Dementia action plan: progress update

The dementia action plan was first published in February 2018. The plan highlighted the vision to establish Wales as a dementia friendly nation, recognising the rights of people with dementia to feel valued and to live as independently as possible in their communities.

In 2021, we reviewed the plan to consider the impact of the coronavirus (COVID-19) pandemic on people living with dementia, their carers. and service provision. The review was undertaken by Welsh Government and members of the Dementia Oversight Implementation and Impact Group (DOIIG).

Following this review, we published the dementia action plan: strengthening provision in response to COVID-19, that reaffirmed priority areas for action which we are currently focusing on.

The Welsh Government now provides £12.7 million to Regional Partnership Boards (RPBs) every year to support the implementation of the dementia action plan and develop a joint health and social care approach to dementia support. RPBs were set up in 2016 to promote partnership working across health, social care, and the voluntary sector.

We have commissioned an independent evaluation to ensure that we learn lessons from the implementation of the current plan and use these to inform our future approach to dementia policy.

The interim report of the evaluation of the dementia action plan was published on 1 May 2024. The report summarises the findings from the initial phases of the evaluation of the dementia action plan 2018 to 2022, undertaken by Opinion Research Services (ORS) between 2019 and July 2023. The final full evaluation of the dementia action plan was published on 5 March 2025.

We are using the framework of the dementia care standards to ensure that our future plans build on the progress that we have made. We will also learn from the findings of our final evaluation.

We understand that involving stakeholders is essential, so we plan to engage with a wide range of people as we create our new plan. We're working with DOIIG to develop an engagement plan and agree the next steps. We will provide regular updates on how people can be involved in this work as we develop the new plan.

Person centred care

A major part of putting the plan into action has been creating an all-Wales dementia pathway of standards in 2021, which promote a whole systems integrated care approach. The standards were co-produced by:

• Improvement Cymru (now in the quality, safety and improvement division of the NHS Executive)
• Welsh Government
• members of DOIIG
• individuals living with dementia
• carers
• voluntary organisations
• NHS teams
• social care researchers
• Alzheimer’s Society Cymru
• Age Cymru
• many more third sector and partner organisations

The standards are supported nationally and regionally by the dementia national steering group and has 5 workstreams:

• community engagement
• memory assessment services
• dementia connector
• hospital charter
• workforce/measurement

Recent examples of the work of the Improvement Cymru dementia programme are available on the NHS Executive website.

It is a condition that the funding allocated to RPBs are aligned with the dementia care standards. All regions in Wales are advancing dementia care via the framework established to support the standards. The work being done consists of steering groups and workstreams connecting local programmes to the national approach.

For further information on the work of the dementia programme please contact PHW.ImprovementCymruDementia@wales.nhs.uk.

The dementia connector workstream has been focused on agreeing the role and function of the dementia connector to support its rollout across Wales. The purpose of the dementia connector post is to help ensure that people living with dementia and their carers will have a named contact (connector) to offer support, advice and signposting throughout their journey, from diagnosis to end of life.

From 2024, the Welsh Government has agreed an additional 2 posts per region to further expand this approach. The NHS Executive is working with Welsh Government and RPBs to ensure that this continues to be rolled out consistently.

Prescribing protocol for anti-psychotic medication

The protocol for the appropriate prescribing of antipsychotics for people living with dementia was published in February 2024 by the medicines strategy group. It was developed to guide best practice in the initiation, monitoring, review, tapering and stopping of antipsychotics, where they are prescribed for people living with dementia who express distress. It also provides advice to generalists and specialists on management of long-term prescribing of antipsychotics.

Brain health

There is increasing evidence that there are a number of modifiable risk factors across the whole lifespan that can support brain health. A new lancet report has been published which covers this in more detail.

A new guide to help reduce the risk of dementia has been published by Cardiff and Vale University Health Board. NHS Executive quality, safety and improvement division are working with the regions to consider how this source can be adapted for use.

Support for care homes

The diagnosing advanced dementia mandate (DiADeM) project aimed to raise awareness of advanced dementia and DiADeM assessment with relevant NHS and care home staff. The project develops and delivers appropriate training and education, and promotes the best management after dementia diagnosis.

The plan remains to promote and embed the roll out within the regional MAS workstreams with the aim of developing local partnership plans for adopting and supporting use of DiADeM within care homes.

Improved hospital care

The dementia friendly hospital charter for Wales launched in 2022. The Improvement Cymru hospital charter workstream is supporting regions across Wales with achieving the charter principles.

Empowering community action

In May 2024, the Reading Agency launched a new booklist for people affected by dementia. Reading Well for dementia, which is part of the Reading Well books on prescription programme, is free to access. In Wales, this work has been supported by Welsh Government.

Reading Well books are chosen through a robust selection process that includes policy and evidence mapping, needs analysis, and consultation with health experts and people with lived experience. The books are available and free for anyone to borrow from public libraries. They can be recommended by health and social care professionals and anyone else in a supporting role.

The list includes 21 titles (including an original Welsh language title), with essential information, personal accounts and practical advice, as well as age-appropriate books for children. The books are available in a range of formats including audiobooks and e-books. Titles from the list are also being translated into Welsh.

Alongside the books are a selection of recommended digital resources providing additional information. A partner toolkit has been produced containing information and resources to help you get the word out about the new Reading Well for dementia scheme.

Increasing the rate and timeliness of dementia diagnosis

Improving diagnosis rates and enabling the availability of diagnosis data remains a priority area. We have published guidance for health boards to assist with the recording of a diagnosis of dementia.

Colleagues in the NHS Executive Improvement Cymru and Digital Health and Care Wales (DHCW) are working with regions to support the standardised collection of primary care dementia register data. The aim of this work is to produce more regular diagnostic rates data.

This work is now progressing with a plan being developed for publishing this data. We remain committed to increasing the regularity of this information. In the meantime, we have annual data published through the general medical services contract (quality assurance and improvement framework) interactive dashboard.

Work is ongoing to develop a national community health clinical pathway that can support all General Practitioners in Wales with early detection, assessment and referrals.

To support a common approach to managing cognitive impairment (other than dementia) the memory assessment service workstream is developing a strategy that can offer guidance and consistency to practice.

Dementia modifying treatments

As research develops, more potential treatments for dementia are likely to come online and early accurate diagnosis will play a vital role.

We have therefore commissioned NHS Wales’ joint commissioning committee and the Royal College of Psychiatrists Wales to undertake a programme of work that looks to identify the support that specialists need to effectively diagnose people with Alzheimer’s disease early and deliver future treatments to those living with the condition.

The multi-disciplinary programme of work will look at exploring models of care which delivers diagnosis locally with a clear pathway into specialist care.

When the dementia action plan was published, a key action was to develop an all-Wales dementia allied health practitioner consultant post, that would provide advice and support to health boards and local authorities to drive forward service improvements.

Our consultant, Dr Natalie Elliott, now supports a wide range of partners, which includes managing a strong and established AHP dementia network for Wales. The network meets quarterly and has a quarterly newsletter.

The network has also launched a project register which has 21 entries to date. The aim of the register is to:

• document AHP dementia projects and ideas under development
• encourage collaboration
• develop and record best and emerging practice
• help us learn from each other
• encourage participation in improvement and research
• support dissemination of knowledge and spread/scale of practice
• build the AHP dementia care evidence base

Further information on the network is available by contacting sarah.mills2@wales.nhs.uk.

The network, alongside colleagues in Health Education and Improvement Wales, have created an Allied Health Professionals dementia framework for Wales. The framework outlines how AHPs can help people living with dementia, their carers, and supporters to remain as physically, cognitively and socially active for as long as possible. It helps them to live a life of quality following their dementia diagnosis. The framework also details:

• the AHP contribution to the brain health of the population
• reducing risk of developing dementia
• supporting people to access a differential and timely diagnosis

One of the priorities set out in the AHP dementia framework is co-production and collaboration. Through the network, members are encouraged to build co-production into their work and services. A co-production register was recently created to give people with lived experience a stronger role in the work of the network.

Anyone who joins the register will be invited to be part of co-production and engagement activities when opportunities arise. People invited to join the register can also include:

• people with mild cognitive impairment (MCI)
• people with dementia
• carers, family members or friends of people living with dementia

The register will be reviewed periodically to keep it up to date, and people can request to be removed at any time by contacting sarah.mills2@wales.nhs.uk.

There are 2 versions:

• one for professionals to complete on behalf of a person with lived experience
• one for people living with dementia, carers, and family members to complete

Get There Together

Get There Together is a national project to support people to access locations and services in their communities. It was designed with communities across Wales to support people living with dementia, but it could be used to help people with a variety of conditions.

Short videos act as digital stories to enable the user to view locations and services before visiting. This aims to lessen any anxiety, enabling people to prepare, and encouraging people to get out into their communities.

Initially, Get There Together resources were developed to support people to adjust to changes during the COVID-19 pandemic, with the aim to reassure anyone who was apprehensive about getting back out into their communities. We learnt through feedback and data on resource usage, that the videos are highly valued and continue to help people beyond the pandemic. Videos can be viewed on Dewis Cymru by searching for Get There Together videos.

A Get There Together app has also been developed. The app is free to download and is available in Welsh and English from Google Play and Apple Store. It allows users to view and save videos from a national library. Additionally, users and their supporters can create their own digital stories, with simple guided steps, to have personalised private content. A day planner enables multiple videos to be saved in a series to plan a day out. Furthermore, the app will enable users to access the content whilst out and about, which is something focus groups of people living with dementia expressed would be useful.

We are still developing videos to include in the national Get There Together library. We would be pleased to work with anyone interested in developing resources. Examples of content include:

• visiting libraries
• visiting GP practices
• visiting hospital wards
• finding your way to a hospital outpatient appointment
• visiting the community dental team
• getting a COVID-19 vaccination
• going for a walk around a local park
• going for a CT brain scan
• getting out for some fresh air
• looking around a hospice

If you have any ideas for content development that you’d like to discuss, please contact us at GetThere.Together.Cav@wales.nhs.uk.

We are keen to receive feedback from users and have included a survey on the app homepage.

You can download and share the Get There Together app now on:

• Android
• iOS (iPhone)

A key part of the dementia action plan is helping caregivers develop the skills to recognise symptoms early and feel confident in providing care and support.

Each region in Wales now has a dementia learning and development group that supports their workforce by developing and delivering quality learning development opportunities.

This is also supported by a national dementia and learning group, that sits under DOIIG. The national group is currently working to update the Good Work framework that was published in 2016. The revised version will provide additional support for practitioners to fully embed this practice. The aim is that a refreshed framework will be published alongside the new dementia plan for Wales.

Social Care Wales have previously worked with regions and people living with dementia to create a toolkit to help implement the vision set out by the framework. The toolkit is a simple, practical guide that organisations and partnerships can use to put the Good Work framework into practice.

Social Care Wales has a range of resources and advice on their website for social care staff who are supporting people living with dementia.