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Dementia
Short Text
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 clinical guideline 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)
Alzheimer's disease - donepezil, galantamine, rivastigmine and memantine (review). NICE technology appraisal 217 (2011)
Quality standards
Dementia quality standard
These quality statements are taken from the dementia quality standard. The quality standard defines clinical best practice in dementia care and should be read in full.
Supporting people to live well with dementia quality standard
These quality statements are 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 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 :
- advance statements
- advance decisions to refuse treatment
- Lasting Power of Attorney
- Preferred Priorities of Care.
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.
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.
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).
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.
Support for service improvement and audit
These resources provide help with planning ahead for NICE guidance, understanding where you are now, and conducting improvement initiatives.
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.
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 someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent, the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards. In Wales, healthcare professionals should follow advice on consent from the Welsh Government.
If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children. If a young person is moving between paediatric and adult services their 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.
Updates to this 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
Person with dementia
Person with dementia
Interventions for cognitive symptoms and maintenance of function
Interventions for cognitive symptoms and maintenance of function
Pharmacological interventions for cognitive symptoms
Pharmacological interventions
Drugs for Alzheimer's disease
Drugs for Alzheimer's disease
Drugs for Alzheimer's disease
Donepezil, galantamine, rivastigmine and memantine
1. The three acetylcholinesterase (AChE) inhibitors donepezil, galantamine and rivastigmine are recommended as options for managing mild to moderate Alzheimer's disease under all of the conditions specified in paragraphs 3 and 4 below.
2. Memantine is recommended as an option for managing Alzheimer's disease for people with:
- moderate Alzheimer's disease who are intolerant of or have a contraindication to AChE inhibitors or
- severe Alzheimer's disease.
Treatment should be under the conditions specified in paragraph 3.
3. Treatment should be under the following conditions:
- Only specialists in the care of patients with dementia (that is, psychiatrists including those specialising in learning disability, neurologists, and physicians specialising in the care of older people) should initiate treatment. Carers' views on the patient's condition at baseline should be sought.
- Treatment should be continued only when it is considered to be having a worthwhile effect on cognitive, global, functional or behavioural symptoms.
- Patients who continue on treatment should be reviewed regularly using cognitive, global, functional and behavioural assessment. Treatment should be reviewed by an appropriate specialist team, unless there are locally agreed protocols for shared care. Carers' views on the patient's condition at follow-up should be sought.
4. If prescribing an AChE inhibitor (donepezil, galantamine or rivastigmine), treatment should normally be started with the drug with the lowest acquisition cost (taking into account required daily dose and the price per dose once shared care has started). However, an alternative AChE inhibitor could be prescribed if it is considered appropriate when taking into account adverse event profile, expectations about adherence, medical comorbidity, possibility of drug interactions and dosing profiles.
5. When using assessment scales to determine the severity of Alzheimer's disease, healthcare professionals should take into account any physical, sensory or learning disabilities, or communication difficulties that could affect the results and make any adjustments they consider appropriate. Healthcare professionals should also be mindful of the need to secure equality of access to treatment for patients from different ethnic groups, in particular those from different cultural backgrounds.
6. When assessing the severity of Alzheimer's disease and the need for treatment, healthcare professionals should not rely solely on cognition scores in circumstances in which it would be inappropriate to do so. These include:
- if the cognition score is not, or is not by itself, a clinically appropriate tool for assessing the severity of that patient's dementia because of the patient's learning difficulties or other disabilities (for example, sensory impairments), linguistic or other communication difficulties or level of education or
- if it is not possible to apply the tool in a language in which the patient is sufficiently fluent for it to be appropriate for assessing the severity of dementia or
- if there are other similar reasons why using a cognition score, or the score alone, would be inappropriate for assessing the severity of dementia.
In such cases healthcare professionals should determine the need for initiation or continuation of treatment by using another appropriate method of assessment.
These recommendations are from Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease (review) (NICE technology appraisal guidance 217).
NICE has written information for patients and the public explaining the guidance on drugs for Alzheimer's disease.
Assessing severity of Alzheimer's disease in people with learning disabilities
According to the level of competence, consider alternative tests:
- Cambridge Cognitive Examination (CAMCOG)
- Modified Cambridge Examination for Mental Disorders of the Elderly (CAMDEX)
- Dementia Questionnaire for Mentally Retarded Persons (DMR)
- Dementia Scale for Down Syndrome (DSDS) (also useful in people without Down's syndrome).
Implementation tools
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/implementation-node-singleDrugs for non-Alzheimer dementias and MCI
Drugs for non-Alzheimer dementias and mild cognitive impairment
Drugs for non-Alzheimer dementias and mild cognitive impairment
Except as part of properly constructed clinical studies, do not use:
- acetylcholinesterase inhibitors or memantine for cognitive decline in vascular dementia
- acetylcholinesterase inhibitors in mild cognitive impairment.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeNon-pharmacological interventions for cognitive symptoms and maintenance of function
Non-pharmacological interventions
Non-pharmacological interventions
Offer people with mild-to-moderate dementia the opportunity to participate in a structured group cognitive stimulation programme irrespective of drug treatment for cognitive symptoms.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeInterventions for non-cognitive symptoms and behaviour that challenges
Interventions for non-cognitive symptoms and behaviour that challenges
Interventions for non-cognitive symptoms and behaviour that challenges
Non-cognitive symptoms of dementia include hallucinations, delusions, anxiety, marked agitation and associated aggressive behaviour. Behaviour that challenges may include aggression, agitation, wandering, hoarding, sexual disinhibition, apathy and disruptive vocal activity such as shouting.
Consider medication for non-cognitive symptoms or behaviour that challenges in the first instance only if there is severe distress or an immediate risk of harm to the person with dementia or others.
- Use the assessment and care-planning approach (see non-pharmacological interventions for non-cognitive symptoms and behaviour that challenges in this pathway) as soon as possible.
- For less severe distress and/or agitation, initially use a non-drug option (see non-pharmacological interventions for non-cognitive symptoms and behaviour that challenges and psychosocial interventions for comorbid depression and/or anxiety in this pathway).
Quality standards
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/quality-standard-node-singleDementia quality standard
Implementation tools
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/implementation-node-singleSource guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeNon-pharmacological interventions for non-cognitive symptoms
Non-pharmacological interventions
Non-pharmacological interventions
If a person with dementia develops distressing non-cognitive symptoms or behaviour that challenges, offer an early assessment to identify factors that may influence the behaviour. Include:
- physical health
- depression
- possible undetected pain or discomfort
- side effects of medication
- individual biography
- psychosocial factors
- physical environmental factors
- behavioural and functional analysis in conjunction with carers and care workers.
For more information on depression, see the depression pathway.
Develop individual care plans, record in the notes and review regularly at a frequency agreed with carers and staff.
For comorbid agitation, consider interventions tailored to the person's preferences, skills and abilities.
- Monitor response and adapt the care plan as needed.
- Depending on availability, consider options including:These can be delivered by a range of health and social care staff and volunteers. Health and social care staff should ensure that some options are available.
- aromatherapy
- multisensory stimulation
- therapeutic use of music and/or dancing
- animal-assisted therapy
- massage.
Quality standards
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/quality-standard-node-singleDementia quality standard
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodePharmacological interventions for non-cognitive symptoms
Pharmacological interventions
Pharmacological interventions
Consider medication for non-cognitive symptoms or behaviour that challenges in the first instance only if there is severe distress or an immediate risk of harm to the person with dementia or others.
Antipsychotics
Do not use antipsychotic drugs for mild-to-moderate non-cognitive symptoms in:
- Dementia with Lewy Bodies (DLB), because of the risk of severe adverse reactions
- Alzheimer's disease, vascular dementia or mixed dementias, because of the increased risk of cerebrovascular adverse events and death.
Consider antipsychotics for severe non-cognitive symptoms (psychosis and/or agitated behaviour causing significant distress) only if:
- risks and benefits have been fully discussed; assess cerebrovascular risk factors and discuss possible increased risk of stroke/transient ischaemic attack and possible adverse effects on cognition
- changes in cognition are regularly assessed and recorded; consider alternative medication if necessary
- target symptoms have been identified, quantified and documented, and changes are regularly assessed and recorded
- comorbid conditions, such as depression, have been considered
- the drug is chosen after an individual risk–benefit analysis
- the dose is started low and titrated upwards
- treatment is time limited and regularly reviewed (every 3 months or according to clinical need).
In DLB, monitor for severe untoward reactions, particularly neuroleptic sensitivity reactions (development or worsening of extrapyramidal features or acute, severe physical deterioration).
Acetylcholinesterase inhibitors
Consider an acetylcholinesterase inhibitor for:
- people with DLB who have non-cognitive symptoms causing significant distress or leading to behaviour that challenges
- people with mild, moderate or severe Alzheimer's disease who have non-cognitive symptoms and/or behaviour that challenges causing significant distress or potential harm to the individual if:
- a non-pharmacological approach is inappropriate or has been ineffective, and
- antipsychotic drugs are inappropriate or have been ineffective.
Do not use acetylcholinesterase inhibitors for non-cognitive symptoms or behaviour that challenges in vascular dementia except as part of properly constructed clinical studies.
Implementation tools
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/implementation-node-singleSource guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeBehaviour that challenges requiring urgent treatment
Behaviour that challenges requiring urgent treatment
Behaviour that challenges requiring urgent treatment
Managing risk
Address environmental, physical health and psychosocial factors that may increase the likelihood of behaviour that challenges. These include:
- overcrowding
- lack of privacy
- lack of activities
- inadequate staff attention
- poor communication between the person with dementia and staff
- conflicts between staff and carers
- weak clinical leadership.
Principles of pharmacological control of violence, aggression and extreme agitation
Conduct immediate management in a safe, low-stimulation environment, away from others.
Use drugs to calm the person and reduce the risk of violence and harm, rather than to treat any underlying psychiatric condition. Aim to reduce agitation or aggression without sedation.
Use the lowest effective dose. Avoid high doses and drug combinations, especially in elderly or frail people.
Use drugs for control of behaviour with caution, particularly if the person has been restrained, because of the following risks:
- loss of consciousness instead of sedation
- over-sedation with loss of alertness
- damage to the relationship between the person with dementia, their carers and the care team
- specific issues related to age and physical and mental health.
Offer people with dementia and their carers the opportunity to discuss their experiences, and explain the decision to use urgent sedation. Record in the notes.
Route of drug administration
Offer oral medication before parenteral medication.
- If parenteral treatment is necessary, prefer intramuscular to intravenous injection. Give drugs intravenously only in exceptional circumstances.
- Monitor vital signs after parenteral administration. Record blood pressure, pulse, temperature and respiratory rates at regular intervals until the person with dementia becomes active again.
- Monitor more intensively if the person appears to be or is asleep.
Intramuscular agents for behavioural control
Use lorazepam, haloperidol or olanzapine. If possible, use a single agent.
For rapid tranquillisation, consider haloperidol and lorazepam in combination.
Do not use diazepam or chlorpromazine.
When using haloperidol (or any other conventional antipsychotic), monitor closely for dystonia and other extrapyramidal side effects.
If side effects become distressing, consider an anticholinergic agent; monitor for deteriorating cognitive function if used.
Implementation tools
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/implementation-node-singleSource guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeInterventions for comorbid emotional disorders
Interventions for comorbid emotional disorders
Interventions for comorbid emotional disorders
Assess and monitor people with dementia for depression and/or anxiety.
NICE has also produced guidance on depression and anxiety. For more information on these conditions, see the depression or the anxiety pathways.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodePsychosocial interventions for comorbid depression
Pharmacological interventions for comorbid depression
Pharmacological interventions for comorbid depression
Pharmacological interventions for comorbid depression
Offer antidepressant medication.
- Specialist staff should start treatment after risk–benefit analysis.
- Treatment should follow the recommendations on treating depression in the depression pathway.
- Drugs with anticholinergic effects should be avoided because they may adversely affect cognition.
- The need for adherence, time to onset of action and risk of withdrawal effects should be explained.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodePaths in this pathway
Pathway created: May 2011 Last updated: April 2013
Copyright © 2013 National Institute for Health and Care Excellence. All Rights Reserved.