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Due to the impact of COVID-19, we have identified where further work should be undertaken. 

Introduction

The COVID-19 pandemic and the response to it, has had an impact on the health and wellbeing of people in Wales. Those that have been acutely affected are the most vulnerable members of society, including those people living with dementia and their families.

The Dementia Oversight Implementation and Impact Group (DOIIG), which informs and monitors progress against the Dementia Action Plan, has been meeting regularly throughout the COVID-19 Pandemic. Membership of the DOIIG, which is chaired by the Welsh Government, includes representation from health boards, people with lived experience of dementia, Social Care Wales, Alzheimer’s Society, Older People’s Commissioners office, academia, Welsh Allied Health Professions Advisory Committee and the Association of Directors for Social Services. 

Over the last few months the DOIIG has been considering a number of recovery priorities that will also support the vision of the Dementia Action Plan (DAP). This work is not intended to replace what is included in the action plan but to strengthen it where we have identified further work is required and to be clear how we will report against previously agreed actions.  

In early 2021 a paper was put to the DOIIG for their consideration which suggested a number of priorities for recovery. The priorities were informed by: 

  • The Dementia Care COVID-19 partnership forum, led by Improvement Cymru, which met throughout the first waves of the pandemic, offering a regular opportunity to identify challenges and develop solutions. 
  • The themes that have been discussed at DOIIG since its re-establishment in July 2020. 
  • Relevant research including, where possible, research pertaining to people living with dementia and their families. 

Given the impact of the pandemic and the restrictions put in place to support the response, it was recommended there be an increased focus on the following areas: 

  • the person and their carers in their home (their own home, care home settings)
  • the person and their carers living in a community
  • the person and the services they need to support health such as hospital care

It was also confirmed that these priorities will inform the DAP independent evaluation that is ongoing and will support the implementation of the recently published all Wales dementia pathway of standards that promotes a whole systems integrated care approach. 

As a result of consultation with the DOIIG and across Welsh Government it was agreed that the following areas will be the focus of the next 12 months.

Overarching cross-cutting themes

1. Ongoing learning, equity of access and development and evidence informed responses

1.1 All Wales dementia pathway of standards

Implementation of the all Wales dementia pathway of standards which promote a whole systems integrated care approach – equity of access, supporting the DAP.

Currently this area can be mapped across to the following in the DAP.

Assessment and diagnosis

  • Scope the access to and provision of memory assessment services to those with learning disabilities. 
  • Review the capacity and role of dementia support workers to ensure all individuals with dementia living in the community have a dedicated support worker working to agreed occupational standards. 
  • Living as well as possible for as long as possible. 
  • Develop multidisciplinary ‘teams around the individual’ which provide person-centred and co-ordinated care, support and treatment as needed. 

Annex 1 (within the DAP) 

As referenced in the plan our service and community response needs to be equitable – whether you live in a rural or remote area or in a town, and it needs to meet diverse needs, for instance people with protected characteristics who may be living with dementia and people who may be able to understand only their first language as their condition progresses. These principles of equitable access will underpin each of the actions set out in the plan.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Further support the delivery framework quality planning phase of implementing the all Wales dementia standards and provide a readiness matrix on progress against the specific dementia standards as per the delivery framework to regions. NB this will include ensuring other standards published (for example the Royal College of Psychiatrist’s standards for mental health services in the prisons in Wales, which will include specific standards for dementia) support the work of the standards. Quarterly reports on this progress will be submitted as part of the Improvement Cymru work plan.
  • Provide an update to DOIIG on the recommendations by the Hearing Loss Task and Finish Group, in order for group to consider next steps. 
  • Utilise the Welsh language and dementia sub-group to drive forward recommendations from the Alzheimer’s Society Cymru and Welsh language commissioners report on Welsh language and dementia.
  • Updated population needs assessments that are required by Regional Partnership Boards which must consider the needs of people living with dementia and their carers.
  • Through our ‘Digital Communities Wales: digital confidence, health and well-being’ (DCW) procured programme, provide workforces across all sectors with the basic digital skills, knowledge and confidence to deliver and support people to engage with digital services.
  • Through our Race Equality Action Plan  we will explore ways to improve early access to mental health and dementia services for ethnic minority populations. This work will be informed by the formal consultation on the plan itself.
  • Provide updates on the rehabilitation and recovery work to support service planning for the anticipated demand for rehabilitation and recovery for people affected by COVID-19.

1.2 Learning and development

This will include action for both health and care practitioners and unpaid carers.

Currently this area can be mapped across to the following in the DAP.

Raising awareness and understanding 

  • 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’). 

Recognition and identification

  • Ensure workforce plans are in line with the principles of ‘good work’ to enable key front line staff to recognise the early signs of dementia. 
  • Ensure training for staff who work with people who have a higher risk of developing dementia (such those working in learning disabilities, substance misuse, ambulance and prison services). 

Supporting the implementation

  • Ensure people with dementia, their carers and families are involved in the development and delivery of dementia education and training.
  • Improve access to training for carers and families through the implementation of the ‘good work’ framework.
  • Ensure that the principles of ‘good work’ are embedded in the new vocational qualifications for social care and health. 
  • Develop learning resources for the health and social care workforce, including the third sector, based on ‘good work’.
  • Ensure all NHS employed staff who come into contact with the public receive an appropriate level of dementia care training (as specified in ‘good work’). 
  • Ensure training for health and social care staff includes awareness-raising about the role of carers and how to involve them appropriately in the care process. 
  • Ensure training for health and social care staff includes awareness raising about the role of carers and how to involve them appropriately in the care process. 

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Provide a summary of health board and NHS trust responses against the NHS delivery framework. Health boards are now required to respond to progress of implementing the ‘Good Work Dementia Learning and Development Framework’ as part of the NHS delivery framework. This will support the existing actions around ensuring appropriate dementia care training for NHS staff who come into contact with the public and ensuring workforce plans are in line with the principles of ‘good work’ to enable key front line staff to recognise the early signs of dementia.
  • Provide a proposed work plan led by the learning and development sub group for sign off by DOIIG, which will also support the implementation of the dementia care standards. This will be then reported on quarterly.
  • Support the development and implementation of a training framework for the new liberty protection safeguards, including raising awareness and increasing the skills and competencies of families of people living with dementia, carers, social care workers and health workers. 

1.3 Research

This will include research that understands the impact of the COVID pandemic, including a review research evidence and identify gaps.

Currently this area can be mapped across to the following in the DAP.

Supporting the implementation

  • Fund an independent evaluation of ‘teams around the individual’ to inform the continued development of the approach.
  • Work with NHS and social care and research teams to support and promote more dementia related research studies to Wales. Supporting the role of research in delivering good quality care in a flexible and responsive fashion.
  • Create more opportunities for people with and affected by dementia across Wales to participate, be involved and engaged in research activity.
  • Encourage research that uses public health approaches to consider ways of addressing inequalities experienced by people with dementia.

How we will report as part of this: 

  • Provide a summary of the outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Continue the independent evaluation over the remaining period of the plan. 
  • Engage with DOIIG members around ongoing research in respect to COVID to ensure lessons learnt. A separate paper outlining current research will be made available to DOIIG members to support their role in ensuring the themes of this research is featured into current work plans.

2. Cognitive health and prevention / risk reduction

2.1 Brain health and risk reduction of dementia

Improving awareness of lifestyle changes that can support the risk reduction of developing certain dementias.

Currently this area can be mapped across to the following in the DAP. 

Risk reduction: 

  • Ensure that risk reduction messages are included in relevant public health policies and programmes.
  • Promote action across the six steps to support people to change behaviours and reduce their risk of dementia.
  • Ensure that people living with dementia receive advice about the changes they could be supported to make to increase their general health and wellbeing. 

How we will report as part of this: 

  • Summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP. 
  • Provide summary of outcomes reported through the Healthy and Active Fund where relevant to those living with dementia and their carers.
  • Action promoted to support people to change behaviours and reduce their risk of dementia across 12 modifiable risk factors. 
  • Improvement Cymru to lead work with the regions regarding brain health and early memory problems to promote the memory problems agenda and highlight the need for early detection, which forms part of the assessment, support and advice given to people.

2.2 Timely diagnosis

This will include a focus on the dementia pathway of standards readiness phase and the right time and right place for timely diagnosis, including consideration of the role of primary care, memory assessment services, and other workforce roles that could carry out functions.

Currently this area can be mapped across to the following in the DAP. 

Recognition and identification

  • Review and update, as needed, the dementia awareness DVD for GPs. 
  • Work with stakeholders to deliver the most effective ways to increase awareness of dementia to ensure timely diagnosis.
  • Develop a consistent clearly understood diagnosis, care and support pathway which incorporates standards of care and outcome measures.
  • Agree a common approach to cognitive impairment (other than dementia) assessment and intervention, with support offered to primary care by specialist memory assessment services where required.

Assessment and diagnosis

  • Continue to implement the recommendations from the memory assessment service national audit and set targets for health boards to increase diagnosis rates by at least 3% a year.
  • Work with stakeholders to identify and utilise the most robust clinically validated dementia assessment tool(s) for use in the Welsh language and commission research as necessary.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP. 
  • Separate work stream to be established to support the £3m additional investment secured for memory assessment services and support for people during the assessment process and following diagnosis.
  • Commission research to further identify good quality normative data on Welsh language versions of cognitive assessment scales that are commonly used in Wales, allowing the confident interpretation of assessments carried out in a clinical context. The overall aim of the project is to collate information on the dementia assessment tools/scales available in Welsh, how they are currently used and identify the most robust Welsh language clinically validated tool(s). 
  • Digital Health and Care Wales and Improvement Cymru’s work to develop the ability to report on diagnosis rates monthly in order to support the improvement required in this area. 
  • Work with Primary Care regarding the Quality Assurance and Improvement Framework for GPs to include appropriate reference to dementia and to develop a Primary Care toolkit. 
  • Improvement Cymru’s work to develop an All Wales Mild Cognitive Impairment (MCI) Strategy (working with a task and finish group), which incorporates guidance for organisations and practice.

3. Protecting rights / person centred approach

3.1 Post diagnostic therapeutic interventions/rehabilitation

Improve access to and increase awareness of therapeutic interventions, which in turn reduces the use of antipsychotic medications. As part of this, we will wish to recognise the value of rehabilitation and therapeutic interventions post diagnosis and as part of COVID pandemic recovery.

Currently this area can be mapped across to the following in the DAP.

Living as well as possible for as long as possible

  • Develop multidisciplinary ‘teams around the individual’ which provide person-centred and co-ordinated care, support and treatment as needed.
  • Ensure that regional partnership boards (as required through the Social Services and Well-being (Wales) Act 2014), prioritise ways to integrate services, care, and support, for people with dementia.
  • Work with social care, health services and housing providers and involve people with dementia, their families and carers to strengthen collaboration on a strategic approach to housing to enable people to stay in their homes.
  • Respond to the recommendations of the Health, Social Care and Sport Committee’s Inquiry into the use of anti-psychotic medication.

The need for increased support

  • Ensure health (including Wales Ambulance Service Trust – WAST) and social services have pathways in place to ensure the responsiveness of community assessment and ongoing management services.
  • Ensure that access to advocacy services and support is available to enable individuals to engage and participate when local authorities are exercising their statutory duties under the Social Services and Well-being (Wales) Act 2014.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP. This will include the dementia advocacy project hosted by Gwent on behalf of the RPBs which is about enabling people living with dementia access to services and support that they need and to have a voice in decisions that are being made. 
  • Provide evaluation report in May with recommendations in relation to future phases of ‘Ask a dementia expert which was established as a virtual national support service, initially in response to COVID.
  • Improvement Cymru’s work to develop a resource to promote activity and skills for maintaining strength and balance requires further development and includes the production of All Wales resource for practitioners to support people and their informal carers and guidance for organisations and practice (working with a task and finish group).
  • Improvement Cymru’s work to scope and develop resources with partner agencies and working with a task and finish group and designers to create a resource for use digitally and in hard copy).
  • Support the development of a prescribing protocol for anti-psychotic medication, with a focus on step down protocol.
  • Integrate our post COVID rehabilitation response for people with dementia and their carers with the national rehabilitation framework and forthcoming AHP framework  programme rehabilitation actions.
  • Report on the work with the AHP consultant and the AHP dementia network for Wales.

3.2 Support for care homes

Including risk enablement rather than risk avoidance and access to rehabilitation and recovery support.

Currently this area can be mapped across to the following in the DAP.

Living as well as possible for as long as possible

  • Develop multidisciplinary ‘teams around the individual’ which provide person-centred and co-ordinated care, support and treatment as needed.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Continue to work with the care home sector to help support the rights based approach to care for people living with dementia and their families, and enabling access to the rehabilitation they require in response to COVID-19. This will include ongoing work supporting care home residents’ wellbeing, identified through the work of the Care Home Action Plan.

3.3 Improved hospital care

Including work to support prevention of admissions from A and E, or reduce length of stay when an admission is unavoidable, embedding a clear rights-based approach in hospital care. 

Currently this area can be mapped across to the following in the DAP.

Living as well as possible for as long as possible

  • Develop multidisciplinary ‘teams around the individual’ which provide person-centred and co-ordinated care, support and treatment as needed.

Increased need for support

  • Monitor the implementation of the recommendations from the ‘Trusted to Care’ report.
  • Ensure that the recommendations from the Royal College of Psychiatrists’ national audit of dementia in general hospitals are implemented, including instructing health boards and trusts to adopt the principles of ‘John’s campaign’. 
  • Expand the use of dementia care mapping™ as an established approach to achieving and embedding person-centred care for people with dementia and ensure health boards implement ‘driver diagram – mental health inpatient environments for people with dementia’.
  • Ensure older person mental health units have agreed care pathways for accessing regular physical healthcare.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Provide quarterly reports on the implementation of the hospital charter, led by Improvement Cymru. 
  • The AHP consultant will work collaboratively with the National Clinical Lead for Falls and Frailty to embed dementia care standards in the hospital setting. We will report on the work of the All Wales Inpatient Falls Network and the AHP dementia network.
  • Improvement Cymru’s work to develop an all Wales dementia care mapping strategy, which incorporates guidance for organisations and practice.
  • Provide an update to DOIIG on the recommendations by the dementia care in hospital report when published by the Dementia Cross Party Group, in order for group to consider next steps. 

3.4  Palliative care

Timely conversations, advanced care planning and good end of life care

Currently this area can be mapped across to the following in the DAP.

Increased need for support

  • Ensure the ‘teams around the individual’ discuss the importance of making advance decisions and ensure an agreed palliative care pathway is in place. 
  • Identify professionals who would benefit from training in initiating serious illness conversations, and provide such training. 

How we will report as part of this: 

  • Summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Make available bite size end of life care and dementia sessions, to health and social care workers and family carers.
  • We will ensure that needs of people living with dementia and their families are considered as part of the compassionate Cymru movement.

4. Responding to changes in care

4.1 Empowering community action

Developing community networks that raise awareness of dementia and assist in supporting people to remain in their homes for as long as possible.

Currently this area can be mapped across to the following in the DAP. 

Raising awareness and understanding 

  • Work with the third sector and people with lived experience to increase the number of people in Wales who are able to recognise dementia through expanding initiatives such as dementia friends and dementia supportive communities / organisations.
  • Local authorities and health boards to work with local communities and third sector organisations to encourage them to open their services so that people with dementia, their families and carers can participate.
  • Publicise and actively encourage educational settings to use the 'creating a dementia friendly generation' resources developed by the Alzheimer’s Society to build intergenerational understanding and awareness.
  • Ensure that transport planners / operators consider the needs of people living with dementia in the development of their services including major contracts such as the ‘metro’ and the rail franchise, to improve access to passenger transport information, enabling people to plan and undertake journeys on the public transport network.

How we will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP. 
  • Provide updates from education colleagues in respect to ‘dementia friendly generational resources’. 
  • Report on the implementation of the 'back to community life' initiative led by Improvement Cymru and Cwm Taf Morgannwg health board and the ‘get there together project’ across the regions to encourage people to reengage with their community safely’. The AHP consultant to liaise with RPBs / LAs around the appropriate reporting mechanism. 
  • Provide update report on dementia reading well project.
  • Work with our Loneliness and Isolation Advisory Group to consider  the report of the Wales Intergenerational Practice Summit and determine what more can be done to support  meaningful and mutually beneficial intergenerational practice  for younger and older people in Wales. 
  • As part of our Social Prescribing Task and Finish Group, develop an ‘all Wales offer’ which will help embed social prescribing across Wales.

4.2  Support for unpaid carers

Ensuring unpaid carers are supported to make informed choices, provision of information / advice and assistance and access to support, which is flexible i.e. short breaks / respite.

Currently this area can be mapped across to the following in the DAP.

Assessment and diagnosis 

  • Ensure that carers will be offered an assessment of their own needs and, if eligible, a support plan will be developed with them to identify appropriate support (in line with the Social Services and Well-being (Wales) Act 2014). 

The need for increased support

  • Ensure that the new ’teams around the individual’ enable families and carers to access respite care that is able to meet the needs of the carer as well as those of the person living with dementia.
  • Monitor the use of funding provided to local authorities for respite provision to identify best practice in supporting the needs of the carer and the person who is cared for and ensure this practice is shared.

We will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP.
  • Following the publication of the ‘Strategy for unpaid carers in Wales’ in March 2021, we will work with DOIIG members to support the work of the Carers’ Ministerial Advisory Group to draft a delivery plan for publication by autumn 2021. This delivery plan will take into account the existing DAP actions on ensuring carers’ needs assessments and access to respite care. Once the delivery plan is published there will be formal reporting against the plan’s actions. These reports will be taken to DOIIG for discussion, enabling us to focus where action is required. 
  • Reports received from the Carers’ Ministerial Advisory Group, including information on the use of the £3million provided in 2021-22 to support emergency respite care and the development of a short-breaks fund, will be shared with DOIIG for discussion, enabling us to focus where action is required. 

4.3 Mental health support

This will include general mental health, wellbeing and recognition of specialist skills that may be required to support people living with dementia for whom past trauma may resurface, and where memory and communication changes may require a different therapeutic approach. This will include consideration of social isolation and loneliness, delayed trauma, depression and anxiety. 

Currently this area can be mapped across to the following in the DAP:

Living as well as possible for as long as possible

  • Ensure health boards provide access to evidence-based psychosocial and pharmacological interventions in line with Matrics Cymru and other relevant guidance.

Increased need for support

  • Review the capacity of existing bereavement services and settings in which they are delivered to ensure that the differing needs of families and carers of those with dementia are being met.

We will report as part of this: 

  • Provide a summary of outcomes reported through the ICF funded projects, which are being matched to areas of the DAP. 
  • Support the role of the national bereavement steering group in taking forward the development of a national bereavement framework for Wales. As part of this work generic bereavement care standards will be produced and will be applicable to all organisations delivering bereavement support across Wales. 
  • Support an interim infrastructure to support the ongoing provision of psychological therapies, ensuring that the range of therapies available is strengthened, and that service user choice is embedded as routine practice across services. This work includes the systematic and robust review of the evidence tables that underpin Matrics Cymru.
  • Ensure that people living with dementia are considered as part of the work ongoing in developing guidance to support the role of community mental health services (will be reported through the actions included within the Together for Mental Health Delivery Plan 2019-2022).

Discrete actions within the Dementia Action Plan not included within work priorities for 2021 to 2022

Discrete actions within the DAP not included within work priorities for 2021/22. 

Captured below is a list of actions within the action plan which have not been explicitly listed against the priority areas for action. These actions will remain in the DAP. However, it is considered that these actions have either been completed, can be best addressed in other ways, or are being deprioritised to focus resources differently given the impact of the pandemic on people living with dementia. Ongoing reporting on these actions will be set out in future requests for updates against the DAP. However it is intended that reporting will concentrate on the priorities set out within this paper, to enable a greater degree of focus to be applied to the priorities. Detail on how work under these actions will continue to be captured is set out below.   

Raising awareness and understanding: 

  • Work with local authorities, local health boards and Public Health Wales so the needs of people living with dementia are considered as part of planning processes. 
  • Develop and undertake training designed to raise awareness amongst transport workers of the barriers that are encountered by those with dementia when using public transport. 

We will focus over this period on initiatives supporting the ‘Back to community life’ initiative led by Improvement Cymru and Cwm Taf Morgannwg health board and the ‘ Get there together project’ across the regions to encourage people to reengage with their community safely’ latter of which includes transport providers. 

Recognition and identification: 

  • Encourage GPs to take up the dementia component of the mental health Directed Enhanced Service (DES) introduced in 2017.
  • Ensure that primary care practices are able to evidence that they are dementia supportive. 

Implementation of these actions would be refocused and brought forward as part of all Wales dementia care standards work. 

Assessment and diagnosis 

  • Ensure compliance with the Welsh Government’s all Wales standards for accessible communication and information for people with sensory loss.
  • Scope a programme of work that will capture, record, share and flag the communication needs of service users with sensory loss.
  • Review and promote the all-Wales dementia helpline as a key source of information. 
  • Ensure every diagnosed person with dementia receives a tailored information pack in an accessible format, including, as needed, digital options, and is offered access to a dementia support worker or equivalent.

An update on progress on compliance with the Standards and the programme of work on sensory loss will be provided to DOIIG, however action over the next reporting period will focus on the recommendations resulting from the hearing loss and dementia work. 

Acknowledging that we now have a number of resources available through the implementation of the DAP we will be reviewing how we can bring together this work as part of a communications strategy. The all-Wales dementia helpline and the work on a tailored information pack will be considered as part of that work. 

Living as well as possible 

  • Develop an All Wales Dementia Allied Health Practitioner Consultant post who will give advice and support to health boards and local authorities to enable the delivery of person-centred care and drive forward service improvements.
  • Enable housing staff to have access to training to assist them to support people with dementia. (ongoing). 
  • Consider the relevant recommendations of the “Expert Group on Housing and Ageing Population” to inform future housing development. 
  • Review the housing aids and adaptations programmes to ensure that people are able to access appropriate and timely support. 
  • Ensure that relevant recommendations received from the National Independent Safeguarding Board are considered and embedded into policy development across Government and integrated into operational practice.

The All Wales Dementia Allied Health Practitioner consultant post has now been appointed and therefore the action to develop an All Wales Dementia Allied Health Practitioner consultant post is formally closed. An update for the remaining actions above will be provided to DOIIG in order to discuss whether action is modified or closed. 

The need for increased support

•    Further develop use of the new directed enhanced service for residential and nursing care homes.
•    Ensure that psychiatric liaison services are available to all general hospitals in Wales. 

An update for the action on the service for residential and nursing care homes will be provided to DOIIG in order to discuss whether action is modified or closed.

Psychiatric liaison services are available in all general hospitals in Wales and therefore this action is now closed.

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