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Dementia

About

What is covered

This interactive flowchart covers diagnosing and managing dementia, and supporting people living with dementia and their carers. It aims to improve care by making recommendations on training staff and on helping carers to support people living with dementia.

Updates

Updates to this interactive flowchart

27 June 2019 Dementia (NICE quality standard 184) added to replace dementia: support in health and social care (NICE quality standard 1) and dementia: independence and wellbeing (NICE quality standard 30).
2 November 2018 Patient decision aid on antipsychotic medicines for treating agitation, aggression and distress in people living with dementia added to managing non cognitive symptoms. Patient decision aid on enteral feeding for people living with severe dementia added to palliative care.
19 June 2018 Fully revised on publication of dementia: assessment, management and support for people living with dementia and their carers (NG97).

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on assessment, management and support for people living with dementia and Alzheimer's disease and their carers in an interactive flowchart

What is covered

This interactive flowchart covers diagnosing and managing dementia, and supporting people living with dementia and their carers. It aims to improve care by making recommendations on training staff and on helping carers to support people living with dementia.

Updates

Updates to this interactive flowchart

27 June 2019 Dementia (NICE quality standard 184) added to replace dementia: support in health and social care (NICE quality standard 1) and dementia: independence and wellbeing (NICE quality standard 30).
2 November 2018 Patient decision aid on antipsychotic medicines for treating agitation, aggression and distress in people living with dementia added to managing non cognitive symptoms. Patient decision aid on enteral feeding for people living with severe dementia added to palliative care.
19 June 2018 Fully revised on publication of dementia: assessment, management and support for people living with dementia and their carers (NG97).

Sources

NICE guidance and other sources used to create this interactive flowchart.
Dementia (2019) NICE quality standard 184
Mental wellbeing of older people in care homes (2013) NICE quality standard 50

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.

Dementia

These quality statements are taken from the dementia quality standard. The quality standard defines clinical best practice for dementia and should be read in full.

Quality statements

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 (Royal 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.

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, depression in adults, depression in adults with a chronic physical health problem, delirium, common mental health problems and social anxiety disorder 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.
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.
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 for England.

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 for England.

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.

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 for England.

Raising awareness – health promotion interventions

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

Quality statement

People accessing behaviour change interventions and programmes in mid-life are advised that the risk of developing dementia can be reduced by making lifestyle changes.

Rationale

There is limited awareness among both the public and practitioners that the risk of developing some types of dementia can be reduced, or the onset or progression delayed, through lifestyle changes. Making this clear in interventions and programmes that promote behaviour change, such as NHS Health Checks and stop smoking services, should encourage changes in behaviour in mid-life, which could lead to fewer people developing dementia in later life.

Quality measures

Structure
a) Evidence that service specifications for behaviour change interventions and programmes include actions to raise awareness of lifestyle changes that could reduce the risk of developing dementia.
Data source: Local data collection, for example, local service specifications.
b) Evidence that training for practitioners delivering behaviour change interventions and programmes includes how to advise and support people to reduce the risk of developing dementia.
Data source: Local data collection, for example, local service specifications.
c) Evidence that information about the link between unhealthy behaviours and the risk of developing dementia is included in local health promotion materials.
Data source: Local data collection, for example, local health promotion leaflets or websites.
Process
Proportion of people attending behaviour change interventions and programmes in mid-life who are advised that the risk of developing dementia can be reduced by making lifestyle changes.
Numerator –the number in the denominator who are advised that the risk of developing dementia can be reduced by making lifestyle changes.
Denominator – the number of people attending behaviour change interventions and programmes in mid-life.
Data source: Local data collection, for example, local audit of patient records.
Outcomes
a) Public awareness of the link between dementia and lifestyle.
Data source: Local data collection, for example, public surveys.
b) Uptake of healthy lifestyle choices.
Data source: Local data collection, for example, public surveys. Public Health England’s Public Health Outcomes Framework data includes data on portions of fruit and vegetables consumed, physical activity, smoking prevalence, alcohol-related admissions and social isolation of adults using social care. Public Health England also has national profiles on physical activity, alcohol and tobacco control.

What the quality statement means for different audiences

Service providers (stop smoking services, leisure services, NHS Health Checks and other health and wellbeing service providers) ensure that staff delivering behaviour change interventions and programmes are aware of lifestyle changes that can reduce the risk of developing dementia, and offer advice on reducing this risk.
Health and public health practitioners (such as health improvement practitioners, health trainers, GPs, nurses, pharmacists and stop smoking advisers) are aware of the lifestyle changes that can reduce the risk of developing dementia and offer advice on reducing this risk.
Commissioners (such as clinical commissioning groups and local authorities) ensure that service specifications for behaviour change interventions and programmes include the lifestyle changes that can reduce the risk of developing dementia and the actions needed to raise awareness of these. They ensure that services delivering these interventions and programmes offer advice on reducing the risk of dementia.
People having NHS Health Checks or taking part in health and wellbeing programmes in mid-life are told about lifestyle changes they can make to reduce their risk of developing dementia.

Source guidance

Definitions of terms used in this quality statement

Mid-life
Adults aged 40 to 64 years. Adults aged 39 years or under from disadvantaged populations may also be considered (this group is at increased risk of ill health and more likely to develop multiple morbidities).
[Adapted from NICE’s guideline on dementia, disability and frailty in later life, What is this guideline about?]
Lifestyle changes
Behaviours such as smoking, lack of physical activity, unhealthy diet, alcohol consumption, being overweight or obese, and loneliness that can be changed to reduce the risk of developing dementia.
[NICE’s guideline on dementia, disability and frailty in later life, recommendation 3]

Equality and diversity considerations

People should be provided with information about the risk factors for dementia that they can easily read and understand themselves, or with support. Information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and it should be culturally appropriate and age appropriate.

Diagnosis

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

Quality statement

People with suspected dementia are referred to a specialist dementia diagnostic service if reversible causes of cognitive decline have been investigated.

Rationale

Referral to dementia specialist diagnostic services ensures that diagnosis is timely and accurate, and dementia subtypes, such as Alzheimer’s disease and dementia with Lewy bodies, can be identified. It also means that people can access support and treatment sooner. The benefits of a timely diagnosis include the person and their family and carers knowing what to expect so that they can consider future mental capacity and make plans early (advance care planning).

Quality measures

Structure
Evidence of local referral criteria and pathways to ensure that people with suspected dementia are referred to a specialist dementia diagnostic service.
Data source: Local data collection, for example, local commissioning agreements and service specifications.
Process
Proportion of people with dementia who have a record of attending a specialist dementia diagnostic service up to 12 months before entering on to the GP practice register.
Numerator – the number in the denominator who were referred to a specialist dementia diagnostic service up to 12 months before entering on to the GP practice register.
Denominator – the number of people with dementia on the GP practice register.
Data source: Local data collection. An indicator was piloted and shown to be feasible by the NICE indicator programme. See NICE indicator NM65.
Outcome
Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.

What the quality statement means for different audiences

Service providers (general practices, secondary care services, memory clinics, tertiary referral clinics, neurology clinics and geriatric medicine clinics) ensure that systems are in place to investigate reversible causes of cognitive decline. Specialist dementia diagnostic services and referral pathways should be in place so that people with suspected dementia can be referred after reversible causes have been investigated.
Healthcare professionals (such as GPs, neurologists and geriatricians) investigate reversible causes of cognitive decline, such as delirium, depression, sensory impairment (such as sight or hearing loss) or cognitive impairment from medicines associated with increased anticholinergic burden. If dementia is still suspected, they discuss referral with the person with suspected dementia, and refer them to a specialist dementia diagnostic service if the person agrees.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that have referral pathways to a specialist dementia diagnostic service for people with suspected dementia and no reversible causes of cognitive decline.
People with symptoms of dementia have checks to see if something else is causing their symptoms. If dementia is still suspected, they have a discussion with the doctor about referral and, if they agree to it, they are referred to a specialist service for tests to find out whether they have dementia and, if so, what type they have.
Family members and carers of people with suspected dementia are involved in checks to see if something else is causing the person’s symptoms, and in discussions about referral as appropriate. Their involvement might be needed if, for example, the person with symptoms of dementia lacks mental capacity or needs support in identifying their symptoms.

Source guidance

Definitions of terms used in this quality statement

Suspected dementia
Dementia that is suspected after reversible causes of cognitive decline (including delirium, depression, sensory impairment [such as sight or hearing loss] or cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated.
[NICE’s guideline on dementia, recommendation 1.2.6]
Referred to a specialist dementia diagnostic service
A specialist dementia diagnostic service might be a memory clinic or community old age psychiatry service. A referral to a diagnostic service does not have to involve a clinic appointment. People can be seen in community settings (such as their home or a care home), or advice can be provided to the referrer without a formal appointment being made. The key is to ensure that dementia specialists are involved, both for advice on diagnosis and to ensure appropriate access to support and treatment after diagnosis. Specialists are those with the appropriate knowledge and skills, and include secondary care medical specialists (for example, psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example, GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in assessing and diagnosing dementia.
[NICE’s guideline on dementia, recommendation 1.2.6 and terms used in this guideline]

Equality and diversity considerations

People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs; they should also establish a person’s current level of understanding and whether they would like a person important to them to be present when discussing symptoms and referral. All information provided should be accessible, as far as possible, to people with cognitive problems; people receiving information should have access to an interpreter or advocate if needed.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that if needed, other ways of communicating (for example, visual aids or simplified text) should be used.

Advance care planning

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

Quality statement

People with dementia are given the opportunity to discuss advance care planning at diagnosis and at each health and social care review.

Rationale

As dementia is a progressive condition, it is important for people to be able to make decisions about their future care early on, before they find it difficult to communicate or they lack the capacity to do so. This is known as advance care planning. It is important that there are opportunities to review and change the plan as the dementia progresses and if the preferences or needs of the person change. Having an advance care plan ensures that the person with dementia can receive treatment and care according to their preferences, even when they can no longer express them.

Quality measures

Structure
Evidence of local arrangements to ensure that people with dementia and people involved in their care have early and ongoing opportunities to discuss advance care planning.
Data source: Local data collection, for example, from local protocols.
Process
a) Proportion of people with dementia who are given information about advance care planning at diagnosis.
Numerator – the number in the denominator who were given information about advance care planning at diagnosis.
Denominator – the number of people with a new diagnosis of dementia.
Data source: Local data collection, for example, local audit of patient records.
b) Proportion of people with dementia having a health or social care review who have a documented discussion about advance care planning.
Numerator – the number in the denominator who have a documented discussion about advance care planning at their health or social care review.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, local audit of patient records.
Outcomes
a) Proportion of people with dementia who feel encouraged to make decisions about their future care.
Numerator – the number in the denominator who feel encouraged to make decisions about their future care.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia.
b) Proportion of people with dementia who are aware they can update their advance care plan at each care review.
Numerator – the number in the denominator who are aware they can update their advance care plan at each care review.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia.

What the quality statement means for different audiences

Service providers (such as memory clinics, community old age psychiatry services, local authorities, neurology clinics, geriatric medicine clinics, community care providers or general practices) ensure that systems are in place for people with dementia and people involved in their care to have early and ongoing opportunities to discuss advance care planning.
Health and social care professionals (such as occupational therapists, psychiatrists, clinical psychologists, geriatricians, neurologists, GPs, nurse consultants, advanced nurse practitioners, social workers and palliative care teams) give people with dementia and people involved in their care early and ongoing opportunities to discuss advance care planning.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that they commission services that give people with dementia and people involved in their care early and ongoing opportunities to discuss advance care planning.
People with dementia and people involved in their care are supported to plan ahead and make decisions about future care when dementia is diagnosed and every time they have a care review.

Source guidance

Definitions of terms used in this quality statement

The opportunity to discuss advance care planning
An opportunity for discussion about:
  • the benefits of planning ahead
  • lasting power of attorney (for decisions about health, welfare, property and financial affairs)
  • an advance statement about their wishes, preferences, beliefs and values regarding their future care
  • advance decisions to refuse treatment
  • their preferences for place of care and place of death
  • any cultural or religious preferences or practices.
This might involve giving information, providing contact details for when the person is ready to have a discussion, or having the discussion at that time, if the person is ready. Opportunities should be given to review and change any advance statements and decisions made at each care review.
[Expert opinion and NICE’s guideline on dementia, recommendations 1.1.12 and 1.1.13]

Equality and diversity considerations

People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating their preferences for care. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs. They should also establish the person’s current level of understanding; and whether they would like a person important to them to be present when discussing preferences about their care. All information provided should be accessible, as far as possible, to people with cognitive problems; people receiving information should have access to an interpreter or advocate if needed.

Coordinating care

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

Quality statement

People with dementia have a single named practitioner to coordinate their care.

Rationale

Dementia is a progressive condition with symptoms and care and support needs that change over time. People with dementia often have other long-term conditions, such as cardiovascular disease, diabetes, hearing loss and visual impairment, and many different practitioners might be involved in supporting their health and social care needs. To ensure that people with dementia experience person-centred care, it is important that there is a person responsible for supporting them through the disease course. The type of support needed will depend on the stage of dementia. During the earlier stages, this might be signposting to different services and support, whereas later it might be coordinating all aspects of their health and social care. The person with dementia can also develop and review a care and support plan with their named person.

Quality measures

Structure
a) Evidence of local arrangements to ensure that people with dementia have a single named health or social care practitioner to coordinate their care.
Data source: Local data collection, for example, service specifications.
b) Evidence of local agreement of the role and functions of the named practitioner.
Data source: Local data collection, for example, service specifications and job descriptions.
Process
a) Proportion of people with dementia who have a named practitioner responsible for coordinating their care.
Numerator – the number in the denominator who have a named practitioner responsible for coordinating their care.
Denominator – the number of people with dementia.
Data source: Local data collection. An indicator was piloted and shown to be feasible by the NICE indicator programme. See NICE indicator NM64.
b) Proportion of people with dementia who have a care and support plan.
Numerator – the number in the denominator who have a care and support plan.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, local audit of patient records.
Outcomes
a) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.
b) Carer-reported quality of life of carers of people with dementia.
Data source: Local data collection, for example, a survey of carers of people with dementia. The Public Health England Dementia Profile includes data on carer-reported quality-of-life score for people caring for someone with dementia.

What the quality statement means for different audiences

Service providers (such as dementia adviser services, local authorities, general practices, memory clinics, community old age psychiatry services and community care providers) ensure that systems are in place to identify and assign a single named practitioner to coordinate care for a person with dementia.
Health or social care practitioners (such as GPs, community psychiatric nurses, community matrons, psychologists, dementia advisers, occupational therapists or social workers) who are responsible for coordinating health and social care for a person with dementia get to know the person and their needs and preferences, and develop and review a care and support plan to ensure that services and care are delivered in a coordinated and timely manner.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that they commission services in which people with dementia are assigned a single named practitioner to coordinate their care. Commissioners make sure there is local agreement on the role and responsibilities of the person coordinating care.
People with dementia are told who in their care team has been chosen to coordinate their care and be their contact. They are given clear and up-to-date contact details for that person. The contact should keep the person and their family and carers at the centre of all decisions.

Source guidance

Definitions of terms used in this quality statement

Named practitioner to coordinate care
A single named health or social care practitioner who is responsible for coordinating care. The named practitioner should:
  • arrange an initial assessment of the person's needs, which should be face to face if possible
  • provide information about available services and how to access them
  • involve the person's family members or carers (as appropriate) in support and decision making
  • give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005
  • ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate
  • develop a care and support plan, and:
    • agree and review it with the involvement of the person, their family members or carers (as appropriate) and relevant professionals
    • specify in the plan when and how often it will be reviewed
    • evaluate and record progress towards the objectives at each review
    • ensure it covers the management of any comorbidities
    • provide a copy of the plan to the person and their family members or carers (as appropriate).
[NICE’s guideline on dementia, recommendations 1.3.1 and 1.3.2]

Equality and diversity considerations

Barriers to communication can hinder people's understanding of how they can be involved in their care. These barriers could include: mental health problems, learning or cognitive difficulties; physical, sight, speech or hearing difficulties; or difficulties with reading, understanding or speaking English. Adjustments should be made to ensure that all people with dementia can work with their named coordinator of care to plan their care, with access to an advocate if needed.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that, if needed, other ways of communicating (for example visual aids or simplified text) should be used.

Activities to promote wellbeing

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

Quality statement

People with dementia are supported to choose from a range of activities to promote wellbeing that are tailored to their preferences.

Rationale

The symptoms of dementia make it harder for a person to take part in activities, to engage socially, to maintain their independence, to communicate effectively, to feel in control and to care for themselves. Providing enjoyable and health-enhancing activities that are suitable for the stage of dementia can help with this. Understanding the activities that a person prefers, and thinks are suitable and helpful, with the input of family and carers if needed, and adapting them to their strengths and needs, will make a person more likely to engage with the activities offered.

Quality measures

Structure
a) Evidence of local arrangements to ensure that a range of activities are available that promote wellbeing for people with dementia.
Data source: Local data collection, for example, service specifications.
b) Evidence of local arrangements to ensure that people offering activities to promote wellbeing to people with dementia discuss the person’s preferences with them and tailor the activities to these.
Data source: Local data collection, for example, service protocols.
c) Evidence of local arrangements to support access to a range of activities that promote wellbeing for people with dementia, such as transport options.
Data source: Local data collection, for example, service specifications.
Process
a) Proportion of people with dementia who discuss activities to promote wellbeing at a review of their care plan.
Numerator – the number in the denominator who discuss activities to promote wellbeing at a review of their care plan.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, local audit of care plans.
b) Proportion of people with dementia who take part in activities to promote wellbeing that are tailored to their preferences.
Numerator – the number in the denominator who take part in activities to promote wellbeing that are tailored to their preferences.
Denominator – the number of people with dementia.
Data source: Local data collection, for example, local audit of patient records.
Outcomes
a) Self-reported or carer-reported level of satisfaction with activities to promote wellbeing.
Data source: Local data collection, for example, patient surveys.
b) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.
c) Level of independence of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia.

What the quality statement means for different audiences

Service providers (such as local authorities, community care providers, dementia adviser services, community old age psychiatry services and memory clinics) ensure that systems are in place for people with dementia to discuss their preferences and needs, to choose activities to promote wellbeing that are tailored to these, and to access the activities they have chosen.
Health and social care practitioners (such as occupational therapists, community psychiatric nurses, psychologists, care home nurses, healthcare assistants, activities coordinators, dementia advisers, wellbeing advisers and social workers) have a discussion with the person with dementia, and their families and carers if appropriate, about life experiences, circumstances, preferences, interests, strengths and needs. They are aware of the activities to promote wellbeing that are available locally and, based on this discussion, they help the person with dementia to choose activities that suit their preferences and needs.
Commissioners (such as local authorities and clinical commissioning groups) ensure that activities to promote wellbeing are available for people with dementia. They specify that providers offer people with dementia these activities based on a discussion of their preferences and needs.
People with dementia talk about their life experiences, circumstances, preferences, interests, strengths and needs with a professional and people involved in their care. They are told about suitable activities for improving their wellbeing, such as joining a local choir or walking group, and are supported to access the activities they choose.

Source guidance

Definitions of terms used in this quality statement

Activities to promote wellbeing
Activities such as exercise, aromatherapy, art, gardening, baking, reminiscence therapy, music therapy, mindfulness and animal-assisted therapy.
[NICE’s guideline on dementia, full guideline and expert opinion]
Tailored to their preferences
Interventions that the person with dementia considers to be feasible, acceptable, enjoyable, suitable and helpful. The activities offered should be based on an understanding of that individual’s unique set of life experiences, circumstances, preferences, strengths and needs.
[NICE’s guideline on dementia, full guideline]

Equality and diversity considerations

Offers of activities need to take account of any mental health conditions and learning or physical disabilities. Any information provided should be accessible to people with additional needs, such as physical, sensory or learning disabilities. Recommendation 1.1.2 in the NICE guideline on dementia highlights that if needed, other ways of communicating (for example, visual aids or simplified text) should be used.

Managing distress

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

Quality statement

People with dementia have a structured assessment before starting non-pharmacological or pharmacological treatment for distress.

Rationale

People with dementia can become distressed, which can lead to symptoms such as increased aggression, anxiety, apathy, agitation, depression, delusions, hallucinations and sleep disturbances. But these behaviours may have other causes, including pain, delirium or inappropriate care. Understanding the causes of these behaviours and addressing them before offering treatment can prevent things getting worse and prevent any harm. It can also avoid the use of unnecessary interventions, such as antipsychotic medication and antidepressants, which may not manage the symptoms effectively.

Quality measures

Structure
Evidence of local arrangements to ensure that people with dementia have a structured assessment before starting non-pharmacological or pharmacological treatment for distress.
Data source: Local data collection, for example, from local protocols.
Process
Proportion of people with dementia who have started non-pharmacological or pharmacological treatment for distress who had a structured assessment before starting treatment.
Numerator – the number in the denominator who had a structured assessment before starting treatment for distress.
Denominator – the number of people with dementia who have started non-pharmacological or pharmacological treatment for distress.
Data source: Local data collection, for example, local audit of patient records.
Outcomes
a) Antipsychotic prescribing rates for people with dementia.
Data source: NHS Digital publishes data on prescribing of antipsychotic medication in its recorded dementia diagnoses data collection.
b) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.

What the quality statement means for different audiences

Service providers (such as community mental health services, secondary care services, general practices, local authorities and community care providers) ensure that professionals carry out a structured assessment to check for and address any clinical or environmental causes of distress before starting any treatment for distress for people with dementia.
Health and social care professionals (such as occupational therapists, community psychiatric nurses, psychiatrists, community matrons, clinical psychologists, neurologists, geriatricians, social workers and GPs) carry out a structured assessment for people with dementia showing signs of distress, such as agitation or aggression, to explore reasons for the distress before starting treatment. They involve family members or carers in the assessment if needed. As part of the assessment, they check for any clinical or environmental causes of distress, for example, pain, discomfort, delirium, inappropriate care, infection, boredom, noise or temperature, using assessment tools and involving other professionals as needed. They decide how to address any identified causes of distress, and whether another professional or specialist service needs to be involved.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that services have systems in place to carry out a structured assessment for people with dementia to explore reasons for distress before starting treatment. The assessment should include checking for and addressing any clinical or environmental causes of distress, for example, pain, delirium or inappropriate care.
People with dementia have checks to see if there are any reasons why they are distressed and if so, what can be done. Reasons might include pain, infection or not having the right care. Professionals address any of these issues before starting treatment for distress.
Family members and carers of people with dementia are involved in checks to see if something is causing the person’s distress, if needed. Their involvement might be needed if, for example, the person with dementia lacks capacity, or needs support in communicating.

Source guidance

Definitions of terms used in this quality statement

Structured assessment
A multifactorial assessment to explore reasons for distress by checking for clinical causes, environmental impacts, medication issues, communication issues and sensory issues, using appropriate assessment tools.
[Expert opinion and NICE’s guideline on dementia, recommendation 1.7.1]
Non-pharmacological or pharmacological treatment for distress
Non-pharmacological treatment might include psychosocial and environmental interventions, and personalised activities to promote engagement, pleasure and interest. These might include calming and distracting an agitated person, environmental management (for example, adjusting temperature, noise and lighting) and activities like arts and crafts, movement to music and accompanied walks. In addition, anxiety and depression may be treated using cognitive behavioural therapy, multisensory stimulation, relaxation and animal-assisted therapies. Pharmacological interventions might include antipsychotics, antidepressants and pain killers.
[Expert opinion and NICE’s guideline on dementia, recommendations 1.7.2, 1.7.3 and 1.7.9 and full guideline]

Equality and diversity considerations

People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs. They should also establish the person’s current level of understanding; and whether they would like a person important to them to be present when discussing their distress.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that, if needed, other ways of communicating (for example, visual aids or simplified text) should be used.

Supporting carers

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

Quality statement

Carers of people with dementia are offered education and skills training.

Rationale

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

Quality measures

Structure
a) Evidence that education and skills training are available for carers of people with dementia.
Data source: Local data collection, for example, from service specifications or local protocols.
b) Evidence that education and skills training are tailored to the needs and preferences of carers of people with dementia.
Data source: Local data collection, for example, from service specifications or local protocols.
c) Evidence that support is available for carers to be able to attend training knowing that the person they care for will be safe and cared for.
Data source: Local data collection, for example, from service specifications.
Process
a) Proportion of carers of people with dementia who have a discussion about education and skills training.
Numerator – the number in the denominator who have a discussion about education and skills training.
Denominator – the number of carers of people with dementia.
Data source: Local data collection, for example, local audit of care plans for carers.
b) Proportion of carers of people with dementia who take part in education and skills training.
Numerator – the number in the denominator who take part in education and skills training.
Denominator – the number of carers of people with dementia.
Data source: Local data collection, for example, local audit of care plans for carers.
Outcomes
a) Carer-reported quality of life of carers of people with dementia.
Data source: Local data collection, for example, a survey of carers of people with dementia. The Public Health England Dementia Profile includes data on carer-reported quality-of-life score for people caring for someone with dementia.
b) Carer-reported level of satisfaction with the tailoring of the support to their needs and preferences.
Data source: Local data collection, for example, a survey of carers of people with dementia.
c) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.

What the quality statement means for different audiences

Service providers (such as general practices, local authorities, community care providers, secondary care services and the voluntary sector) provide training and support for carers of people with dementia and tailor this to the needs and preferences of the carer. They provide support so that carers can attend training knowing that the person they care for will be safe and well looked after.
Health and social care professionals (such as GPs, occupational therapists, community psychiatric nurses, psychiatrists, geriatricians, neurologists, clinical psychologists, practice nurses, hospital staff, Admiral nurses and social workers) have a discussion with carers of people with dementia about their needs and preferences for training and support. Based on this discussion, they help the carer to choose training and support that best suits them.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that training and support is available for carers of people with dementia. They specify that this should be tailored to carer’s needs and preferences. They ensure that support is provided so that carers can attend training knowing that the person they care for will be safe and well looked after.
Carers of people with dementia talk about the training and support they need and would like. They are told about training and support that would meet their needs and preferences. They receive support so that they can attend the training knowing that the person they care for will be safe and well looked after.

Source guidance

Definitions of terms used in this quality statement

Carers of people with dementia
A person who provides unpaid support to a partner, family member, friend or neighbour who has dementia and could not manage without this help. This is distinct from a care worker, who is paid to support people. A legal definition of a carer can be found in the Care Act 2014.
Education and skills training
Training and support that includes:
  • education about dementia, its symptoms and the changes to expect as the condition progresses
  • developing personalised strategies and building carer skills
  • training to help them provide care, including how to understand and respond to changes in behaviour
  • training to help them adapt their communication styles to improve interactions with the person living with dementia
  • advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing
  • advice on planning enjoyable and meaningful activities to do with the person they care for
  • information about relevant services (including support services and psychological therapies for carers) and how to access them
  • advice on planning for the future.
The support should be:
  • tailored to their needs and preferences and to what they want it to achieve (for example, providing information on carer's employment rights for carers who work or want to work)
  • designed to help them support people living with dementia
  • available at a location they can get to easily
  • provided in a format suitable for them (for example, individual or group sessions, or online training and support)
  • available from diagnosis and as needed after this.
[NICE’s guideline on dementia, recommendations 1.11.1 and 1.11.2]

Equality and diversity considerations

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

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Consider minimising the use of medicines associated with increased anticholinergic burden, and if possible look for alternatives:
  • when assessing whether to refer a person with suspected dementia for diagnosis
  • during medication reviews with people living with dementia.
For guidance on hearing assessments for people with suspected or diagnosed dementia, see assessment and referral in NICE's guidance on hearing loss.
A strategy of actively assessing people who are at risk for a particular disease, before they present with symptoms and before there is clinical suspicion of the condition. It does not refer to situations such as assessing people for dementia after an acute episode of delirium, where clinical suspicion of dementia is likely to already be raised.
Brief structured attachment-focused therapies for people with mild to moderate depression. These therapies are based on the idea that difficulties interacting with other people can cause psychological symptoms such as depressed mood, which then make the difficulties with interaction worse, causing a cycle. Interpersonal therapies aim to help people interact more effectively with others, and through this improve the psychological symptoms. Therapy typically focuses on relationship issues such as conflict, difficulty starting or maintaining relationships, grief and loss, and life changes.
Identifying functional goals that are relevant to the person living with dementia, and working with them and their family members or carers to achieve these. The emphasis is on improving or maintaining functioning in everyday life, building on the person's strengths and finding ways to compensate for impairments, and supporting independence. Cognitive rehabilitation does not aim to improve cognition, but it addresses the disability resulting from the impact of cognitive impairment on everyday functioning and activity. Rehabilitation is sometimes referred to as 'reablement'.
Episodic memories include information about recent or past events and experiences (rather than factual knowledge, or habits and skills). They may be recent, or from the distant past (remote or long-term episodic memory). Tests to assess episodic memory may use either verbal or visual material. Examples of verbal episodic memory tests include reading the person a list of words or a short story and asking them to recall this information, both immediately and after a delay.
A referral to a diagnostic service does not have to involve a clinic appointment. People can be seen in community settings (such as their home or a care home), or advice can be provided to the referrer without a formal appointment being made. The key issue is to ensure that dementia specialists are involved, both for advice on diagnosis and to ensure appropriate access to post-diagnostic support and treatment. Specialists are those with the appropriate knowledge and skills and include secondary care medical specialists (for example psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in assessing and diagnosing dementia.

Glossary

acetylcholinesterase
engaging in a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning
guided practice on a set of standard tasks that are designed to reflect particular cognitive functions; there may be a range of difficulty levels, to fit the tasks to each person's level of ability
fluorodeoxyglucose-positron emission tomography-CT
(for the purpose of starting and monitoring treatment with cholinesterase inhibitors and memantine) those with appropriate knowledge and skills and include secondary care medical specialists (for example psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in diagnosing and treating Alzheimer's disease
single photon emission CT

Paths in this pathway

Pathway created: May 2011 Last updated: June 2019

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