Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES

 
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
Dementia Action Plan for Wales
2018-2022

Taking Wales Forward
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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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
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    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
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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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.
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    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.
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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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
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    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.
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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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…’
Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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     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/
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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 81066
17

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.aspx
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        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 needs
25

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.aspx
26

         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.pdf
28

     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-framework
30

     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.
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