Quality statement 4: Coordinating care
People with dementia have a single named practitioner to coordinate their care. [2010, updated 2019]
Dementia is a progressive condition with symptoms and care and support needs that change over time. People with dementia often have other long-term conditions, such as cardiovascular disease, diabetes, hearing loss and visual impairment, and many different practitioners might be involved in supporting their health and social care needs. To ensure that people with dementia experience person-centred care, it is important that there is a person responsible for supporting them through the disease course. The type of support needed will depend on the stage of dementia. During the earlier stages, this might be signposting to different services and support, whereas later it might be coordinating all aspects of their health and social care. The person with dementia can also develop and review a care and support plan with their named person.
a) Evidence of local arrangements to ensure that people with dementia have a single named health or social care practitioner to coordinate their care.
Data source: Local data collection, for example, service specifications.
b) Evidence of local agreement of the role and functions of the named practitioner.
Data source: Local data collection, for example, service specifications and job descriptions.
a) Proportion of people with dementia who have a named practitioner responsible for coordinating their care.
Numerator – the number in the denominator who have a named practitioner responsible for coordinating their care.
Denominator – the number of people with dementia.
Data source: Local data collection. An indicator was piloted and shown to be feasible by the NICE indicator programme. See NICE indicator NM64.
b) Proportion of people with dementia who have a care and support plan.
Numerator – the number in the denominator who have a care and support plan.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, local audit of patient records.
a) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.
b) Carer-reported quality of life of carers of people with dementia.
Data source: Local data collection, for example, a survey of carers of people with dementia. The Public Health England Dementia Profile includes data on carer-reported quality-of-life score for people caring for someone with dementia.
Service providers (such as dementia adviser services, local authorities, general practices, memory clinics, community old age psychiatry services and community care providers) ensure that systems are in place to identify and assign a single named practitioner to coordinate care for a person with dementia.
Health or social care practitioners (such as GPs, community psychiatric nurses, community matrons, psychologists, dementia advisers, occupational therapists or social workers) who are responsible for coordinating health and social care for a person with dementia get to know the person and their needs and preferences, and develop and review a care and support plan to ensure that services and care are delivered in a coordinated and timely manner.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that they commission services in which people with dementia are assigned a single named practitioner to coordinate their care. Commissioners make sure there is local agreement on the role and responsibilities of the person coordinating care.
People with dementia are told who in their care team has been chosen to coordinate their care and be their contact. They are given clear and up-to-date contact details for that person. The contact should keep the person and their family and carers at the centre of all decisions.
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.3.1
A single named health or social care practitioner who is responsible for coordinating care. The named practitioner should:
arrange an initial assessment of the person's needs, which should be face to face if possible
provide information about available services and how to access them
involve the person's family members or carers (as appropriate) in support and decision making
give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005
ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate
develop a care and support plan, and:
agree and review it with the involvement of the person, their family members or carers (as appropriate) and relevant professionals
specify in the plan when and how often it will be reviewed
evaluate and record progress towards the objectives at each review
ensure it covers the management of any comorbidities
provide a copy of the plan to the person and their family members or carers (as appropriate).
[NICE's guideline on dementia, recommendations 1.3.1 and 1.3.2]
Barriers to communication can hinder people's understanding of how they can be involved in their care. These barriers could include: mental health problems, learning or cognitive difficulties; physical, sight, speech or hearing difficulties; or difficulties with reading, understanding or speaking English. Adjustments should be made to ensure that all people with dementia can work with their named coordinator of care to plan their care, with access to an advocate if needed.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that, if needed, other ways of communicating (for example visual aids or simplified text) should be used.