers. A very strong able to meet the needs of the carer
message from our consultation was as well as those of the person living
that support for the carer can help to with dementia.
prevent crisis and help maintain their own • Monitor the use of funding provided
physical and mental well-being as well to local authorities for respite
as that of the person they are caring for. provision to identify best practice in
We are firmly committed to ensuring the supporting the needs of the carer
rights of all unpaid carers are enhanced and the person who is cared for
and protected. and ensure this practice is shared.
The Social Services and Well-being
(Wales) Act, provides carers with an equal
right to have a needs assessment.
For carers that have eligible needs, the The carers need to be
local authority has a duty to meet those looked after as well – they
needs through a carers support plan. have their own needs25
Care home settings The need for hospital
admission
We recognise that it will not always be
possible for people to remain in their own
homes, even with enhanced support. We understand that when a person
Living in a care home may be as a result with dementia is accessing urgent and
of personal choice or because of the risks emergency care they are often at their
of harm to the individual if they remain most vulnerable.
at home. Care homes may also provide It is vital that health and social care
respite care to enable family and carer professionals work together and consider
members to have a break. Whatever the risk as part of the care planning and
circumstances, care homes need to be management of people with dementia in
considered as an individual’s home as order to prevent admissions from A&E, or
people have the right to ‘live well’ and be reduce length of stay when an admission
treated with dignity and respect. is unavoidable.
We need to further develop the links We expect health boards to ensure that
between care homes and community their hospitals embed a clear rights-
services and will expect the dementia based approach to ensure that people
‘teams around the individual’ to provide living with dementia are treated with
specialist and regular in-reach support dignity and respect at all times.
to care homes. We are also encouraging The ‘Trusted to Care’ report provides
GP practices to offer a new enhanced clear recommendations on how best
service for residential and nursing care in to care for people with dementia in
Wales. This will ensure a comprehensive general hospitals15. The 1000i Lives team
review of physical and mental health for has also developed a series of tools
all residents when they move into a care to assist in providing person-centred
home, including a review of medication care and dementia supportive hospital
and antipsychotic prescribing. environments.
We have already introduced psychiatric
liaison teams in district general hospitals.
We will: These teams look at the interaction of a
• Further develop use of the new person’s physical health and how that
directed enhanced service for can impact on someone’s mental health.
residential and nursing care homes. Liaison psychiatry team members work
together, using their different skills and
expertise to help people.
They also work closely with other doctors
and healthcare workers to ensure that
physical and mental health care is as
joined up as possible. Additional support
for a persons stay in hospital can also
be provided from the newly established
‘flexible resource teams’.
15 www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx26
I do not want to repeat my
needs over and over again We will:
• Monitor the implementation of the
During our consultation, we heard recommendations from the ‘Trusted
a lot about how we should better to Care’ report.
accommodate the needs of a person
with dementia when they are in hospital. • Ensure that psychiatric liaison
Family members and carers also told services are available to all general
us that there should be flexibility to hospitals in Wales.
allow them to support a person whilst in • Ensure that the recommendations
hospital if they wish. from the Royal College of
Hospitals need to consider this in the Psychiatrists’ National audit of
delivery of their care, for example: dementia in general hospitals are
implemented, including instructing
• Flexibility around meal times. health boards and trusts to adopt
• Letting people sleep and wake at their the principles of ‘John’s Campaign’.
own pace.
• Allowing flexible visiting times.
• Offering activities which are enjoyable
Inpatient care for older
and support feelings of self worth. people within mental health
• Facilitating families and carers to services
continue to support a person with
dementia whilst they are in hospital if Sometimes people will be admitted to an
they wish. older person’s mental health inpatient unit
to get the care that they need. As with
• Adapting environments so they are
any setting this needs to be delivered in
more ‘dementia supportive such as
a person-centred, holistic and respectful
considering the layout and signage.
way. A community of practice for older
• Ensuring that broader physical health person’s mental health units has been
care needs are considered as well as established in Wales so good practice
the presenting medical problem and can be shared.
symptoms of living with dementia.
• Ensuring that people are screened to Access to advocacy in
identify delirium, which is common in
people living with dementia, so it can hospital
be appropriately treated.
When admitted to any hospital,
Some health boards are already individuals with dementia should have
responding to the need to involve family access to effective non-instructed
and carers members by adopting the advocacy or an Independent Mental
principles of ‘John’s Campaign’ in a Capacity Advocate (IMCA) and
number of their wards. We need to Independent Mental Health Advocate
ensure that all health boards adopt this (IMHA) in the most appropriate manner
approach. depending on individual circumstances.27
Practitioners are required16 to help people The report highlights that dementia
access advocacy, when this is needed, to is often not recognised as a terminal
determine their well-being outcomes and diagnosis, which can lead to poor access
express their wishes and feelings. to care, inconsistent quality of care and
inadequate pain management.
Everyone has the right to good end
We will: of life care where they are treated as
• Expand the use of Dementia Care an individual, with dignity and respect,
Mapping™ as an established without pain and other symptoms, in
approach to achieving and familiar surroundings and with their close
embedding person-centred care for family and friends. We need to ensure
people with dementia and ensure that the options and access to palliative
health boards implement ‘Driver care and end of life care is the same for
Diagram – Mental Health Inpatient a person living with dementia as it is for
Environments for people with anybody else.
dementia’.
• Ensure older person mental health
units have agreed care pathways We will:
for accessing regular physical
• Ensure the ‘teams around the
healthcare.
individual’ discuss the importance
• Ensure that access to advocacy of making advance decisions and
services and support is available to ensure an agreed palliative care
enable individuals to engage and pathway is in place.
participate when local authorities
• Identify professionals who would
are exercising their statutory duties
benefit from training in initiating
under the Social Services and
serious illness conversations, and
Well-being (Wales) Act 2014.
provide such training.
• Review the capacity of existing
bereavement services and settings
End of life care in which they are delivered to
ensure that the differing needs of
Dementia is a long term condition and families and carers of those with
in 2015 was the leading cause of death, dementia are being met.
accounting for 11.6% of all deaths17.
Many more people will die of another
condition alongside dementia. What will be different:
In 2015 the Alzheimer’s Society Wales People with dementia, their families
and Marie Curie published a report and carers, receive person-centred
entitled ‘Living and Dying with dementia care and support that adapts as the
in Wales: Barriers to Care’18. needs of an individual increases.
16 Legislation laid down in the Social Services and Well-being (Wales) Act 2014, The Mental Health Act 1983 and the Mental Health (Wales)
Measure 2010.
17 www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredinenglandandwalesseriesdr/2015
18 www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/february-2015/living-and-dying-with-dementia-in-wales.pdf28
Supporting the implementation
Learning and development
People with dementia, their families and home, which has the knowledge and
carers, have the right to be supported skills to offer high quality dementia care
and cared for by a workforce, whether and support.
it is at a GP surgery, hospital or a care
‘I am supported by people who are both skilled and
compassionate and who understand me and the impact
that having dementia has on me…’29
Families and carers should also have
access to training which enables them We will:
to support people with dementia to live
• Ensure people with dementia, their
well and which provides information and
carers and families are involved in
advice about looking after themselves.
the development and delivery of
The provision of dementia related
dementia education and training.
education and training across the sectors
should be developed with people with • Improve access to training for
lived experience, families and carers. carers and families through the
implementation of the ‘Good Work’
Professionals working with people
framework.
who are at a higher risk of developing
dementia also need to be engaged, • Ensure that the principles of ‘Good
suitably trained and involved in the Work’ are embedded in the new
development of pathways. This will vocational qualifications for social
include professionals working across care and health.
a number of areas such as cardiology,
stroke services, learning disabilities • Develop learning resources for the
services, prisons, substance misuse health and social care workforce,
services and homelessness / housing including the third sector, based on
services. ‘Good Work’.
To help deliver this, Good Work: • Ensure all NHS employed staff who
A Dementia Learning and Development come into contact with the public
Framework for Wales19 has been receive an appropriate level of
developed. The Framework aims to dementia care training (as specified
support people to address their own in – ‘Good work’).
specific learning and development needs • Ensure training for health and social
within the context of their lives and care staff includes awareness-
circumstances. raising about the role of carers and
how to involve them appropriately
in the care process.
It’s only when you’re
informed yourself can you
then look after someone to What will be different:
the best of your capacity Staff have the skills to help them
identify people with dementia and
to feel confident and competent in
supporting individual’s needs post-
diagnosis.
19 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework30
Research
We will:
Continued research will allow us to better • Fund an independent evaluation
understand the causes and management of ‘teams around the individual’ to
of dementia, which will enable the inform the continued development
development of new treatment and care of the approach.
approaches.
• Work with NHS and social care
It will also help us to understand what and research teams to support
matters to people living with dementia, and promote more dementia
and how we can best work together to related research studies to Wales.
enable people to live full and healthy lives Supporting the role of research in
for as long as possible. delivering good quality care in a
flexible and responsive fashion.
Wales has been involved in dementia
research for some years. This includes • Create more opportunities
work undertaken through Health and for people with and affected
Care Research Wales’ Centre for Ageing by dementia across Wales to
and Dementia Research, the Dementia participate, be involved and
Services Development Centre and the engaged in research activity.
recently created UK Dementia Research
Institute. • Encourage research that uses
public health approaches to
The Welsh Government remains consider ways of addressing
committed to developing policy and inequalities experienced by people
supporting health and social care with dementia.
research in Wales.
• Ensure there are regular
opportunities to identify innovative
I am aware that I can service models and areas of
be involved in dementia evidence-based practice, to ensure
research findings are implemented
research and will be in services across Wales and to
supported to participate inform research partners of areas
if I want where further research could
usefully inform practice.
What will be different:
People living with dementia, including
families and carers have the
opportunity to be involved in research
that looks at cause, cure and care for
dementia.31
Annex 1: Meeting the needs of
specific groups
To ensure the different needs of our Our ‘More than just words follow on
population in Wales are fully understood, framework’ expects staff in health
and in recognition that ‘one size does not boards, social services and the social
fit all’, the following themes and actions care sector to actively offer services
have been identified as areas to be through the medium of Welsh language,
considered across the pathway. rather than expect patients to have to ask
for them. The ‘Active Offer’ commitment
will be strengthened when the Welsh
Young onset dementia
Language Standards for the health sector
are introduced in 2018.
Younger people living with dementia
often have different needs. They and their
partners are more likely to: Learning disabilities and
• Be in work at the time of the diagnosis
dementia
and to have financial commitments.
People with learning disabilities have
• Have caring responsibilities for children a higher risk of developing dementia
and their own parents. compared to the rest of the general
population. For people with Down’s
• Be more active, stronger and fitter than syndrome, it is predicted that 1 in 3
much older people. people over the age of 50 will develop
Services must address the specific dementia. If people already have
needs of younger people with dementia difficulties in processing information
and their families and ensure that they or short term memory problems this
are aware of the help that is available. can make diagnosis more difficult.
Employers should have access to the Symptoms affecting personality,
right information in order to be able to emotion or behaviour may show before
support employees. They must be able to any change in language ability or
demonstrate how they are providing local memory20. Communication difficulties,
age-appropriate and meaningful support, and an increased potential for sensory
whether that is in a person’s home or impairment, may make it more difficult
through day, respite or residential care. for a person with learning disabilities to
describe their experience of symptoms.
Welsh language provision
For Welsh speakers living with dementia
receiving care and support in their first or
preferred language is a matter of clinical
need. As their condition progresses,
people with dementia may understand
or be able to communicate in their first
language only.
20 White J. Dementia and Equality, briefing paper. Edinburgh: NHS Health Scotland; 2015 – citing Sheehan et al 2014.32
Sensory impairment and The language needs of people living
with dementia may change as the
dementia condition progresses, and services need
to be aware of and able to respond to a
A number of people with dementia will person’s language and communication
have some form of sensory impairment needs.
(such as sight loss, hearing loss or
both).As this can create additional Services should ensure that care,
difficulties with communication, service support and treatment provided is
design across the pathway should allow culturally acceptable and that staff are
equal access for people with a sensory appropriately trained. Steps should be
impairment to all dementia related taken to ensure that a person is asked
services and support. about their individual culture during
contact and that equity of access is
The Welsh Government introduced improved, by, for example, developing
the All-Wales Standards for Accessible different information resources and/or
Communication and Information for appointing outreach workers.
People with Sensory Loss in December
2013. The aim of this document is to
set out the standards of service delivery Lesbian, gay, bisexual or
that people with sensory loss should transgender (LGBT) people
expect when they access healthcare in
Wales. A key part of the Standards is the
with dementia
requirement that every service user who
requires communication support should Older LGBT people are more likely to
have this need met. be single and to live on their own, and
are less likely to have children or regular
family support.
People with dementia from Some LGBT people feel that services
Black, Asian and Minority are not sensitive to their needs and
Ethnic (BAME) and Gypsy, individuals can sometimes feel out of
place in traditional support groups.
Roma, and Traveller (GRT)
Dementia UK (2007) reported that many
communities:
older transgender people (aged 60
and over) are concerned that they may
We need to ensure that people from develop dementia and need intimate care,
BAME and GRT communities can access which may result in being treated in ways
appropriate services easily. There is not fitting with their gender identity21.
known stigma connected with dementia
and diagnosis in some cultures and Services should ensure that staff are
communities that can lead to reluctance aware and appropriately trained to deliver
to access services. Equally, services care and support that is sensitive and
that are not designed to meet cultural acceptable to a person’s sexuality and
or religious needs can unintentionally gender identity.
exclude people and their families and
carers from accessing support.
21 Dementia UK: the full report; Kings College London and London School of Economics, 2007.You can also read
