Dementia: assessment, management and support: summary of updated NICE guidance
BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k2438 (Published 20 June 2018) Cite this as: BMJ 2018;361:k2438
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Pharmaceutical management of dementia, including Alzheimer's disease, dementia with lewy bodies, vascular dementia, frontotemporal dementia, and cognitive impairment caused by multiple sclerosis.
- Joshua Pink, technical adviser1,
- John O’Brien, professor of old age psychiatry2,
- Louise Robinson, professor of primary care and ageing3,
- Damien Longson, consultant liaison psychiatrist, chair of Guideline Committee4
- on behalf of the Guideline Committee
- 1National Institute for Health and Care Excellence, Manchester M1 4BT, UK
- 2Department of Psychiatry, University of Cambridge, Cambridge Biomedical Campus, Cambridge CB2 0SP, UK
- 3Newcastle University Institute for Ageing and Institute for Health & Society, Newcastle University, Newcastle Biomedical Research Building, Campus for Ageing and Vitality, Newcastle upon Tyne NE4 5PL, UK
- 4Greater Manchester Mental Health Foundation Trust, Bury New Road, Prestwich, Manchester M25 3BL, UK
- Correspondence to: J Pink joshua.pink{at}nice.org.uk
What you need to know
When using cognitive testing in primary care, use brief, validated tools such as 10 point cognitive screener (10-CS) or 6 item cognitive impairment test (6CIT) rather than longer tests such as the MMSE
People living with dementia should be provided with a single health or social care professional to coordinate their care
For people with mild to moderate dementia, offer group cognitive stimulation therapy but not cognitive training
High anticholinergic burden can lead to cognitive impairment, thereby worsening the cognitive symptoms of dementia or causing false positive diagnoses: validated tools, such as the Anticholinergic Cognitive Burden Scale, can determine whether this is an issue
Inform carers of people living with dementia that they are entitled to a formal needs assessment and assessment for respite and should be offered access to psychoeducation and skills training
Dementia describes a range of cognitive, behavioural, and psychological symptoms that can include memory loss, problems with reasoning and communication, and change in personality which impair a person’s ability to carry out daily activities.
A report published by the Alzheimer’s Society in 2013 found there were about 815 000 people living with dementia in the UK (corresponding to a prevalence of 1 in 14 in people over 65 years old), and this number is expected to increase to 1 143 000 by 2025.1 In November 2017, there were 456 739 people on general practice registers with a formal diagnosis of dementia, up from approximately 290 000 people in 2009-10,2 with most of this difference accounted for by an increase in diagnosis rates. Despite this improvement in diagnosis, around 1 in 3 people with established dementia remain unrecognised, and around half of people living with dementia in England do not feel they are getting sufficient post-diagnostic support.3
This article summarises the most recent recommendations from the National Institute for Health and Care Excellence (NICE) guideline for the assessment, management, and support of people living with dementia and their carers. Recommendations, full details of evidence, and the pathway are available via the NICE website.4 This guideline is a full update of and replaces the 2006 NICE dementia guideline.
What’s new in this guidance
Updated recommendations on pharmacological management of Alzheimer’s disease, including:
Offer co-prescription of cholinesterase inhibitors and memantine for severe Alzheimer’s disease and consider co-prescription in moderate Alzheimer’s disease
Treatments may be prescribed in primary care as well as specialist settings, and memantine may be added for people already taking cholinesterase inhibitors without taking advice from a specialist clinician
Recommendations on providing structured psychoeducation and skills training interventions for all carers of people living with dementia
Recommendations on new diagnostic tests (such as cerebrospinal fluid examination for Alzheimer’s disease and cardiac scintigraphy for dementia with Lewy bodies) for the differential diagnosis of dementia subtypes, which were not recommended in the 2006 version of the guideline
Recommendations
NICE recommendations are based on systematic reviews of the best available evidence and explicit consideration of cost effectiveness. When minimal evidence is available, recommendations are based on the Guideline Committee’s experience and opinion of what constitutes good practice. Evidence levels for the recommendations are given in italic in square brackets.
Involving people living with dementia in decisions about their care
People living with dementia can often be left out of decisions about their care, or information can be communicated suboptimally. People living with dementia also often do not volunteer their own thoughts on their care, so health professionals should actively encourage and enable people living with dementia to give their views and opinions about their care, which may involve modifying ways of communicating and making use of structured tools to support communication. From the start of the diagnostic process and for the rest of the person’s life, give people (and their carers and family members) accessible information about their condition, what to expect in the future, and their legal rights. Request consent for information sharing, and document this in the person’s records.
Diagnosis—initial assessment in non-specialist settings
Overview
History is one of the most important aspects of the assessment. Cognitive testing can be used, but a normal score alone does not rule out dementia. Refer to a specialist service if there is still clinical suspicion of dementia after reversible causes of cognitive decline have been investigated. Shorter cognitive testing, such as the 10-point cognitive screener (10-CS) and 6-item cognitive impairment test (6CIT), are recommended rather than longer tests such as the MOCA or MMSE.
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
If possible, from someone who knows the person well (such as a family member).
[Based on the experience and opinion of the Guideline Committee (GC)]
If dementia is still suspected after initial assessment:
Conduct a physical examination
Undertake appropriate blood and urine tests to exclude reversible causes of cognitive decline
Use cognitive testing (see box 1).
[Based on low to high quality evidence from diagnostic test accuracy studies and the experience and opinion of the GC]
Do not rule out dementia solely because the person has a normal score on a cognitive instrument. [Based on low to high quality evidence from diagnostic test accuracy studies]
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). [Based on moderate quality evidence from diagnostic test accuracy studies]
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 (such as sight or hearing loss), and cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated and
Dementia is still suspected.
[Based on the experience and opinion of the GC]
Recommended cognitive tests*
When using cognitive testing, use a validated brief structured cognitive instrument such as:
10-point cognitive screener (10-CS)
6-item cognitive impairment test (6CIT)
6-item screener
Memory Impairment Screen (MIS)
Mini-Cog
Test Your Memory (TYM)
*These tests were found to be broadly similar in their properties, and NICE did not recommend one over the others. NICE did not find evidence of additional accuracy to justify recommending longer, more time consuming tests such as the MOCA or MMSE.
The tests’ limited sensitivity means a normal score does not preclude the presence of dementia
The guideline also contains recommendations on dementia diagnosis in specialist settings (including the use of cognitive testing, neuropsychological assessment, and imaging) and recommendations on case finding, differentiating dementia and delirium (see box 2), and post-diagnostic monitoring. There was limited evidence for the ordering of imaging in primary care as most studies focused on subtyping rather than whether a person had dementia or not. Therefore, recommendations on imaging were restricted to specialist settings.
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).
[Based on low to moderate quality evidence from diagnostic test accuracy studies]
Do not use standardised instruments (including cognitive instruments) alone to distinguish delirium from delirium superimposed on dementia. [Based on low to moderate quality evidence from diagnostic test accuracy studies]
If it is not possible to tell whether a person has delirium, dementia, or delirium superimposed on dementia, treat for delirium first. [Based on the experience and opinion of the GC]
Care coordination
Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care (see box 3). [Based on moderate to high quality evidence from randomised controlled trials, moderate confidence evidence from qualitative studies, and partially applicable health economic evidence]
Care coordination: roles and responsibilities of care coordinator
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, to 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)
The guideline also includes recommendations on transferring information between services and care settings and on making services accessible.
Interventions to promote cognition, independence, and wellbeing
Interventions to offer
Offer a range of activities to promote wellbeing that are tailored to the person’s preferences to all people living with dementia. [Based on low to high quality evidence from randomised controlled trials]
Offer group cognitive stimulation therapy (see box 4 for details) to people living with mild to moderate dementia. [Based on moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Details of cognitive interventions
Cognitive stimulation therapy—Engaging in a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning
Cognitive rehabilitation therapy—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 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
Interventions to consider
Consider group reminiscence therapy for people living with mild to moderate dementia. [Based on moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Consider cognitive rehabilitation (see box 4 for details) or occupational therapy to support functional ability in people living with mild to moderate dementia. [Based on low to moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Interventions not to be offered
Do not offer acupuncture to treat dementia. [Based on very low to low quality evidence from randomised controlled trials]
Do not offer ginseng, vitamin E supplements, or herbal formulations to treat dementia. [Based on low to moderate quality evidence from randomised controlled trials]
Do not offer cognitive training (see box 4 for details) to treat mild to moderate Alzheimer’s disease. [Based on low to moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Pharmacological management of Alzheimer’s disease
Only initiate pharmacological treatment for Alzheimer’s disease on the advice of a clinician with specialist expertise in diagnosing and treating Alzheimer’s disease. In a change to previous guidance, the new version states that, once a decision has been made to start a cholinesterase inhibitor or memantine, the first prescription may be made in primary care.
Offer a cholinesterase inhibitor for people with mild Alzheimer’s disease. [Based on a NICE technology appraisal5]
Offer a cholinesterase inhibitor and consider adding memantine for people with moderate Alzheimer’s disease. [Based on moderate to high quality evidence from randomised controlled trials and directly applicable health economic evidence]
Offer a cholinesterase inhibitor and memantine for people with severe Alzheimer’s disease. [Based on moderate to high quality evidence from randomised controlled trials and directly applicable health economic evidence]
Do not stop cholinesterase inhibitors in people with Alzheimer’s disease because of disease severity alone. [Based on low to moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
For people with an established diagnosis of Alzheimer’s disease who are already taking a cholinesterase inhibitor, primary care prescribers may start treatment with memantine without taking advice from a specialist clinician.
Pharmacological management of non-Alzheimer’s dementia
Pharmacological management of Parkinson’s disease dementia is covered by the NICE guideline on Parkinson’s disease.6
Dementia with Lewy bodies
Offer donepezil or rivastigmine to people with mild to moderate dementia with Lewy bodies. [Based on moderate to high quality evidence from randomised controlled trials and partially applicable health economic evidence]
Only consider galantamine for people with mild to moderate dementia with Lewy bodies if donepezil and rivastigmine are not tolerated. [Based on the experience and opinion of the GC]
Consider donepezil or rivastigmine for people with severe dementia with Lewy bodies. [Based on the experience and opinion of the GC]
Consider memantine for people with dementia with Lewy bodies if cholinesterase inhibitors are not tolerated or are contraindicated. [Based on low to moderate quality evidence from randomised controlled trials]
Other dementia subtypes
Consider cholinesterase inhibitors or memantine for people with vascular dementia only if they have suspected comorbid Alzheimer’s disease, Parkinson’s disease dementia, or dementia with Lewy bodies. [Based on moderate to high quality evidence from randomised controlled trials]
Do not offer cholinesterase inhibitors or memantine to people with frontotemporal dementia. [Based on low to moderate quality evidence from randomised controlled trials]
Medicines that may cause cognitive impairment
Several commonly prescribed medicines are associated with increased anticholinergic burden and therefore cognitive impairment. These medicines can worsen the cognitive symptoms of dementia, or result in false positive diagnoses. Validated tools exist to assess anticholinergic burden, such as the Anticholinergic Cognitive Burden Scale.
Consider minimising the use of medicines associated with increased anticholinergic burden and if possible look for alternatives. [Based on the experience and opinion of the GC]
Managing non-cognitive symptoms (such as agitation, aggression, distress, psychosis, depression, anxiety, and sleep problems)
Before pharmacological or non-pharmacological treatment for distress is started in people living with dementia, conduct a structured assessment to explore possible reasons for their distress and to check for and address environmental causes (such as pain, delirium, or inappropriate care).
As initial and ongoing management, offer psychosocial and environmental interventions to reduce distress in people living with dementia. [Based on moderate quality evidence from randomised controlled trials]
Offer antipsychotics for people living with dementia only if they are:
At risk of harming themselves or others or
Experiencing agitation, hallucinations, or delusions that are causing them severe distress.
[Based on moderate to high quality evidence from randomised controlled trials]
Before starting antipsychotics, discuss the benefits and harms with the person and their family members or carers (as appropriate). [Based on moderate to high quality evidence from randomised controlled trials]
When using antipsychotics:
Use the lowest effective dose and for the shortest possible time
Reassess the person at least every six weeks to check whether they still need medication.
[Based on moderate to high quality evidence from randomised controlled trials]
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).
[Based on moderate to high quality evidence from randomised controlled trials]
For people living with dementia who experience agitation or aggression, offer personalised activities to promote engagement, pleasure, and interest. [Based on low to moderate quality evidence from randomised controlled trials]
Do not offer valproate to manage agitation or aggression in people living with dementia unless it is indicated for another condition. [Based on low to high quality evidence from randomised controlled trials]
Depression and anxiety
For people living with mild to moderate dementia who have mild to moderate depression or anxiety, consider psychological treatments. [Based on low to moderate quality evidence from randomised controlled trials]
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. [Based on low to moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Sleep problems
Do not offer melatonin to manage insomnia in people living with Alzheimer’s disease. [Based on low to moderate quality evidence from randomised controlled trials]
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. [Based on moderate to high quality evidence from randomised controlled trials]
Assessing and managing other long term conditions in people living with dementia
People living with dementia should have equivalent access to diagnosis, treatment and care services for comorbidities to people who do not have dementia
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.
[Based on low to moderate quality evidence from cohort studies and the experience and opinion of the GC]
For people living with dementia who are in pain, consider using a stepwise treatment protocol that balances pain management and potential adverse events. [Based on low to moderate quality evidence from randomised controlled trials]
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.
[Based on the experience and opinion of the GC]
Sensory impairment
Encourage people living with dementia to have eye tests every two years. Consider referring people who cannot organise appointments themselves. [Based on the experience and opinion of the GC]
The guideline also contains recommendations on identifying hearing loss and managing falls, diabetes, and incontinence.
Supporting carers
Offer carers of people living with dementia a psychoeducation and skills training intervention (see box 5 for details). [Based on moderate quality evidence from randomised controlled trials and directly applicable health economic evidence]
Content of carer training interventions
The psychoeducation and skills training intervention offered to carers 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 evidence suggests these interventions are likely to be most effective when provided as group sessions, but what is offered should be tailored to the needs and preferences of the carer and to what they want it to achieve.
Advise carers about their right to the following and how to get them:
A formal assessment of their own needs (known as a carer's assessment), including their physical and mental health
An assessment of their need for short breaks and other respite care.
[Based on the experience and opinion of the GC]
Advance care planning
Offer early and ongoing opportunities for people living with dementia and people involved in their care 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.
At each care review, offer people the chance to review and change any advance statements and decisions they have made. [Based on moderate to high confidence evidence from qualitative studies]
Other areas
The guideline also contains recommendations on risks during hospital admission, palliative care, transitions between care settings, and staff training.
Guidelines into practice
How could you better encourage and enable people living with dementia to give their own views and opinions about their care?
Project: How many people living with dementia in your care are prescribed an anticholinergic drug which might worsen their cognitive function?
How do you address care of comorbidities in those with dementia? Are there ways that you could improve this?
Further information on the guidance
Methods
The Guideline Committee (GC) at the time the guideline was published contained 14 members from a range of health and social care backgrounds, as well as two patient and carer representatives and three additional co-opted members. A social care subgroup, formed to look at evidence on questions primarily related to social care, contained two members of the main GC plus four social care members and one carer representative.
The guideline was developed using standard NICE guideline methodology (2014) (www.nice.org.uk/process/pmg20/chapter/introduction-and-overview). The GC developed clinical questions, collected and appraised clinical evidence, and evaluated the cost effectiveness of proposed interventions and management strategies through literature review and economic considerations where possible. Quality ratings of the evidence were based on GRADE methodology (www.gradeworkinggroup.org). These relate to the quality of the available evidence for assessed outcomes rather than the quality of the clinical study. Where standard methods could not be applied, a customised quality assessment was done. Stakeholder consultation was undertaken at both the scoping and development stages.
Future research
The following were identified as important questions for future research:
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?
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?
Does actively reducing anticholinergic burden in people living with dementia improve cognitive outcomes compared with usual care?
What are the most clinically and cost effective non-pharmacological interventions for helping the long term recovery of people with delirium superimposed on dementia?
What are the most effective methods of care planning for people who do not have regular contact with an informal carer?
How patients were involved in the creation of this article
No patients were involved in the creation of this summary. However, committee members involved in this guideline included lay members who contributed to the formulation of the recommendations summarised here. The views of multiple patient organisations were sought for both the original scope of the guideline and its draft recommendations.
Acknowledgments
The members of the Guideline Committee were Damien Longson (chair), Louise Allan, Joanne Brady (co-opted member), Linda Clare, Richard Clibbens, Carol Duff, Paul Dunnery (until November 2016), Sandra Evans, Eayne Goddard (from March 2017), Kim Grosvenor (from March 2017), Karen Harrison Dening, Jeremy Isaacs (co-opted member), Hannah Luff, Kate Mitchell (co-opted member, until November 2016), Kevin Minier, John O’Brien, Ruth O’Dea, Catherine Pascoe (co-opted member, until October 2016), Sarah Partington (co-opted member), Chris Roberts, Louise Robinson, Tracy Wright.
The members of the guideline social care subgroup were Tracy Wright (subgroup chair), Belinda Black, Sally English, Maggie Murdoch, Pauline Shaw, Ruth O’Dea, Ben Williams.
The members of the NICE Centre for Guidelines team were Harry Allen (until January 2017), Sohaib Ashraf (from November 2016), Elizabeth Barrett, Jean Bennie (from June 2017), Daniel Davies (from April 2016 to March 2017), Sue Ellerby (from December 2015 to March 2017), Jamie Elvidge (from July to November 2016), Victoria Gillis-Elliott, James Hall, Marie Harrisingh (from November 2016), Holly Irwin (until January 2016), Yolanda Martinez (from February to May 2017), Toby Mercer (from November 2016), Michael Mellors (from November 2016 to March 2017), Kate McAllister (from September to November 2016), Hugh McGuire (until December 2015), Sarah Mills (from February to April 2016), Vonda Murray (from February 2016), Angela Parkin, Joshua Pink (from February 2016), Gabriel Rogers, Susan Spiers, Jeffrey Tabiri-Essuman (from April to May 2017), Steven Ward (until April 2016), Verena Wolfram (from July 2017).
Footnotes
Contributors: All authors contributed to the conception and drafting of this article and to revising it critically. They have all approved this version. JP is guarantor.
Funding: During the development of this work, JP was an employee of NICE, which is commissioned and funded by the Department of Health to develop clinical guidelines. No authors received specific funding to write this summary.
Competing interests: We declare the following conflicts of interest, based on NICE's policy on conflicts of interests (www.nice.org.uk/Media/Default/About/Who-we-are/Policies-and-procedures/policy-on-declaring-managing-interests-advisory-committees.pdf): JO has undertaken paid consultancy work for Eli Lilly relating to amyloid imaging technology used in dementia and is a co-investigator on a trial of amyloid imaging partly funded by Eli Lilly.