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Dementia is a progressive disease and is one of the foremost public health challenges worldwide. It is a disease associated mainly with older people.

The term ‘dementia’ describes a set of symptoms that include loss of concentration and memory problems, mood and behaviour changes and problems with communicating and reasoning. These symptoms occur when the brain is damaged by certain diseases (e.g. Alzheimer’s disease), the occurrence of a series of small strokes (vascular dementia) or the presence of other neurological conditions such as Parkinson’s disease.

People with dementia receive care in multitude of settings (such as their own home, care homes, primary care, planned care, urgent and emergency care). One of the priorities of the dementia programme is to work with systems to develop an integrated approach.

COVID-19

The COVID-19 pandemic has had a major impact on people with dementia. In 2020, according to the ONS dementia was the leading cause of non COVID death in the UK since Jan (increased by 52.2%). The impact of COVID was keenly felt because the social isolation and reduced access to care brought about by lockdown augmented pre-existing health inequalities for people with dementia and their carers. Also observed was an accelerated decline of people with known cognitive issues after contracting COVID). Less than 4% of people with dementia have an advanced care plan in place (according to the most recent research in 2013). There is a need for more research into this condition.

The COVID-19 pandemic has impacted significantly on the delivery of NHS services. We have an opportunity to learn from the rapid and necessary service transformation and consider how we recover our services.Dementia remains a diagnosis with significant impact with a need to balance the timeliness of diagnosis with patient experience and outcomes.

Primary care and memory services are both working to deliver services in extraordinarily challenging times. An initial webinar looked at the experiences of memory clinics, their capability for receiving referrals and undertaking assessments, the tools and tests available for making a diagnosis and the management of risk. Recent webinars have brought clinicians, service managers and commissioners together to consider factors affecting the dementia pathway in a Covid environment.

Programme areas

  • Raise and consolidate the profile of dementia with NHS England and with systems as ‘Everyone’s Business’. This presentation was prepared and delivered to ICS Mental Health Programme Boards.
  • Development of the Diagnosis Toolkit designed to support GPs, clinicians and carers to make a quality and timely diagnosis of dementia for care home residents – you can view the original Wessex one here, and the Thames Valley one here.
  • Hosting of regular Dementia webinars covering key topics aimed at all those with an interest in dementia and (older persons mental health). These webinars are usually recorded and can be viewed via this link.
  • Hosting of a new Dementia forum establishing a community of practice where challenges can be discussed freely. Invited to these forums are GP clinical leads, Mental Health (MH) Commissioners (with Dementia in their portfolio), senior clinicians from MH trusts, i.e. consultant psychiatrists and STP/ICS MH Leads
  • Facilitate a better understanding of what gains are possible in the Dementia Diagnosis Rate, with regular iterations and discussion of the Dementia Data Dashboard.
  • Development of a self-assessment tool for systems to understand the comprehensiveness of commissioned services along the length of the Dementia Pathway and supporting systems.

In partnership with the National Dementia Team, the South East Dementia Clinical Network developed guidance to support staff working in care homes and primary care staff including Primary Care Network leads to implement the Multi-Disciplinary Team approach to people with Dementia and older persons with a mental illness. This guidance can be found here.

Legacy

In the former Wessex, Hampshire Thames Valley and Kent Surrey Sussex geographies the following work was undertaken which is still relevant across the South East:

  • Wessex Health Lines – A web-based resource to allow the sharing of service improvements across Wessex, which can be viewed here.
  • TheraDEM training package – This innovative dementia medication training package was originally developed in 2018 by South East Clinical Networks (Kent, Surrey and Sussex) to support the upskilling of primary care clinicians in prescribing dementia drugs so dementia patients can be referred back into primary care at an earlier stage. It was developed in partnership with NHS Coastal West Sussex CCG and can be viewed here.
  • Kent Surrey Sussex Audit of Memory Assessment Services
  • Wessex Dementia Research – closing the gap between research and the implementation of evidence based healthcare practice, which can be viewed here.
  • Antipsychotic Prescribing for Dementia – a review in Wessex, which can be viewed here.
  • Younger Onset Dementia Services – this reflects a Wessex Dementia Strategy group discussion on Younger Onset Dementia care. Members of the group included local experts in the commissioning and delivery of dementia services, and this document sets out the background to the topic including data, challenges and opportunities, records the discussion and views of the group reflecting a range of expertise from a variety of organisations.
  • Modelling the dementia pathway in Wessex – This project demonstrated the use of patient level flow data to model current activity and create a simulation model for use in scenario planning in clinical service transformation at regional level, and can be viewed here.
  • A review of diagnostic imaging in Wessex – This report on the views of imaging practice was originally published in January 2020 and was analysed to highlight the development of dementia imaging services and evidence-based decision-making taking place across Wessex. This resource has been re-badged for South East Clinical Delivery and Networks and can be viewed here.
  • Dementia Diagnosis Toolkit – This toolkit was originally published in August 2018 by Wessex Mental Health Clinical Network to support the assessment process and appropriate timely diagnosis. It can also be used to rule out other conditions, provide an explanation to a person for their symptoms and allow them access to treatment and good post diagnostic support and care. It has been re-badged for South East Clinical Delivery and Networks and can be viewed here.

Resources

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