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Dementia

Short Text

Supporting people with dementia and their carers in health and social care

Introduction

This pathway covers supporting people with dementia and their carers in health and social care.
Dementia is a progressive and largely irreversible clinical syndrome that is characterised by a widespread impairment of mental function. Although many people with dementia retain positive personality traits and personal attributes, as their condition progresses they can experience some or all of the following: memory loss, language impairment, disorientation, changes in personality, difficulties with activities of daily living, self-neglect, psychiatric symptoms (for example, apathy, depression or psychosis) and out-of-character behaviour (for example, aggression, sleep disturbance or disinhibited sexual behaviour, although the latter is not typically the presenting feature of dementia).
Dementia is associated with complex needs and, especially in the later stages, high levels of dependency and morbidity. These care needs often challenge the skills and capacity of carers and services. As the condition progresses, people with dementia can present carers and social care staff with complex problems including aggressive behaviour, restlessness and wandering, eating problems, incontinence, delusions and hallucinations, and mobility difficulties that can lead to falls and fractures. The impact of dementia on an individual may be compounded by personal circumstances such as changes in financial status and accommodation, or bereavement.
Included in this pathway are specific recommendations on Alzheimer's disease, dementia with Lewy bodies (DLB), frontotemporal dementia, vascular dementia and mixed dementias, as well as recommendations that apply to all types of dementia. Dementia in Parkinson's disease shares a number of similarities with DLB. Although the evidence base for dementia in Parkinson's disease was not examined specifically in the context of this guideline, the recommendations for DLB may be useful when considering treatments for dementia in Parkinson's diseaseFor other recommendations regarding the physical treatments for Parkinson's disease see the NICE pathway on Parkinson's disease..
Included in this pathway are recommendations for the identification, treatment and care of people with dementia and the support of carers. Settings relevant to these processes include primary and secondary healthcare, and social care. Wherever possible and appropriate, agencies should work in an integrated way to maximise the benefit for people with dementia and their carers.

Source guidance

The NICE guidance that was used to create the pathway.
Dementia. NICE clinical guideline 42 (2006)

Quality standards

Mental wellbeing of older people in care homes

These quality statements are taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice for mental wellbeing of older people in care homes and should be read in full.

Quality statements

Appropriately trained staff

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with dementia receive care from staff appropriately trained in dementia care.

Quality measure

Structure
Evidence of local arrangements to provide and maintain up to date dementia training for staff.
Process
Proportion of staff working with people with dementia who have dementia care training.
Numerator: the number of staff who are trained in dementia care.
Denominator: the number of staff working with people with dementia.

Description of what the quality statement means for each audience

Service providers ensure that all health and social care workers are appropriately trained in dementia care according to their roles and responsibilities.
Health and social care professionals who work with people with dementia ensure they receive training in dementia care consistent with their roles and responsibilities.
Commissioners ensure service providers have arrangements for training health and social care professionals in dementia care.
People with dementia can expect that the health and social care professionals who care for them will have dementia care training.

Data source

Structure
Local data collection. Contained within NICE CG42 audit support, criterion 9. Acute Trusts can collect data on dementia awareness training using the National Audit of Dementia organisational checklist, section 7.
Process
Local data collection.

Memory assessment services

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.

Quality measure

Structure
Evidence that memory assessment services specialising in the diagnosis and initial management of dementia are the single point of referral for people with a possible diagnosis of dementia.
Process
Proportion of people with suspected dementia who are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
Numerator: the number of people who are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
Denominator: the number of people with suspected dementia.

Description of what the quality statement means for each audience

Service providers ensure they offer a full range of services to aid diagnosis and initial management of dementia.
Health and social care professionals working with those with a possible diagnosis of dementia are aware of the process by which referrals can be made to the local memory assessment service.
Commissioners ensure all referrers can access memory assessment services for people with a possible diagnosis of dementia.
People receiving a possible diagnosis of dementia can expect to be referred to a memory assessment service.

Data source

Structure
Local data collection.
Process
Local data collection. Contained within NICE CG42 audit support, criterion 5.

Written and verbal information

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area.

Quality measure

Structure
Evidence of local arrangements to ensure written information on dementia is available to staff.
Process
Proportion of people newly diagnosed with dementia receiving written and verbal information about their condition, treatment and the support options in their local area.
Numerator: the number of people receiving written and verbal information about their condition, treatment and the support options in the local area.
Denominator: the number of people newly diagnosed with dementia.

Description of what the quality statement means for each audience

Service providers ensure that written information about dementia, treatment and local area support options is available to staff.
Health and social care professionals provide written and verbal information about dementia, treatment and local area support options once a diagnosis of dementia is established.
Commissioners ensure that services make available written information about dementia, treatment and local area support options.
People newly diagnosed with dementia can expect to be provided with written and verbal information about their condition, treatment and the support options in their local area.

Definitions

Written information for patients can be found in the Department of Health 'Who cares?' booklet. Information about NICE guidance, written specifically for patients can be found in 'Dementia: Information for the public' (NICE clinical guideline 42, 2006).

Data source

Structure
Local data collection. Acute Trusts, Primary Care Trusts and Mental Health Trusts can demonstrate processes for developing written information via NHS Litigation Authority Risk Management Standards 4, criterion 2.
Process
Local data collection.

Assessment and personalised care plan

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care, that identifies a named care coordinator and addresses their individual needs.

Quality measure

Structure
Evidence of local arrangements to ensure services are tailored to an individual's needs.
Process
a) Proportion of people with dementia whose individual needs are assessed and whose care plan states how those needs will be addressed.
Numerator: Number of people with an assessment of individual needs and a care plan addressing identified needs.
Denominator: Number of people with dementia
b) Proportion of people with a named health or social care coordinator.
Numerator: the number of people with a named health or social care coordinator.
Denominator: the number of people with dementia.

Description of what the quality statement means for each audience

Service providers ensure that protocols are in place to ensure that personalised care plans identify named care coordinators and address the individual needs of people with dementia.
Health and social care professionals ensure that personalised care plans identify a named care coordinator and address the individual needs of the person with dementia.
Commissioners ensure that services are commissioned that tailor interventions to the individual needs of a person with dementia.
People with dementia can expect to receive a care plan that identifies a named care coordinator and addresses their individual needs.

Definitions

'Individual needs' arise from:
  • Diversity, including gender, ethnicity, age (younger or older), religion and personal care.
  • Ill health, physical disability, sensory impairment, communication difficulties, problems with nutrition, poor oral health and learning disabilities.
  • The life story and preferences of people with dementia and their carer/s (where possible) including diet, sexuality and religion.
  • Maintaining independence.
  • Information needs.

Data source

Structure
Local data collection.
Process
a) Local data collection. Acute Trusts can collect data on the content of assessments using the National Audit of Dementia casenote audit, section 2.
b) Local data collection. Contained within NICE CG42 audit support, criterion 6.

Decision making

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of :

Quality measure

Structure
Evidence of local protocols on the discussion of advance decision making.
Process
Proportion of people with dementia, while they have capacity, and their carer/s, who are given the opportunity to discuss with health and social care professionals about the use of:
  • advance statements
  • advance decisions to refuse treatment
  • Lasting Power of Attorney
  • Preferred Priorities of Care.
Numerator: the number of people who are given the opportunity to discuss advance decision making.
Denominator: the number of people with dementia.
Numerator: the number of carers who are given the opportunity to discuss advance decision making.
Denominator: the number of carers of people with dementia.

Description of what the quality statement means for each audience

Service providers ensure staff are appropriately trained to provide information on advance statements, advance decisions to refuse treatment, Lasting Power of Attorney and Preferred Priorities of Care.
Health and social care professionals offer the person with dementia, whilst they have capacity, the opportunity to discuss and make decisions together with their carer/s about the use of:
  • advance statements
  • advance decisions to refuse treatment
  • Lasting Power of Attorney
  • Preferred Priorities of Care.
Commissioners ensure that local arrangements for assessment and care planning specifically include advance decision making.
People with dementia and their carers can expect the opportunity to discuss and make a decision on the use of advance statements, advance decisions to refuse treatment, Lasting Power of Attorney and Preferred Priorities of Care.

Data source

Structure
Local data collection.
Process
Local data collection.

Emotional, psychological and social needs of carers

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs.

Quality measure

Structure
Evidence that those carrying out a carers' assessment identify any emotional and psychological needs and the social impact on the carer and offer the carer psychological therapy, including cognitive behavioural therapy (CBT), if clinically appropriate.
Evidence that this is an ongoing process and includes any period after the person with dementia has entered residential care.
Evidence that care plans for carers of people with dementia involve a range of tailored interventions, which consist of multiple components including:
  • individual or group psychoeducation
  • peer-support groups with other carers, tailored to the needs of individuals depending on the stage of dementia of the person being cared for and other characteristics.
Process
a) Proportion of carers of people with dementia who are offered an assessment of their needs.
Numerator: the number of carers offered an assessment of their needs.
Denominator: the number of carers of people with dementia.
b) Proportion of carers of people with dementia receiving interventions tailored to their needs.
Numerator: the number of carers receiving interventions tailored to their needs
Denominator: the number of carers of people with dementia who have an agreed care plan.

Description of what the quality statement means for each audience

Service providers ensure that carers of people with dementia are offered an assessment of needs and receive tailored interventions to address any identified.
Health and social care professionals ensure that carers accepting an assessment of their needs receive a care plan containing a range of tailored interventions including:
  • Psychological therapy including CBT.
  • Psychoeducational programmes.
  • Peer support.
Commissioners ensure services offer a range of tailored interventions.
Carers of people with dementia can expect to be offered an assessment of their needs and tailored interventions to address any needs that are identified.

Data source

Structure
Local data collection.
Process
Local data collection. Contained within NICE CG42 audit support, criterion 3.

Non-cognitive symptoms and behaviour that challenges

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan.

Quality measure

Structure
a) Evidence that people with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity.
b) Evidence that individually tailored care plans, that help carers and staff address the behaviour that challenges, are recorded in the notes and reviewed regularly.
Process
a) Proportion of people with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, who receive an assessment to establish likely factors that may generate, aggravate or improve such distress or behaviour.
Numerator: the number of people who receive an assessment.
Denominator: the number of people with dementia who develop non-cognitive symptoms that cause them significant distress or who develop behaviour that challenges.
b) Proportion of people with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, with an individualised care plan identifying actions to address the distress or behaviour.
Numerator: the number of people with an individualised care plan identifying actions to address the distress or behaviour.
Denominator: the number of people with dementia who develop non-cognitive symptoms that cause them significant distress or who develop behaviour that challenges.
c) Proportion of people with dementia with mild-to-moderate non-cognitive symptoms who are prescribed anti-psychotic medication. (Goal to be 0% reflecting the Department of Health report on the use of anti-psychotic medication for people with dementia and its aim to reduce the use of anti-psychotic medication for people with dementia.)
Numerator: the number of people prescribed anti-psychotic medication.
Denominator: the number of people with dementia with mild-to-moderate non-cognitive symptoms.

Description of what the quality statement means for each audience

Service providers ensure that all people with dementia who develop non-cognitive symptoms that cause significant distress, or who develop behaviour that challenges, are given a comprehensive assessment.
Health and social care professionals working with people with dementia who develop non-cognitive symptoms carry out a comprehensive assessment. A behavioural and functional analysis should be conducted by health and social care professionals with specific skills, in conjunction with carers and care workers, and an individually tailored care plan should be developed to address the issues.
Commissioners ensure local service providers are adequately resourced and trained to undertake comprehensive assessment and management of people with non-cognitive symptoms of dementia.
People with dementia who develop non-cognitive symptoms that cause them significant distress or who develop behaviour that challenges can expect to be offered a comprehensive assessment at an early stage.

Definitions

The assessment must include:
  • the person's physical health
  • depression
  • possible undetected pain or discomfort
  • side effects of medication
  • individual biography, including religious beliefs and spiritual and cultural identity
  • psychosocial factors
  • physical environmental factors
  • behavioural and functional analysis conducted by professionals with specific skills, in conjunction with carers and care workers.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection. Contained within NICE CG42 audit support, criterion 8.
c) Local data collection. Acute Trusts can collect data on the main recorded reason for any prescription of antipsychotic medication using the National Audit of Dementia casenote audit, section 2 (however, the audit is not specific to people with mild-to-moderate non-cognitive symptoms).

Liaison services

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people's mental health.

Quality measure

Structure
Evidence of local arrangements to provide a liaison service specialising in the diagnosis and management of dementia and older people's mental health.
Process
Proportion of people with suspected or known dementia using acute and general hospital facilities that are assessed by a liaison service that specialises in the diagnosis and management of dementia and older people's mental health.
Numerator: the number of people who are assessed by a liaison service that specialises in the diagnosis and management of dementia and older people's mental health.
Denominator: the number of people with suspected or known dementia who are admitted to acute or general hospital inpatient services or attending emergency departments.

Description of what the quality statement means for each audience

Service providers ensure that a liaison service specialising in dementia and older people's mental health is available in acute and general hospital settings to assess inpatients and emergency department attendances with suspected or confirmed dementia.
Healthcare professionals working in acute and general hospital settings ensure they can access a liaison team that specialises in the diagnosis and management of dementia and older people's mental health.
Commissioners ensure provision of a liaison service specialising in dementia and older people's mental health to work across acute and general hospital settings to assess people with suspected or known dementia.
People with suspected or known dementia admitted to acute and general hospital settings or attending emergency departments can expect, if clinically appropriate, to receive an assessment by a liaison service specialising in dementia and older people's mental health.

Definitions

Local commissioning arrangements should decide the activity levels for the liaison service.

Data source

Structure
Local data collection. Acute Trusts can collect data on the composition of liaison teams using the National Audit of Dementia organisational checklist, section 9.
Process
Local data collection. Acute Trusts can collect data on referrals to liaison teams using the National Audit of Dementia casenote audit, section 4.

Palliative care needs

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.
January 2014. Following the independent review of the use of the Liverpool Care Pathway (LCP) for the dying patient and the subsequent announcement of the phasing out of the LCP, reference to the LCP has been removed from the health and social care professionals audience descriptor for this statement.

Quality statement

People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs.

Quality measure

Structure
Evidence of local arrangements for primary care teams to assess the palliative care needs of people in the later stages of dementia.
Process
Proportion of people in the later stages of dementia whose palliative care needs are assessed by primary care teams and the resulting information is communicated within the team and with other health and social care staff.
Numerator: the number of people whose palliative care needs are assessed by a primary care team and communicated within the team and with other health and social care staff.
Denominator: the number of people in the later stages of dementia.

Description of what the quality statement means for each audience

Service providers ensure that all people in the later stages of dementia have their palliative care needs assessed by primary care teams and that the needs are communicated to other health and social care staff.
Health and social care professionals ensure that people who are in the later stages of dementia have their palliative care needs met in accordance with the DH's End of Life Care Strategy. This includes use of appropriate tools and pathways including:
Commissioners ensure primary care teams are resourced and trained to provide palliative care for people with dementia.
People in the later stages of dementia can expect their palliative care needs to be assessed by their primary care team and for the results to be communicated to relevant staff.

Definitions

Later stages of dementia can be defined as those with an established diagnosis of moderate or more severe dementia.

Data source

Structure
Local data collection.
Process
Local data collection.

Respite services for carers

This quality statement is taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.

Quality statement

Carers of people with dementia have access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia.

Quality measure

Structure
Evidence that health and social care managers ensure that carers of people with dementia have access to a comprehensive range of respite/short-break services which meet the needs of both the carer and the person with dementia.
Process
Proportion of carers of people with dementia who access respite/short-break services when required.
Numerator: the number of carers accessing respite/short-break services.
Denominator: the number of carers of people with dementia requesting respite/short-break services.

Description of what the quality statement means for each audience

Service providers ensure that information is available to health and social care staff on the range of respite/short-break services available to carers of people with dementia.
Health and social care professionals ensure that carers of people with dementia are aware of the options available to them locally for respite/short-break services, and that access to such services is facilitated when needed.
Commissioners ensure a comprehensive range of local respite/short-break services are accessible and meet the needs of both carers and people with dementia.
Carers of people with dementia can expect to have access to a range of respite/short-break services which meet their needs.

Data source

Structure
Local data collection.
Process
Local data collection.

Discussing concerns about possible dementia

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise.

Rationale

Giving people the opportunity to discuss concerns about whether they, or someone they know, may have symptoms of dementia can help them make informed decisions about what steps they may want to take next.

Quality measure

Structure
Evidence of local arrangements to ensure people worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise.

Description of what the quality statement means for each audience

People worried about possible dementia in themselves or someone they know can discuss their concerns, and what having dementia confirmed might mean, with someone with knowledge and expertise.
Local authorities and others commissioning services work with providers to ensure the services they commission have people with knowledge and expertise who can discuss concerns, and the options of seeking a diagnosis, with people worried about possible dementia in themselves or someone they know.
Organisations providing care and support ensure staff with knowledge and expertise can discuss with people worried about possible dementia in themselves or someone they know concerns and the options of seeking a diagnosis.
Social care and healthcare staff with knowledge and expertise ensure they give people worried about possible dementia in themselves or someone they know the opportunity to discuss concerns and the options of seeking a diagnosis.

Source guidance

SCIE guide 15: Communication.

Data source

Structure
Local data collection.

Definitions

People with knowledge and expertise could include, but should not be limited to:
  • GPs
  • voluntary and community groups
  • care home managers
  • home care managers.

Equality and diversity considerations

Services should be aware of the special needs of younger people with dementia and people with learning disabilities (NICE clinical guideline 42 recommendation 1.1.2.1, 1.1.3.1 and 1.1.3.1).
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).

Choice and control in decisions

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

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.

Description of 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 are defined by the Department of Health 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 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).

Reviewing needs and preferences

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change.

Rationale

The needs of people with dementia will change as their circumstances change. It is important their care and support adapts quickly to changes in circumstances, and a review should be triggered when changes happen. This can help ensure that appropriate care is provided at the right time to enable people to continue to live well with dementia.

Quality measure

Structure
a) Evidence of local arrangements to ensure that people with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change.
b) Evidence that decisions made under the Mental Capacity Act 2005 about needs and preferences 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 participate in a review of their needs and preferences when their circumstances change.
b) Feedback from the carers of people with dementia that the person they support has their needs and preferences reviewed when their circumstances change.

Description of what the quality statement means for each audience

People with dementia take part in a review of their needs and preferences when their circumstances change.
Carers of people with dementia are involved in helping the person they support participate in a review of their needs and preferences when circumstances change.
Local authorities and others commissioning services work with providers to ensure the services they commission enable people with dementia to participate, with the involvement of their carers, in a review of their needs and preferences when circumstances change.
Organisations providing care and support ensure people with dementia participate in a review of their needs and preferences, with the involvement of their carers, when circumstances change.
Social care and healthcare staff ensure people with dementia participate, with the involvement of their carers, in a review of their needs and preferences when circumstances change.

Source guidance

NICE clinical guideline 42 recommendation 1.1.7.2.

Data source

Structure
a) and b) Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Carers are defined by the Department of Health 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.
Review of needs and preferences refers to the actions taken to re-examine the support needs and preferences of a person with dementia and assess whether existing support is still appropriate or needs altering to address unmet needs or changes in preference. It can also apply to re-examining needs and preferences of people not currently receiving support but for whom circumstances have changed.
When circumstances change refers equally to changes experienced by people with dementia and changes experienced by their carers. This includes, but is not limited to, changes in:
  • care and support needs
  • behaviour
  • mental health and wellbeing
  • preferences
  • personal circumstances.
When people with dementia lack capacity, review 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).

Leisure activities of interest and choice

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.

Rationale

It is important that people with dementia can take part in leisure activities during their day that are meaningful to them. People have different interests and preferences about how they wish to spend their time. People with dementia are no exception but increasingly need the support of others to participate. Understanding this and how to enable people with dementia to take part in leisure activities can help maintain and improve quality of life.

Quality measure

Structure
a) Evidence of local arrangements to find out about the individual interests and preferences of people with dementia in order to ensure access to leisure activities of interest.
b) Evidence of local arrangements to ensure that people with dementia are enabled to take part in leisure activities during their day based on individual interest and choice.
c) Evidence that when choices of activities during their day are made under the Mental Capacity Act 2005 on behalf of people with dementia who lack capacity, they are made in line with the code of practice that accompanies the Act.
Outcome
a) Feedback from people with dementia that they take part in leisure activities during their day based on individual interest and choice.
b) Feedback from the carers of people with dementia that the person they support takes part in leisure activities during their day based on individual interest and choice.

Description of what the quality statement means for each audience

People with dementia can choose to take part in leisure activities, during their day, which match their interests.
Carers of people with dementia are involved in helping the person they support to choose and take part in leisure activities, during their day, which match the interests of the person with dementia.
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 take part in leisure activities during their day based on individual interest and choice.
Organisations providing care and support ensure people with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.
Social care staff enable people with dementia, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.

Source guidance

NICE clinical guideline 42 recommendation 1.5.1.1.
SCIE guide 15: Choice and control.
SCIE guide 47: Personalisation – a rough guide.

Data source

Structure
a), b) and c) Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Enabled refers to actions taken by care providers to ensure that people with dementia can take part in leisure activities during their day. This includes, but is not limited to, finding out people's individual interests and preferences, providing daily activities and providing transport. 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.
Carers are defined by the Department of Health 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.
Leisure activities such as shopping, reading and listening to music should reflect the interests of the person with dementia. Leisure activities are pleasurable activities, rather than activities of daily living such as personal care and attending to hygiene.

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 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).

Maintaining and developing relationships

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.

Rationale

The ability to maintain and develop personal and social relationships is important for a person's wellbeing. It is important that people with dementia continue to have opportunities to engage with friends and family, and to develop new relationships.

Quality measure

Structure
Evidence of local arrangements to ensure that people with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.
Outcome
a) Feedback from people with dementia that they are enabled to maintain and develop relationships
b) Feedback from the carers of people with dementia that the person they support is enabled to maintain and develop relationships.

Description of what the quality statement means for each audience

People with dementia can continue to meet their friends and family and can make new relationships.
Carers of people with dementia are involved in helping the person they support to meet with their friends and family and make new relationships.
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 maintain and develop relationships.
Organisations providing care and support ensure people with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.
Social care staff enable people with dementia, with the involvement of their carers, to maintain and develop relationships.

Source guidance

NICE clinical guideline 42 recommendations 1.1.5.1 and 1.1.7.2.
SCIE guide 15: Social inclusion.
SCIE guide 15: Choice and control.
SCIE guide 47: Personalisation – a rough guide.

Data source

Structure
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Enabled refers to actions taken by care providers to ensure that people with dementia can maintain and develop relationships. This includes but is not limited to, providing transport to social events, and providing a suitable setting for friends and family to visit and socialise with people in residential care settings. People with dementia may face particular difficulties when engaging with others, such as communication difficulties, and may need skilled support to maintain and develop relationships. This could be provided by family and friends or paid staff. The skill lies in understanding the difficulties people have in engaging, and knowing how to address these.
Carers are defined by the Department of Health 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.
Relationships refers to ongoing contact with friends and family, and the opportunity to develop new social contacts beyond the immediate vicinity of the care facility or other accommodation.

Equality and diversity considerations

Social care 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).

Physical and mental health and wellbeing

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.

Rationale

People with dementia are not always in a position to seek help or advice about other issues that could be affecting their health and wellbeing. Therefore it is important that they are enabled to access services where routine screening and other assessments can take place.

Quality measure

Structure
Evidence of local arrangements to ensure that people with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.
Outcome
a) Feedback from people with dementia that they are enabled to access services that help maintain their physical and mental health and wellbeing.
b) Feedback from the carers of people with dementia that the person they support is enabled to access services that help maintain their physical and mental health and wellbeing.

Description of what the quality statement means for each audience

People with dementia can have routine check-ups of their physical and mental health and can see healthcare professionals when they have concerns.
Carers of people with dementia are involved in helping the person they support have routine physical and mental health check-ups and see healthcare professionals when they have concerns.
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 routine check-ups of their physical and mental health and see healthcare professionals when they have concerns.
Organisations providing care and support ensure people with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.
Social care and healthcare staff enable people with dementia, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.

Source guidance

NICE clinical guideline 42 recommendations 1.1.1.4 and 1.2.1.2.
SCIE guide 15: Pain management.
SCIE guide 15: Eating and nutritional care.

Data source

Structure
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Enabled refers to local protocols and the specific actions contained in those protocols that ensure people with dementia have routine check-ups of their physical and mental health and wellbeing, and have access to services when they have concerns about their physical or mental health.
Carers are defined by the Department of Health 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.
Services that help maintain physical and mental health and wellbeing include:
  • general practice
  • occupational therapy services
  • Admiral nurses
  • community palliative care
  • health promotion services, including smoking cessation
  • mental health teams
  • opticians
  • hearing therapists
  • dentists
  • chiropodists
  • physiotherapy services.

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).
NICE clinical guideline 42 recommendation 1.1.1.1 highlights that people should not be excluded from services because of diagnosis, age or coexisting learning disabilities.

Design and adaptation of housing

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia live in housing that meets their specific needs.

Rationale

Housing can be designed or adapted in a way that helps people with dementia manage their surroundings, retain their independence, and reduce feelings of confusion and anxiety.

Quality measure

Structure
a) Evidence of local arrangements to ensure that staff are trained to recognise when adaptations to housing can help meet the specific needs of people with dementia.
b) Evidence of local arrangements to ensure that new housing for people with dementia is designed to meet their specific needs.
Process
a) Proportion of people with dementia and receiving care at home whose housing has been adapted to meet their specific needs.
Numerator – the number of people in the denominator whose housing has been adapted to meet their specific needs.
Denominator – the number of people with dementia and receiving care at home.
b) Proportion of care homes designed or adapted to meet the specific needs of people with dementia.
Numerator – the number of care homes designed or adapted to meet the specific needs of people with dementia.
Denominator – the number of care homes with people with dementia.
c) Proportion of extra-care housing that has been designed or adapted to meet the specific needs of people with dementia.
Numerator – the number of extra-care housing units that have been designed or adapted to meet the specific needs of people with dementia.
Denominator – the number of extra-care housing units.
d) Proportion of sheltered housing that has been designed or adapted to meet the specific needs of people with dementia.
Numerator – the number of sheltered housing units that have been designed or adapted to meet the specific needs of people with dementia.
Denominator – the number of sheltered housing units.
Outcome
a) Feedback from people with dementia that their housing has been adapted to meet their specific needs.
b) Feedback from the carers of people with dementia that the person they support has had their housing adapted to meet their specific needs.

Description of what the quality statement means for each audience

People with dementia live in housing that is adapted to help them maintain their independence.
Carers of people with dementia are involved in helping to identify how the housing of the person they support may be adapted to help maintain their independence.
Local authorities and others commissioning services work with providers to ensure the housing they commission is designed or adapted to meet the specific needs of people with dementia and also commission services that can adapt the homes of people with dementia to better meet their specific needs.
Organisations providing care and support ensure housing is designed or adapted to meet the specific needs of people with dementia.
Social care staff ensure housing meets the specific needs of people with dementia.

Source guidance

NICE clinical guideline 42 recommendations 1.1.10.1, 1.1.10.2 and 1.1.10.3.
SCIE guide 15: Practical assistance.
SCIE guide 47: Personalisation – a rough guide.

Data source

Structure
a) and b) Local data collection.
Process
a), b), c) and d) Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Housing This statement applies equally to people with dementia receiving care in their own homes or living in residential or care homes.
Design and adaptation The design and adaptation of housing to help meet the needs of people with dementia could include changes to and use of:
  • lighting
  • colour schemes
  • floor coverings
  • assistive technology
  • signage
  • wide doorways
  • flat gardens, low-wall flower beds
  • glass-fronted cupboard doors in kitchens so people can see what is inside
  • memory cues
  • colour contrasts
  • minimising reflections and glare
  • notice boards.
Further suggestions are included in the King's Fund document Developing supportive design for people with dementia. Any adaptation should take into account the preferences of the person with dementia.
Extra-care housing There is some local variance in the specific features of extra-care housing. The National Dementia Strategy implementation group produced a commissioning guide for extra care housing and dementia which describes extra-care housing as including the following features:
  • Care and support available to occupants around the clock.
  • Sheltered housing, not residential care. Occupants live in their own homes, have security of tenure via assured tenancy or lease, and can determine who comes into their homes and who delivers their support plan.
  • Often purpose built to Home For Life standards, and often includes a range of communal facilities.
  • Some aspects of Extra Care such as housing design and management are covered by housing legislation, regulations and standards, and other aspects, for example, care provision, by the non-residential community care framework and care registration requirements.
Sheltered housing NHS Choices describes sheltered housing as including the following features:
  • Aimed at people over 60 years of age, although some schemes are available for over 55s.
  • Self-contained, purpose-built flats, houses or bungalows with their own front doors, kitchens and bathrooms.
  • Available for couples or single people and offering independent living with extra help if needed.
  • Run by scheme managers or wardens who may live on the site or work office hours. The scheme manager is there to help arrange suitable support for residents, to manage any repair work on the properties and to help out in emergencies.
  • Access to 24-hour emergency care assistance via an alarm system linked to a monitoring centre, which will contact a family member, GP or emergency service if needed.

Equality and diversity considerations

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).

Planning and evaluating services

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services.

Rationale

Person-centred services need to ensure that the people using them have opportunities to shape how services are delivered, what improvements should be made and how best to make those improvements.

Quality measure

Structure
Evidence of local arrangements to ensure people with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services.
Outcome
a) Feedback from people with dementia that they participate in the design, planning, evaluation and delivery of services.
b) Feedback from the carers of people with dementia that the person they support participates in the design, planning, evaluation and delivery of services.

Description of what the quality statement means for each audience

People with dementia are given the opportunity to be involved in and influence the design, planning, evaluation and delivery of services.
Carers of people with dementia help the person they support to participate in and influence the design, planning, evaluation and delivery of services.
Local authorities and others commissioning services work with providers to ensure the services they commission give people with dementia, with the involvement of their carers, opportunities to participate in and influence the design, planning, evaluation and delivery of services.
Organisations providing care and support ensure people with dementia are given, with the involvement of their carers, opportunities to participate in and influence the design, planning, evaluation and delivery of services.
Social care and healthcare staff ensure they give people with dementia, with the involvement of their carers, opportunities to participate in and influence the design, planning, evaluation and delivery of services

Source guidance

NICE clinical guideline 42 recommendation 1.2.1.2.
SCIE guide 15: Choice and control.

Data source

Structure
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Carers are defined by the Department of Health 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.
Participate and influence refers to people having opportunities to participate in initiatives and also being able to influence how the initiatives are delivered. For example, people with dementia should participate in a service evaluation, but also should have opportunities to influence how the evaluation is conducted and what aspects of a service are being evaluated and what a positive outcome should be.

Equality and diversity considerations

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).

Independent advocacy

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia are enabled, with the involvement of their carers, to access independent advocacy services.

Rationale

When significant decisions are being made concerning the current and future care of someone with dementia, it is important that they can access independent advocacy services if they are not fully able to present their own views.

Quality measure

Structure
a) Evidence of local arrangements to ensure that people with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
b) Evidence of proactive approaches to reach people with dementia who may have difficulty accessing advocacy services.
c) Evidence that people with dementia supported under the Mental Capacity Act 2005 are provided with access to advocacy in line with the code of practice that accompanies the Act.
Process
Proportion of people with dementia accessing independent advocacy services.
Numerator – the number of people in the denominator accessing independent advocacy services.
Denominator – the number of people with dementia.
Outcome
a) Feedback from people with dementia that they have been enabled to access independent advocacy services.
b) Feedback from the carers of people with dementia that the person they support was enabled to access independent advocacy services.

Description of what the quality statement means for each audience

People with dementia can have help from independent advocacy services to present their views.
Carers of people with dementia are involved in helping the person they support to access independent advocacy services to present their views.
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 access independent advocacy services.
Organisations providing care and support ensure people with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
Social care and healthcare staff ensure they enable people with dementia, with the involvement of their carers, to access independent advocacy services.

Source guidance

SCIE guides 31, 32, 39 and 41.
NICE clinical guideline 42 recommendation 1.1.4.2.
SCIE guide 15: Choice and control.
SCIE guide 47: Personalisation – a rough guide.

Data source

Structure
a), b) and c) Local data collection.
Process
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Enabled refers to local protocols and specific actions contained in those protocols that ensure people with dementia can access independent advocacy services.
Carers are defined by the Department of Health 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.
Independent advocacy services Action for Advocacy states 'Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and represent their views. Advocacy promotes social inclusion, equality and social justice.' This includes instructed advocacy and non-instructed advocacy for people who do not have capacity to instruct advocacy services on their own behalf. A non-instructed advocate seeks to uphold the person's rights; ensure fair and equal treatment and access to services; and make certain that decisions are taken with due consideration for all relevant factors, which must include the person's unique preferences and perspectives.
Independent advocacy services include, but are not limited to:
  • independent mental capacity advocates provided under the Mental Capacity Act 2005
  • relevant local user groups
  • charitable organisations.
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).

Involvement and contribution to the community

This quality statement is taken from the supporting people to live well with dementia quality standard. The quality standard defines best practice in supporting people to live well with dementia and should be read in full.

Quality statement

People with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.

Rationale

Giving people with dementia opportunities to be involved in and make a positive contribution to their community supports their ongoing independence, helps maintain their dignity and therefore can substantially improve their feelings of wellbeing.

Quality measure

Structure
Evidence of local arrangements to ensure that people with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.
Outcome
a) Feedback from people with dementia that they have been able to maintain and develop their involvement in and contribution to their community.
b) Feedback from the carers of people with dementia that the person they support has been able to maintain and develop their involvement in and contribution to their community.

Description of what the quality statement means for each audience

People with dementia can continue to be involved in and contribute to their community.
Carers of people with dementia are involved in helping the person they support to continue to be involved in and contribute to their community.
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 maintain and develop their involvement in and contribution to their community.
Organisations providing care and support enable people with dementia, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.
Social care staff enable people with dementia, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.

Source guidance

SCIE guide 15: Social inclusion.
SCIE guide 47: Personalisation – a rough guide.

Data source

Structure
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

Enabled refers to local protocols and specific actions contained in those protocols that make sure people with dementia are able to retain contact with their community. Examples of such actions include:
  • helping people to attend community events
  • helping people to take part in community activities
  • helping people to continue everyday activities such as going to shops that they enjoy shopping in
  • supporting people to participate as volunteers in community projects
  • promoting peer support and helping people with dementia to offer advice and pass on tips to those in a similar situation
  • supporting people to continue to vote if they wish to
  • helping people to participate in sponsored events and raise money for other causes
  • helping people to participate in intergenerational projects, for example, history projects and telling local school children about their experiences in years gone by or teaching children to knit
  • encouraging people to talk about their experience of having dementia to local groups, organisations or businesses, and raise awareness of how others can help.
Carers are defined by the Department of Health 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.

Equality and diversity considerations

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).

Participation in meaningful activity

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes are offered opportunities during their day to participate in meaningful activity that promotes their health and mental wellbeing.

Rationale

It is important that older people in care homes have the opportunity to take part in activity, including activities of daily living, that helps to maintain or improve their health and mental wellbeing. They should be encouraged to take an active role in choosing and defining activities that are meaningful to them. Whenever possible, and if the person wishes, family, friends and carers should be involved in these activities. This will help to ensure that activity is meaningful and that relationships are developed and maintained.

Quality measures

Structure
Evidence of local arrangements to ensure that older people in care homes are offered opportunities during their day to participate in meaningful activity that promotes their health and mental wellbeing.
Data source: Local data collection.
Outcome
a) Feedback from older people in care homes that they are offered opportunities to take part in activity during their day.
Data source: Local data collection. Adult Social Care Outcomes Toolkit. The following documents from the toolkit include questions about choice and control, social participation and involvement, occupation and dignity: CHINT3 care home interview schedule and CHOBS3 care home observation schedule.
The Personal Social Services Adult Social Care Survey (England). This survey collects data on service users’ views and opinions over a range of outcome areas, including satisfaction with social care and support and quality of life. Appendix F of this report provides a link to model questionnaires.
b) Feedback from older people in care homes that they have taken part in activity during their day that is meaningful to them.
Data source: Local data collection. Adult Social Care Outcomes Toolkit. The following documents from the toolkit include questions about choice and control, social participation and involvement, occupation and dignity: CHINT3 care home interview schedule and CHOBS3 care home observation schedule.
The Personal Social Services Adult Social Care Survey (England). This survey collects data on service users’ views and opinions over a range of outcome areas, including satisfaction with social care and support and quality of life. Appendix F of this report provides a link to model questionnaires.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care ensure that opportunities for activity are available and that staff are trained to offer spontaneous and planned opportunities for older people in care homes to participate in activity that is meaningful to them and that promotes their health and mental wellbeing.
Social care, health and public health practitioners ensure that they offer older people in care homes opportunities during their day to participate in spontaneous and planned activity that is meaningful to them and that promotes their health and mental wellbeing.
Local authorities and other commissioning services ensure that they commission services from providers that can produce evidence of activities that are undertaken within the care home and can demonstrate that staff are trained to offer spontaneous and planned opportunities for older people in care homes to participate in activity that is meaningful to them.

What the quality statement means for service users, family, friends and carers

Older people in care homes have opportunities during their day to take part in activities of their choice that help them stay well and feel satisfied with life. Their family, friends and carers have opportunities to be involved in activities with them when the older person wishes.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]
Meaningful activity
Meaningful activity includes physical, social and leisure activities that are tailored to the person’s needs and preferences. Activity can range from activities of daily living such as dressing, eating and washing, to leisure activities such as reading, gardening, arts and crafts, conversation, and singing. It can be structured or spontaneous, for groups or for individuals, and may involve family, friends and carers, or the wider community. Activity may provide emotional, creative, intellectual and spiritual stimulation. It should take place in an environment that is appropriate to the person’s needs and preferences, which may include using outdoor spaces or making adaptations to the person’s environment. [Adapted from SCIE guide 15, Choice and Control, Living well through activity in care homes: the toolkit (College of Occupational Therapists) and expert consensus]
Mental wellbeing
Mental wellbeing includes areas that are key to optimum functioning and independence, such as life satisfaction, optimism, self-esteem, feeling in control, having a purpose in life, and a sense of belonging and support. [Adapted from the Mental health improvement programme, background and policy context (NHS Health Scotland)]

Equality and diversity considerations

Staff working with older people in care homes should identify and address the specific needs of older people arising from diversity, including gender and gender identity, sexuality, ethnicity, age and religion.
When tailoring activities to the needs and preferences of older people, staff should be aware of any learning disabilities, acquired cognitive impairments, communication and language barriers, and cultural differences. Staff should have the necessary skills to include people with cognitive or communication difficulties in decision-making (from Dignity in care [SCIE guide 15]: Choice and control). Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life.
When collecting feedback from older people about whether they have been offered opportunities for meaningful activity, staff should consider using alternative methods for older people who find it difficult to provide feedback. For example, tools such as Dementia Care Mapping can be used, and/or feedback from people who are considered suitable to represent the views of the older person, such as family members, carers, or an advocate.

Personal identity

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes are enabled to maintain and develop their personal identity.

Rationale

It is important that staff working with older people in care homes are aware of the personal history of the people they care for and respect their interests, beliefs and the importance of their personal possessions. Older people should be involved in decision-making and supported and enabled to express who they are as an individual and what they want. They should be able to make their own choices whenever possible. Enabling older people to maintain and develop their personal identity during and after their move to a care home promotes dignity and has a positive impact on their sense of identity and mental wellbeing.

Quality measures

Structure
Evidence of local arrangements to ensure that older people in care homes are enabled to maintain and develop their personal identity.
Data source: Local data collection.
Outcome
Feedback from older people in care homes that their personal identity is respected.
Data source: Local data collection. Adult Social Care Outcomes Toolkit. The following documents from the toolkit include questions about choice and control, personal cleanliness and comfort, social participation and involvement, occupation and dignity: CHINT3 care home interview schedule and CHOBS3 care home observation schedule.
The Personal Social Services Adult Social Care Survey (England). This survey collects data on service users’ views and opinions over a range of outcome areas, including satisfaction with social care and support and quality of life. Appendix F of this report provides a link to model questionnaires.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care work to embed a culture built on dignity and choice in care homes and ensure that staff are trained to work in partnership with older people in care homes in order to enable them to maintain and develop their personal identity.
Social care, health and public health practitioners work with older people in care homes to tailor support and opportunities to their needs and preferences, with the aim of maintaining and developing their personal identity.
Local authorities and other commissioning services ensure that they commission services from providers that can produce evidence of the actions they have taken to embed a culture of dignity and choice, and that staff are trained to work in partnership with older people in care homes in order to enable them to maintain and develop their personal identity.

What the quality statement means for service users

Older people in care homes are given support and opportunities to express themselves as individuals and maintain and develop their sense of who they are.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]

Enabled

‘Enabled’ refers to actions taken by staff working with older people in care homes to ensure that older people can maintain and develop their personal identity. This may include using life history to tailor support and opportunities to the needs and preferences of the individual. Staff should ensure that older people are able to choose their own clothes, have their most valued possessions with them and choose where to sit while they are eating. It may be necessary to adapt the older person’s environment and provide access to outdoor spaces. Staff should facilitate social inclusion by promoting and supporting social interactions and access to social networks, involvement with the community, and existing and new relationships. [Adapted from Dignity in care (SCIE guide 15), Choice and control and Social inclusion, and expert consensus]
Personal identity
This refers to a person’s individuality, including their needs and preferences, and involvement in decision-making in all aspects of their life. Maintaining a sense of personal identity can involve using life history to maintain and build a meaningful and satisfying life, as defined by the person themselves. Central to personal identity is the feeling of having a purpose in life, feeling valued, having a sense of belonging and a feeling of worth. Relationships, including those with family, carers and friends, are an important aspect of a person’s identity and can have a significant impact on mental wellbeing. An individual’s personal identity may change as their circumstances alter. [Adapted from Personalisation: a rough guide (SCIE guide 47), My Home Life: Promoting quality of life in care homes, ‘Voice, choice and control’ in care homes (Joseph Rowntree Foundation); and expert consensus]

Equality and diversity considerations

Staff working with older people in care homes should identify the specific needs arising from diversity, including gender and gender identity, sexuality, ethnicity, spirituality, culture, age and religion.
When ensuring that older people are enabled to maintain and develop their personal identity be aware of any learning disabilities, acquired cognitive impairments, communication or language barriers or cultural differences. Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life.
When collecting feedback from older people about whether they have been enabled to maintain and develop their personal identity staff should consider using alternative methods for older people who find it difficult to provide feedback. For example, tools such as Dementia Care Mapping can be used, and/or feedback from people who are considered suitable to represent the views of the older person such as family members, carers, or an advocate.

Recognition of mental health conditions

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes have the symptoms and signs of mental health conditions recognised and recorded as part of their care plan.

Rationale

Mental health conditions are highly prevalent among older people in care homes, but are often not recognised, diagnosed or treated. Ageing with good mental health can make a key difference in ensuring that life is enjoyable and fulfilling. The recognition and recording of symptoms and signs of mental health conditions by staff who are aware of the role of the GP in the route to referral can help to ensure early assessment and access to appropriate healthcare services.

Quality measures

Structure
Evidence of protocols to ensure that staff are trained to recognise the symptoms and signs of mental health conditions in older people, and record them in their care plan.
Data source: Local data collection.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care ensure that staff are trained to be alert to the symptoms and signs of mental health conditions in older people in care homes and to record them in a care plan.
Social care, health and public health practitioners look for symptoms and signs of mental health conditions and record them in the older person’s care plan.
Local authorities and other commissioning services commission services from providers that can produce evidence of protocols for training staff to be alert to the symptoms and signs of mental health conditions in older people in care homes and to record them in a care plan.

What the quality statement means for service users

Older people in care homes are cared for by staff who recognise the symptoms and signs of mental health conditions (such as depression and anxiety) and record them in their care plan.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]
Mental health conditions
These include common mental health conditions such as depression, generalised anxiety disorder and social anxiety disorder, and may also include dementia and delirium. People may have more than one mental health condition at a given time. (See the NICE guidelines on dementia (NICE clinical guideline 42), depression in adults (NICE clinical guideline 90), depression in adults with a chronic physical health problem (NICE clinical guideline 91), delirium (NICE clinical guideline 103), common mental health disorders (NICE clinical guideline 123) and social anxiety disorder (NICE clinical guideline 159) for more information.)
Recognised
Recognised in this context relates to staff observing and recognising the symptoms and signs of mental health conditions, and sharing information and concerns with healthcare professionals, including GPs. Staff should be continually alert to new or worsening symptoms and signs. Observation of behaviour should happen on an ongoing basis and in response to the presentation of relevant symptoms. [Expert consensus]
Trained staff
This refers to staff who have been trained to recognise and record the symptoms and signs of mental health conditions when caring for older people. Staff should be alert to the presentation of new symptoms and signs and aware of existing conditions. Staff should also be competent in recognising when older people need a referral for assessment and management of the mental health condition. [Expert consensus]

Equality and diversity considerations

When looking for symptoms and signs of mental health conditions, be aware of any learning disabilities, acquired cognitive impairments, communication and language barriers, sensory impairment and cultural differences. Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life.
It is important that staff are aware that older people in care homes have the same right to access healthcare as people living independently in the community. This is stated in the NHS Constitution.

Recognition of sensory impairment

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes who have specific needs arising from sensory impairment have these recognised and recorded as part of their care plan.

Rationale

Mild but progressive sight and hearing losses are a common feature of ageing and may go unnoticed for some time, but can have a serious effect on a person’s communication, confidence and independence. The recognition and recording of needs arising from sensory impairment by staff who are alert to the symptoms and signs and aware of the role of the GP in the route to referral can help to ensure early assessment and access to appropriate healthcare services. For older people in care homes this is essential to improve their quality of life and avoid isolation, which can have a detrimental effect on mental wellbeing.

Quality measures

Structure
Evidence of protocols to ensure that staff are trained to recognise specific needs arising from sensory impairment in older people, and record these needs as part of their care plan.
Data source: Local data collection.
Process
Proportion of older people in care homes who have regular sight tests.
Numerator – the number of people in the denominator who have had a sight test within the past 2 years.
Denominator – the number of older people in care homes.
Data source: Local data collection.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care ensure that staff are trained to be alert to specific needs arising from sensory impairment in older people in care homes and to record them in a care plan.
Social care, health and public health practitioners are alert to and recognise specific needs arising from sensory impairment in older people in care homes and record them in their care plan.
Local authorities and other commissioning services commission services from providers that can produce evidence of protocols for training staff to be alert to specific needs arising from sensory impairment in older people in care homes and to record them in a care plan.

What the quality statement means for service users

Older people in care homes are cared for by staff who recognise needs that occur because of sight or hearing problems and record these as part of their care plan.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]
Recognised
Recognised in this context relates to the recognition by staff working with older people in care homes of the needs arising from sensory impairment and the sharing of information with healthcare professionals, including GPs. Staff should be continually alert to new and existing needs. This should involve monitoring of existing impairments and recognition of new sensory impairments. This is likely to include ensuring regular sight and hearing checks are arranged, cleaning glasses, and changing hearing aid batteries, or referral to an appropriately trained professional. [SCIE research briefing 21 and expert consensus]
Regular sight test
Adults are normally advised to have a sight test every 2 years. However, in some circumstances, the ophthalmic practitioner may recommend more frequent sight tests, for example in people who:
  • have diabetes
  • are aged 40 or over and have a family history of glaucoma
  • are aged 70 or over. [NHS Choices]
Sensory impairment
Sensory impairment most commonly refers to sight or hearing loss. It includes combined sight and hearing loss, which is frequently referred to as dual sensory impairment or deafblindness. [Adapted from Basic Sensory Impairment Awareness (NHS Education for Scotland) and Social care for deafblind children and adults (Department of Health)]
Trained staff
This refers to staff who have been trained to recognise and record the symptoms and signs of sensory impairment when caring for older people. Staff should be aware that there are many different types of sight and hearing loss, with a large variation in the degree of impairment. Staff should also be competent in recognising when older people need a referral for assessment and management of the sensory impairment. [Expert consensus]

Equality and diversity considerations

Sensory impairment is common in older people. It is frequently perceived as an expected feature of ageing rather than as potentially disabling. It is important that sensory impairment is not considered as acceptable for older people in care homes. This may need to be emphasised during training to increase awareness and recognition of sensory impairments.
When looking for signs or symptoms of sensory impairment, be aware of any learning disabilities, acquired cognitive impairments, communication and language barriers, and cultural differences. Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life
It is important that staff are aware that older people in care homes have the same right to access healthcare as people living independently in the community. This is stated in the NHS Constitution.

Recognition of physical problems

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes have the symptoms and signs of physical problems recognised and recorded as part of their care plan.

Rationale

Physical problems can cause discomfort and affect activities of daily living, participation in social activities and independence, and therefore mental wellbeing. The recognition and recording of the symptoms and signs of physical problems by trained staff who are aware of the role of the GP in the route to referral can help to ensure early assessment and access to appropriate healthcare services. This is essential to improve the quality of life and mental wellbeing of older people in care homes.

Quality measures

Structure
Evidence of protocols to ensure that staff are trained to recognise the symptoms and signs of physical problems in older people in care homes, and record them as part of their care plan.
Data source: Local data collection.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care ensure that staff are trained to be alert to symptoms and signs of physical problems in older people in care homes and to record them in a care plan.
Social care, health and public health practitioners look for symptoms and signs of physical problems in older people in care homes and record them in their care plan.
Local authorities and other commissioning services commission services from providers that can produce evidence of protocols for training staff to be alert to the symptoms and signs of physical problems in older people in care homes and to record them in care plans.

What the quality statement means for service users

Older people in care homes are cared for by staff who recognise the symptoms and signs of physical problems (such as pain, dizziness, problems with walking, constipation and continence problems) and record them in their care plan.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]
Physical problems
Examples of physical problems that could potentially affect a person’s wellbeing include, but are not limited to:
  • joint and muscular pain
  • undiagnosed pain
  • incontinence
  • dizziness
  • constipation
  • urinary tract infection
  • reduced ability to move without support
  • unsteady gait. [Expert consensus]
Recognised
Recognised in this context relates to the recognition by staff working with older people in care homes of physical problems and the sharing of information with healthcare professionals, including GPs. Staff should be continually alert to new physical problems and should monitor existing physical problems. [Expert consensus]
Trained staff
Trained staff refers to staff who have been trained to recognise and record the symptoms and signs of physical problems when caring for older people. Staff should be alert to the presentation of new symptoms and competent in recognising when older people need a referral for assessment and management of physical problems. [Expert consensus]

Equality and diversity considerations

When identifying an older person’s needs arising from physical problems, be aware of any learning disabilities, acquired cognitive impairments, communication and language barriers, and cultural differences. Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life.
It is important that staff are aware that older people in care homes have the same right to access healthcare as people living independently in the community. This is stated in the NHS Constitution.

Access to healthcare services

This quality statement is taken from the mental wellbeing of older people in care homes quality standard. The quality standard defines clinical best practice in mental wellbeing of older people in care homes and should be read in full.

Quality statement

Older people in care homes have access to the full range of healthcare services when they need them.

Rationale

Older people in care homes typically have greater and more complex health needs than those living in the community, and these needs can affect their wellbeing if they are not addressed. Many care home residents experience problems accessing NHS primary and secondary healthcare services, including GPs. It is important that care homes have good links with GPs and referral arrangements, so that services can be accessed easily and without delay when they are needed. This is essential to prevent unmet healthcare needs from having a negative impact on mental wellbeing.

Quality measures

Structure
Evidence of referral arrangements to ensure that older people in care homes are given access to the full range of healthcare services when they need them.
Data source: Local data collection.
Outcome
Feedback from older people in care homes and from their family, friends and/or carers that they are satisfied with the care they have received.

What the quality statement means for organisations providing care, social care, health and public health practitioners, local authorities and other commissioning services

Organisations providing care ensure that they work in partnership with healthcare organisations to implement effective arrangements for access to primary, secondary, specialist and mental health services for older people in care homes.
Social care, health and public health practitioners facilitate access to primary, secondary, specialist and mental health services for older people in care homes by referring the person to the required service when they need it.
Local authorities and other commissioning services commission services from providers that can produce evidence of arrangements with local healthcare organisations which facilitate access to primary, secondary, specialist and mental health services for older people in care homes.

What the quality statement means for service users

Older people in care homes can see their GP and use hospital services when they need them.

Source guidance

Definitions of terms used in this quality statement

Care homes
This refers to all care home settings, including residential and nursing accommodation, and includes people accessing day care and respite care. [Expert consensus]
Healthcare services
These include primary care, and acute and specialist physical and mental health services. [GP services for older people living in residential care: a guide for care home managers. (SCIE guide 52)]

Equality and diversity considerations

When deciding if access to healthcare services is needed, staff working with older people in care homes should be aware of any learning disabilities, acquired cognitive impairments, communication and language barriers, sensory impairment, and cultural differences. Staff should ensure that they are aware of the needs and preferences of older people who are approaching the end of their life.
It is important that staff are aware that older people in care homes have the same right to access healthcare as people living independently in the community. This is stated in the NHS Constitution.

Effective interventions library

Successful effective interventions library details

Implementation

Support for commissioners

These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.

Support for education and learning

NICE produces resources for individual practitioners, teams and those with a role in education to help improve and assess users' knowledge of relevant NICE guidance and its application in practice.

Pathway information

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.
NICE has also written information for the public explaining its quality standards on each of the following topics.

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Updates to this pathway

22 April 2014 Wording in diagnosis of subtype has been changed to clarify the circumstances when imaging is needed.
26 March 2014 Links to the Parkinson's disease pathway have been added.
07 January 2014 Updated quality statement 9 of the Dementia quality standard to reflect the withdrawal of the Liverpool Care Pathway for the dying.
12 December 2013 Mental wellbeing of older people in care homes quality standard added to the pathway
9 April 2013 Minor maintenance updates
2 April 2013 Supporting people to live well with dementia quality standard added to the pathway
7 January 2013 Minor maintenance updates
12 October 2012 Minor maintenance updates
02 October 2012 Minor maintenance updates
25 October 2011 Minor maintenance updates

Supporting information

Glossary

Principles of care

Principles of care

Principles of care

Community-based care

Support people with dementia in the community as far as possible. If considering psychiatric inpatient admission see accommodation and hospital care in this pathway.

Diversity and equality

Always treat people with dementia and their carers with respect.
Ensure people with dementia are not excluded from services because of their diagnosis, age (whether regarded as too old or too young), or any learning disability.
If there is a language barrier, offer:
  • written information in the preferred language and/or an accessible format
  • independent interpreters
  • psychological interventions in the preferred language.
Ensure that people suspected of having dementia because of cognitive and functional deterioration, but who do not have sufficient memory impairment for diagnosis, are not denied access to support services.

Needs and preferences of people with dementia

Identify specific needs, including those arising from:
  • diversity (such as sex, ethnicity, age, religion and personal care)
  • ill health, physical and learning disabilities, sensory impairment, communication difficulties, problems with nutrition and poor oral health.
Identify and wherever possible accommodate preferences (such as diet, sexuality and religion), particularly in residential care.
Record and address needs and preferences in the care plan.

Younger people with dementia

Specialist multidisciplinary services, allied to existing dementia services, should be developed for the assessment, diagnosis and care of younger people with dementia.

People with learning disabilities

Health and social care staff working with people with learning disabilities and other younger people at risk of dementia should be trained in dementia awareness.
People with learning disabilities and those supporting them should have access to specialist advice and support for dementia.

Ethics and consent

Always seek valid consent from people with dementia.
  • Explain options and check that the person understands, has not been coerced and continues to consent over time.
  • Use the Mental Capacity Act 2005 if the person lacks capacity.
Encourage the use of advocacy services and voluntary support. These services should be available to people with dementia and carers separately if required.
Allow people with dementia to convey information in confidence.
  • Discuss with the person any need to share information with colleagues or other agencies.
  • Only disclose confidential material without consent in exceptional circumstances.
  • As the dementia worsens, any decisions about sharing information should be made in the context of the Mental Capacity Act 2005.
Discuss with the person with dementia, while he or she still has capacity, and his or her carer the use of:
  • advance statements (stating what is to be done if the person loses the capacity to communicate or make decisions)
  • advance decisions to refuse treatment
  • Lasting Power of Attorney
  • a Preferred Place of Care Plan.

Other principles of care

Impact of dementia on relationships

Assess the impact of dementia on personal (including sexual) relationships at the time of diagnosis and when indicated subsequently. Provide information about local support services if required.
Because people with dementia are vulnerable to abuse and neglect, health and social care staff should have access to information and training about adult protection and abide by the local multi-agency policy.

Financial support and NHS Continuing Care

Explain to people with dementia and their carers:
  • that they have the right to receive direct payments and individual budgets (where available); offer support to obtain and manage these if needed
  • the statutory difference between NHS care and care provided by local authority social services to help them decide whether they are eligible for NHS continuing care.

Quality standards

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Mental wellbeing of older people in care homes quality standard

Source guidance

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Risk factors and prevention

Risk factors and prevention

Risk factors and prevention

Risk factors

Do not conduct general population screening.
In middle-aged and older people, review and treat vascular and other risk factors for dementia, such as smoking, excessive alcohol use, obesity, diabetes, hypertension and raised cholesterol levels.
For more information see the NICE pathways on smoking, alcohol, diet, diabetes and hypertension.

Genetic counselling

Offer referral to genetic counselling to those thought to have a genetic cause of dementiaExamples include familial autosomal dominant Alzheimer's disease or frontotemporal dementia, cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) and Huntington's disease. and to their unaffected relatives.
  • Genetic counselling should be provided by regional genetic services.
  • Do not use clinical genotyping if a genetic cause for dementia is not suspected, including late-onset dementia.

Prevention

Do not use the following as specific treatments for the primary prevention of dementia:
  • statins
  • hormone replacement therapy
  • vitamin E
  • non-steroidal anti-inflammatory drugs.
For the secondary prevention of dementia, review and treat vascular and other risk factors in people with the condition.

Source guidance

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Early identification

Early identification

Early identification

In primary care, consider referring people with signs of mild cognitive impairment (MCI)MCI is a syndrome defined as cognitive decline greater than expected for an individual's age and education level that does not interfere notably with activities of daily living. It is not a diagnosis of dementia of any type, although it may lead to dementia in some cases. for assessment at memory assessment services.
If undertaking health checks, including those conducted as part of health facilitation, be aware of:
  • the increased risk of dementia in people with learning disabilities and
  • the possibility of dementia in other high-risk groups (for example people who have had a stroke or have a neurological condition such as Parkinson's disease).
Memory assessment services that identify people with MCI (including those without memory impairment, which may be absent in the earlier stages of non-Alzheimer's dementias) should offer follow-up to monitor signs of possible dementia.
For more information on stroke, see the NICE stroke pathway. NICE has also produced a pathway on Parkinson's disease.

Quality standards

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Mental wellbeing of older people in care homes quality standard

Source guidance

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Promoting choice

Promoting choice

Promoting choice

NICE has published quality statements on promoting choice for people with dementia (see below).

Quality standards

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Dementia quality standard

Supporting people to live well with dementia quality standard

Providing support

Providing support

Providing support

NICE has published quality statements on providing support to people with dementia (see below).

Quality standards

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Dementia quality standard

Supporting people to live well with dementia quality standard

Integrated and coordinated care

Integrated and coordinated care and service provision

Integrated and coordinated care and service provision

Integrated health and social care

Use the Department of Health's publication 'Everybody's business. Integrated mental health services for older adults: a service development guide' in conjunction with this guideline as a framework for the planning, implementation and delivery of:
  • primary care
  • home care
  • mainstream and specialist day services
  • sheltered and extra-care housing
  • assistive technology and telecare
  • mainstream and specialist residential care
  • intermediate care and rehabilitation
  • care in general hospitals
  • specialist mental health services.
Ensure that people with dementia and their carers are given up-to-date information on local arrangements (including inter-agency working) for health and social care, including the independent and voluntary sectors, and on how to access such services.
Health and social care managers should coordinate and integrate the work of agencies involved in the care of people with dementia, including:
  • jointly agreeing written policies and procedures
  • involving service users and carers in joint planning to help identify local problems.

Management and coordination of care

Plan and provide care of people with dementia and support for their carers within the framework of care management/coordination.
Care managers/coordinators should ensure that:
  • there is coordinated delivery of health and social care services, including:
    • a combined care plan agreed by health and social services that takes into account the changing needs of the person with dementia and carers
    • named health and social care staff to operate the care plan
    • endorsement of the plan by the person and/or carers
    • formal reviews of the plan at a frequency agreed with the person and carers and recorded in the notes
  • care plans are based on the person with dementia's:
    • life history, social and family circumstances, and preferences
    • physical and mental health needs and current level of functioning.

Quality standards

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Dementia quality standard

Supporting people to live well with dementia quality standard

Mental wellbeing of older people in care homes

Source guidance

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Promoting independence and maintaining function

Promoting independence and maintaining function

Promoting independence and maintaining function

Health and social care staff should aim to promote and maintain the independence, including mobility, of people with dementia.
Care plans should address activities of daily living (ADL) that maximise independent activity, enhance function, adapt and develop skills, and minimise need for support. They should also address the varying needs of people with different types of dementia. Essential components are:
  • consistent and stable staffing
  • retaining a familiar environment
  • minimising relocations
  • flexibility to accommodate fluctuating abilities
  • ADL advice and skill training from an occupational therapist
  • advice about independent toileting skills (if incontinence occurs, all possible causes should be assessed and treatment options tried before concluding it is permanent)
  • environmental modifications to aid independence, including assistive technology, with advice from an occupational therapist and/or clinical psychologist
  • physical exercise, with assessment and advice from a physiotherapist when needed
  • support for people to go at their own pace and take part in activities they enjoy.
In people with a learning disability newly diagnosed with dementia, consider using:
  • the Assessment of Motor and Process Skills (AMPS)The AMPS should be carried out by someone with formal training in its use. at the time of diagnosis to help develop the care plan
  • Dementia Questionnaire for Mentally Retarded Persons (DMR) and Dalton's Brief Praxis Test (BPT) for monitoring change in functioning.

Quality standards

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Dementia quality standard

Supporting people to live well with dementia quality standard

Mental wellbeing of older people in care homes quality standard

Source guidance

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Living arrangements and care home placements

Living arrangements and care home placements

Living arrangements and care home placements

When organising or purchasing living arrangements or care home placements, health and social care managers should ensure that the design meets the needs of people with dementia and complies with the Disability Discrimination Acts 1995 and 2005.
  • Built environments should be enabling and aid orientation. Attention should be paid to lighting, colour schemes, floor coverings, assistive technology, signage, garden design, and access to and safety of the external environment.
  • Consideration should be given to size of units, mix of residents, and skills of staff to ensure that the environment is supportive and therapeutic.

Quality standards

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Supporting people to live well with dementia quality standard

Source guidance

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Inpatient care and care in an acute hospital

Inpatient care and care in an acute hospital

Inpatient care and care in an acute hospital

Inpatient care

Support people with dementia in the community as far as possible. However, consider psychiatric inpatient admission if necessary, including if:
  • the person is severely disturbed and needs to be contained for his or her own health and safety and/or the safety of others (this might include those liable to be detained under the Mental Health Act 1983)
  • assessment in a community setting is not possible, for example if there are complex physical and psychiatric problems.

Care in an acute hospital

Acute and general hospital trusts should:
  • provide services that address the specific personal and social care needs and the mental and physical health of people with dementia who use acute hospital facilities for any reason
  • ensure that people with suspected or known dementia using inpatient services are assessed by a liaison service that specialises in the treatment of dementia. Care should be planned jointly by:
    • the trust's hospital staff
    • liaison teams
    • relevant social care staff
    • the person with suspected or known dementia and carers.

Quality standards

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Dementia quality standard

Source guidance

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Palliative and end-of-life care

Palliative and end-of-life care

Palliative and end-of-life care

A palliative care approach

Adopt a palliative care approach from diagnosis until death to support the quality of life of people with dementia and to enable them to die with dignity and in the place of their choosing. Information on end-of-life care is available from the National End of Life website.
  • Consider physical, psychological, social and spiritual needs.
  • Ensure people with dementia have the same access to palliative care services as others.
  • Primary care teams should assess the palliative care needs of people close to death. Communicate the result within the team and to other health and social care staff.
  • Encourage people with dementia to eat and drink by mouth for as long as possible.
    • Specialist assessment and advice about swallowing and feeding should be available.
    • Dietary advice may be useful.
    • Do not generally use tube feeding in severe dementia if dysphagia or disinclination to eat is a manifestation of disease severity.
      • Consider nutritional support, including tube feeding, if dysphagia is thought to be transient.
      • Apply ethical and legal principles to decisions to withhold or withdraw nutritional support.
  • Clinically assess fever in severe dementia (especially in the terminal stages).
    • Treatment with simple analgesics, antipyretics and mechanical cooling may suffice.
    • Consider palliative use of antibiotics after an individual assessment.

Resuscitation

Institutional policies should reflect the fact that cardiopulmonary resuscitation is unlikely to succeed in people with severe dementia.
  • If the person with dementia has not made an advance decision to refuse resuscitation:
    • take into account any expressed wishes of the person with dementia and the views of the carers and the multidisciplinary team
    • follow the Resuscitation Council UK's guidance
    • follow the Mental Capacity Act 2005 if the person lacks capacity
    • record decisions in the notes and care plan.

Pain relief

If there are unexplained changes in behaviour or signs of distress, assess for undetected pain, using an observational pain assessment tool if helpful. However, do not rule out other causes.
In severe dementia, treat pain both pharmacologically and non-pharmacologically. Consider the person's history and preferences when choosing non-pharmacological therapies.

Quality standards

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Dementia quality standard

Source guidance

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Staff training

Staff training

Staff training

Training in dementia care

Health and social care managers should ensure all staff working with older people in the health, social care and voluntary sectors have access to dementia-care training (skill development).
  • According to the needs of the staff being trained, trainers should consider the following when developing educational programmes:
    • early signs and symptoms suggestive of dementia and its major subtypes
    • natural history, signs and symptoms, and prognosis
    • impact of the condition on the person with dementia and carers, family and social network
    • assessment and treatment, including administration of medication and monitoring side effects
    • person-centred care in dementia
    • communication skills
    • assertive outreach techniques for people not engaged with services
    • roles of staff and agencies involved in care and basic advice on how they should work together
    • introduction to local adult protection policy and procedures, including the reporting of concerns or malpractice and who to contact
    • palliative care approach.
Training programmes should be adjusted for staff caring for people with learning disabilities.
In local mental health and learning disability services:
  • managers should set up consultation and communication channels for care homes and other services
  • liaison teams should offer regular consultation and training for healthcare professionals in acute hospitals who provide care for people with dementia. This should be planned by the acute hospital trust in conjunction with mental health, social care and learning disability services.
In primary care, there should be an evidence-based educational intervention, such as decision-support software and practice-based workshops, to improve the diagnosis and management of dementia.

Training in behaviour that challenges

Health and social care staff should be trained to anticipate behaviour that challenges and how to manage violence, aggression and extreme agitation, including de-escalation techniques and methods of physical restraint.
Healthcare professionals who use medication in the management of violence, aggression and extreme agitation should:
  • be trained in the use of drugs for behavioural control (benzodiazepines and antipsychotics)
  • be able to assess the risks of pharmacological control of violence, aggression and extreme agitation, particularly in dehydrated and physically ill people
  • understand the cardiorespiratory effects of the acute administration of benzodiazepines and antipsychotics and the need to titrate dose to effect
  • recognise the importance of nursing people who have received these drugs in the recovery position and monitoring pulse, blood pressure and respiration
  • be trained in the use of resuscitation equipment and undertake annual retraining in resuscitation techniques
  • understand the importance of maintaining an unobstructed airway.
For more information on interventions for non-cognitive symptoms and behaviour that challenges, see interventions in this pathway.

Quality standards

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Dementia quality standard

Source guidance

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Support for carers

Support for carers

Support for carers

Assessment

Health and social care managers should ensure that the rights of carers to an assessment of needs as set out in the Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004 are upheld.
Carers' assessments should seek to identify any psychological distress and the psychosocial impact on the carer, including after the person with dementia has entered residential care.

Interventions

Care plans for carers should include tailored interventions, such as:
  • individual or group psychoeducation
  • peer-support groups tailored to the needs of the individual (for example, the stage of dementia of the person being cared for)
  • telephone and internet information and support
  • training courses about dementia, services and benefits, and dementia-care problem solving.
Consider involving the person with dementia and other family members as well as the primary carer.
Ensure support (such as transport or short-break services) is provided to enable carer participation in interventions.
Offer psychological therapy (including cognitive behavioural therapy) with a specialist practitioner to carers who experience psychological distress and negative psychological impact.

Practical support

Health and social care managers should ensure that carers of people with dementia have access to a range of respite or short-break services.
  • Services should meet the needs of both the carer (in terms of location, flexibility, and timeliness) and the person with dementia.
  • Services should include, for example, day care, day- and night-sitting, adult placement and short-term and/or overnight residential care.
  • Transport to these services should be offered.
Respite/short-break care should include therapeutic activities tailored to the person with dementia provided in an environment that meets their needs (the person's own home wherever possible).

Quality standards

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Dementia quality standard

Source guidance

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Paths in this pathway

Pathway created: May 2011 Last updated: April 2014

Copyright © 2014 National Institute for Health and Care Excellence. All Rights Reserved.



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