Last reviewed 14 February 2017

With an estimated excess of 850,000 people with dementia in the UK and with numbers predicted to increase to over one million by 2025, early diagnosis, treatment and care have become even more critical. Last March, the then Prime Minister David Cameron outlined his vision in Challenge on Dementia 2020 — aspirations for England to become the world leader in dementia awareness, care and research. However, it has been acknowledged that a deeper insight into the reality of living well with dementia for carers and patients was needed, and the Department of Health (DH) designed a listening programme to gather people’s views and experiences. In this feature article, Deborah Bellamy, Primary Care Business Manager, explores how listening to people with dementia and their carers supports meeting some of the Challenge on Dementia 2020 objectives and outlines some other key developments.

The unambiguous message in the Prime Minister’s Challenge on Dementia 2020 is for England to be the best place in the world for people with dementia, their carers and families to live and for world leading research to be undertaken by 2020. It incorporates four themes.

  1. Risk reduction.

  2. Health and care.

  3. Awareness and social action.

  4. Research.

The document comprises over 50 commitments, with one of these visualising GPs taking the lead in ensuring continuity of care for people with dementia. This builds on the existing commitment, which began in April 2015, that all patients are required to have access to a named GP with overall responsibility for co-ordinating their care.

The need to engage with and involve more people with dementia has led to the DH launching the Listening Programme. The Government hopes this programme will: “help us to assess what difference the Dementia Challenge 2020 Implementation Plan is having and where further improvements to the delivery of services and support may be needed at a local level”.

The scheme aims to explore what it is like to live with dementia, the challenges faced and the experience of carers. Data will be gathered in a number of ways, both in person and online. The responses will be used to check how the current work of the Dementia 2020 is impacting those with dementia and their carers.

The Dementia 2020 Citizens’ Engagement Programme Survey was specifically designed for anyone in England diagnosed with dementia in the previous two years between November 2014 and November 2016, and for anyone who is an unpaid carer for either a family member or a neighbour within the same timeframe. There are also further group sessions planned for those for whom this survey is not appropriate.

The survey questions were devised with input from people with dementia, carers and other partner organisations. The scope of the programme covers the five key themes of the implementation plan.

  1. Health and care.

  2. Risk reduction.

  3. Dementia awareness and social action.

  4. Research.

  5. Continuing the UK’s global leadership role.

The first phase of the survey, which closed on 31 January 2017, encompassed topics such as: experience of how their diagnosis was made; the ensuing support received; and dementia awareness. These questions may have been completed online or there has been opportunity within local dementia groups to discuss the questions and feed the results back. Guidance was produced to support facilitation of such group sessions or one to one as appropriate. The project was keen to hear from diverse communities and others whose views are rarely heard.

All feedback will be reported back to the DH and data used to inform the 2018 Implementation plan. This should result in more targeted support, facilitate assessment of the Dementia 2020: Implementation Plan and a formal review in 2018.

There are many other developments, including the following.

  • A new vision and strategy for dementia nursing.

  • The Care Quality Commission (CQC) promoting inspections to local groups to gain more insight into dementia care.

  • New dementia resources being developed with Skills for Care.

  • Public Health England (PHE) is working on risk reduction.

  • NHS health check dementia pilots are being rolled out and with the expansion of Dementia Friends.

The nursing strategy Dementia Nursing: Vision and Strategy was published by the DH in September 2016 and outlines the role and responsibilities for those delivering care and support for people with dementia. It expands on how nurses can provide high quality, compassionate care and support to enable people with dementia to live well with dementia in all care settings, including a person’s own home, and achieve the best outcomes possible.

Each Clinical Commissioning Group (CCG) will receive a similar rating for the quality of the services it commissions in the following clinical areas: cancer, dementia, diabetes, mental health, learning disabilities and maternity. An annual assessment of these six areas will be moderated by an independent panel of experts for each area. A first simple assessment of all CCGs in these six areas was published in summer 2016. The DH and NHS England requested monthly dementia prevalence data from the Health and Social Care Information Centre (HSCIC) to enable the NHS mandate commitment to improve dementia diagnosis recording to be met, which comprises part of the NHS England business plan.

As well as the Dementia Profile tool, a CCG Improvement and Assessment Framework (CCGIAF) is being developed which, it is intended, will replace NHS England’s CCG assurance framework. Currently only quality ratings for individual providers are available, but for long-term conditions such as dementia, care is delivered by a range of providers. The CCGIAF aim is to drive continuous improvement of CCGs and be aligned to the Five Year Forward View.

In addition, the CQC is building partnerships with national organisations and engaging with community groups to improve access to the experiences of people with dementia. The CQC has promoted inspections to local dementia groups to obtain feedback about services and will continue to explore ways of hearing from a range of people living with dementia, encouraging contributions from local dementia groups, volunteers and carers. The Experts by Experience programme is being expanded which incorporates people in the early stages of dementia and their family and carers.

Working with Skills for Care, resources are being developed to support the social care workforce working with people with dementia from different cultures and backgrounds. The resource will focus on supporting people to obtain a diagnosis and to seek post-diagnosis support. It will be disseminated through Skills for Care’s networks.

There has been a launch of the new NHS Health Check Dementia Pilots involving PHE collaborating with Alzheimer’s Research UK and Alzheimer’s Society to extend the dementia risk reduction component of the NHS Health Check to all 40–64-year-olds at various sites. Currently, more than 250 GP practices are raising awareness about risk reduction among midlife patient groups.

Since 2013, over 1.6 million people have signed up to become a Dementia Friend, and there are now more than 150 dementia friendly communities in England alone. The Alzheimer’s Society hopes to achieve four million Dementia Friends by 2020 with goals to overcome the stigma around dementia.