Minister gives update on dementia care in Wales

IN a written statement Lynne Neagle MS, Deputy Minister for Mental Health and Wellbeing has provided an update on dementia care in Wales.

The statement states:

“The coronavirus pandemic and the response to it, has had an impact on the health and wellbeing of people in Wales. This has often been felt most acutely by the most vulnerable members of society, including those people living with dementia and their families.  Access to and provision of services have been impacted as has the human contact with loved ones that we know is so important to people and families living with dementia. I am determined that we continue our drive toward the transformational step change in dementia support that Welsh Government is fully committed to.

My officials have been working closely with members of the Dementia Oversight and Implementation Group (DOIIG) to consider the impact of the pandemic and agree priorities to drive recovery. I thank the members of DOIIG for this work, which resulted in the Dementia Action Plan: Strengthening Provision in Response to COVID-19 document  which was published on 21 September 2021. A companion document to the Dementia Action Plan for Wales, it does not replace or create new actions, but will strengthen existing priorities where the pandemic has had a particular impact. The implementation of the action plan is supported by £9m being made available to Regional Partnership Boards (RPBs) to ensure that delivery is integrated across services and focuses on local needs.

Timely and accurate dementia diagnosis and recording is crucial to provision of the right care and support. The ‘Read codes’ guidance, which supports the recording of different sub-types of dementia, has been reissued and will facilitate the delivery of person centred services, responding to individual needs. In addition to the £9m referenced above a further £3m recurring investment has now been allocated to RPBs to support people during the assessment process. This will address the challenges of the pandemic faced by health boards, including the delivery of memory assessment services where in some health boards we have seen diagnosis waits of over 12 weeks.  Officials are working with health boards to ensure they use these extra resources effectively and to monitor impact.

It is vital that memory assessment services can be provided through the medium of Welsh. Welsh Government has commissioned Iaith: Welsh Centre for Language Planning with Bangor University to conduct research 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. This will ensure that two people with the same degree of cognitive impairment should achieve the same result from the test, irrespective of which language they are assessed using.

Recent calls for a National Dementia Data Observatory are entirely in line with our current policy intent. However we believe we can achieve the same outcomes by developing data standards and strengthening our links with academia. The data we establish on dementia assessment and support will be reported nationally and will be exposed to the same level of scrutiny as other NHS quality and performance data. Working with our Knowledge and Analytical Services, this operational data will also be supported by ongoing monitoring of published research and evidence. We also continue to engage routinely with our Royal Colleges and clinicians who play a key role promoting the latest evidence to inform policy.

The All Wales Dementia Care Pathway of Standards was published by Improvement Cymru in 2021, following extensive engagement with individuals living with dementia, carers, voluntary organisations and health and care professionals. The co-produced pathway promotes a whole systems integrated care approach with each regions dementia board having the standards as a core agenda for advancing dementia care locally. We have emphasised that all projects in receipt of Dementia Action Plan ICF funding will need to ensure their work aligns with the new standards. The readiness and implementation of the standards is being supported nationally and regionally by the Dementia National Steering Group and by five work streams, which are: community engagement, Memory Assessment Services, Dementia Connector, Hospital Charter and Workforce / measurement.

Welsh Government is taking a national and collaborative approach to offering FDG-PET scanning with the aim of increasing the effective and timely diagnosis of dementia.  FDG-PET is a highly useful imaging modality for the diagnosis of uncertain or difficult to diagnose primary neurodegenerative disorders.

In September 2021, the Royal College of Psychiatrists issued a case study of the utility of FDG-PET scanning to aid dementia diagnosis. This case study detailed a pilot project that was established by Aneurin Bevan University Health Board, supported by the Royal College and the Wales Research and Diagnostic PET Imaging Centre, in late 2019. The project aimed to benefit patients in the Gwent area, increasing earlier diagnosis and diagnostic rates for dementia, achieving more reliable diagnosis of dementia subtype, enabling earlier disease-specific treatment and access to psychosocial support and reduction of carer burden. This work is now bring scaled up, with the Welsh Health Specialised Services Committee commissioning FDG-PET scans for dementia nationally.

Research and development has a key role in improving dementia care. Cardiff University is one of six Universities leading research as part of the UK Dementia Institute, and is leading a major initiative launched in April last year which aims to help researchers worldwide to explore the risk factors that contribute to Alzheimers. It is vital that research in Wales contributes to wider efforts to address challenges that exist globally, and Welsh Government has invested in UK-wide NIHR programmes to support project level funding opportunities.

The “Ask Us About Dementia” service, supported by Social Care Wales and the National Consultant Allied Health Professional Lead for Dementia, provides advice and signposts to dementia care using telehealth. Carers can book a virtual appointment with experienced dementia practitioners who provide a range of knowledge and skills. Physiotherapy, speech and language therapy, occupational therapy, nursing, dietetics, pharmacy, dementia training are all represented in the project. The pilot has been co-produced with people living with dementia, care providers, third sector organisations and statutory bodies. Further pilot sites for referrals have been added and practitioners recruited, including a music therapist and a second occupational therapist.

Social Care Wales ran a series of bitesize learning events, these were open to those working in social care, health and family carers who have limited time for learning, with recordings of the sessions made available to workforce development officers across Wales.  They have also worked with Swansea University and the Developing Evidence Enriched Practice programme to run bitesize sessions for care homes to develop approaches to dementia learning and development. Dementia awareness sessions have also been provided to over 50 tutors and assessors across Wales. For those involved in dementia learning and development, there is also the Dementia Learning Co-ordinator Network which is a way to connect and share ideas and resources, including via Facebook.

Social Care Wales continue to host resources on their webpages for those working with people living with dementia, including a guide on delivering training virtually. In partnership with HEIW and Cofio dementia training they have also developed two short videos to support new entrants in the workforce to understand the principles of good dementia care.

The Dementia Learning and Development Group also continues to meet with a restructured work plan and priorities for 2022. The group is currently developing a toolkit to support the use of the Good Work Framework in approaches to learning and development across health and social care.

In 2021, a report from the Task and Finish Group on Dementia, Hearing Loss and Deafness on the links between dementia and hearing loss was published. Its 27 recommendations are currently being considered by officials, the Dementia Oversight of Implementation and Impact Group (DOIIG) and the Hearing Well Project Board and are in the process of being reviewed to ensure action is taken against them. As part of the work to address these recommendations Social Care Wales has established a working group to develop learning outcomes and a supporting framework, aligned to the Good Work and Development Framework.  This is due to report in summer 2022.

The National Consultant Allied Health Professional Lead for Dementia has also  supported ‘Get There Together’, which is a national project supporting people living with dementia to adjust to changes in their surroundings due to COVID-19 safety measures. A series of short films have been created to support people living with dementia and those who care for them to feel more confident visiting venues and services in Wales, aiming to lessen anxiety and reduce isolation.

The All Wales Dementia Friendly Hospital Charter is part of the dementia aspect of the Improvement Cymru work plan and is in line with our recovery priorities under improved hospital care. The aim of the charter is to support and drive quality improvement across our hospitals to support better care and experience for people living with dementia and their carer partners. As part of the work to implement the dementia care standards, we have been refining the charter and supporting resources with the regions before the final launch of the Dementia Friendly Hospital Charter in April 2022.

Rehabilitation is a core and integral component of care.  Health boards, local authority and third sector partners, are using the Welsh Government’s National Rehabilitation Framework to plan the rehabilitation services to respond to the needs of their populations, including people with dementia. The Content for a dementia reablement resource has been developed for those working with a reablement team and those who provide care in a person’s home post-reablement, particularly domiciliary care workers or allied health professionals in support roles. This joint Health Education and Improvement Wales (HEIW) and Social Care Wales digital resource is expected to be available by June 2022 and further information on the resource and how to access it will be published on the Social Care Wales website.

Whilst there have been many positive lessons from the way that services have worked together during the pandemic, it is important to acknowledge that life for people living in care homes, including individuals with dementia, has not returned to pre-pandemic conditions. Since 6 August 2021 Welsh Government visiting guidance has enabled people living in care homes to continue to receive indoor visits from an essential visitor during outbreaks. Welsh Government has now published Wales’ longer-term plan to live safely with coronavirus, ‘Together for a Safer Future’. This document sets out how Wales will move beyond the emergency response phase to managing Covid-19 alongside other respiratory infections and vaccine-preventable diseases. A separate document specific to the transition arrangements for social care services was published in March.

The evaluation of the Dementia Action Plan is continuing to assess its impact on dementia care and support in Wales.  The pandemic has had an effect on fieldwork in the evaluation but this has now recommenced. The report on this first phase of the evaluation is planned for publication in autumn 2022. The second phase will continue through 2022 and 2023, with publication of the final report planned for winter 2023.

The evaluation will inform the successor arrangements to the current Dementia Action Plan. It is clear that whilst services continue to work to address the challenges of the pandemic, there is a need to further embed the key priorities within the current plan. The companion document will act as a bridging plan whilst the priorities for the successor arrangements are identified.

As we continue to live with and adapt to Coronavirus I am hugely grateful for the efforts of health, social care and the third sector in supporting people living with dementia, their carers and families.

This statement is being issued during recess in order to keep members informed. Should members wish me to make a further statement or to answer questions on this when the Senedd returns I would be happy to do so.”