Quality Standards
Issued: April 2013
QS30

Quality standard for supporting people to live well with dementia

Introduction and overview

Introduction

Dementia is a term used to describe a collection of symptoms including memory loss, problems with reasoning and communication, and a reduction in a person's ability to carry out daily activities such as washing, dressing and cooking. The most common types of dementia are: Alzheimer's disease, vascular dementia, mixed dementia and dementia with Lewy bodies. Dementia is a progressive condition, which means that the symptoms will gradually get worse. This progression will vary from person to person and each will experience dementia in a different way – people may often have some of the same general symptoms, but the degree to which these affect each person will vary (Dementia Gateway, Social Care Institute for Excellence).

This quality standard covers supporting people to live well with dementia. It applies to all social care settings and services working with and caring for people with dementia. It should be read alongside the NICE dementia quality standard (QS1), which covers care provided by health and social care staff in direct contact with people with dementia in hospital, community, home-based, group care, residential or specialist care settings. The NICE dementia pathway presents the information from both quality standards in an integrated format (see the section How this quality standard fits into the NICE Pathway for details of how the statements fit into the pathway).

In 2012, the Prime Minister's challenge on dementia recognised the low rates of formal diagnosis of dementia, and services were tasked with improvements. While this work is underway, the quality standard for supporting people to live well with dementia should not be regarded as applying solely to people with a formal diagnosis of dementia. The support it advocates should be available for all people with cognitive impairment that could be linked to probable dementia. For more information see the scope.

NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing guidance, which provide an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

The quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following frameworks:

The table below shows the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving:

Adult Social Care Outcomes Framework 2013–14

Domain 1: Enhancing quality of life for people with care and support needs

Overarching measure

1A. Social care related quality of life

Outcome measures

People manage their own support as much as they wish, so that they are in control of what, how and when support is delivered to match their needs.

1B. Proportion of people who use services who have control over their daily life

Carers can balance their caring roles and maintain their desired quality of life.

1D. Carer-reported quality of life

People are able to find employment when they want, maintain a family and social life and contribute to community life, and avoid loneliness or isolation.

1I. Proportion of people who use services and their carers, who reported that they had as much social contact as they would like.

Domain 3: Ensuring people have a positive experience of care and support

Overarching measure

People who use social care and their carers are satisfied with their experience of care and support services.

3A. Overall satisfaction of people who use services with their care and support

3B. Overall satisfaction of carers with social services

3E: Improving people's experience of integrated care

Outcome measures

Carers feel that they are respected as equal partners throughout the care process.

3C. The proportion of carers who report that they have been included or consulted in discussions about the person they care for

People know what choices are available to them locally, what they are entitled to, and who to contact when they need help.

3D. The proportion of people who use services and carers who find it easy to find information about support

People, including those involved in making decisions on social care, respect the dignity of the individual and ensure support is sensitive to the circumstances of each individual.

This information can be taken from the Adult Social Care Survey and used for analysis at the local level.

NHS Outcomes Framework 2013–14

Domain 2: Enhancing quality of life for people with long term conditions

Overarching indicator

2 Health-related quality of life for people with long-term conditions

Improvement area

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition

Enhancing quality of life for carers

2.4 Health-related quality of life for carers

Enhancing quality of life for people with dementia

2.6 i Estimated diagnosis rate for people with dementia

2.6 ii A measure of the effectiveness of post-diagnosis care in sustaining independence and improving quality of life

Domain 4: Ensuring that people have a positive experience of care

Improvement area

Improving people's experience of integrated care

4.9 Indicator in development

Public Health Outcomes Framework 2013–16

Domain 4: Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, while reducing the gap between communities.

4.16 Estimated diagnosis rate for people with dementia

Overview

The Health and Social Care Act (2012) sets out a new responsibility for NICE to develop quality standards and other guidance for social care in England. The Act outlines a vision for establishing quality as the defining factor for health and social care, through the use of quality standards. The use of quality standards for health and social care can allow people to hold their local commissioners to account, can help guide the commissioning of efficient and effective services and can assist service providers and users to assess the quality of the services they are involved in.

Quality standards support the role of HealthWatch as a consumer champion. Social care providers will need to work with the NHS to ensure that they provide a comprehensive service for all.

From April 2013, NICE will develop a library of quality standards and guidance to improve the quality of social care, as part of an integrated approach with healthcare quality standards.

A person-centred and integrated approach to providing care and services is fundamental to delivering high-quality care for people with dementia.

The quality standard should be read in the context of national and local guidelines on training and competencies. All professionals involved in caring for and supporting people with dementia should be sufficiently and appropriately trained and competent to deliver the actions and interventions described in the quality standard.

The quality standard acknowledges the vital importance of involving carers of people with dementia. Services should consider how to ensure carers are involved in the implementation of each quality statement.