The Journal of Quality Research in Dementia Issue 7

Louise Lakey
Senior Policy Officer, Alzheimer's Society

Background

The National Dementia Strategy for England was announced in April this year by the Department of Health (DH). The five year vision aims to transform services for people with dementia and their carers. A framework for improvement has been laid out, identifying some of the challenges that must be overcome. It is intended to be used across the country and within organisations to drive change. The Strategy is not a blueprint for local services. Rather, it provides guidelines for local service providers to enable them to set priorities according to local needs.

The Strategy was developed in response to a growing evidence base on the effectiveness and quality of health and social care services available to people with dementia and their carers. In 2007 the National Audit Office concluded that despite significant investment in dementia, money was often spent on the later stages of dementia where services are more expensive. Their report also found that services were not delivering consistently or cost-effectively.

This evidence has resulted in a political commitment to set dementia as a health and social care priority, leading to the development of a National Dementia Strategy for England. The Strategy was developed by the DH in consultation with specialists in dementia including Alzheimer's Society staff, health and social care professionals, people with dementia and their carers. A draft Strategy was published in 2008 and was followed by a formal consultation period. Alzheimer's Society made a formal response, drawing on the views of 300 carers, 50 people with dementia, and a variety of other staff and volunteers.

The final Strategy

The final Strategy was published in February 2009. Although the substance of the Strategy remains the same, there have been some substantial additions and changes to the structure as recommended by the Society and other organisations. In particular, there is now more emphasis on the transformation of people's lives. The key message is that as a society we need to change the way we respond to dementia. This means putting people with dementia and their families in control of their lives and empowering them to live well with dementia.

The themes and objectives of the strategy

There are 17 objectives, which focus on four key areas for improving the quality of life for people with dementia and carers raising awareness and understanding, early diagnosis and support, living well with dementia and making the change (implementing the Strategy).

Objective 1: Public information campaign
A significant national awareness campaign is proposed that focuses on explaining what dementia is, the importance of diagnosis, help that is available, reducing stigma and promoting prevention. It suggests that local complementary campaigns should also be run.

Objective 2: Good quality early diagnosis and intervention
The Strategy proposes local commissioning of a good quality memory service which can provide early specialist diagnosis. Memory services might most appropriately be based in a community setting.

Objective 3: Good quality information
Good quality information should be available for people with dementia and their carers. A one year review of existing information is proposed, followed by the development and distribution of a set of good quality information on dementia and services. Information on local service provision should be tailored to that area.

Objective 4: A dementia adviser
Following diagnosis, all people with dementia should have access to a dementia adviser who can act as a point of contact for information and signposting to other services. The focus of work would be to help people with dementia to navigate the health and social care system. The DH proposes a series of demonstrator sites to examine which dementia adviser model works best and to evaluate impact on quality of life.

Objective 5: Peer support and learning networks
The Strategy proposes the development of peer support networks such as support groups and dementia cafes for people with dementia and their carers. The intention is to provide practical and emotional support, reduce social isolation and promote self help. The Strategy proposes a demonstration and evaluation programme to evaluate peer support activity.

Objective 6: Improved community personal support services
It is recommended that an appropriate range of services needs to be put in place to support people with dementia and their carers in their own homes, with a range of options available from early intervention to specialist services. A dedicated programme will establish an evidence base on which specialist services are effective.

Objective 7: Implementing the Carers' Strategy
It is recommended that unpaid carers need to be given access to a wide range of support to help them in caring for people with dementia. In particular work on the Carers' Strategy should focus on people with dementia and ensure that effective assessment, support and short breaks (respite) packages are available.

Objective 8: Improving care in hospitals
The Strategy proposes three key changes to dementia care practice in hospitals.

• Identifying a senior clinician who will be responsible for quality improvement in dementia.
• Developing an explicit agreed care pathway for people with dementia in hospitals, explaining how people with dementia will be cared for, by whom and in what way.
• The development of specialist older people's mental health liaison teams that can support staff throughout hospitals to care for people with dementia.

Objective 9: Improving intermediate care
Intermediate care services support people who have had a serious health incident. They allow these people to remain in their own homes without requiring hospital care, or to recover from a stay in hospital. Many intermediate care services currently wrongly exclude people with dementia. The DH will be issuing new guidance on intermediate care in 2009, with explicit reference to people with dementia.

Objective 10: Housing and telecare
People with dementia should be included in locally developed housing options and should be able to take advantage of assistive technology and telecare.

Objective 11: Improving care in care homes
The Strategy recommends a number of steps be taken to improve quality of care in care homes:

• A named senior member of staff should take the lead for improving quality of dementia care in every home.
• This senior staff member should develop a local strategy for management and care of people with dementia.
• Anti-psychotic medication should only be used when appropriate.
• Specialist in-reach services should be commissioned to provide specialist advice and guidance on improving care.
• Other in-reach services such as primary care, pharmacy, dentistry should be available.
• Specialist guidance for care staff on best practice in dementia care should be provided.

Objective 12: Improving end of life care
Palliative care at the end of life needs to be improved. This objective suggests the involvement of people with dementia in planning end of life care in keeping with the principles of the Mental Capacity Act. Local work on the End of Life Care Strategy needs to consider dementia. The Strategy proposes a programme of demonstration, piloting and evaluation projects to assist development of end of life care in dementia.

Objective 13: Workforce competencies, development and training
All health and social care staff involved in the care of people with dementia should have the skills to provide the best quality care to people with dementia and their families. The DH will work with representatives of all bodies involved in professional, vocational and continuing professional development to agree the core competencies required in dementia care. Those bodies will then consider how to adapt their curricula. Commissioners of services should specify dementia training as a requirement for service providers.

Objective 14: Joint local commissioning and World Class Commissioning
The Strategy recommends that local commissioning and planning mechanisms need to be established to determine how best to meet the needs of people with dementia and their carers. These should be informed by the Dementia World Class Commissioning guidance developed to support the Dementia Strategy.

The guidance on World Class Commissioning in Dementia is one of only five areas where guidance has been developed. This emphasises the importance of progress in relation to dementia and shows recognition of the challenges that commissioners face. This also complements the identification of dementia as a priority in the 2009/10 NHS Operating Framework, and the call for Strategy Health Authorities to monitor it. Primary Care Trusts (PCTs) and local authorities will be expected to work together to consider how they can improve dementia services.

Objective 15: Improved registration and inspection of care homes
Registration and inspection regimes should reflect the need for good quality dementia care. The Strategy includes a statement agreed with the Care Quality Commission setting out how they expect to regulate and inspect care homes.

Objective 16: Dementia research
The DH will work with the Medical Research Council to convene a summit of research funders and scientists interested in dementia research. This will be used to generate a plan for the development of dementia research in the UK.

Objective 17: National and local support for implementation
The DH will provide regional support to commissioners and providers implementing the Strategy to ensure progress.

What about funding?

£150 million of new funding is available during the first two years of Strategy implementation to support the transformation of dementia services. This funding is not ring-fenced for dementia services and local commissioners will decide whether and how to use it. However, this is not the only money available for improving services. Local commissioners also have other budgets that can be used for delivering the Strategy, such as money for the Carers' Strategy, End of Life Strategy and Putting People First.

Review of the use of anti-psychotics in all care settings

,p>Alongside the Strategy, the DH committed to completing a review of the prescription of anti-psychotic drugs to people with dementia in all care settings in England. Based on an analysis of evidence, the review will present ministers with recommendations for dealing with this issue. The DH has committed to completing this work by Spring 2009.

What does the Society think about the Strategy?

The Society believes that the Dementia Strategy represents the opportunity to change the lives of people with dementia and their carers for the better. If implemented within five years this plan could revolutionise the way we as a society respond to the challenge of dementia.

Implementation is a huge task and will require commitment from a large range of people across the health and social care field including commissioners, providers, charities, health and social care professionals and the government. The Strategy will require a transcending of existing boundaries between health and social care and the third sector, between service providers and people with dementia and carers. The pace of implementation will inevitably vary, depending on local circumstances and the level and development of services within each PCT and local authority.

The future: Pressing for change

Alzheimer's Society will be campaigning for implementation of the Dementia Strategy on both a national and local scale. We hope to influence politicians, opinion formers, NHS and social care commissioners, health and social care professionals and the public. We will seek to deliver implementation across the breadth of the recommendations in the Strategy.

The Society will continue to influence the political agenda at national and local levels to ensure all political parties commit to full implementation of the Strategy. The Society also has an important role to play in ensuring that commissioners understand the local priorities for people with dementia and their carers. Delivery on dementia provides a significant opportunity to encourage joint commissioning and an integrated approach towards providing community-based services.

In 2009 Alzheimer's Society is conducting a major research project into the quality of care of people with dementia in hospitals and is working with the All Party Parliamentary Group on Dementia to investigate the need for the development of the dementia social care workforce. These projects will improve the quality of care that people with dementia receive and will support and influence workforce development.

Developing the Society's services

We will be developing a range of services to improve quality of life for people with dementia and their carers. We are working closely with the new dementia adviser service to ensure people with dementia and their carers have the support they need. At a community level, we can provide peer support through dementia cafes and support groups.

The Society will continue to improve our own information services to ensure that people with dementia and their carers have access to clear, reliable information.

We will also continue to campaign for improved public awareness and for better understanding of dementia through research and education. Through our actions we strive to enable people to live well with dementia.