Dementia: assessment, management and support for people living with dementia and their carers

This guideline covers diagnosing and managing dementia (including Alzheimers disease). It aims to improve care by making recommendations on training staff and helping carers to support people living with dementia.

# About this guideline
Dementia is a term used to describe a range of cognitive and behavioural symptoms that can include memory loss, problems with reasoning and communication and change in personality, and a reduction in a person's ability to carry out daily activities, such as shopping, washing, dressing and cooking. The most common types of dementia are: Alzheimer's disease, vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. Dementia is a progressive condition, which means that the symptoms will gradually get worse. This progression will vary from person to person and each will experience dementia in a different way  people may often have some of the same general symptoms, but the degree to which these affect each person will vary (Dementia Gateway, Social Care Institute for Excellence).
A report published by the Alzheimer's Society found that in 2013 there were approximately 815,000 people living with dementia in the UK. If current trends continue, this number is expected to increase to 1,143,000 by 2025. In England, the National Dementia and Antipsychotic Prescribing Audit found that approximately 31,000 people were newly diagnosed with dementia in 2011. This is an increase of 8% between 2006 and 2011. Finally, in December 2017, there were 456,739 people on GP registers with a formal diagnosis of dementia, up from approximately 290,000 people in 2009/10, with the majority of this difference accounted for by an increase in diagnosis rates.
The Alzheimer's Society report found that in 2013 the total cost of dementia in the UK was estimated to be 26.3 billion. Of this, approximately 4.3 billion consists of health care, and approximately 10.3 billion consists of social care. The remaining 11.6 billion accounts for estimated unpaid care contributions.

# Why is it needed?
Providing care and support is very complex, because of the number of people living with dementia and the variation in the symptoms each person faces. This has led to considerable variation in practice. Areas that pose particular challenges for services and practitioners may include:
coordinating care and support between different services
what support carers need, and how this should be provided
staff training.
This guideline makes evidence-based recommendations aiming to support these areas of practice.
Dementia also has significant costs for health and social care services. Because of this, it is important to ensure that people living with dementia can get the care and support they need, and that services provide this in an efficient and cost-effective way.
In addition, new methods for diagnosing and assessing dementia have been developed. Amyloid imaging techniques have been licensed for use in the UK, and new evidence is available for cerebrospinal fluid examination. There is also evidence on different approaches to assess and diagnose dementia subtypes. The guideline makes new recommendations on dementia diagnosis, based on a review of the latest evidence.

# What does it cover?
This guideline addresses how dementia should be assessed and diagnosed. It covers person-centred care and support, tailored to the specific needs of each person living with dementia. As part of this, it can help professionals involve people living with dementia and their carers in decision-making, so they can get the care and support they need. It also addresses care coordination and staff training, and how dementia may impact on the care offered for other conditions.
The guideline does not cover every aspect of dementia care or support, or areas where recommendations would be the same for people with or without dementia. It focuses on areas where:
there is variation in practice, and enough evidence is available to identify what works best
people living with dementia need different care and support to people in the same situation who do not have dementia.

# How has it been developed?
This guideline has been developed by a multidisciplinary guideline committee, using an extensive review of research evidence. To ensure that the committee had the necessary social care expertise, a subgroup of social care practitioners was recruited to develop recommendations in this area.
Given the costs of dementia and the financial pressures facing health and social care services, the committee focused on making recommendations in areas where there is good evidence available. This will help services make the most of limited resources. For areas with a lack of evidence, the committee has made recommendations for future research (on health and social care topics) to address gaps in the evidence base. Future updates of the guideline will look at any relevant new research that has been published.
Some recommendations are made with more certainty than others. We word our recommendations to reflect this. In the sections on interventions we use 'offer' to reflect a strong recommendation, usually where there is clear evidence of benefit. We use 'consider' to reflect a recommendation for which the evidence of benefit is less certain. For more information see making decisions using NICE guidelines.

# How does it relate to statutory and non-statutory guidance?
The guideline complements existing legislation and guidance. It describes how services and professionals can provide high-quality care and support.
The Prime Minister's Challenge on Dementia 2020 sets out the UK Government's strategy for transforming dementia care within the UK. The aims of the strategy include:
improving diagnosis, assessment and care for people living with dementia
ensuring that all people living with dementia have equal access to diagnosis
providing all NHS staff with training on dementia appropriate to their role
ensuring that every person diagnosed with dementia receives meaningful care.
Since the 2006 NICE guideline on dementia was developed, key new legislation has been implemented. The Care Act 2014 created a new legislative framework for adult social care, and also gives carers a legal right to assessment and support.

## Relevant legislation and statutory guidance
NHS England (2015) Accessible Information Standard
Care Act 2014
Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
Department of Health (2014) Care Act 2014: Statutory Guidance for Implementation
Department of Health (2014) Positive and Proactive Care: Reducing the need for restrictive interventions
Health and Social Care Act 2012
Equality Act 2010
Mental Capacity Act 2005
Human Rights Act 1998

## Relevant policies and non-statutory guidance
Information Commissioner's Office (2017) Guide to the General Data Protection Regulation
NHS England (2017) Dementia: Good Care Planning
NHS England (2015) Implementation guide and resource pack for dementia care
Skills for Health, Health Education England and Skills for Care (2015) Dementia Core Skills Education and Training Framework. This framework was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care
Department of Health (2014) NHS Outcomes Framework 2015 to 2016
Department of Health (2014) Adult Social Care Outcomes Framework 2015 to 2016# Person-centred care
This guideline offers bestpractice advice on care and support for people living with dementia and their families and carers. The principles of personcentred care underpin good practice in dementia care, and they are reflected in the recommendations. These principles assert:
the human value of people living with dementia (regardless of age or cognitive impairment) and their families and carers
the individuality of people living with dementia, and how their personality and life experiences influence their response to dementia
the importance of the person's perspective
the importance of relationships and interactions with others to the person living with dementia, and their potential for promoting wellbeing.
Finally, the principles emphasise the importance of taking account of the needs of carers (whether they are family and friends or paid careworkers), and supporting and enhancing their input.# Recommendations
People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about 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.
NICE has also produced:
a guideline on decision making and mental capacity, which provides further details on how practitioners can support decision-making for people who may lack capacity now or in the future
patient decision aids on antipsychotic medicines for treating agitation, aggression and distress in people living with dementia and enteral (tube) feeding for people living with severe dementia.

# Involving people living with dementia in decisions about their care

## Involving people in decision-making
Encourage and enable people living with dementia to give their own views and opinions about their care.
If needed, use additional or modified ways of communicating (for example visual aids or simplified text).
Consider using a structured tool to assess the likes and dislikes, routines and personal history of a person living with dementia.

## Providing information
Provide people living with dementia and their family members or carers (as appropriate) with information that is relevant to their circumstances and the stage of their condition.
Be aware of the obligation to provide accessible information as detailed in the NHS Accessible Information Standard. For more guidance on providing information and discussing people's preferences with them, see the NICE guidelines on patient experience in adult NHS services and people's experience in adult social care services.
At diagnosis, offer the person and their family members or carers (as appropriate) oral and written information that explains:
what their dementia subtype is and the changes to expect as the condition progresses
which healthcare professionals and social care teams will be involved in their care and how to contact them
if appropriate, how dementia affects driving, and that they need to tell the Driver and Vehicle Licensing Agency (DVLA) and their car insurer about their dementia diagnosis
their legal rights and responsibilities
their right to reasonable adjustments (in line with the Equality Act 2010) if they are working or looking for work
how the following groups can help and how to contact them:
local support groups, online forums and national charities
financial and legal advice services
advocacy services.
If it has not been documented earlier, ask the person at diagnosis:
for their consent for services to share information
which people they would like services to share information with (for example family members or carers)
what information they would like services to share. Document these decisions in the person's records.
After diagnosis, direct people and their family members or carers (as appropriate) to relevant services for information and support (see recommendations 1.3.1 and 1.3.2 on care coordination).
For people who do not want follow-up appointments and who are not using other services, ask if they would like to be contacted again at a specified future date.
Ensure that people living with dementia and their carers know how to get more information and who from if their needs change.
Tell people living with dementia (at all stages of the condition) about research studies they could participate in.

## Advance care planning
Offer early and ongoing opportunities for people living with dementia and people involved in their care (see recommendation 1.1.7) to discuss:
the benefits of planning ahead
lasting power of attorney (for health and welfare decisions and property and financial affairs decisions)
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.Explain that they will be given chances to review and change any advance statements and decisions they have made.
At each care review, offer people the chance to review and change any advance statements and decisions they have made.

# Diagnosis

## Initial assessment in non-specialist settings
At the initial assessment take a history (including cognitive, behavioural and psychological symptoms, and the impact symptoms have on their daily life):
from the person with suspected dementia and
if possible, from someone who knows the person well (such as a family member).
If dementia is still suspected after initial assessment:
conduct a physical examination and
undertake appropriate blood and urine tests to exclude reversible causes of cognitive decline and
use cognitive testing.
When using cognitive testing, use a validated brief structured cognitive instrument such as:
the 10-point cognitive screener (10-CS)
the 6-item cognitive impairment test (6CIT)
the 6-item screener
the Memory Impairment Screen (MIS)
the Mini-Cog
Test Your Memory (TYM).
Do not rule out dementia solely because the person has a normal score on a cognitive instrument.
When taking a history from someone who knows the person with suspected dementia, consider supplementing this with a structured instrument such as the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) or the Functional Activities Questionnaire (FAQ).
Refer the person to a specialist dementia diagnostic service (such as a memory clinic or community old age psychiatry service) if:
reversible causes of cognitive decline (including delirium, depression, sensory impairment  or cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated and
dementia is still suspected.
If the person has suspected rapidly-progressive dementia, refer them to a neurological service with access to tests (including cerebrospinal fluid examination) for CreutzfeldtJakob disease and similar conditions.
For more guidance on assessing for dementia in people with learning disabilities, see the NICE guideline on mental health problems in people with learning disabilities.

## Diagnosis in specialist dementia diagnostic services
Diagnose a dementia subtype (if possible) if initial specialist assessment (including an appropriate neurological examination and cognitive testing) confirms cognitive decline and reversible causes have been ruled out.
If Alzheimer's disease is suspected, include a test of verbal episodic memory in the assessment.
Consider neuropsychological testing if it is unclear:
whether the person has cognitive impairment or
whether their cognitive impairment is caused by dementia or
what the correct subtype diagnosis is.
Use validated criteria to guide clinical judgement when diagnosing dementia subtypes, such as:
International consensus criteria for dementia with Lewy bodies
International FTD criteria for frontotemporal dementia (progressive non-fluent aphasia and semantic dementia)
International Frontotemporal Dementia Consortium criteria for behavioural variant frontotemporal dementia
NINDS-AIREN criteria (National Institute of Neurological Disorders and Stroke and Association Internationale pour la Recherche et l'Enseignement en Neurosciences) for vascular dementia
NIA criteria (National Institute on Aging) for Alzheimer's disease
Movement disorders Society criteria for Parkinson's disease dementia
International criteria for Creutzfeldt-Jakob disease.
Offer structural imaging to rule out reversible causes of cognitive decline and to assist with subtype diagnosis, unless dementia is well established and the subtype is clear.
Only consider further tests (recommendations 1.2.1528) if:
it would help to diagnose a dementia subtype and
knowing more about the dementia subtype would change management.
If the diagnosis is uncertain (see recommendation 1.2.14) and Alzheimer's disease is suspected, consider either:
FDG-PET (fluorodeoxyglucose-positron emission tomography-CT), or perfusion SPECT (singlephoton emission CT) if FDG-PET is unavailableor
examining cerebrospinal fluid for:
either total tau or total tau and phosphorylated-tau 181 and
either amyloid beta 142 or amyloid beta 142 and amyloid beta 140.
If a diagnosis cannot be made after one of these tests, consider using the other one.
Be aware that the older a person is, the more likely they are to get a false positive with cerebrospinal fluid examination.
Do not rule out Alzheimer's disease based solely on the results of CT or MRI scans.
Do not use Apolipoprotein E genotyping or electroencephalography to diagnose Alzheimer's disease.
Be aware that young-onset Alzheimer's disease has a genetic cause in some people.
If the diagnosis is uncertain (see recommendation 1.2.14) and dementia with Lewy bodies is suspected, use 123IFPCIT SPECT.
If 123IFPCIT SPECT is unavailable, consider 123IMIBG cardiac scintigraphy.
Do not rule out dementia with Lewy bodies based solely on normal results on 123IFPCIT SPECT or 123IMIBG cardiac scintigraphy.
If the diagnosis is uncertain (see recommendation 1.2.14) and frontotemporal dementia is suspected, use either:
FDG-PET or
perfusion SPECT.
Do not rule out frontotemporal dementia based solely on the results of structural, perfusion or metabolic imaging tests.
Be aware that frontotemporal dementia has a genetic cause in some people.
If the dementia subtype is uncertain and vascular dementia is suspected, use MRI. If MRI is unavailable or contraindicated, use CT.
Do not diagnose vascular dementia based solely on vascular lesion burden.
Be aware that young-onset vascular dementia has a genetic cause in some people.

## Case finding
Only conduct case finding for suspected dementia as part of a clinical trial that also provides an intervention to people diagnosed with dementia.

## Telling the difference between delirium and dementia in people without a diagnosis of either
For people who are in hospital and have cognitive impairment with an unknown cause, consider using one of the following to find out whether they have delirium or delirium superimposed on dementia, compared with dementia alone:
the long confusion assessment method (CAM)
the Observational Scale of Level of Arousal (OSLA).
Do not use standardised instruments (including cognitive instruments) alone to distinguish delirium from delirium superimposed on dementia.
If it is not possible to tell whether a person has delirium, dementia, or delirium superimposed on dementia, treat for delirium first. For guidance on treating delirium, see treating delirium in the NICE guideline on delirium.

## Review after diagnosis
After a person is diagnosed with dementia, ensure they and their family members or carers (as appropriate) have access to a memory service or equivalent hospital- or primary-care-based multidisciplinary dementia service.
Memory services and equivalent hospital- and primary-care-based multidisciplinary dementia services should offer a choice of flexible access or prescheduled monitoring appointments.
When people living with dementia or their carers have a primary care appointment, assess for any emerging dementia-related needs and ask them if they need any more support.

# Care coordination
Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.
Named professionals 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).

## Transferring information between services and care settings
When developing care and support plans and advance care and support plans, request consent to transfer these to different care settings as needed.
Service providers should ensure that information (such as care and support plans and advance care and support plans) can be easily transferred between different care settings (for example home, inpatient, community and residential care).
Staff delivering care and support should maximise continuity and consistency of care. Ensure that relevant information is shared and recorded in the person's care and support plan.

## Making services accessible
Service providers should design services to be accessible to as many people living with dementia as possible, including:
people who do not have a carer or whose carer cannot support them on their own
people who do not have access to affordable transport, or find transport difficult to use
people who have other responsibilities (such as work, children or being a carer themselves)
people with learning disabilities, sensory impairment (such as sight or hearing loss) or physical disabilities
people who may be less likely to access health and social care services, such as people from black, Asian and minority ethnic groups.

# Interventions to promote cognition, independence and wellbeing
Offer a range of activities to promote wellbeing that are tailored to the person's preferences.
Offer group cognitive stimulation therapy to people living with mild to moderate dementia.
Consider group reminiscence therapy for people living with mild to moderate dementia.
Consider cognitive rehabilitation or occupational therapy to support functional ability in people living with mild to moderate dementia.
Do not offer acupuncture to treat dementia.
Do not offer ginseng, vitamin E supplements, or herbal formulations to treat dementia.
Do not offer cognitive training to treat mild to moderate Alzheimer's disease.
Do not offer interpersonal therapy to treat the cognitive symptoms of mild to moderate Alzheimer's disease.
Do not offer non-invasive brain stimulation (including transcranial magnetic stimulation) to treat mild to moderate Alzheimer's disease, except as part of a randomised controlled trial.

# Pharmacological interventions for dementia

## Managing medicines for all dementia subtypes
For guidance on managing medicines (including covert administration), see the NICE guidelines on managing medicines for adults receiving social care in the community and managing medicines in care homes.

## Pharmacological management of Alzheimer's disease
The three acetylcholinesterase (AChE) inhibitors donepezil, galantamine and rivastigmine as monotherapies are recommended as options for managing mild to moderate Alzheimer's disease under all of the conditions specified in 1.5.5 and 1.5.6.This recommendation is from NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease.
Memantine monotherapy is recommended as an option for managing Alzheimer's disease for people with:
moderate Alzheimer's disease who are intolerant of or have a contraindication to AChE inhibitors or
severe Alzheimer's disease.Treatment should be under the conditions specified in 1.5.5.This recommendation is from NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease.
For people with an established diagnosis of Alzheimer's disease who are already taking an AChE inhibitor:
consider memantine in addition to an AChE inhibitor if they have moderate disease
-ffer memantine in addition to an AChE inhibitor if they have severe disease.
Treatment should be under the following conditions:
For people who are not taking an AChE inhibitor or memantine, prescribers should only start treatment with these on the advice of a clinician who has the necessary knowledge and skills. This could include:
secondary care medical specialists such as psychiatrists, geriatricians and neurologists
-ther healthcare professionals (such as GPs, nurse consultants and advanced nurse practitioners), if they have specialist expertise in diagnosing and treating Alzheimer's disease.
Once a decision has been made to start an AChE inhibitor or memantine, the first prescription may be made in primary care.
For people with an established diagnosis of Alzheimer's disease who are already taking an AChE inhibitor, primary care prescribers may start treatment with memantine (see recommendation 1.5.4) without taking advice from a specialist clinician.
Ensure that local arrangements for prescribing, supply and treatment review follow the NICE guideline on medicines optimisation.
Do not stop AChE inhibitors in people with Alzheimer's disease because of disease severity alone.
If prescribing an AChE inhibitor (donepezil, galantamine or rivastigmine), treatment should normally be started with the drug with the lowest acquisition cost (taking into account required daily dose and the price per dose once shared care has started). However, an alternative AChE inhibitor could be prescribed if it is considered appropriate when taking into account adverse event profile, expectations about adherence, medical comorbidity, possibility of drug interactions and dosing profiles.This recommendation is from NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease.
When using assessment scales to determine the severity of Alzheimer's disease, healthcare professionals should take into account any physical, sensory or learning disabilities, or communication difficulties that could affect the results and make any adjustments they consider appropriate. Healthcare professionals should also be mindful of the need to secure equality of access to treatment for patients from different ethnic groups, in particular those from different cultural backgrounds.This recommendation is from NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease.
When assessing the severity of Alzheimer's disease and the need for treatment, healthcare professionals should not rely solely on cognition scores in circumstances in which it would be inappropriate to do so. These include:
if the cognition score is not, or is not by itself, a clinically appropriate tool for assessing the severity of that patient's dementia because of the patient's learning difficulties or other disabilities (for example, sensory impairments), linguistic or other communication difficulties or level of education or
if it is not possible to apply the tool in a language in which the patient is sufficiently fluent for it to be appropriate for assessing the severity of dementia or
if there are other similar reasons why using a cognition score, or the score alone, would be inappropriate for assessing the severity of dementia.In such cases healthcare professionals should determine the need for initiation or continuation of treatment by using another appropriate method of assessment.This recommendation is from NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease.
Do not offer the following specifically to slow the progress of Alzheimer's disease, except as part of a randomised controlled trial:
diabetes medicines
hypertension medicines
statins
non-steroidal anti-inflammatory drugs (NSAIDs), including aspirin.

## Pharmacological management of non-Alzheimer's dementia
June 2018  the use of the medicines in recommendations 1.5.10 to 1.5.14 was off label. See NICE's information on prescribing medicines.
Offer donepezil or rivastigmine to people with mild to moderate dementia with Lewy bodies.
Only consider galantamine for people with mild to moderate dementia with Lewy bodies if donepezil and rivastigmine are not tolerated.
Consider donepezil or rivastigmine for people with severe dementia with Lewy bodies.
Consider memantine for people with dementia with Lewy bodies if AChE inhibitors are not tolerated or are contraindicated.
Only consider AChE inhibitors or memantine for people with vascular dementia if they have suspected comorbid Alzheimer's disease, Parkinson's disease dementia or dementia with Lewy bodies.
Do not offer AChE inhibitors or memantine to people with frontotemporal dementia. Note that logopenic aphasia, which has previously been included in some diagnostic guidelines for frontotemporal dementia, has now been shown to most commonly be caused by Alzheimer's disease
Do not offer AChE inhibitors or memantine to people with cognitive impairment caused by multiple sclerosis.
For guidance on pharmacological management of Parkinson's disease dementia, see Parkinson's disease dementia in the NICE guideline on Parkinson's disease.

# Medicines that may cause cognitive impairment
Be aware that some commonly prescribed medicines are associated with increased anticholinergic burden, and therefore cognitive impairment.
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.
Be aware that there are validated tools for assessing anticholinergic burden (for example, the Anticholinergic Cognitive Burden Scale), but there is insufficient evidence to recommend one over the others.
For guidance on carrying out medication reviews, see medication review in the NICE guideline on medicines optimisation.

# Managing non-cognitive symptoms

## Agitation, aggression, distress and psychosis
Before starting non-pharmacological or pharmacological treatment for distress in people living with dementia, conduct a structured assessment to:
explore possible reasons for their distress and
check for and address clinical or environmental causes (for example pain, delirium or inappropriate care).
As initial and ongoing management, offer psychosocial and environmental interventions to reduce distress in people living with dementia.
Only offer antipsychotics for people living with dementia who are either:
at risk of harming themselves or others or
experiencing agitation, hallucinations or delusions that are causing them severe distress.Follow the 2012 MHRA advice for health and social care professionals on prescribing antipsychotics to people living with dementia.June 2018  note that this is an off-label use for almost all antipsychotics (see prescribing risperidone and haloperidol). See NICE's information on prescribing medicines.
Be aware that for people with dementia with Lewy bodies or Parkinson's disease dementia, antipsychotics can worsen the motor features of the condition, and in some cases cause severe antipsychotic sensitivity reactions. For more guidance, see the advice on managing delusions and hallucinations in the NICE guideline on Parkinson's disease. Be aware that interventions may need to be modified for people living with dementia.
Before starting antipsychotics, discuss the benefits and harms with the person and their family members or carers (as appropriate). Consider using a decision aid to support this discussion. NICE has produced a patient decision aid on antipsychotic medicines for treating agitation, aggression and distress in people living with dementia.
When using antipsychotics:
use the lowest effective dose and use them for the shortest possible time
reassess the person at least every 6 weeks, to check whether they still need medication.
Stop treatment with antipsychotics:
if the person is not getting a clear ongoing benefit from taking them and
after discussion with the person taking them and their family members or carers (as appropriate).
Ensure that people living with dementia can continue to access psychosocial and environmental interventions for distress while they are taking antipsychotics and after they have stopped taking them.
For people living with dementia who experience agitation or aggression, offer personalised activities to promote engagement, pleasure and interest.
Do not offer valproate to manage agitation or aggression in people living with dementia, unless it is indicated for another condition. If relevant, follow MHRA advice that valproate medicines are contraindicated in women and girls of childbearing potential unless a Pregnancy Prevention Programme is in place.

## Depression and anxiety
For people living with mild to moderate dementia who have mild to moderate depression and/or anxiety, consider psychological treatments.
Do not routinely offer antidepressants to manage mild to moderate depression in people living with mild to moderate dementia, unless they are indicated for a pre-existing severe mental health problem.

## Sleep problems
Do not offer melatonin to manage insomnia in people living with Alzheimer's disease.
For people living with dementia who have sleep problems, consider a personalised multicomponent sleep management approach that includes sleep hygiene education, exposure to daylight, exercise and personalised activities.

## Parkinson's disease
For guidance on managing Parkinson's disease symptoms in people with Parkinson's disease dementia or dementia with Lewy bodies, see the NICE guideline on Parkinson's disease. Be aware that interventions may need to be modified for people living with dementia.

# Assessing and managing other long-term conditions in people living with dementia
Ensure that people living with dementia have equivalent access to diagnosis, treatment and care services for comorbidities to people who do not have dementia. For more guidance on assessing and managing multimorbidity, see the NICE guidelines on multimorbidity and older people with social care needs and multiple long-term conditions.
For more guidance on providing support for older adults with learning disabilities, see the NICE guideline on care and support of people growing older with learning disabilities.

## Pain
Consider using a structured observational pain assessment tool:
alongside self-reported pain and standard clinical assessment for people living with moderate to severe dementia
alongside standard clinical assessment for people living with dementia who are unable to self-report pain.
For people living with dementia who are in pain, consider using a stepwise treatment protocol that balances pain management and potential adverse events.
Repeat pain assessments for people living with dementia:
who seem to be in pain
who show signs of behavioural changes that may be caused by pain
after any pain management intervention.

## Falls
For guidance on managing the risk of falling for people living with dementia (in community and inpatient settings), see the NICE guideline on falls in older people. When using this guideline:
take account of the additional support people living with dementia may need to participate effectively
be aware that multifactorial falls interventions may not be suitable for a person living with severe dementia.

## Diabetes
For guidance on setting HbA1c targets for people living with severe dementia who have type 2 diabetes, see recommendation 1.6.9 in the NICE guideline on type 2 diabetes in adults.

## Incontinence
For guidance on pharmacological treatment of overactive bladder, see the NICE technology appraisal on mirabegron for treating symptoms of overactive bladder.
For guidance on treating faecal incontinence, see recommendations 1.7.2 and 1.7.8 in the NICE guideline on faecal incontinence.

## Sensory impairment
For guidance on hearing assessments for people with suspected or diagnosed dementia, see adults with suspected dementia in the NICE guideline on hearing loss.
Encourage people living with dementia to have eye tests every 2 years. Consider referring people who cannot organise appointments themselves.

# Risks during hospital admission
Be aware of the increased risk of delirium in people living with dementia who are admitted to hospital. See the NICE guideline on delirium for interventions to prevent and treat delirium.
When thinking about admission to hospital for a person living with severe dementia, carry out an assessment that balances their current medical needs with the additional harms they may face in hospital, for example:
disorientation
a longer length of stay
increased mortality
increased morbidity on discharge
delirium
the effects of being in an impersonal or institutional environment.
When thinking about admission to hospital for a person living with dementia, take into account:
any advance care and support plans
the value of keeping them in a familiar environment.

# Palliative care
From diagnosis, offer people living with dementia flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be.
For people living with dementia who are approaching the end of life, use an anticipatory healthcare planning process (see recommendation 1.1.12 on advance care planning). Involve the person and their family members or carers (as appropriate) as far as possible, and use the principles of best-interest decision-making if the person does not have capacity to make decisions about their care.
For standards and measures on palliative care, see the NICE quality standard on end of life care for adults.
For guidance on care for people in the last days of life, see the NICE guideline on care of dying adults.
For guidance on best interests decision-making, see the NICE guideline on decision-making and mental capacity.
Encourage and support people living with dementia to eat and drink, taking into account their nutritional needs.
Consider involving a speech and language therapist if there are concerns about a person's safety when eating and drinking.
Do not routinely use enteral feeding in people living with severe dementia, unless indicated for a potentially reversible comorbidity. NICE has produced a patient decision aid on enteral (tube) feeding for people living with severe dementia.

# Supporting carers
Offer carers of people living with dementia a psychoeducation and skills training intervention 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.
Ensure that the support provided to carers is:
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.
Be aware that carer interventions are likely to be most effective when provided as group sessions.
Advise carers about their right to carer assessment, and assessment for respite care and other support (see the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of families and carers).
Be aware that carers of people living with dementia are at an increased risk of depression. For guidance on identifying and managing depression, see the NICE guideline on depression in adults.

# Moving to different care settings
For guidance on managing transition between care settings for people living with dementia, see:
the NICE guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs
the NICE guideline on transition between inpatient mental health settings and community or care home settings
section 1.2 of the NICE guideline on medicines optimisation.Follow the principles in these guidelines for transitions between other settings (for example from home to a care home or respite care).
Review the person's needs and wishes (including any care and support plans and advance care and support plans) after every transition.

# Staff training and education
Care and support providers should provide all staff with training in person-centred and outcome-focused care for people living with dementia, which should include:
understanding the signs and symptoms of dementia, and the changes to expect as the condition progresses
understanding the person as an individual, and their life story
respecting the person's individual identity, sexuality and culture
understanding the needs of the person and their family members or carers
the principles of the Mental Capacity Act 2005 and the Care Act 2014.
Care providers should provide additional face-to-face training and mentoring to staff who deliver care and support to people living with dementia. This should include:
understanding the organisation's model of dementia care and how it provides care
how to monitor and respond to the lived experience of people living with dementia, including adapting communication styles
initial training on understanding, reacting to and helping people living with dementia who experience agitation, aggression, pain, or other behaviours indicating distress
follow-up sessions where staff can receive additional feedback and discuss particular situations
advice on interventions that reduce the need for antipsychotics and allow doses to be safely reduced
promoting freedom of movement and minimising the use of restraint
if relevant to staff, the specific needs of younger people living with dementia and people who are working or looking for work.
Consider giving carers and/or family members the opportunity to attend and take part in staff dementia training sessions.
Consider training staff to provide multi-sensory stimulation for people with moderate to severe dementia and communication difficulties.
Ensure that all health and social care staff are aware of:
the extent of their responsibility to protect confidentiality under data protection legislation and
any rights that family members, carers and others have to information about the person's care (see recommendation 1.3.5 on information sharing between different care settings).
Health and social care professionals advising people living with dementia (including professionals involved in diagnosis) should be trained in starting and holding difficult and emotionally challenging conversations.

# Terms used in this guideline

## Case finding
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.

## Cognitive rehabilitation
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 addresses the disability resulting from the impact of cognitive impairment on everyday functioning and activity. Rehabilitation is sometimes referred to as 'reablement'.

## Cognitive stimulation
Engaging in a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning.

## Cognitive training
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.

## Interpersonal therapy
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.

## Prescribing risperidone and haloperidol
The marketing authorisation for risperidone only covers short-term treatment (up to 6 weeks) of persistent aggression in people with moderate to severe Alzheimer's disease unresponsive to non-pharmacological approaches and when there is a risk of harm to self or others. The marketing authorisation for haloperidol only covers treatment of persistent aggression and psychotic symptoms in people with moderate to severe Alzheimer's dementia and vascular dementia when non-pharmacological treatments have failed and when there is a risk of harm to self or others.

## Refer
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.

## Social care terms
For social care terms see the Think Local, Act Personal Care and Support Jargon Buster.

## Specialist clinician
Specialist clinicians (for the purpose of starting and monitoring treatment with cholinesterase inhibitors and memantine) 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 diagnosing and treating Alzheimer's disease.

## Verbal episodic memory
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.# Putting this guideline into practice
NICE has produced tools and resources to help you put this guideline into practice.
Putting recommendations into practice can take time. How long may vary from guideline to guideline, and depends on how much change in practice or services is needed. Implementing change is most effective when aligned with local priorities.
Changes recommended for clinical practice that can be done quickly  like changes in prescribing practice  should be shared quickly. This is because healthcare professionals should use guidelines to guide their work  as is required by professional regulating bodies such as the General Medical and Nursing and Midwifery Councils.
Changes should be implemented as soon as possible, unless there is a good reason for not doing so (for example, if it would be better value for money if a package of recommendations were all implemented at once).
Different organisations may need different approaches to implementation, depending on their size and function. Sometimes individual practitioners may be able to respond to recommendations to improve their practice more quickly than large organisations.
Here are some pointers to help organisations put NICE guidelines into practice:
. Raise awareness through routine communication channels, such as email or newsletters, regular meetings, internal staff briefings and other communications with all relevant partner organisations. Identify things staff can include in their own practice straight away.
. Identify a lead with an interest in the topic to champion the guideline and motivate others to support its use and make service changes, and to find out any significant issues locally.
. Carry out a baseline assessment against the recommendations to find out whether there are gaps in current service provision.
. Think about what data you need to measure improvement and plan how you will collect it. You may want to work with other health and social care organisations and specialist groups to compare current practice with the recommendations. This may also help identify local issues that will slow or prevent implementation.
. Develop an action plan, with the steps needed to put the guideline into practice, and make sure it is ready as soon as possible. Big, complex changes may take longer to implement, but some may be quick and easy to do. An action plan will help in both cases.
. For very big changes include milestones and a business case, which will set out additional costs, savings and possible areas for disinvestment. A small project group could develop the action plan. The group might include the guideline champion, a senior organisational sponsor, staff involved in the associated services, finance and information professionals.
. Implement the action plan with oversight from the lead and the project group. Big projects may also need project management support.
. Review and monitor how well the guideline is being implemented through the project group. Share progress with those involved in making improvements, as well as relevant boards and local partners.
NICE provides a comprehensive programme of support and resources to maximise uptake and use of evidence and guidance. See our into practice pages for more information.
Also see Leng G, Moore V, Abraham S, editors (2014) Achieving high quality care  practical experience from NICE. Chichester: Wiley.# Recommendations for research
The guideline committee has made the following recommendations for research. The committee's full set of research recommendations is detailed in the full guideline.

# Case management
What is the effectiveness and cost effectiveness of high-intensity case management compared with usual care on quality of life (for the person living with dementia and for their carers) and the timing of entry to long-term care?

## Why this is important
There is evidence that case management is an effective intervention for people living with dementia. However, the effectiveness and cost effectiveness of high-intensity case management has not been tested in the UK. It has a high upfront cost, but there is some evidence from settings outside the UK that it may reduce the use of other services, leading to cost savings across the whole system. Because of the cost, robust evidence of effectiveness and cost effectiveness from a UK setting is needed.

# Staff training
What is the cost effectiveness of using a dementia-specific addition to the Care Certificate for community staff, including dementia-specific elements on managing anxiety, communication, nutritional status and personal care?

## Why this is important
Robust evidence demonstrates the effectiveness of intensive training for staff heavily involved in providing care and support for people living with dementia. However, it is not clear if it is effective to provide basic training to all staff who come into contact with people living with dementia, or how this training should be provided. One possibility is an expanded version of the Care Certificate that includes additional dementia-specific elements. Because this training would need to be given to a large number of staff, there needs to be good evidence of benefits, specifically in improving quality of life for people living with dementia and their carers, to justify the upfront costs.

# Anticholinergic burden
Does actively reducing anticholinergic burden in people living with dementia improve cognitive outcomes compared with usual care?

## Why this is important
Many people living with dementia are still prescribed medicines with a high anticholinergic burden (which can be caused by individual medicines or by combinations of medicines). It is often unclear if this prescribing is appropriate, or whether actively reducing the number of these medicines would improve cognition. Randomised controlled trials could be conducted, using structured tools to assess anticholinergic burden and actively switching medicines if possible. This would help to identify whether cognition can be improved without adversely affecting the management of the conditions these medicines are prescribed for.

# Managing delirium superimposed on dementia
What are the most clinically and cost-effective non-pharmacological interventions for helping the long-term recovery of people with delirium superimposed on dementia?

## Why this is important
The acute management of delirium superimposed on dementia is likely to be similar to the management of delirium in people without dementia. However, there may be differences in the interventions needed to aid long-term recovery, particularly because people with different severities of dementia will have different baseline cognitive status. Research on the most effective non-pharmacological methods of promoting long-term recovery would help to identify whether alternative approaches are needed for people living with dementia.

# Care and support planning
What are the most effective methods of care planning for people who do not have regular contact with an informal carer?

## Why this is important
Many randomised controlled trials of care planning or case management specifically exclude people without an informal carer. Conducting similar studies on case management and care planning for people without an informal carer would fill this gap in the evidence base, and help to identify whether these people have different needs.