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Dementia, disability and frailty in later life: mid-life approaches to delay or prevent onset
About
What is covered
This NICE Pathway covers approaches in mid-life to delay or prevent the onset of dementia, disability and frailty in later life. It aims to increase the amount of time that people can be independent, healthy and active in later life by:
- helping people stop smoking, be more active, reduce alcohol consumption, improve their diet and, if necessary, lose weight and maintain a healthy weight
- reducing the incidence of other non-communicable chronic conditions that can contribute to the onset of dementia, disability and frailty
- increasing people's resilience, for example by improving their social and emotional wellbeing.
Updates
Updates to this NICE Pathway
27 June 2019 Dementia (NICE quality standard 184) added.
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
What is covered
This NICE Pathway covers approaches in mid-life to delay or prevent the onset of dementia, disability and frailty in later life. It aims to increase the amount of time that people can be independent, healthy and active in later life by:
- helping people stop smoking, be more active, reduce alcohol consumption, improve their diet and, if necessary, lose weight and maintain a healthy weight
- reducing the incidence of other non-communicable chronic conditions that can contribute to the onset of dementia, disability and frailty
- increasing people's resilience, for example by improving their social and emotional wellbeing.
Updates
Updates to this NICE Pathway
27 June 2019 Dementia (NICE quality standard 184) added.
Sources
NICE guidance and other sources used to create this interactive flowchart.
Disability, dementia and frailty in later life: mid-life approaches to delay or prevent onset (2015) NICE guideline NG16
Dementia (2019) NICE quality standard 184
Quality standards
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
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
Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset (2015) NICE guideline NG16, recommendations 2, 4 and 9
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.2.6
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.1.12 and 1.1.13
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.3.1
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.4.1
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.7.1
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
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.11.1
Definitions of terms used in this quality statement
Carers of people with dementia
A person who provides unpaid support to a partner, family member, friend or neighbour who has dementia and could not manage without this help. This is distinct from a care worker, who is paid to support people. A legal definition of a carer can be found in the Care Act 2014.
[Adapted from the Think Local, Act Personal care and support jargon buster]
Education and skills training
Training and support that includes:
- education about dementia, its symptoms and the changes to expect as the condition progresses
- developing personalised strategies and building carer skills
- training to help them provide care, including how to understand and respond to changes in behaviour
- training to help them adapt their communication styles to improve interactions with the person living with dementia
- advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing
- advice on planning enjoyable and meaningful activities to do with the person they care for
- information about relevant services (including support services and psychological therapies for carers) and how to access them
- advice on planning for the future.
The support should be:
- tailored to their needs and preferences and to what they want it to achieve (for example, providing information on carer's employment rights for carers who work or want to work)
- designed to help them support people living with dementia
- available at a location they can get to easily
- provided in a format suitable for them (for example, individual or group sessions, or online training and support)
- available from diagnosis and as needed after this.
[NICE’s guideline on dementia, recommendations 1.11.1 and 1.11.2]
Equality and diversity considerations
Offers of training and support for carers of people with dementia need to take account of any physical or mental health conditions, learning or physical disabilities that make it difficult to access training and support.
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Effective interventions library
Successful effective interventions library details
Implementation
NICE has produced resources to help implement its guidance on:
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
Accessibility is the ease with which a person can access a commodity, facility or service. It includes number and location, of facilities or outlets, their opening times, and the distance and ease of travel.
Affordability measures include the use of taxation, pricing and subsidies to deter purchase of unhealthy commodities such as foods that have a high saturated fat and/or sugar content, cigarettes and alcohol, and to encourage the purchase of healthier options such as foods that are low in fat and sugar.
Acceptability is the extent to which a certain behaviour is considered normal and acceptable within society as a whole or with in subpopulations. It is sometimes referred to as the social norm. It can be influenced by advertising, legislation, and culture.
Behaviour change programmes are a coordinated set of interventions, which aim to change the health behaviours of individuals, communities or whole populations
Brief advice can take from 30 seconds to a couple of minutes to deliver. It is mainly about giving people information, or directing them where to go for further help. It may also include other activities such as raising awareness of risks, or providing encouragement and support for change. It follows an 'ask, advise, assist' structure. For example, brief advice on smoking would involve recording the person's smoking status and advising them that stop smoking services offer effective help to quit. Then, depending on the person's response, they may be directed to these services for additional support.
Disability: Any long-term restriction on a person's ability to perform an activity in the way, or within the range, considered normal. This may be because of limited body function or structure, or personal or environmental factors.
Frailty typically means a person is at a higher risk of a sudden deterioration in their physical and mental health. Frailty is distinct from living with 1 or more long-term conditions or disabilities, although there may be overlaps in their management (British Geriatric Society 2014).
Free sugars include table sugar (sucrose), glucose, fructose, and lactose that are added to food and beverages by manufacturers, cooks and consumers. Free sugars also include the naturally present sugars in honey, syrups, fruit juices and fruit concentrates. The term free sugars does not include the natural sugars found in non-refined foodstuffs, such as brown rice or fruit. (Adapted from the World Health Organization definition, 2014).
Population-level initiatives are national, regional or local policies or campaigns that address the underlying social, economic and environmental conditions of a population, with the aim of improving everyone's health. This type of intervention could include population-wide distribution of leaflets that highlight the importance of being physically active, adopting a healthy diet and being a healthy weight. It could also include taxation and legislative measures to change the availability and affordability of certain products (such as reducing the density of take-away outlets in an area).
Glossary
Paths in this pathway
- Strategy, policy and commissioning to delay or prevent onset of dementia, disability and frailty
- Interventions to delay or prevent onset of dementia, disability and frailty
Pathway created: October 2015 Last updated: November 2020
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