Quality statement 2: Choice and control in decisions

Quality statement

People with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.

Rationale

It is important to remember that people with dementia are often able to make decisions about their care and support. Choice and control in decisions can help ensure that the support provided reflects the preferences of people with dementia and helps them retain independence. If this is not possible, because of a decline in cognitive function and reduced capacity, services may need to provide additional support; input from carers or advocacy services may need to be sought to help with decision-making. When people with dementia lack capacity, decisions made on their behalf under the Mental Capacity Act 2005 should be made in line with the accompanying code of practice.

Quality measure

Structure:

a) Evidence of local arrangements to ensure that people with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.

b) Evidence that decisions made under the Mental Capacity Act 2005 on behalf of people with dementia are made in line with the code of practice that accompanies the Act.

Outcome:

a) Feedback from people with dementia that they have choice and control in decisions affecting their care and support.

b) Feedback from carers of people with dementia that the person they support has choice and control in decisions affecting their care and support.

What the quality statement means for each audience

People with dementia are involved in making choices and decisions about their care and support.

Carers of people with dementia are involved in supporting people with dementia to make choices and decisions about care and support.

Local authorities and others commissioning services work with providers to ensure the services they commission enable people with dementia, with the involvement of their carers, to have choice and control in decisions affecting their care and support.

Organisations providing care and support ensure people with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.

Social care and healthcare staff ensure people with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.

Source guidance

SCIE guide 15: Choice and control.

SCIE guide 47: Personalisation – a rough guide.

Data source

Structure: a) and b) Local data collection.

Outcome: a) and b) Local data collection.

Definitions

Carers

The Department of Health defines a carer as someone who provides unpaid support to family or friends who couldn't manage without this help, whether they're caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.

Decisions affecting care and support

This refers to decisions about the level and type of support provided, as well as personal decisions such as what to eat and when to go to bed. When people with dementia lack capacity, decisions made on their behalf under the Mental Capacity Act 2005 should be made in line with the accompanying code of practice.

Equality and diversity considerations

NICE clinical guideline 42 recommendation 1.1.1.7 lists alternative and additional support that may be needed if language or acquired language impairment is a barrier to accessing or understanding support.

Social care and healthcare staff should identify the specific needs of people with dementia and their carers arising from diversity, including gender, sexuality, ethnicity, age and religion. These needs should be recorded in care plans and addressed (NICE clinical guideline 42 recommendations 1.1.1.3 and 1.1.1.5).