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Overview and statistics of UK dementia policy and services

Published Thursday, March 31, 2016

This Commons Library note examines policies in England to improve dementia diagnosis, care, support and research. Health is a devolved matter, and the note also briefly outlines dementia strategies in Scotland, Wales and Northern Ireland. It also provides statistics on rates of dementia, including data for each English Parliamentary constituency.

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Rates of dementia

There are around 800,000 people with dementia in the UK. This includes 676,000 people with dementia in England.

By 2040, the number of people with the condition is expected to double.

Improving diagnosis rates

Diagnosis rates for dementia have historically been low, meaning many people have not received appropriate treatment to manage their condition.

The Alzheimer’s Society found that only 48 per cent of people with dementia in England had a diagnosis, 64.8 per cent in Northern Ireland and 43.4 per cent in Wales.

In 2010/11, in England less than half (42 per cent) of those estimated to have dementia were being diagnosed. In February 2015, the Prime Minister Challenge on Dementia 2020 stated that this had risen to 59 per cent. In June 2015 the Secretary of State for Health said that 61.6 of people with dementia in England receive a diagnosis.

In March 2016, the National Clinical Director for Dementia said that the successful achievement of a diagnosis rate of 67% in England has now allowed conversations to move to post diagnostic support and beyond.

Costs

Dementia costs the economy in England £23 billion a year, more than the costs of cancer, heart disease or stroke. By 2040, predicted costs are expected to treble.

Recent research also estimated that by 2030, dementia will cost businesses more than £3 billion, due to increases in the numbers of people leaving employment to care for people with dementia.

Strategy for England

In February 2015, the Prime Minister published the successor to the 2012 challenge on dementia. The Prime Minister’s Challenge on Dementia 2020 focused on boosting research, improving care and raising public awareness about the condition in England.

The Government committed to invest over £300 million into research and medical innovation, in order to back the country’s science and medical sectors to lead the way in discovering the next big breakthrough.

Annual investment in research is expected to double by 2025.

Government objectives for 2020

The challenge sets a number of objectives that the Government wishes to see by 2020. These include:

  • Increased public awareness and understanding of the factors that increase the risk of developing dementia
  • Equal access to dementia diagnosis as for other conditions, with a national average for an initial assessment of 6 weeks following a referral from a GP
  • Every person diagnosed with dementia to have meaningful care following their diagnosis, in accordance with NICE Quality Standards
  • All NHS staff to have training on dementia appropriate to their role
  • All hospitals and care homes to become dementia friendly health and care settings
  • Alzheimer’s Society to deliver an additional 3 million Dementia Friends in England
  • Over half of people living in areas that are recognised as Dementia Friendly Communities
  • All businesses encouraged and supported to become dementia friendly
  • Funding for dementia research on track to be doubled by 2025
  • Cures or disease modifying therapies on track to exist by 2025
  • Increased numbers of people with dementia participating in research

The Government has highlighted the progress made since 2010 on improving dementia care, support and research with:

The Government’s Mandate to the NHS

The Government’s Mandate to the NHS for 2016-17 includes a number of specific objectives on dementia:

Overall 2020 goals: Measurable improvement on all areas of Prime Minister’s challenge on dementia 2020, including:

  • maintain a diagnosis rate of at least two thirds
  • increase the numbers of people receiving a dementia diagnosis within six weeks of a GP referral
  • improve quality of post-diagnosis treatment and support for people with dementia and their carers

2016-17 deliverables:

  • Maintain a minimum of two thirds diagnosis rates for people with dementia
  • Work with National Institute for Health Research on location of Dementia Institute
  • Agree an affordable implementation plan for the Prime Minister’s challenge on dementia 2020, including to improve the quality of post diagnosis treatment and support

Improving diagnosis rates

The Department of Health and NHS have implemented a number of policies to improve diagnosis rates. These include:

  • In May 2013, NHS England committed to the first ever national ambition to improve dementia diagnosis rates. The NHS set an ambition that by 2015 two thirds of people with dementia are recognised and given high-quality care and support by 2015. NHS England invested £90 million to achieve this target.
  • NHS England, in conjunction with Hardwick Clinical Commissioning Group (CCG), the Department of Health and the Royal College of GPs published a toolkit in July 2014 to aid health professionals in their diagnosis and management of patients with dementia.
  • In October 2014, NHS England announced that GPs would receive £55 for each patient they diagnosed with dementia and work with CCGs to provide a tailored care plan. The Dementia Identification Scheme ended on 31 March 2015.In March 2015, the Secretary of State for Health announced a “Dementia Discovery Fund” at the World Health Organization’s First Ministerial Conference on Global Action Against Dementia. The Government has said the Fund will receive investment of £130 million. The fund will finance dementia research and will include investment from the Government, Alxheimer’s Research UK and major pharmaceutical companies.

 The Dementia Discovery Fund

In March 2015, the Secretary of State for Health announced a “Dementia Discovery Fund” at the World Health Organization’s First Ministerial Conference on Global Action Against Dementia.

The Government has said the Fund will receive investment of £130 million. The fund will finance dementia research and will include investment from the Government, Alzheimer’s Research UK and major pharmaceutical companies.

Strategy for Scotland

The Proposal for Scotland's National Dementia Strategy 2016-19 sets out Scottish Government proposals on the major areas of policy and direction on dementia for the next three years, and will form the basis of Scotland's next three-year National Dementia Strategy which will be published later in 2016.

For further information is available from:

Post-diagnostic support

Everyone diagnosed with dementia from April 1, 2013 is entitled to a minimum of one year's worth of post-diagnostic support, coordinated by a Link Worker.

Improving Diagnosis of Dementia

Diagnosis of dementia is important as the diagnosis as the gateway to information, support, care and treatment for the person with dementia, their family and the carers. A target to increase the number of people with a diagnosis of dementia was delivered across Scotland.

It was replaced by a new standard to maintain the proportion of people with a diagnosis of dementia on the Quality and Outcomes Framework (QOF) dementia register and other equivalent sources.

Improving dementia care in general hospitals

The Chief Nursing Officer for Scotland is leading a programme of improvement activity with NHS Boards and others, into the care of older people, including those with dementia at any age, in general hospital care settings.

To complement this, Healthcare Improvement Scotland are undertaking a programme of inspections into these areas of care.

The Scottish Government is supporting Alzheimer Scotland in appointing a dementia specialist nurse in every NHS Board in Scotland, to advise on change and improvement across their Board area.

Standards of Care for Dementia in Scotland

People with dementia retain the same rights as anyone else in society but the nature of their illness means that they often have great difficulty in protecting their own rights.

There is still stigma and discrimination against people with dementia and they and their carers often feel, with some justification, that they are treated with less respect, dignity and understanding than other members of society.

Standards of Care for Dementia in Scotland were developed which relate to everyone with a diagnosis of dementia in Scotland regardless of where they live, their age, the supports they receive or the severity of their illness.

This includes younger people, people with a learning disability and people with rare types of dementia. They apply to people living in their own homes, care homes or hospitals, especially general hospitals.

Strategy for Wales

The Welsh Government has set an ambition to be a “dementia friendly nation” and has committed to providing support to people in Wales with dementia and their families.

Further information is available from:

In April 2015 the Minister for Health and Social Services announced his priorities for dementia in the year ahead and the steps the Welsh Government will take to support each of these.

The new plan for dementia in Wales includes:

  • A new target for health boards to improve dementia diagnosis rate to at least 50% by 2016
  • Funding for 32 new primary care support workers, who will provide face-to-face support, information and advice on accessing the right care and services for people diagnosed with dementia. They will also work in their local communities to raise awareness of dementia and help people with the disease to live longer in their communities
  • New funding for four additional primary care link nurses who will visit the 675 residential and nursing homes in Wales to provide training for staff about how to identify dementia, provide post-diagnosis support, link up with local GP services and advise how to make buildings more dementia-friendly
  • Increasing the number of people in Wales trained as dementia friends who are able to spot signs of the illness and help sufferers and create more dementia supportive communities. There are currently more than 9,800 dementia friends in Wales and 400 champions. The Welsh Government will provide funding for the next three years for the Alzheimer’s Society’s dementia friends campaign
  • Publishing a new guide on the steps people can take to reduce their risk of developing dementia
  • Encouraging more GP surgeries to take up Welsh Government-funded dementia training - to date 30% of GP practices in Wales have already completed the training, with virtually all of them subsequently agreeing a dementia lead and action plan.

Ministers are providing an extra £1m to support the new dementia policies, with £800,000 to fund the new primary care support workers.

This is in addition to:

  • the £130m invested in new elderly mental health facilities across Wales
  • funding for the Alzheimer’s Society to provide special patient information packs
  • supporting a free, 24-hour Wales Dementia Helpline
  • providing books on prescription about dementia in every public library

 

Strategy for Northern Ireland

The Northern Ireland Executive’s Dementia Signature Programme, Dementia Together NI, is operating for four years from 2013 to 2017. It is jointly funded by the Executive and The Atlantic Philanthropies, under the Delivering Social Change Framework, which aims to tackle poverty and exclusion in Norther Ireland.

The Programme is worth £6.25 million, with expenditure in 2016/17 expected to be in the region of £2.8m.

It aims to:

  • raise awareness, information and support for people living with a dementia
  • deliver training and development for those in the caring professions, both formally and informally
  • provide respite, short breaks and support for carers

For 2016-17, the programme will resource Dementia Navigators in each of the five Trusts and Dementia Champions throughout Northern Ireland.

The Office of the First Minister and Deputy First Minister provides further information:

Dementia Services Programme

The projects will address three key strategic themes:

  • awareness raising, information and support
  • training, including delirium
  • short-breaks, respite and support to carers

In addition to these three strands above, the programme will:

  • create a website providing information to public and professionals alike on dementia, including available services by locality and training
  • seek to identify 250-300 Dementia Champions. These will be key individuals within a dementia care setting with the skills, knowledge and understanding to enhance current practice
  • based on feedback from people with dementia and carers, create two Dementia Navigator posts in each Health and Social Care Trust. Staff in these roles will, as the title suggests, assist people with dementia and carers to ‘navigate’ their way through what can be a complex and daunting system. The Navigator will provide a point of contact, providing help and support at any stage throughout the individual’s care journey. The project team is working with colleagues across the statutory and voluntary sectors to promote greater collaboration between those who are engaged in providing this service. This will facilitate a more joined-up approach to service delivery.

Further information

On Monday 11 April from 2-3pm, the House of Commons has organised a digital debate on 'Dementia and Alzheimer's disease' with Jim Shannon MP.  They are encouraging the public to join in the debate and share their thoughts and experiences. The digital debate will take place on Twitter on the hashtag #AlzDebate.

The Twitter debate is intended to inform Jim Shannon's Westminster Hall debate on Dementia and Alzheimer's disease, on Tuesday 12 April from 09:30-11am.

Publication details

Commons Briefing papers SN07007

Authors: Elizabeth Parkin; Carl Baker

Topics: Diseases, Health finance, Health services, Health staff and professions, Mental health

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