Quality statement 7: Supporting carers

Quality statement

Carers of people with dementia are offered education and skills training. [2010, updated 2019]

Rationale

Family members and others caring for people with dementia often have high levels of stress due to the physical and mental challenges of caregiving, coping with other responsibilities, such as work or caring for children, health and mobility problems of their own, or financial issues. This affects their own physical and mental wellbeing. It is essential that informal carers have good support to enable them to manage the stresses and demands of caregiving and to fulfil their role. This includes both support for the specific challenges and practical tasks of caregiving, and support to address their own needs.

Quality measures

Structure

a) Evidence that education and skills training are available for carers of people with dementia.

Data source: Local data collection, for example, from service specifications or local protocols.

b) Evidence that education and skills training are tailored to the needs and preferences of carers of people with dementia.

Data source: Local data collection, for example, from service specifications or local protocols.

c) Evidence that support is available for carers to be able to attend training knowing that the person they care for will be safe and cared for.

Data source: Local data collection, for example, from service specifications.

Process

a) Proportion of carers of people with dementia who have a discussion about education and skills training.

Numerator – the number in the denominator who have a discussion about education and skills training.

Denominator – the number of carers of people with dementia.

Data source: Local data collection, for example, local audit of care plans for carers.

b) Proportion of carers of people with dementia who take part in education and skills training.

Numerator – the number in the denominator who take part in education and skills training.

Denominator – the number of carers of people with dementia.

Data source: Local data collection, for example, local audit of care plans for carers.

Outcomes

a) 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.

b) Carer-reported level of satisfaction with the tailoring of the support to their needs and preferences.

Data source: Local data collection, for example, a survey of carers of people with dementia.

c) 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.

What the quality statement means for different audiences

Service providers (such as general practices, local authorities, community care providers, secondary care services and the voluntary sector) provide training and support for carers of people with dementia and tailor this to the needs and preferences of the carer. They provide support so that carers can attend training knowing that the person they care for will be safe and well looked after.

Health and social care professionals (such as GPs, occupational therapists, community psychiatric nurses, psychiatrists, geriatricians, neurologists, clinical psychologists, practice nurses, hospital staff, Admiral nurses and social workers) have a discussion with carers of people with dementia about their needs and preferences for training and support. Based on this discussion, they help the carer to choose training and support that best suits them.

Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that training and support is available for carers of people with dementia. They specify that this should be tailored to carer's needs and preferences. They ensure that support is provided so that carers can attend training knowing that the person they care for will be safe and well looked after.

Carers of people with dementia talk about the training and support they need and would like. They are told about training and support that would meet their needs and preferences. They receive support so that they can attend the training knowing that the person they care for will be safe and well looked after.

Source guidance

Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.11.1

Definitions of terms used in this quality statement

Carers of people with dementia

A person who provides unpaid support to a partner, family member, friend or neighbour who has dementia and could not manage without this help. This is distinct from a care worker, who is paid to support people. A legal definition of a carer can be found in the Care Act 2014.

[Adapted from the Think Local, Act Personal care and support jargon buster]

Education and skills training

Training and support that includes:

  • education about dementia, its symptoms and the changes to expect as the condition progresses

  • developing personalised strategies and building carer skills

  • training to help them provide care, including how to understand and respond to changes in behaviour

  • training to help them adapt their communication styles to improve interactions with the person living with dementia

  • advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing

  • advice on planning enjoyable and meaningful activities to do with the person they care for

  • information about relevant services (including support services and psychological therapies for carers) and how to access them

  • advice on planning for the future.

The support should be:

  • tailored to their needs and preferences and to what they want it to achieve (for example, providing information on carer's employment rights for carers who work or want to work)

  • designed to help them support people living with dementia

  • available at a location they can get to easily

  • provided in a format suitable for them (for example, individual or group sessions, or online training and support)

  • available from diagnosis and as needed after this.

[NICE's guideline on dementia, recommendations 1.11.1 and 1.11.2]

Equality and diversity considerations

Offers of training and support for carers of people with dementia need to take account of any physical or mental health conditions, learning or physical disabilities that make it difficult to access training and support.