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Mental health Neurological

Dementia

Last revised in March 2026.

Dementia is a clinical syndrome of deterioration in mental function which interferes with activities of daily living (ADLs).

Dementia: Summary

  • Dementia is a progressive, irreversible clinical syndrome with a range of cognitive and behavioural symptoms including memory loss, problems with reasoning and communication, change in personality, and reduction in the person's ability to carry out daily activities. 
    • Decline in cognition is extensive, often affecting multiple domains of intellectual functioning. 
  • Risk factors for dementia include ageing, mild cognitive impairment, genetics, Parkinson's disease, cerebrovascular disease, and cardiovascular disease.
    • Modifiable risk factors include smoking, diabetes mellitus, lack of physical activity, and obesity. 
  • Mild cognitive impairment is cognitive impairment that does not fulfil the diagnostic criteria for dementia.
  • The most common subtypes of dementia include:
    • Alzheimer's disease (50–75%), often co-exists with other forms of dementia such as vascular dementia.
    • Vascular dementia (up to 20%).
    • Dementia with Lewy bodies (10–15%).
    • Frontotemporal dementia (2%).
  • Dementia should be suspected if any of the following are reported by the person or their family/carer:
    • Cognitive impairment leading to memory problems (such as difficulty learning new information), dysphasia and dyspraxia, disorientation to time and place, and impairment of executive function (such as difficulty with planning and problem solving).
    • Behavioural and psychological symptoms of dementia (BPSD), such as delusions, hallucinations, agitation, emotional lability, depression, anxiety, apathy, social or sexual disinhibition, motor disturbance (for example wandering or repetitive activity), and sleep disruption.
    • Difficulties with activities of daily living (ADLs), such as eating, personal hygiene, grooming, and dressing.
  • Cognitive assessment (with a validated tool) should be performed in all people with suspected dementia.
  • Routine investigations should be requested in order to exclude other conditions, such as depression, hypothyroidism, and delirium.
  • Management of people with suspected dementia should involve:
    • Arranging admission if the person is severely disturbed to ensure their health and safety and the safety of others. 
    • Referring people with learning disabilities to a psychiatrist with the necessary expertise. 
    • Referring all other people to a memory assessment service for specialist assessment and management.
  • People with mild cognitive impairment should be followed up regularly to monitor possible progression of cognitive deficit.
    • If symptoms deteriorate, they should be referred for specialist assessment and management.
  • Follow up in primary care should include:
    • Providing 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.
    • Offering opportunities for people living with dementia and people involved in their care to discuss planning ahead including lasting power of attorney, advance statement, and decisions, as well as their preferences for a place of care and death.  
    • Ensure the person with dementia has a care manager and a regularly reviewed care plan.
    • Assessing for any emerging dementia-related needs and ask the person and their carers if they need any more support.
    • Monitoring physical and mental health.
    • Monitoring response to, and adverse effects from, dementia treatments and the progression of dementia.
    • Reviewing medication.
    • Referring to or seeking advice from a specialist when appropriate.

Have I got the right topic?

From age 30 years onwards.

This CKS topic is largely based on the National Institute for Health and Care Excellence (NICE) guidelines Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a] and Mental health problems in people with learning disabilities: prevention, assessment and management [NICE, 2016], the NICE technology appraisal guidance Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease [NICE, 2018], the NHS England documents Dementia: good personalised care and support planning. Information for primary carer providers and commissioners [NHS England, 2020] and Dementia diagnosis and management: a brief pragmatic resource for general practitioners [NHS England, 2015], the Canadian Guidelines and Protocols Advisory Committee (GPAC) guideline Cognitive impairment: recognition, diagnosis and management in primary care [GPAC, 2016], the British Medical Journal (BMJ) Best Practice guidelines Alzheimer's dementia [BMJ, 2019] and Assessment of dementia [BMJ, 2018a], and expert opinion in narrative reviews What primary care needs to know: a primer for general practice [Barrett, 2014], Best practice in the management of behavioural and psychological symptoms of dementia [Tible, 2017] and Dementia: timely diagnosis and early intervention [Robinson, 2015].

This CKS topic covers the assessment and management of people with dementia in primary care.

This CKS topic does not cover in detail secondary care investigations to diagnose dementia or the initiation of dementia drugs by secondary care. There are separate CKS topics on Delirium and Depression.

The target audience for this CKS topic is healthcare professionals working within the NHS in the UK, and providing first contact or primary healthcare.

How up-to-date is this topic?

Changes

March 2026 — minor update. Clarification of clinical differences between DLB and Parkinsons dementia.

 

Previous changes

May 2025 — minor update. A small typographical mistake was corrected. QOF indicators updated in line with the NHS England Quality and Outcomes Framework guidance for 2025/26.

December 2024 — minor update. Extrapyramidal disorder (uncommon), first-degree atrioventricular block (uncommon), and complete atrioventricular block (rare) as adverse drug reactions for galantamine in line with the manufacturer's updated SPC.

October 2024 — minor update. Prevalence figures updated to rectify a typographical error. 

April 2024 — minor update. Removed the wording associated with shared care protocols for pharmacological management of dementia. 

January 2024 — minor update. Cautions for rivastigmine updated in line with manufacturer's SPC.

December 2022 — minor update. Removed duplication of smoking as a risk factor in the summary and revised the wording in the assessment section relating to onset of vascular dementia. 

May 2021 — reviewed.  A literature search was conducted in March 2021 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. Some minor structural changes have been made to this topic, but no major changes to clinical recommendations.

October 2020 — minor update. Information that the death of anyone subject to Deprivation of Liberty Safeguards (DoLS) must be reported to the coroner has been removed as this is no longer a requirement. 

August 2020 — minor update. NICE Quality standards updated with QS194.

June 2020 — minor update. Information on the cognitive assessment tools recommended by NICE have been updated in line with the NICE guideline Dementia: assessment, management and support for people living with dementia and their carers.

July 2019 — minor update. NICE Quality standards updated with QS184 [NICE, 2019a]. 

May 2017 — minor update. A typographical error was corrected.

December 2016 — minor update. A typographical error was corrected.

August 2016 — reviewed. A literature search was conducted in June 2016 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last review of this topic. No major changes to recommendations have been made, but the topic has undergone minor restructuring.

June 2015 — minor update. Based on an update to the manufacturer's Summary of Product Characteristics (SPC), decreased appetite has been included as a common adverse effect of rivastigmine.

April 2015 — minor update. Update to the text to reflect new advice from the Department of Transport on drugs and impaired driving.

August 2014 — minor update to include Prometax® rivastigmine patches.

July 2014 — two minor updates:

  • Minor update to the text to reflect the fact that donepezil is now available as an oral liquid.
  • The text has been updated to replace the Liverpool Care Pathway with new standards of care that have been issued by the Leadership Alliance for the Care of Dying People.

June 2014  — minor update. Update to the text to include the Alzheimer's Research UK as a source of information for people with dementia.

February 2014  — minor update. Neuroleptic malignant syndrome has been added as a rare adverse effect of donepezil, following an update of the manufacturer's SPC.

July 2013  — minor update. Links to the Driver and Vehicle Licensing Agency (DVLA) website have been updated.

June 2013  — minor update. The 2013 Quality and Outcomes Framework (QOF) options for local implementation have been added to this topic.

May 2013 — minor update. The doses for both lorazepam and haloperidol have been further revised to read: 

  • Oral lorazepam — prescribe a starting dose of 0.5 mg daily. If necessary, the dose can be gradually increased to a maximum of 1 mg daily (2 mg daily in exceptional circumstances) in divided doses. 
  • Oral haloperidol — prescribe a starting dose of 0.5 mg daily. If necessary, the dose can be gradually increased to a maximum of 2 mg daily (4 mg daily in exceptional circumstances) in divided doses. The basis for recommendation, prescribing information, and prescriptions have also been amended.

April 2013 — minor update. The recommended maximum daily dose of lorazepam has been reduced from 4mg to 2 mg to be in line with the British National Formulary (BNF) and the manufacturers, who recommend half the adult dose in the elderly. We have also reworded the recommendation to make it clearer that treatment should be started with a low dose and gradually titrated upwards.

February 2013 — minor update. The 2013 QIPP options for local implementation have been added to this topic.

January 2013 — minor update. Removed the black triangle status from risperidone as this is no longer a black triangle drug.

October 2012— minor update. The 2012 QIPP options for local implementation have been added to this topic.

April 2012 — minor update. The 2012/2013 QOF indicators have been added to this topic. 

January 2012 — minor update. Prescribing information has been added for memantine, and the Basis for recommendation section has been updated to reflect the most recent considerations of the National Institute for Health and Care Excellence (NICE) regarding memantine. 

November 2011 — minor update. A brief summary of the key recommendations from the World Alzheimer Report 2011 that emphasizes the benefits of early diagnosis and intervention, has been included in the background information section. 

June 2011— minor update. The 2011/2012 QOF indicators and the 2010/2011 QIPP options for local implementation have been added to this topic. Text added to reflect new recommendations from NICE regarding acetylcholinesterase inhibitors and memantine: Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. 

August 2010 — minor update. The NICE quality standard relating to dementia have been added to the section on Goals and outcome measures. 

November 2009 to March 2010 — this is a new CKS topic. The evidence-base has been reviewed in detail, and recommendations are clearly justified and transparently linked to the supporting evidence.

Update

New evidence

Evidence-based guidelines

HTAs (Health Technology Assessments)

No new HTAs since 1 May 2021.

Economic appraisals

No new economic appraisals relevant to England since 1 May 2021.

Systematic reviews and meta-analyses

  • Truong, C., Recto, C., Lafont, C., et al. (2022) Effect of Cholinesterase Inhibitors on Mortality in Patients With Dementia: A Systematic Review of Randomized and Nonrandomized Trials. Neurology. https://n.neurology.org/ [Abstract]
  • )Kudlicka, A., Martyr, A., Bahar-Fuchs, A., et al. (2023) Cognitive rehabilitation for people with mild to moderate dementia. Cochrane Library. https://www.cochranelibrary.com [Free Full-text

Primary evidence

  • Watt, J., Thompson, W., Marple, R., et al (2022) Managing neuropsychiatric symptoms in patients with dementia. British Medical Journal. www.bmj.com [Abstract]
  • Bogaerts JMK, Gussekloo J, de Jong-Schmit BEM, et al. (2024) Effects of the discontinuation of antihypertensive treatment on neuropsychiatric symptoms and quality of life in nursing home residents with dementia (DANTON): a multicentre, open-label, blinded-outcome, randomised controlled trial. Age Ageing. https://academic.oup.com/ageing [Free Full-text]
  • Voinescu, A., Papaioannou, T., Petrini, K., & Fraser, D. S. (2024). Exergaming for dementia and mild cognitive impairment. Cochrane Database of Systematic Reviews, (9). [Abstract]
  • Zhu, Y., Lan, Y., Lv, J., et al. (2024) Association between dietary fat intake and the risk of Alzheimer's disease: Mendelian randomisation study. British Journal of Psychiatry https://www.cambridge.org/ [Free Full-text]
  • Singh, S., Li, X., Cocoros, N. M., et al. (2024). High-risk medications in persons living with dementia: a randomized clinical trial. JAMA Internal Medicine. https://jamanetwork.com [Abstract]
  • Ayton, S., Barton, D., Brew, B., et al. (2024) Deferiprone in Alzheimer Disease: A Randomized Clinical Trial. JAMA Neurology. https://jamanetwork.com [Abstract]

New policies

No new national policies have been published since 1 May 2021.

New safety alerts

No new safety alerts since 1 May 2021.

Changes in product availability

  • New product Voleze (rivastigmine) 4.6 mg/24h, 9.5 mg/24h transdermal patches. Patch is licensed for the symptomatic treatment of mild to moderately severe Alzheimer's dementia in adults. See more here.
  • New product Alzakt (rivastigmine) Transdermal Patches are indicated for symptomatic treatment of mild to moderately severe Alzheimer's dementia. See more here. 

Goals and outcome measures

Goals

To support primary healthcare professionals to:

  • Communicate the possibility of a diagnosis of dementia clearly, frankly, and sensitively.
  • Ensure a timely diagnosis of dementia.
  • Ensure that primary healthcare is coordinated with secondary healthcare and social care in the management of people with dementia.
  • Ensure symptoms, behavioural problems, and physical disabilities are addressed in partnership with the person and their family/carers.
  • Ensure the appropriate use and monitoring of drug treatments.
  • Avoid the use of antipsychotic drugs for the control of behaviour if possible.
  • Provide effective psychosocial support for the person's family or carers from the time dementia is first suspected.
  • Ensure effective end of life care is provided.

Outcome measures

No outcome measures were found during the review of this topic.

Audit criteria

No audit criteria were found during the review of this topic.

QOF indicators

Table 1. Indicators related to dementia in the Quality and Outcomes Framework (QOF) guidance for 2025–2026.

IndicatorPointsAchievement thresholds
DEM004 The percentage of patients diagnosed with dementia whose care plan has been reviewed in the preceding 12 months1435–70%
Data from: [NHS England, 2025]  

QIPP - Options for local implementation

  • Review and, if appropriate, optimise prescribing of antipsychotics in people living with dementia, in accordance with National Institute for Health and Care Excellence (NICE) guideline and Quality Standard on dementia.
  • Ensure that carers of people with dementia are offered education and skills training.

[NICE, 2019b]

NICE quality standards

  • Quality standards on Dementia
    • 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. 
    • People with suspected dementia are referred to a specialist dementia diagnostic service if reversible causes of cognitive decline have been investigated. 
    • People with dementia are given the opportunity to discuss advance care planning at diagnosis and at each health and social care review.
    • People with dementia have a single named practitioner to coordinate their care. 
    • People with dementia are supported to choose from a range of activities to promote wellbeing that are tailored to their preferences. 
    • People with dementia have a structured assessment before starting non-pharmacological or pharmacological treatment for distress. 
    • Carers of people with dementia are offered education and skills training.

[NICE, 2019a]

  • Quality Standards on Decision making and mental capacity
    • People aged 16 and over who may lack capacity to make decisions are supported with decision making in a way that reflects their individual circumstances and meets their particular needs.
    • People aged 16 and over at risk of losing capacity to make decisions, and those with fluctuating capacity, are given the opportunity to discuss advance care planning at each health and social care review.
    • People aged 16 and over who are assessed as lacking capacity to make a particular decision at the time that decision needs to be made, have a clear record of the reasons why they lack capacity and the practicable steps taken to support them.
    • People aged 16 and over who lack capacity to make a particular decision at the time that decision needs to be made have their wishes, feelings, values and beliefs accounted for in best interests decisions.

[NICE, 2020]

  • Quality standards on Suspected neurological conditions: recognition and referral
    • Adults diagnosed with a functional neurological disorder are supported to manage symptoms that are a part of the disorder in non-specialist care. 
    • Adults with suspected neurological conditions using NHS services experience care and treatment that is tailored to their needs and preferences.

[NICE, 2021b]

Background information

What is it?

  • Dementia is a progressive, irreversible clinical syndrome with a range of cognitive and behavioural symptoms including memory loss, problems with reasoning and communication, change in personality, and reduction in the person's ability to carry out daily activities. 
    • Decline in cognition is extensive, often affecting multiple domains of intellectual functioning. 
    • The cognitive impairment is not entirely attributable to normal ageing. 
    • For a diagnosis of dementia to be made, the person must have impairment: 
      • In at least two of the following cognitive domains: memory, language, behaviour, visuospatial or executive function.
      • Which causes a significant functional decline in usual activities or work.
      • Which cannot be explained by delirium or other major psychiatric disorder. 
  • Early-onset (or young-onset) dementia is generally defined as dementia that develops before the age of 65 years. 
  • Mild cognitive impairment (MCI) is cognitive impairment that does not fulfil the diagnostic criteria for dementia, for example, because only one cognitive domain is affected, or deficits do not significantly affect daily activities.

[Barrett, 2014; Robinson, 2015; GPAC, 2016; BMJ, 2018a; NICE, 2021a; WHO, 2020a; WHO, 2020b] 

What causes it?

Most causes of dementia are due to neurodegenerative diseases: 

  • Alzheimer’s disease (50–75% of cases)
    • The pathological features of Alzheimer’s disease (AD) include atrophy of the cerebral cortex and formation of amyloid plaques and neurofibrillary tangles. 
    • Neuroinflammation is increasingly recognized as a feature of Alzheimer pathology and there is a reduction in the range of neurotransmitters with a marked cholinergic deficit. 
    • AD often co-exists with other forms of dementia such as vascular dementia. 
    • Young-onset AD has a genetic cause in some people. 
  • Vascular dementia (up to 20% of cases)
    • Vascular dementia is the second most common type of dementia — it occurs as a result of reduced blood supply to the brain.
    • It can be caused by a wide variety of cerebrovascular disorders, including large or multiple small infarcts, cerebral amyloid angiopathy, and cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL).
    • Some people with vascular dementia have transient neurological symptoms, a history of gait abnormalities, and incontinence at the time of initial assessment. 
    • Depression and delusions are common and "emotional incontinence" such as extensive mood lability can be found in advanced stages. 
    • Young-onset vascular dementia has a genetic cause in some people.
  • Dementia with Lewy bodies (DLB) (10–15% of cases)
    • This is a common cause of dementia in older people.
    • Similar presentation to AD, but features also include marked spontaneous fluctuations in cognitive abilities, visual hallucinations, and parkinsonism. 
    • The main pathological features of DLB are cortical and subcortical Lewy bodies (abnormal deposits of protein inside nerve cells). 
    • There is increasing recognition of an overlap between DLB and the dementia associated with Parkinson’s disease — most clinicians now consider the two to be on the same spectrum, termed Lewy body disease. 
      • DLB is diagnosed when cognitive symptoms predate the emergence of motor parkinsonism, or they occur simultaneously. 
      • Parkinson's disease dementia is diagnosed when motor parkinsonism is established prior to the development of cognitive problems.
  • Frontotemporal dementia (FTD) (2% of cases)
    • FTD is increasingly recognized as a common cause of dementia, particularly in younger people. 
    • A significant proportion of people, particularly with behavioural presentations, have a family history.
    • It is characterized by progressive degeneration of the frontal and/or temporal lobes. 
    • Onset is typically in the sixth decade of life but may be as early as the third or as late as the ninth decade. 

Other causes of dementia include:

  • Parkinson’s disease (PD) dementia — the risk factors for developing dementia in PD are increasing age, duration of disease, and severity of motor symptoms.
  • Progressive supranuclear palsy. 
  • Huntington’s disease. 
  • Prion disease (such as Creutzfeldt-Jakob disease [CJD]). 
  • Normal pressure hydrocephalus. 
  • Chronic subdural haematoma. 
  • Benign tumours. 
  • Metabolic and endocrine disorders (such as chronic hypothyroidism, Addison's disease, and hypopituitarism). 
  • Vitamin deficiencies (such as B12 and thiamine deficiency).
  • Infections (such as HIV infection and syphilis).
  • Inflammatory and autoimmune disorders. 
  • Transient epileptic amnesia. 

[Sorbi, 2012; NICE, 2015; BMJ, 2018a; BMJ, 2018b; NICE, 2021a; BMJ, 2019; Schott, 2020]

What are the risk factors?

  • Risk factors for dementia include:
    • Age — older age is the strongest risk factor for dementia [BMJ, 2019]. 
    • Mild cognitive impairment (MCI) — approximately one-third of people with MCI will go on to develop dementia within 3 years [Barrett, 2014]. 
      • The typical rate of progression is 10–15% a year, which exceeds the population incidence figures for Alzheimer’s disease of 1–2% a year [BMJ, 2018a].
    • Learning disability
      • Estimates vary, but as many as 20% of people with learning disabilities aged over 65 years meet the diagnostic criteria for dementia [RCGP, 2013]. 
      • People with Down’s syndrome are particularly affected — the prevalence rate may be up to 75% in people with Down's syndrome aged 60 years or older [RCGP, 2013].
    • Genetics
      • Of families with young-onset dementia in three or more generations, 86% have a mutation in the amyloid precursor protein gene (APP) or the presenilin genes (PSEN1 or PSEN2) [Loy, 2014].
      • Familial Alzheimer's disease accounts for less than 5% of all Alzheimer's disease cases, however the lifetime risk of Alzheimer's disease in first-degree relatives without a defined underlying genetic risk factor for Alzheimer's disease is 25–50%. [BMJ, 2019], 
      • Apolipoprotein E (ApoE), a component of several classes of plasma and cerebrospinal fluid (CSF) lipoproteins is the single most common genetic determinant of susceptibility to late-onset Alzheimer's disease [Schott, 2020]. 
    • Cardiovascular disease  
      • Dementia risk increases incrementally if multiple cardiovascular risk factors are present in middle age or several years before the onset of dementia [Winblad, 2016]. 
      • Successful prevention strategies for cardiovascular disease and stroke are likely to reduce the incidence of vascular and mixed dementias [NICE, 2015].
    • Cerebrovascular disease 
      • This is a strong risk factor for vascular dementia [BMJ, 2019]. 
      • A systematic review of 16 studies found that the risk of developing dementia is approximately doubled in people who have had a stroke [Savva, 2010].
    • Parkinson's disease (PD)
      • The incidence of dementia is around 2–6 times that of age-matched controls, with a prevalence of over 75% 10 years after a diagnosis of PD [Schott, 2020].
      • A UK-based cohort study (n = 86 cases and 102 controls) found that the relative risk of people with PD developing dementia was about 5 times that of controls without PD (95% CI 2.1 to 12.5) [Hobson, 2004].
  • Modifiable risk factors — about one-third of Alzheimer’s disease cases worldwide may be attributable to modifiable risk factors [Norton, 2014]. Twelve risk factors that may prevent or delay up to 40% of dementias have been identified and include [Livingston, 2020]: 
    • Lower educational attainment
      • Higher levels of education, more mentally demanding jobs, and cognitive stimulation (such as learning a new language) are associated with a lower risk of developing dementia [PHE, 2016a].
      • A systematic review of 22 studies (n = 29,000) found a 46% lower risk of dementia in people with high levels of mental activity compared with those with low mental activity [Valenzuela, 2006].
    • Hypertension — persistent midlife hypertension is associated with an increased risk of late-life dementia.
    • Hearing impairment — hearing loss might result in cognitive decline through reduced cognitive stimulation.
    • Smoking — this is associated with a 50–80% increased risk of dementia [Winblad, 2016].
      • Stopping smoking, even when older, reduces the risk.
    • Obesity — this is associated with late-life dementia.
    • Depression 
      • Depression increases the risk of developing Alzheimer's disease. However it is unclear whether depression represents a true risk factor or a prodrome of Alzheimer's disease [BMJ, 2019].
      • A meta-analysis found that late-life depression was associated with a two-fold increased risk of Alzheimer's disease [BMJ, 2019]. 
      • During 17 years of follow up of the Framingham Heart Study participants (n = 949) the increased risk of developing dementia in people with depression was found to be more than 50% (95% CI 1.04 to 2.84) [Saczynski, 2010].
    • Physical activity — an analysis of population-based data estimated that in the UK, the largest influence on dementia by modifiable risk factors is physical activity. Even a low-intensity activity, such as walking, may reduce dementia risk by about 40% [Norton, 2014; PHE, 2016a; Winblad, 2016].
    • Diabetes in middle or later life increases the risk of vascular dementia and Alzheimer’s dementia by about 50% [Winblad, 2016].
      • The risk of dementia increases with the duration and severity of diabetes [Livingston, 2020]. 
    • Low social engagement and support
      • Being socially active can help to reduce dementia risk by reducing stress, depression, and loneliness [PHE, 2016a].
      • A cohort study (the Amsterdam Study of the Elderly, n = 2173) found that older people with feelings of loneliness were more likely to develop dementia (OR 1.64, 95% CI 1.05 to 2.56) than people who did not have feelings of loneliness [Holwerda, 2012].
    • Alcohol consumption
      • Moderate alcohol consumption (less than 14 units per week) may protect against dementia, while consumption of more than 14 units per week is associated with an increased risk of developing Alzheimer's disease [BMJ, 2019]. 
      • An Australian analysis of data on hospital admissions of people with dementia (n = 20,793) found that alcohol-related dementia accounted for about 20% of cases of dementia in people under the age of 65 years and less than 1% of cases of dementia in people aged 65 years and over [Draper, 2011]. 
    • Traumatic brain injury (TBI) — a meta-analysis of eight studies found that the relative risk (RR) was 1.84 (95% CI 1.54 to 2.20) for all-cause dementia from all severities of TBI.
    • Air pollution — a systematic review of studies, including 13 longitudinal studies with 1–15 years follow up, of air pollutants exposure and incident dementia, found exposure to fine ambient particulate matter, nitrogen dioxide, and carbon monoxide were all associated with increased dementia risk [Livingston, 2020].

How common is it?

  • The World Health Organization (WHO) has estimated that around 50 million people worldwide have dementia and there are 10 million new cases each year [WHO, 2020b].
  • It is estimated that in 2019, there were almost 885,000 older people (aged 65 years and over) living with dementia in the UK. By 2040 this number is expected to increase to almost 1.6 million as life expectancy is increasing and the main risk factor for dementia is ageing [Wittenberg, 2019]. 
    • The number of people aged 65–74 years in the UK will increase by 20% between 2019 and 2040, and the number of people aged 85 years and over will increase by 114%. 
  • The prevalence rate of dementia among older people in the UK is estimated to be 7.1% [Wittenberg, 2019].
  • The consensus estimates of population prevalence of late-onset dementia [Prince, 2014] are:
    • 0.9% for those aged 60–64 years.
    • 1.7% for those aged 65–69 years.
    • 3.0% for those aged 70–74 years.
    • 6.0% for those aged 75–79 years.
    • 11.1% for those aged 80–84 years.
    • 18.3% for those aged 85–89 years.
    • 29.9% for those aged 90–94 years.
    • 41.1% for those aged 95 years and over.
  • Of people living in the UK with dementia, it is estimated that [Alzheimer's Society, 2020]:
    • 488,000 have mild dementia.
    • 366,000 have moderate dementia. 
    • 128,000 have severe dementia. 
  • About 29–76% of people with dementia or probable dementia in primary care are estimated to be undiagnosed [Moyer, 2014].

What is the prognosis?

  • Dementia is a life-limiting condition — there is no treatment available to cure dementia or to alter its progressive course [WHO, 2020b]. 
  • There is progressive deterioration that can be considered as three stages, although the rate of deterioration varies between individuals [WHO, 2012]. 
    • Early stage (mild) — years 1–2. 
      • This stage may be overlooked. Onset is gradual, and features include becoming forgetful, communication difficulty, losing track of time, difficulty making decisions. 
    • Middle stage (moderate) — years 2–5.
      • Limitations become clearer and more restricting. Features include becoming very forgetful, increasing communication difficulty, help needed with personal care, unable to prepare food, behaviour changes.
    • Late stage (severe) — year 5 and later.
      • Near-total dependence and inactivity. Features include very serious memory disturbances, more obvious physical features, unaware of time or place, difficulty understanding what is happening around them, unable to recognize relatives and friends, unable to eat without assistance. 
  • Dementia and Alzheimer’s disease are the leading cause of death for women accounting for 13.4% of deaths and the second leading cause of death for men, accounting for 7% of deaths [PHE, 2016b]. 
    • Of all deaths registered in 2019 in England and Wales, 66,424 (12.5%) were due to dementia and Alzheimer’s disease [ONS, 2020]. 
  • There is considerable variation in the time from presentation to death — people diagnosed in their late 60s to early 70s have a median lifespan of 7–10 years, but this is reduced to 3 years for people diagnosed in their 90s [Schott, 2020]. 
    • The median survival time from when a person is first assessed as having ‘cognitive impairment or dementia at moderate need’ is 3 years and 6 months [PHE, 2016b]. 
    • A cohort study (n = 22,529) using data from 353 general practices in the UK (The Health Improvement Network) found that mortality rates in people with dementia in the first year after diagnosis are more than 3 times higher than that of people without dementia [Rait, 2010].
    • A longitudinal population-based study (the Kungsholmen project) found that in 371 incident cases of dementia [Rizzuto, 2012]:
      • The mean survival time after diagnosis was 4.1 years. Of this, the mean time spent in the moderate and severe stages was 14 months and 12 months, respectively.
      • Women survive longer in the severe stage of dementia than men (2.1 years for women aged 75–84 years compared to 0.5 years for men of the same age).
  • Dementia has been found to progress more rapidly following an episode of delirium [Fong, 2009; Young, 2011]. 

What are the complications of dementia?

Dementia can lead to many clinical and social complications for the person with dementia and their family and/or carers.

  • Disability, dependency, and morbidity — dementia is one of the major causes of disability and dependency among older people worldwide [WHO, 2020b]. 
    • Reduced ability to carry out activities of daily living (ADLs) such as shopping, maintaining the home, personal hygiene, and toileting [NICE, 2021a]. 
    • Complex care needs such as behaviour that challenges, restlessness and wandering, eating problems, and incontinence [WHO, 2012].
    • Mobility difficulties that can lead to falls and fractures [NICE, 2021a; BMJ, 2019]. 
    • Social isolation, loss of interest in activities and hobbies [WHO, 2012].
  • Behavioural and psychological symptoms of dementia (BPSD) [WHO, 2012; Barrett, 2014; Kales, 2015]
    • BPSD include agitation, depression, apathy, repetitive questioning, psychosis, aggression, sleep problems, and wandering.
    • More than 90% of people with dementia will experience BPSD difficulties during the course of their illness.
    • BPSD are associated with excess mortality, morbidity, hospital admissions, and placement in long-term care. 
  • Institutionalization [Robinson, 2010; Kales, 2015; BMJ, 2019]
    • Loss of ability to perform ADLs, BPSD, and increasing dependence requires increasing support for the person and carer and may lead to placement in long-term care. 
      • Many individuals are eventually admitted to nursing homes for daily care.
      • In England in 2012–14, 58% of deaths in people aged over 65 years where dementia was mentioned died in care homes [PHE, 2016b]. 
  • Carer morbidity [WHO, 2012; Kales, 2015] 
    • Caring for a person with dementia can impact negatively on carers resulting in stress, depression, reduced income, social isolation, and lower quality of life. 
  • Financial hardship [WHO, 2012; Alzheimer's Society, 2014; Alzheimer's Society, 2015] 
    • Financial stress can occur if the person with dementia loses their job as a result of their symptoms or if a carer has to reduce their working hours or stop working to look after them. This is particularly important for people with young-onset dementia. 
    • It is estimated that two-thirds of the cost of dementia is paid by people with dementia and their family/carers.

Diagnosis of dementia

When should I suspect dementia?

  • Dementia can be difficult to identify as it usually has an insidious onset and non-specific signs and symptoms, which vary from person to person. People with early dementia may deny symptoms or accommodate to cognitive change and functional ability. 
  • Suspect dementia if any of the following are reported by the person and/or their family/carer:
    • Cognitive impairment, including:
      • Memory loss — the person may defer to family when answering questions, have difficulty learning new information or remembering recent events or people's names, be vague with dates, and/or miss appointments.  
      • Problems with reasoning and communication.
      • Difficulty in making decisions.
      • Dysphasia. 
      • Difficulty in carrying out coordinated movements, such as dressing.
      • Disorientation and unawareness of the time and place. 
      • Impairment of executive function, such as difficulties with planning, judgement, loss of initiative, and problem-solving. 
    • Behavioural and psychological symptoms of dementia (BPSD). These tend to fluctuate, may last for 6 months or more and include: 
      • Psychosis — the person may have delusions (which may be persecutory) and/or hallucinations (visual and auditory). 
      • Agitation and emotional lability — the person may be easily upset, argumentative, shout, have mood swings, and/or exhibit physically and verbally challenging behaviour.
      • Depression and anxiety — the onset of depression in later life is a warning sign of dementia. 
      • Withdrawal or apathy.
      • Disinhibition — the person may display socially or sexually inappropriate behaviour. 
      • Motor disturbance — wandering, restlessness, pacing, and repetitive activity may be reported. 
      • Sleep cycle disturbance or insomnia. 
      • Tendency to repeat phrases or questions. 
    • Difficulties with activities of daily living (ADLs):
      • In the early stages of dementia this may lead to difficulty carrying out complex household tasks. 
      • In the later stages, basic ADLs such as bathing, toileting, eating, and walking become affected. 
  • Symptoms related to specific subtypes of dementia include:
    • For Alzheimer’s disease:
      • The presenting symptom is usually loss of recent memory first, and often difficulty with executive function and/or nominal dysphasia. 
      • There is also loss of episodic memory — this may include memory loss for recent events, repeated questioning, and difficulty learning new information. 
      • Cognitive deficits may include aphasia, apraxia, and agnosia.
    • For vascular dementia:
      • Stepwise increases in the severity of symptoms — subcortical ischaemic vascular dementia may present insidiously with gait and attention problems and changes in personality.
      • Focal neurological signs (such as hemiparesis or visual field defects) may be present. 
    • For dementia with Lewy bodies: 
      • Core clinical features are fluctuating cognition; recurrent visual hallucinations; REM sleep behaviour disorder and one or more symptoms of parkinsonism: disorder; bradykinesia, rest tremor, or rigidity.
      • Memory impairment may not be apparent in early stages. 
    • For frontotemporal dementia:
      • Personality change and behavioural disturbance (such as apathy or social/sexual disinhibition) may develop insidiously. 
      • Other cognitive functions (such as memory and perception) may be relatively preserved. 

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guideline Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a], the European Federation of Neurological Societies (EFNS-ENS) guidelines on the diagnosis and management of disorders associated with dementia [Sorbi, 2012], the Canadian Guidelines and Protocols Advisory Committee (GPAC) guideline Cognitive impairment: recognition, diagnosis and management in primary care [GPAC, 2016], the World Health Organization (WHO) and Alzheimer's Disease International document Dementia: a public health priority [WHO, 2012], the British Medical Journal (BMJ) Best Practice guidelines Alzheimer's dementia [BMJ, 2019] and Dementia with Lewy bodies [BMJ, 2018b], and expert opinion in narrative articles Practical guidelines for the recognition and diagnosis of dementia [Galvin, 2012], Assessment and management of behavioral and psychological symptoms of dementia [Kales, 2015], Dementia: timely diagnosis and early intervention [Robinson, 2015], and Defeating Alzheimer’s disease and other dementias: a priority for European science and society [Winblad, 2016].

How should I assess a person with suspected dementia?

  • Undertake an initial assessment and take a history from the person (and, if possible, from someone who knows the person well, such as a family member).
    • 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).
    • The person's current level of cognition and functional capabilities should be compared to their baseline level to detect whether there has been a significant decline.
  • Ask about:
    • The timescale of onset of symptoms and deterioration.
      • Insidious onset with a slow (months to years) progressive course is consistent with a degenerative process, while an abrupt change or stepwise decline may suggest a vascular cause.
      • An acute or subacute course may suggest infection, a metabolic disorder, an expanding brain lesion, the effects of medication, or hydrocephalus.
      • Rapid onset suggests an acute confusional state or delirium.
    • The impact symptoms have on activities of daily life (ADLs) — for example, eating, bathing, dressing, continence, managing personal finances, and taking prescribed medicines. 
      • Also ask about safety in the home and outside, social functioning and available support, and whether they currently drive. 
    • Cognitive, behavioural, and psychological symptoms of dementia (BPSD). 
      • Ask about factors that may trigger or exacerbate BPSD (for example, personal or environmental causes).
    • Comorbidities — such as stroke, Parkinson's disease, depression, or epilepsy. 
      • Management of comorbidities can improve functional ability in people with dementia.
    • Risk factors for dementia. 
    • Medication history (including prescribed medicines, over-the-counter medicines, and alternative medicines) — some commonly prescribed medicines are associated with an increased anticholinergic burden and therefore cognitive impairment. For example, benzodiazepines, anticholinergic drugs, and opioids.
      • Consider minimizing the use of medicines associated with increased anticholinergic burden, and if possible, look for alternatives. 
    • Family history of dementia.
    • Alcohol or drug use. 
    • Any concerns they may have. 
  • If dementia is still suspected after the initial assessment, conduct a physical examination, including a neurological examination, and look for:
    • Focal neurological signs.  
      • Coordination and gait abnormalities. 
      • Sensory findings — such as peripheral neuropathy. 
      • Motor symptoms  — hemiparesis, tremor, rigidity, bradykinesia. 
    • Visual or auditory problems. 
    • Cardiovascular signs, such as hypertension, arrhythmias, or peripheral vascular disease. 
    • Other possible causes of symptoms, such as physical or mental illness (for example, head trauma or delirium). 
  • Arrange appropriate blood tests to exclude reversible causes of cognitive decline, including:
    • Full blood count. 
    • Erythrocyte sedimentation rate (ESR). 
    • C-reactive protein (CRP). 
    • Urea and electrolytes. 
    • Calcium.
    • HbA1c. 
    • Liver function tests.
    • Thyroid function tests. 
    • Serum B12 and folate levels.
    • Other investigations that may be appropriate if clinically indicated include urine microscopy and culture, chest X-ray, electrocardiogram (ECG), syphilis serology, and HIV testing.
  • Assess cognition:
    • Use a validated cognitive assessment tool 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, or Test Your Memory (TYM). 
      • Do not rely solely on cognition scores in circumstances in which it would be inappropriate to do so. Take into account any learning disabilities or other disabilities (for example, sensory impairments), linguistic or other communication difficulties. 
      • If dementia is suspected in people with learning disabilities arrange specialist referral for assessment and treatment. 
    • Do not rule out dementia solely because the person has a normal score on a cognitive instrument. 
  • Consider alternative diagnoses, including treatable causes. 

Note: if the person lacks mental capacity to give consent or decide who should or should not be involved in their care, act in their best interests in accordance with the Mental Capacity Act (2005). For more information, see the British Medical Association (www.bma.org.uk) Consent toolkit and Mental Capacity toolkit.

Cognitive assessment tools

Many different cognitive assessment tools are available — those suggested by NICE include: 

  • 10-point Cognitive Screener (10-CS)
    • The 10-CS involves 3 temporal orientation questions (year, month, date), a 3-word recall, and a 4 point scaled animal naming task. 
    • One point is scored for each of the temporal questions and each word recalled, and the scores for the animal naming task range from 0 points for 0–5 animals, to 4 points for 15 or more animals.
    • A score of 8 or more is normal, 6–7 indicates possible cognitive impairment, and 0–5 indicates probable cognitive impairment. 
  • 6-item Cognitive Impairment Test (6-CIT)
    • The 6-CIT consists of 6 questions including temporal orientation, remembering an address, counting backwards from 20, and stating the months of the year in reverse.
    • An inverse score is used, and questions are weighted to produce a total out of 28. Scores of 0–7 are considered normal and 8 or more significant.
    • A computerized version of the 6-CIT with automated scoring is available on some general practice computer systems.
  • 6-item Screener 
    • The 6-item Screener consists of 3 temporal orientation questions (year, month, day of the week) and a 3-word recall.  
    • Each correct response scores one point for a total maximum of six points.
    • Two or more errors are considered high risk for cognitive impairment. 
  • Memory Impairment Screen (MIS)
    • The MIS involves showing the person 4 words at the start of the assessment. The person is then given a category and asked to identify which word fits into that category. This is completed for all 4 words and it is explained that they will be asked to remember the words in a few minutes. A distractor activity is performed for 2 or 3 minutes (for example, counting to 20 and back, counting back from 100 by 7, spelling the word 'world' backwards) and then the person is asked to recall the 4 words.
    • The maximum score is 8 (2 points for each word recalled without prompting and 1 point for each word that requires prompting). A score of 5–8 indicates no cognitive impairment, and a score of 4 or less indicates possible cognitive impairment.  
    • The MIS is available in the Alzheimer's Association Cognitive assessment toolkit.
  • Mini-Cog
    • The Mini-Cog consists of 2 components: a 3-item recall test for memory and a clock drawing test. 
    • There is one point for each word remembered after the clock has been drawn, and 2 points for a normal clock.
    • A total score of 3, 4, or 5 indicates lower likelihood of dementia but does not rule out some degree of cognitive impairment. 
  • Test Your Memory (TYM) 
    • The TYM is a self-administered test, which is a series of 10 tasks: orientation (10 points), ability to copy a sentence (2 points), semantic knowledge (3 points), calculation (4 points), verbal fluency (4 points), similarities (4 points), naming (5 points), visuospatial abilities (2 tasks, total 7 points), and recall of a copied sentence (6 points). The ability to do the test is also scored (5 points).
    • The maximum score is 50 points. A score of 42 or less detects 93% of cases of mild Alzheimer's with a specificity of 86%.

[Brown, 2009; Young, 2011; Apolinario, 2016; NICE, 2021a]

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guidelines Dementia: assessment, management and support for people living with dementia and their carers) [NICE, 2021a] and Mental health problems in people with learning disabilities: prevention, assessment and management [NICE, 2016], the NICE technology appraisal Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease [NICE, 2018], the European Federation of Neurological Societies (EFNS-ENS) guidelines on the diagnosis and management of disorders associated with dementia [Sorbi, 2012], the Canadian Guidelines and Protocols Advisory Committee (GPAC) guideline Cognitive impairment: recognition, diagnosis and management in primary care [GPAC, 2016], the British Medical Journal (BMJ) Best Practice guidelines Alzheimer's dementia [BMJ, 2019] and Assessment of dementia [BMJ, 2018a], expert opinion in narrative reviews Dementia: timely diagnosis and early intervention [Robinson, 2015] and Dementia revealed. What primary care needs to know: a primer for general practice [Barrett, 2014], and what CKS considers good medical practice.

What else could it be?

  • Conditions that can present with similar symptoms to dementia include:
    • Normal-age related memory changes
      • Normal ageing is associated with a mild decline in cognitive function, and memory lapses are common, especially during times of acute physical illness, depression, or stress. 
    • Mild cognitive impairment (MCI) 
      • MCI is a heterogeneous group characterized by objective cognitive impairment (but not severe enough to merit a diagnosis of dementia), but without significant impact on daily activities or discernible progression over time.
      • In general, over 3 years, one-third of people with MCI spontaneously improve (suggesting that their symptoms were caused by depression, anxiety, or self-limiting physical illness), one-third stay the same, and one-third progress to dementia. 
    • Depression 
      • Depression masquerading as dementia is probably the most common differential diagnosis, however they can coexist, and depression may precede dementia. 
      • Symptoms of depression include low mood, loss of interest, anhedonia, and self-neglect.
      • In older people, features of depression may be less obvious, with somatic symptoms (such as reduced appetite, fatigue, and insomnia) more common.
      • For further information, see the CKS topic on Depression.
    • Delirium 
      • Delirium (sometimes called 'acute confusional state') is an acute, fluctuating syndrome of disturbed consciousness, attention, cognition, and perception. There is substantial change or fluctuation in mental status over hours or days.
      • People with cognitive impairment are at increased risk of delirium, and the two conditions often coexist.
      • For further information, see the CKS topic on Delirium.
    • Vitamin deficiency 
      • Thiamine deficiency can lead to Wernicke-Korsakoff's syndrome. Symptoms include confusion, memory loss (onset of symptoms is within days to weeks), altered mental state and consciousness, peripheral neuropathy, and gait disturbances. 
      • Vitamin B12 deficiency can lead to cognitive impairment (including confusion and irritability), ataxia, and gait disturbance.
      • For further information, see the CKS topic on Anaemia - B12 and folate deficiency.
    • Hypothyroidism 
      • Symptoms of hypothyroidism can include depression, and impaired concentration and memory.
      • For further information, see the CKS topic on Hypothyroidism. 
    • Adverse drug effects 
      • Many drugs can affect cognition, including benzodiazepines, opioids, drugs with anticholinergic adverse effects (for example, tricyclic antidepressants, antipsychotics, urinary antispasmodics, antihistamines), antiepileptic drugs (especially older preparations, such as phenytoin and phenobarbital), corticosteroids, nonsteroidal anti-inflammatories (NSAIDs). 
      • Inappropriate polypharmacy can lead to drug interactions and drug-induced confusion due to individual drugs or an accumulation of adverse effects. 
      • In older people, decreased renal and liver function and reduced clearance of drugs can make them more susceptible to adverse effects. 
    • Normal pressure hydrocephalus 
      • Normal pressure hydrocephalus can present with symptoms of early cognitive impairment, urinary incontinence, and gait disorder.
    • Sensory deficits 
      • Problems with vision and hearing can contribute significantly to an apparent decline in cognitive ability.
  • Note: subcortical dementia is an HIV indicator condition. For more information, see the CKS topic on HIV infection and AIDS.

Basis for recommendation

These recommendations are based on the British Medical Journal (BMJ) Best Practice guidelines Alzheimer's dementia [BMJ, 2019] and Assessment of memory deficit [BMJ, 2018c]; the NHS Scotland guideline Polypharmacy guidance, realistic prescribing [NHS Scotland, 2018]; expert opinion in narrative reviews Dementia: timely diagnosis and early intervention [Robinson, 2015], Dementia revealed. What primary care needs to know: a primer for general practice [Barrett, 2014], Cognitive assessment of older people [Young, 2011], and Practical guidelines for the recognition and diagnosis of dementia [Galvin, 2012]; and the British National Formulary (BNF) [Joint Formulary Committee, 2021].

Management

Scenario: Suspected dementia

From age 30 years onwards.

How should I manage a person with suspected dementia?

  • Arrange admission for people with suspected dementia if:
    • They are severely disturbed, and admission is needed to ensure the health and safety of the person and/or the safety of others. Detention under the Mental Health Act (1983) may be needed.
      • For further information, see the section on the Mental Health Act (1983) in the CKS topic on Self-harm.
    • Assessment in primary care is not appropriate, for example, if the person has complex physical and psychiatric problems.
  • Refer people 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], or cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated, and
    • Dementia is still suspected.
  • Refer people with learning disabilities with suspected dementia to a psychiatrist with expertise in assessing and treating mental health problems in people with learning disabilities. 
  • Refer people with suspected rapidly progressive dementia to a neurological service with access to tests (including cerebrospinal fluid examination) for Creutzfeldt–Jakob disease and similar conditions. 
  • For people with mild cognitive impairment (depending on local pathways and protocols): 
    • Discuss the diagnosis without provoking undue anxiety. 
    • Arrange regular follow-up visits (for example annually) to monitor possible progression of cognitive deficit. If symptoms deteriorate refer for specialist assessment and management. 
    • Suggest healthy brain activities such as regular exercise, word games, and socialization. 
  • Discuss the Driver and Vehicle Licensing Agency (DVLA) regulations on driving and cognitive impairment.
  • Treat any identified, modifiable risk factors for cognitive impairment (such as excess alcohol consumption, diabetes mellitus, cardiovascular risk factors) where possible.

Which specialist investigations are available?

  • Specialist investigations for suspected dementia:
    • Should include structural imaging — magnetic resonance imaging [MRI] or computed tomography [CT] scan.
    • May also include:
      • Fluorodeoxyglucose-positron emission tomography-CT (FDG-PET) or Perfusion SPECT (single-photon emission CT).
      • I-FP-CIT SPECT where a potential diagnosis of dementia with Lewy bodies (DLB) is suspected, or I-MIBG cardiac scintigraphy. 
      • Cerebrospinal fluid examination — this may not only be helpful in excluding infection, inflammation, or malignancy, but also in making a positive diagnosis of Alzheimer’s disease and diagnosing prion disease. It is typically recommended in people with rapid cognitive decline, unusual or neurological presentations, or cognitive impairment in people aged under 55 years. 

[Robinson, 2015; GPAC, 2016; NICE, 2021a; Schott, 2020]

Specialist management

  • Non-pharmacological interventions to promote cognition, independence, and wellbeing for people with mild to moderate dementia may include [NICE, 2021a]:
    • Cognitive stimulation therapy — a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning.
    • Group reminiscence therapy — this uses objects from daily life to stimulate memory and enable people to value their experiences [Tible, 2017].
    • Cognitive rehabilitation or occupational therapy to support functional ability — the aim is to addresses the disability resulting from the impact of cognitive impairment on everyday functioning and activity by identifying goals that are relevant to the person. 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.
  • Drug treatments for cognitive symptoms should only be initiated on the advice of a clinician who has the necessary knowledge and skills, including:
    • Secondary care medical specialists such as psychiatrists, geriatricians, and neurologists.
    • Other healthcare professionals if they have specialist expertise in diagnosing and treating Alzheimer's disease.
  • Treatment may be continued in primary care including [NICE, 2021a]:
    • Acetylcholinesterase (AChE) inhibitors (donepezil, galantamine, and rivastigmine) — as monotherapies for managing mild to moderate Alzheimer's disease.
    • Memantine (a N-methyl-D-aspartic acid receptor antagonist):
      • As monotherapy for managing Alzheimer's disease for people with moderate Alzheimer's disease who are intolerant of, or have a contraindication to, AChE inhibitors, or for people with severe Alzheimer's disease.
      • In addition to an AChE for people with established moderate or severe Alzheimer's disease who are already taking an AChE — this can be started in primary care without the need to take specialist advice. 
  • For people with non-Alzheimer's dementia the use of AChE inhibitors or memantine is unlicensed, but they may be prescribed by a specialist for people with: 
    • Mild to moderate dementia with Lewy bodies:
      • Donepezil or rivastigmine are recommended first line.
      • Galantamine is an option if donepezil and rivastigmine are not tolerated.
    • Severe dementia with Lewy bodies:
      • Donepezil or rivastigmine are recommended.
    • Vascular dementia:
      • AChE inhibitors or memantine are options if the person has suspected comorbid Alzheimer's disease, Parkinson's disease dementia, or dementia with Lewy bodies.
  • People with frontotemporal dementia should not be offered AChE inhibitors or memantine.
  • People started on drug treatments for cognitive symptoms (and their families) should be counselled about realistic treatment outcomes [Galvin, 2012].
  • Drug treatments for non-cognitive symptoms may include antipsychotics [MHRA, 2014; NICE, 2021a; NICE, 2019b]:
    • These may be considered after a thorough clinical examination including an assessment for possible psychotic features (such as delusions and hallucinations). 
    • They should only be initiated under specialist supervision. 
    • Risperidone and haloperidol are the only antipsychotics licensed for treating non-cognitive symptoms of dementia, although other antipsychotics are often prescribed off-label for this purpose.

Information on driving and cognitive impairment

  • For mild cognitive impairment (not mild dementia) where there is [DVLA, 2021]:
    • No likely driving impairment — group 1 (car and motorcycle) and group 2 (bus and lorry) licence holders may drive and need not notify the DVLA. 
    • Possible driving impairment — group 1 and group 2 licence holders may be allowed to drive subject to medical advice and/or notifying DVLA. The decision on licensing is usually based on medical reports. Poor short-term memory, disorientation, and lack of insight and judgement almost certainly mean no fitness to drive. Disorders of attention will also cause impairment. A formal driving assessment may be necessary. A licence may be issued subject to review. 
  • For dementia and/or any organic syndrome affecting cognitive functioning [DVLA, 2021]:
    • Group 1 licence holders may be able to drive but must notify the DVLA. The decision on licensing is usually based on medical reports. Poor short-term memory, disorientation, and lack of insight and judgement almost certainly mean no fitness to drive. Disorders of attention will also cause impairment. In early dementia, when sufficient skills are retained and progression is slow, a licence may be issued subject to annual review. A formal driving assessment may be necessary. 
    • Group 2 licence holders must not drive and must notify the DVLA. Licensing will be refused or revoked.
  • For complete and up-to-date guidance on driving and cognitive impairment, see the DVLA document 'Assessing fitness to drive - a guide for medical professionals'.

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guideline Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a], the Canadian Guidelines and Protocols Advisory Committee (GPAC) guideline Cognitive impairment: recognition, diagnosis and management in primary care [GPAC, 2016], and expert opinion in narrative reviews Dementia: timely diagnosis and early intervention [Robinson, 2015] and Dementia revealed. What primary care needs to know: a primer for general practice [Barrett, 2014]. 

Memantine and acetylcholinesterase (AChE) inhibitors
  • Studies of AChE inhibitors report modest improvements or stabilization of dementia symptoms [GPAC, 2016].
    • Benefits were demonstrated in cognitive function, activities of daily living, behavioural and measures of global function, but none of these treatment effects are large. 
    • Currently, there is insufficient evidence for AChE inhibitors in the outcome measures of delayed institutionalization, mortality, severe disease progression, and reduction of caregiver burden.
    • In studies with global outcomes (subjective assessment by clinician and/or caregiver of change overall), the number needed to treat is 12 (3–6 months) for one additional patient to experience stabilization or improvement on global response.
  • A recent Cochrane systematic review and meta-analysis of 44 studies that assessed the efficacy and safety of memantine for people with dementia as well as the benefit for people already taking AChE inhibitors found [McShane, 2019]:
    • A substantial volume of high-certainty evidence that showed that memantine has a small, beneficial, clinically detectable effect in people with moderate-to-severe Alzheimer's disease (AD) at 6 months and this benefit was also seen in people taking AChE inhibitors.
    • Moderate-certainty evidence that memantine is of no benefit in mild AD over 6 months and that there is a possibility of increased discontinuation due to adverse events.
    • There was no clinical trial evidence to support the suggestion that memantine reduces disease progression any more than placebo.
  • A Cochrane systematic review and meta-analysis of 28 studies that assessed the efficacy and safety of donepezil in people with mild, moderate, or severe dementia due to Alzheimer's disease, found that in people with mild, moderate, or severe dementia due to Alzheimer's disease treated for periods of 12, 24, and 52 weeks, donepezil at a dose of 10 mg/day produced improvements in cognitive function [Birks, 2018].
    • Study clinicians blind to other measures, rated global clinical state more positively in treated participants.
    • Benefits of treatment were also seen on measures of activities of daily living and behaviour.
    • Benefits on the 10 mg/day dose were only marginally larger than on the 5 mg/day dose.
  • A systematic review of three studies that compared galantamine to placebo found that in older adults with mild to moderate AD [AHRQ, 2020]:
    • Galantamine improved cognition (low strength of evidence [SOE]).
    • Galantamine increased the risk of withdrawals due to serious adverse events (low SOE).
    • There was insufficient evidence for individual cognitive domains, function, quality of life, clinical impression of change, or serious adverse events.
  • A systematic review of five studies that compared rivastigmine with placebo in older adults found that [AHRQ, 2020]:
    • In mild to moderate AD rivastigmine 12 mg/day oral or 9.5 mg/day transdermal patch showed:
      • Small improvement in cognition (low SOE for brief cognitive tests commonly used as individual stand-alone tests, moderate SOE for brief multidomain batteries), function (low SOE), staging (low SOE), and clinical impression of change (moderate SOE), and insufficient evidence for attention.
      • Increased withdrawals due to adverse events (moderate SOE), but no difference in serious adverse events (low SOE).
    • In mild to moderate AD rivastigmine 4 mg/day oral or 4.6 mg/day transdermal patch showed:
      • No difference in cognition (moderate SOE for brief cognitive tests commonly used as individual stand-alone tests, low SOE for brief multidomain batteries), function (low SOE), and insufficient evidence in global staging, but a less than small improvement in clinical impression of change (low SOE).
      • No difference in serious adverse events or withdrawals due to adverse events (low SOE).
    • In moderate to severe AD, the evidence for rivastigmine 12 mg/day oral or 9.5 mg/day transdermal patch compared with placebo showed small improvement in clinical impression of change (low SOE) and insufficient evidence for cognition.

Scenario: Follow up of confirmed dementia in primary care

From age 30 years onwards.

How should I follow up a person who has been diagnosed with dementia?

Following a diagnosis of dementia:

  • 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 (if this has not already been done in secondary care).
  • 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.
      • Factsheets on driving (for example, from the Alzheimer’s Society website) are available and can be used to help people with dementia decide when to give up driving. All drivers with dementia must eventually stop driving when dementia becomes moderately severe, and in many cases earlier.
      • Where there is uncertainty over the person's driving ability, a driving assessment can be undertaken at one of the DVLA assessment centres. See the section on Driving for more information.
    • 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.
  • Ask the person: 
    • 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.
  • 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.
  • 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. 
  • Ensure the person with dementia has a care manager and a regularly reviewed care plan. 
    • People living with dementia should have a single named health or social care professional who is responsible for coordinating their care. 
    • Care plans for people with dementia should cover diagnosis review, support for carers review, medication review, risk evaluation, new symptoms inquiry, treatments and support, advanced care planning, as well as individualized information. 
    • As a minimum, the plan should be reviewed annually, but the frequency of reviews should be tailored to the needs of the individual.
  • Assess for any emerging dementia-related needs and ask the person and their carers if they need any more support. 
  • Monitor physical and mental health. 
    • Assess and manage other long-term conditions. 
      • Around 70–80% of people diagnosed with dementia in primary care have at least two other chronic illnesses. 
    • Be alert for comorbidities such as depression and/or anxiety. For further information see the CKS topics on Depression and Generalized anxiety disorder.
      • Consider the possibility of delirium if an abrupt deterioration in cognitive function is noted — cognitive impairment is a risk factor for delirium, and people with dementia have a high risk of developing delirium. For further information see the CKS topic on Delirium.
    • Consider the need for referral to other services such as dentistry, optometry, occupational therapy, physiotherapy, and speech and language therapy. 
  • Monitor response to, and adverse effects from, dementia treatments and the progression of dementia.
    • Consider memantine in addition to an AChE inhibitor in people with moderate disease who are already taking an AChE — this can be done in primary care without taking advice from a specialist clinician.
    • Offer memantine in addition to an AChE inhibitor to people with severe disease who are already taking an AChE — this can be done in primary care without taking advice from a specialist clinician.
  • Review medication — reduce polypharmacy (if appropriate to do so), minimize use of drugs that impair cognition (such as anticholinergics), review use of antipsychotics (if appropriate), stop unnecessary medicines. 
    • Drugs to be used with caution in dementia include: 
      • Tricyclic antidepressants (for example, amitriptyline).
      • Antiemetics (for example, metoclopramide).
      • Analgesics (for example, pethidine or tramadol).
      • Sedatives (for example, long-acting benzodiazepines or antipsychotics).
      • Antihistamines (for example, chlorphenamine).
    • Be aware that validated tools for assessing anticholinergic burden are available (for example, the Anticholinergic Cognitive Burden Scale).
  • Refer or seek advice from a specialist (such as an elderly care psychiatrist, challenging behaviour team, or elderly care physician) if:
    • BPSD develop that do not respond to initial management. 
    • There are safeguarding concerns.
    • There are legal issues that require specialist involvement. 
    • Detention under the Mental Health Act (1983) is being considered.
      • For further information, see the section on the Mental Health Act (1983) in the CKS topic on Self-harm.
    • Dose adjustments of anticholinesterase (AChE) inhibitors or memantine are required (for example, if the person is experiencing adverse effects).

Sources of support and information for people with dementia and their family/carers

  • 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 and direct them to relevant services for information and support. 
  • Tell people living with dementia (at all stages of the condition) about research studies they could participate in.
  • Sources of support and information for people with dementia and their family/carers, include:
    • The Royal College of Psychiatrists fact sheet on dementia (www.rcpsych.ac.uk).
    • NHS A-Z — a patient information article on dementia (www.nhs.uk/conditions/dementia). 
    • The Alzheimer's Society — information on all types of dementia (www.alzheimers.org.uk). 
      • A leaflet 'This is me' can be printed to help support people with dementia in an unfamiliar place or with unfamiliar carers.
    • Alzheimer’s Research UK, which provides health information relating to dementia (www.alzheimersresearchuk.org).
    • The Lewy Body Society, which provides information and support for families/carers affected by Lewy Body dementia (www.lewybody.org).
    • The Frontotemporal Dementia Support Group (formerly Pick's Disease Support Group), which provides information and support for people with frontotemporal dementia and their family/carers (www.ucl.ac.uk).
    • Carers UK, which provides help for people caring for a sick, disabled, or elderly person at home (www.carersuk.org).
    • Dementia pathfinders, which provides education for people working in the dementia care field, and care and support for people with dementia and their family/carers (www.dementiapathfinders.org).
    • The Office of the Public Guardian, which supports decision-making (within the framework of the Mental Capacity Act 2005) for people who lack capacity or would like to plan for their future (www.gov.uk).
    • The NICE and the Social Care Institute for Excellence (SCIE) leaflet Dementia – discussing and planning support after diagnosis.
  • 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 personalized 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 when required after this.
  • 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.
      • Be aware that carers of people living with dementia are at an increased risk of depression.
    • An assessment of their need for short breaks and other respite care.

[NICE, 2021a]

Managing non-cognitive symptoms

  • Behaviour that challenges — 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, inappropriate care, or adverse effects of medication).
    • Offer psychosocial and environmental interventions to reduce distress.
    • Offer personalized activities to promote engagement, pleasure, and interest to people who experience agitation or aggression.
      • Do not offer valproate to manage agitation or aggression in people living with dementia, unless it is indicated for another condition.
    • Only offer antipsychotics to people with dementia who are either:
      • At risk of harming themselves, or
      • Experiencing agitation, hallucinations, or delusions that are causing them severe distress.
    • Risperidone and haloperidol are the only antipsychotics licensed for treating non-cognitive symptoms of dementia — they should only be initiated under specialist supervision. 
      • 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. 
      • When using antipsychotics use the lowest effective dose, use them for the shortest possible time and reassess the person at least every 6 weeks to check if they are still required — antipsychotics are associated with an increased risk of cerebrovascular adverse events and greater mortality when used in this population.
      • Stop treatment with antipsychotics, after discussion with the person taking them and their family members or carers (as appropriate), if the person is not getting a clear ongoing benefit from them. 
    • 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.
    • Be aware that in 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. 
    • If challenging behaviour requires urgent treatment (when the person is a danger to themselves or others) and underlying causes (such as discomfort, thirst, or the need for the toilet) have been addressed:
      • Advise moving the person to a safe, low-stimulation environment (such as a quiet room) away from others.
      • Advise use of verbal and non-verbal de-escalation techniques (such as active listening, effective verbal responding, pictures, and symbols). 
  • 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. For more information, see the CKS topics on Depression and Generalized anxiety disorder.
  • Sleep problems 
    • Do not offer melatonin to manage insomnia in people living with Alzheimer's disease.
    • Consider a personalized multicomponent sleep management approach that includes sleep hygiene education, exposure to daylight, exercise, and personalized activities. For more information, see the CKS topic on Insomnia. 
  • Parkinson's disease 

[MHRA, 2014; NICE, 2021a; BMJ, 2019; NICE, 2019b]

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guidelines Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a] and Mental health problems in people with learning disabilities: prevention, assessment and management [NICE, 2016], the NHS England documents Dementia: good personalised care and support planning. Information for primary carer providers and commissioners [NHS England, 2020] and Dementia diagnosis and management: a brief pragmatic resource for general practitioners [NHS England, 2015], the British Psychological Society (BPS) briefing paper Alternatives to antipsychotic medication: psychological approaches in managing psychological and behavioural distress in people with dementia [British Psychological Society, 2013], and expert opinion in narrative reviews Dementia, prevention, intervention and care: 2020 report of the Lancet Commission [Livingston, 2020], Cognitive assessment of older people [Young, 2011], Dementia revealed. What primary care needs to know: a primer for general practice [Barrett, 2014], and Best practice in the management of behavioural and psychological symptoms of dementia [Tible, 2017].

Behavioural and psychological symptoms of dementia (BPSD)
  • BPSD are associated with worsening cognition and progression to more severe stages of dementia and the aetiopathogenesis can be complex and multifactorial, involving biological, psychological, personal, and environmental factors [Tible, 2017]. 
  • Before starting treatments for BPSD people with dementia should be assessed for possible clinical causes (including delirium) and underlying causes should be addressed and managed if possible before considering pharmacological measures that sedate or tranquillize [British Psychological Society, 2013; Tible, 2017; NICE, 2021a].
    • Behaviours identified as challenging may be due to pain, acute medical problems, distress, disorientation and misperception, discomfort, hunger, loneliness, boredom or over-stimulation, for example.
    • Pain is a common precipitant or exacerbating factor in BPSD. A randomized controlled trial (n = 352) found a 17% improvement in agitation following stepped analgesic treatment, similar to the benefit found following antipsychotic use [Corbett, 2012].
  • Non-pharmacological (psychosocial) approaches are recommended first-line in managing BPSD [British Psychological Society, 2013; Tible, 2017; NICE, 2021a].
    • Non-pharmacological treatment of BPSD should be tailored to the person's preferences, skills, and abilities. The response should be monitored, and the care plan adapted accordingly [Tible, 2017]. 
  • NICE does not recommend specific types of psychosocial intervention, but instead makes a research recommendation [NICE, 2021a]. 
  • A systematic review and Bayesian network meta-analysis of 65 randomized controlled trials that compared and ranked the efficacy of 11 non-pharmacological interventions in the management of agitation in people with dementia, showed that massage therapy, animal-assisted intervention, and personally tailored intervention were associated with more substantial reductions in agitation compared with other interventions and controls [Leng, 2020]. 
Dementia and delirium
  • Cognitive impairment is a risk factor for delirium [Young, 2011], and people with dementia show faster cognitive decline if they develop delirium than if they do not [Livingston, 2020].
    • Risk factors for delirium in dementia include sensory impairment, pain, polypharmacy, dehydration, intercurrent illnesses, such as urinary tract infections or faecal impaction, and an unfamiliar or changing environment. 
Antipsychotics
  • Moderate- to high-quality evidence from up to 17 randomized controlled trials (n = 5028) found improvements in the neuropsychiatric inventory (NPI), Brief Psychiatric Rating Scale, Cohen-Mansfield Agitation Inventory, and Clinical Global Impression of Change with atypical antipsychotics versus placebo in people with dementia, but higher rates of mortality, somnolence, and extrapyramidal and cerebrovascular adverse events [NICE, 2021a]. 
    • The NICE guideline development committee agreed that the significant risks of antipsychotic treatment meant their use should be restricted as much as possible, and limited only to situations either where there is an urgent need for treatment to prevent harm to the person living with dementia or others, or where the use is for the treatment of an underlying psychosis.
  • Elderly people with dementia-related psychosis treated with antipsychotics are at an increased risk of death [ABPI, 2019a]. 
    • Analyses of 17 placebo-controlled studies (modal duration of 10 weeks), largely in people taking atypical antipsychotics, revealed a risk of death of between 1.6 to 1.7 times the risk of death compared to placebo. The rate of death over 10 weeks was about 4.5%, compared to a rate of about 2.6% in the placebo group. 
    • In randomized, placebo-controlled clinical studies in people with dementia:
      • There was an approximately 3-fold increased risk of cerebrovascular adverse events with some atypical antipsychotics. 
      • The incidence of mortality was 4.0% for people taking risperidone tablets compared to 3.1% for placebo [ABPI, 2021a]. 
    • Elderly people with dementia who are treated with conventional antipsychotics are also at a small increased risk of death compared with those who are not treated [ABPI, 2021a]. 
  • The NICE guideline evidence review found that antipsychotics can be withdrawn without significant detrimental effects on behaviour in many people (around 50%) living with dementia, particularly when care staff are offered relevant training [NICE, 2021a; NICE, 2019b].
Antidepressants
  • NICE recommends that for people with dementia who have mild to moderate depression psychological treatments should be considered and that antidepressants should not be offered routinely unless they are indicated for pre-existing mental health problems [NICE, 2021a]. 
  • A Cochrane systematic review and meta-analysis of 10 studies (n = 1592) [Dudas, 2018] that assessed the efficacy and safety of any type of antidepressant for people diagnosed with dementia of any type and depression, found insufficient evidence to support the use of antidepressants for treating depression in dementia, especially beyond 12 weeks.
  • A more recent systematic review of 256 studies (n = 28,483) [Watt, 2021] that assessed the comparative efficacy of drug and non-drug interventions for reducing symptoms of depression in people with dementia found that non-drug interventions were more efficacious than drug interventions in people with dementia without a major depressive disorder. 
    • In a network meta-analysis of 213 studies (n = 25,177) interventions associated with a greater reduction in symptoms of depression compared with usual care were:
      • Cognitive stimulation.
      • Cognitive stimulation combined with acetylcholinesterase (AChE) inhibitor.
      • Massage and touch therapy.
      • Multidisciplinary care.
      • Occupational therapy.
      • Exercise combined with social interaction and cognitive stimulation.
      • Reminiscence therapy.
    • Except for massage and touch therapy, cognitive stimulation combined with a cholinesterase inhibitor, and cognitive stimulation combined with exercise and social interaction (which were found to be more efficacious than some drug interventions) there was no statistically significant difference in the comparative efficacy of drug and non-drug interventions for reducing symptoms of depression in people with dementia without a diagnosis of a major depressive disorder.
Mild cognitive impairment
  • The recommendations on managing people with mild cognitive impairment are based on the GPAC guideline [GPAC, 2016] and the NHS London Clinical Networks document Non-dementia pathway – guidance from the London Dementia Clinical Networks [NHS London Clinical Networks, 2020].

Scenario: Management of end-stage dementia

From age 30 years onwards.

How should I manage end of life care in a person with dementia?

  • End of life care in dementia shares many of the same principles as palliative care and focuses on improving quality of life, maintaining function, and maximizing comfort of the person with dementia. 
  • If possible, plan ahead in the earlier stages of dementia (while the person still has capacity) with the person and their family/carer. 
    • Advise the person to consider: 
      • Advance decisions — statements of future treatment wishes (including refusal of treatment). 
      • Lasting power of attorney — who they wish to make certain decisions for them when they are no longer able to. 
      • A preferred place of care plan — recording decisions about future care choices, for example where they would like to die. 
      • Making a will. 
    • Be aware that advance planning is a continual process and requires regular review.
  • For people living with dementia who are approaching the end of life, use an anticipatory healthcare planning process.
    • 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.
  • When providing care for a person with dementia:
    • Personalize care and facilitate shared decision-making (between the person with dementia, their carer/family, and the multidisciplinary healthcare team). 
    • Avoid overly aggressive, burdensome, or futile treatment. 
    • Ensure continuity and coordination of care. 
      • People with dementia may require coordination of a diverse range of services (for example primary care, community nursing, physiotherapy, and hospice care) to enable them to continue living at home and to die there if that is their wish. 
    • Provide psychosocial and spiritual support for the person with dementia and their family/carer. 
    • Recognize and discuss the terminal stage with family/carers in a timely way. 
    • Assess the carer's needs and support them. 
      • Families/carers may need social support, education on the palliative aspects of care in dementia, and bereavement support. 
    • Seek advice from a specialist (such as the palliative care team or a GP with a special interest in palliative care) if unsure of how to manage any palliative care issues. 
  • Specific issues that may be a concern in people with dementia at the end of life include:
    • Eating and drinking 
      • Encourage people with dementia to eat and drink for as long as possible, taking into account their nutritional needs.
      • Consider involving a speech and language therapist or dietician if there are concerns about a person's safety when eating and drinking (persistent weight loss or aspiration is observed). 
      • Do not routinely use enteral feeding in people living with severe dementia, unless indicated for a potentially reversible comorbidity. 
      • Loss of weight can occur in the later stages of dementia because of difficulties with coordination, chewing and swallowing, and/or inability or unwillingness to eat.
    • Distress or changes in behaviour
      • Assess the person for a clinical or environmental cause (pain, delirium, or inappropriate care) and manage accordingly. 
      • The treatment of pain in people with severe dementia should involve both pharmacological and non-pharmacological measures. For more information, see the NICE guideline on Care of dying adults in the last days of life.
    • Constipation, nausea, and loss of appetite
    • Withholding or withdrawal treatment 
      • When considering withholding or withdrawing life-prolonging treatment, follow the General Medical Council's standards and ethics guidance which explains the ethical and legal principles doctors are expected to adhere to. 
      • Any decisions about care and treatment (including resuscitation) should take account of the person's wishes and any advance decisions they have made.
    • Resuscitation 
      • Cardiopulmonary resuscitation is unlikely to succeed in cases of cardiopulmonary arrest in people with severe dementia.
      • If there is no valid and applicable advance decision to refuse resuscitation, a decision to resuscitate should take account of any expressed wishes or beliefs of the person with dementia, together with the views of the family/carers and the multidisciplinary team in accordance with the guidance developed by the Resuscitation Council UK (available at www.resus.org.uk) and, if the person lacks capacity, the provisions of the Mental Capacity Act 2005. It should be recorded in the medical notes and care plans.
      • Out-of-hours services should be informed of 'do not resuscitate' decisions and other relevant aspects of the care plan such as 'not for admission' based on prior discussion with person and their family/carer.

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guideline Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a], the European Association for Palliative Care White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care [van der Steen, 2014], and expert opinion in a review article Dementia revealed. What primary care needs to know: a primer for general practice [Barrett, 2014].

Prescribing information

Important aspects of prescribing information relevant to primary healthcare are covered in this section specifically for the drugs recommended in this CKS topic. For further information on contraindications, cautions, drug interactions, and adverse effects, see the electronic Medicines Compendium (eMC), or the British National Formulary (BNF).

Acetylcholinesterase inhibitors

  • Acetylcholinesterase (AChE) inhibitors should only be initiated on the advice of a clinician who has the necessary knowledge and skills.
    • Once a decision has been made to start an AChE the first prescription may be made in primary care and treatment may be continued in primary care.
    • Ensure that local arrangements for prescribing, supply, and treatment review follow the NICE guideline on medicines optimization.
    • Do not stop AChE inhibitors in people with Alzheimer's disease because of disease severity alone.
  • For further information, see the section on Specialist management.

[NICE, 2018; NICE, 2021a]

What dose of acetylcholinesterase inhibitor is usually prescribed?

  • Donepezil [NICE, 2018]  
    • For most people, initially 5 mg once daily at bedtime, increased if tolerated and necessary after 1 month to a maximum of 10 mg daily. 
  • Galantamine [NICE, 2018] [ABPI, 2019b]   
    • For most people, initially 8 mg capsule once daily for 4 weeks, then increased to 16 mg once daily for at least 4 weeks; maintenance dose is 16–24 mg once daily (for older tablet forms and liquid preparations half the total daily dose can be given twice daily). 
    • For people with moderate hepatic impairment: 
      • Initially 8 mg on alternate days, preferably taken in the morning, for 7 days. Thereafter, 8 mg once daily for 4 weeks. Daily doses should not exceed 16 mg. 
  • Rivastigmine [ABPI, 2021b] [ABPI, 2021c] [BNF, 2021]
    • Initially, 1.5 mg twice daily, increased in steps of 1.5 mg twice daily at intervals of at least 2 weeks, according to response and tolerance up to a maximum of 6 mg twice daily. If treatment is interrupted for more than several days, oral rivastigmine should be re-titrated from 1.5 mg twice daily. 
    • Transdermal application — there is a risk of fatal overdose with patch administration errors. The person and their family/carers should be clearly informed of the patch administration instructions, in particular to remove the previous day's patch before applying a new patch.
      • Initially, the 4.6 mg/24 hours patch should be applied to clean, dry, non-hairy, non-irritated skin on the back, upper arm, or chest. This should be removed after 24 hours and a replacement patch applied on a different area (the person should avoid using the same area for 14 days). 
      • After at least 4 weeks, if well tolerated, the dose should be increased to the usual maintenance dose of 9.5 mg/24 hours patch daily.
      • After a further 6 months, if well tolerated and cognitive deterioration or functional decline are demonstrated, the dose can be increased to 13.3 mg/24 hours patch daily (this should be done with caution in people who weigh less than 50 kg). 
      • If treatment is interrupted for more than 3 days, transdermal rivastigmine should be re-titrated from a 4.6 mg/24 hours patch.

What are the contraindications and cautions with acetylcholinesterase inhibitors?

  • Contraindications:
    • Donepezil hydrochloride   
      • Known hypersensitivity to donepezil hydrochloride, piperidine derivatives, or any excipients used in the formulation. 
      • Pregnancy and breastfeeding.
    • Galantamine  
      • Hypersensitivity to galantamine or to any of the excipients.
      • Severe renal impairment (estimated glomerular filtration rate [eGFR] less than 9 mL/minute/1.73 m2).
      • Severe hepatic impairment (Child-Pugh score greater than 9).
      • People who have both significant renal and hepatic dysfunction.
      • Urinary outflow obstruction.
      • Gastrointestinal obstruction.
      • During recovery from bladder or gastrointestinal surgery.
      • Pregnancy and breastfeeding.
    • Rivastigmine  
      • Known hypersensitivity to rivastigmine, other carbamate derivatives, or to any of the excipients used in the formulation.
      • Previous history of application site reactions suggestive of allergic contact dermatitis with the rivastigmine patch. 
      • Pregnancy and breastfeeding.
  • Cautions
    • For AChE inhibitors: 
      • History of bradycardia, heart block, recurrent unexplained syncope.
      • Concurrent treatment with drugs that reduce heart rate.
    • Donepezil hydrochloride   
      • Sick sinus syndrome or other supraventricular conduction abnormalities.
      • Susceptibility to peptic ulcers including concurrent nonsteroidal anti-inflammatory (NSAID) use.
      • Asthma and chronic obstructive pulmonary disease (COPD).
      • Hepatic impairment. 
      • Concomitant antipsychotic treatment — increased risk of neuroleptic malignant syndrome (NMS).
    • Galantamine   
      • Renal and hepatic impairment.
      • Cardiac disease (including sick sinus syndrome or other supraventricular conduction abnormalities, post-myocardial infarction, unstable angina, new onset atrial fibrillation, second degree heart block or greater, and congestive heart failure) or in those who use medicinal products that significantly reduce heart rate concomitantly, such as digoxin and beta blockers.
      • QTc interval prolongation or taking drugs that prolong the QTc interval. 
      • Electrolyte disturbances (such as hyperkalaemia or hypokalaemia).
      • Susceptibility to peptic ulcers including concomitant use of NSAIDs.
      • History of severe asthma, COPD, or pulmonary infection.
      • History of seizures.
    • Rivastigmine   
      • Hepatic impairment.
      • Renal impairment.
      • Gastric or duodenal ulcers (or susceptibility to ulcers).
      • Sick sinus syndrome or conduction abnormalities.
      • History of asthma or COPD.
      • History of seizures.
      • Bladder outflow obstruction.
      • Pre-existing, or a family history of, QT interval prolongation or at higher risk of developing torsade de pointes (for example, uncompensated heart failure, recent myocardial infarction, bradyarrhythmias, a predisposition to hypokalaemia or hypomagnesaemia, or concomitant use of medicines known to induce QT prolongation and/or torsade de pointes). 

[ABPI, 2019b; ABPI, 2020; ABPI, 2021c; ABPI, 2021b; Joint Formulary Committee, 2021]

What are the adverse effects of acetylcholinesterase inhibitors?

  • Adverse effects of donepezil include:
    • Commonly, nausea, vomiting, anorexia, diarrhoea, fatigue, insomnia, headache, dizziness, syncope, abnormal dreams, hallucinations, agitation, aggression, muscle cramps, urinary incontinence, rash, and pruritus.
    • Rarely, extrapyramidal symptoms, sinoatrial block, atrioventricular (AV) block, liver dysfunction (including hepatitis), and neuroleptic malignant syndrome (NMS).
      • NMS is a potentially life-threatening condition characterized by hyperthermia, muscle rigidity, autonomic instability, and fluctuating consciousness. Additional signs may include myoglobinuria (rhabdomyolysis) and acute renal failure.
      • The risk of NMS is increased in people receiving concomitant antipsychotics.
      • If a person develops signs and symptoms of NMS, or presents with unexplained high fever without additional clinical manifestations of NMS, donepezil treatment should be discontinued.
  • Adverse effects of galantamine include:
    • Commonly, vomiting, nausea, abdominal pain, diarrhoea, dyspepsia, decreased appetite, weight loss (monitor the person's weight during treatment with galantamine), bradycardia, hypertension, syncope, hallucinations, depression, dizziness, tremor, headache, fatigue, malaise, and muscle spasm.
    • Less commonly, retching, dehydration, extrapyramidal disorder, first-degree atrioventricular block, hypotension, flushing, palpitation, arrhythmias, first-degree AV block, taste disturbance, paraesthesia, seizures, hypersomnia, muscular weakness, blurred vision, tinnitus, and sweating.
    • Rarely, complete atrioventricular block, exacerbation of Parkinson’s disease, hepatitis, and serious skin reactions.
      • Warn people taking galantamine and their family/carers of the signs of serious skin reactions (including Stevens-Johnson syndrome, erythema multiforme, and acute generalized exanthematous pustulosis).
      • Galantamine should be discontinued at the first appearance of a skin rash.
  • Adverse effects of rivastigmine include:
    • Commonly, nausea, vomiting, diarrhoea, dyspepsia, anorexia, weight loss, abdominal pain, bradycardia, dizziness, headache, drowsiness, gait abnormalities, fall, malaise, agitation, anxiety, tremor, confusion, insomnia, parkinsonism, syncope, skin reactions, urinary tract infection, urinary incontinence, and sweating.
      • The manufacturer advises that treatment with transdermal rivastigmine should be temporarily stopped if gastrointestinal adverse effects occur.
    • Less commonly, atrial fibrillation, AV block, depression, aggression.
    • Rarely, extrapyramidal symptoms, gastric and duodenal ulceration, pancreatitis, angina, seizures.
    • Unknown frequency, dehydration, hallucinations, hepatitis, restlessness, sick sinus syndrome, tachycardia, hypertension.
  • Ability to drive — AChE inhibitors can cause fatigue, dizziness, somnolence and muscle cramps, and can induce syncope or delirium. They have a minor or moderate influence on the ability to drive, especially during the first weeks after initiation of treatment or dose increases. Routinely assess the person's ability to drive.

[ABPI, 2019b; ABPI, 2020; ABPI, 2021c; BNF, 2024; EMC, 2024]

What drug interactions can occur with acetylcholinesterase inhibitors?

  • Antimuscarinic drugs (such as tricyclic antidepressants) — these antagonize the effects of donepezil, galantamine, and rivastigmine.
    • Many drugs have antimuscarinic effects:
      • Concomitant use of two or more such drugs can increase adverse effects such as dry mouth, urine retention, and constipation. 
      • Concomitant use can also lead to confusion in the elderly.
  • Antipsychotics (such as olanzapine) — concurrent use increases the risk of neuroleptic malignant syndrome (NMS). 
    • If a person develops signs and symptoms of NMS, or presents with unexplained high fever without additional clinical manifestations of NMS, treatment should be discontinued.
  • Beta-blockers (such as atenolol) or other bradycardia agents (such as class III antiarrhythmics, calcium channel blockers) — if concurrent use is necessary, be alert for bradycardia. 
  • Other possible drug interactions include:
    • For donepezil:
      • Liver enzyme inhibitors — cytochrome P450 enzyme CYP3A4 inhibitors (such as ketoconazole and possibly itraconazole and erythromycin) and CYP2D6 inhibitors (such as quinidine and possibly fluoxetine) inhibit donepezil metabolism.
      • Liver enzyme inducers — enzyme inducers such as rifampicin, phenytoin, carbamazepine, and alcohol) may reduce plasma levels of donepezil.
    • For galantamine:
      • Liver enzyme inhibitors — CYP3A4 inhibitors (such as ketoconazole and erythromycin) and CYP2D6 inhibitors (such as paroxetine and fluoxetine) may increase the plasma concentration of galantamine.
    • For rivastigmine: 
      • Metoclopramide — concurrent use of rivastigmine and metoclopramide might increase the risk of extrapyramidal adverse effects. Be alert for movement disorders and signs of NMS.

 [ABPI, 2019b; ABPI, 2020; ABPI, 2021c; Preston, 2021]

Memantine hydrochloride

  • Memantine should only be initiated on the advice of a clinician who has the necessary knowledge and skills, unless the person has an established diagnosis of Alzheimer's disease and is are already taking an acetylcholinesterase (AChE) inhibitor, in which case treatment with memantine can be started without taking advice from a specialist clinician. 
  • Once a decision has been made to start memantine the first prescription may be made in primary care and treatment may be continued in primary care. 
  • Ensure that local arrangements for prescribing, supply, and treatment review follow the NICE guideline on medicines optimization. 
  • For further information, see the section on Specialist management.

 [NICE, 2018; NICE, 2021a]

What dose of memantine hydrochloride is usually prescribed?

  • As a general guide:
    • The usual dose for most people is initially 5 mg once daily, increased in steps of 5 mg at weekly intervals to a maximum of 20 mg daily. 
    • For people with renal impairment, the dose will depend on the estimated glomerular filtration rate (eGFR):
      • If eGFR is 30–49 mL/minute/1.73 m2, the dose should be reduced to 10 mg daily. If well tolerated after at least 7 days, the dose can be increased in steps to 20 mg daily.
      • If eGFR is 5–29 mL/minute/1.73 m2, the dose should be reduced to 10 mg daily.
      • If eGFR is less than 5 mL/minute/1.73 m2, memantine should be avoided.

[ABPI, 2021d; Joint Formulary Committee, 2021]

What are the contraindications and cautions with memantine hydrochloride?

  • Contraindications
    • Hypersensitivity to the active substance or to any of the excipients, including people with rare hereditary problems of galactose intolerance, the Lapp lactase deficiency, or glucose-galactose malabsorption. 
    • Severe hepatic impairment. 
    • Severe renal impairment — memantine hydrochloride should be avoided if estimated glomerular filtration rate (eGFR) is less than 5 mL/minute/1.73 m2. 
  • Cautions
    • History of convulsions or predisposing factors for epilepsy. 

[ABPI, 2021d; Joint Formulary Committee, 2021]

What are the possible adverse effects of memantine hydrochloride?

  • Adverse effects of memantine include:
    • Commonly, constipation, hypertension, dyspnoea, headache, dizziness, impaired balance, and drowsiness. 
    • Less commonly, vomiting, thrombosis, heart failure, confusion, fatigue, hallucinations, and abnormal gait.
    • Very rarely, seizures, pancreatitis, psychosis, depression, and suicidal ideation.

[ABPI, 2021d; Joint Formulary Committee, 2021]

What are the possible drug interactions with memantine hydrochloride?

  • Possible drug interactions with memantine include:
    • Antimuscarinics — memantine possibly enhances effects of antimuscarinics.
      • Many drugs have antimuscarinic effects; concomitant use of two or more such drugs can increase adverse effects such as dry mouth, urine retention, and constipation.
      • Concomitant use can also lead to confusion in elderly people.
    • Antipsychotics — memantine possibly reduces effects of antipsychotics. 
    • Barbiturates — memantine may reduce the effect of barbiturates. 
    • Baclofen and dantrolene — memantine possibly modifies the effects of these drugs. A dose adjustment may be necessary. 
    • Dopaminergics — memantine possibly enhances effects of dopaminergic drugs such as cabergoline. 
    • N-methyl-D-aspartate (NMDA)-antagonists (such as amantadine, ketamine, or dextromethorphan) — there is an increased risk of central nervous system toxicity with memantine. Avoid concomitant use. 
    • Warfarin — memantine possibly enhances anticoagulant effect of warfarin. Monitor international normalized ratio (INR) closely during concurrent use. 

 [ABPI, 2021d; Preston, 2021]

Antipsychotics

  • Antipsychotics may need to be considered in people with dementia with severe agitation or distress, but they should only be initiated under specialist supervision.
  • Haloperidol and risperidone are the only antipsychotics licensed in the UK for treating non-cognitive symptoms of dementia.

[NICE, 2019b]

What dose of antipsychotic is usually prescribed?

  • Haloperidol 
    • Initially, 0.5 mg daily, increasing gradually every 1–3 days according to response to a maximum of 5 mg daily if required (in 1–2 divided doses).  
    • Reassess treatment after no more than 6 weeks.
    • Doses above 5 mg/day should only be considered in people who have tolerated higher doses and after reassessment of the person's individual benefit-risk profile.
  • Risperidone
    • Initially, 0.25 mg twice daily, adjusted by increments of 0.25 mg twice daily on alternate days according to response.
    • The optimum dose is 0.5 mg twice daily, however some people may benefit from doses up to 1 mg twice daily.
    • Risperidone should not be used for more than 6 weeks in people with persistent aggression in Alzheimer's dementia.
    • During treatment, evaluate people frequently and regularly to reassess the need for continuing treatment.
    • Note: the MHRA advises that monitoring blood concentration of risperidone may be helpful in certain circumstances, such as presenting symptoms suggestive of toxicity, or when concomitant medicines may interact to increase blood concentration of risperidone.

[ABPI, 2019a; ABPI, 2021a; Joint Formulary Committee, 2021]

What are the contraindications and cautions with antipsychotics?

  • Contraindications
    • Haloperidol
      • Central nervous system depression, comatose states.
      • Congenital long QT syndrome, history of Torsade de Pointes, QTc interval prolongation, concurrent use with drugs that prolong the QT interval, history of ventricular arrhythmias, recent myocardial infarction, uncompensated heart failure.
      • Uncorrected hypokalaemia.
      • Progressive supranuclear palsy.
      • Dementia with Lewy bodies.
      • Parkinson's disease.
    • Risperidone
      • Hypersensitivity to risperidone or to any of the excipients.
  • Cautions
    • For all antipsychotics
      • Blood dyscrasias.
      • Cardiovascular disease — an ECG may be required, particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease.
      • Conditions predisposing to seizures.
      • Depression.
      • Diabetes (may raise blood glucose).
      • Epilepsy.
      • History of jaundice.
      • Myasthenia gravis.
      • Parkinson’s disease (may be exacerbated).
      • Photosensitization (may occur with higher dosages).
      • Prostatic hypertrophy.
      • Severe respiratory disease.
      • Susceptibility to angle-closure glaucoma.
    •  Haloperidol
      • Bradycardia.
      • Uncorrected electrolyte disturbances.
      • Family history of QTc-interval prolongation.
      • History of heavy alcohol exposure.
      • Hyperthyroidism.
      • Hypotension (including orthostatic hypotension).
      • Prolactin-dependent tumours.
      • Prolactinaemia.
      • Risk factors for stroke.
    • Risperidone
      • Acute porphyrias.
      • Cataract surgery (risk of intra-operative floppy iris syndrome).
      • Dehydration.
      • Dementia with Lewy bodies.
      • Prolactin-dependent tumours.

[ABPI, 2019a; ABPI, 2021a; BNF, 2021]

What are the possible adverse effects of antipsychotics?

What are the possible drug interactions with antipsychotics?

Supporting evidence

This CKS topic is largely based on the National Institute for Health and Care Excellence (NICE) guidelines Dementia: assessment, management and support for people living with dementia and their carers [NICE, 2021a] and Mental health problems in people with learning disabilities: prevention, assessment and management [NICE, 2016], the NICE technology appraisal guidance Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease [NICE, 2018], the NHS England documents Dementia: good personalised care and support planning. Information for primary carer providers and commissioners [NHS England, 2020] and Dementia diagnosis and management: a brief pragmatic resource for general practitioners [NHS England, 2015], the Canadian Guidelines and Protocols Advisory Committee (GPAC) guideline Cognitive impairment: recognition, diagnosis and management in primary care [GPAC, 2016], the British Medical Journal (BMJ) Best Practice guidelines Alzheimer's dementia [BMJ, 2019] and Assessment of dementia [BMJ, 2018a], and expert opinion in narrative reviews What primary care needs to know: a primer for general practice [Barrett, 2014], Best practice in the management of behavioural and psychological symptoms of dementia [Tible, 2017], and Dementia: timely diagnosis and early intervention [Robinson, 2015]. The rationale for individual recommendations is discussed in the relevant basis for recommendation sections of this topic.

How this topic was developed

This section briefly describes the processes used in developing and updating this topic. Further details on the full process can be found in the About Us section and on the Clarity Informatics website.

Search strategy

A literature search was conducted for guidelines, systematic reviews and randomized controlled trials on primary care management of dementia.

Search dates

July 2016 - March 2021

Key search terms

Various combinations of searches were carried out. The terms listed below are the core search terms that were used for Medline.

  • Dementia/, dementia.tw., alzheimer disease/, alzheimer's disease.tw.
  • Donepezil/, galantamine/, memantine/, rivastigmine/, benzodiazepines/, trazodone/, chlormethiazole., seratonin uptake inhibitors/, fluoxetine/, citalopram/, sertraline/
  • Antipsychotic agents/, antipsychotic$.tw., cognitive decline.tw.
  • Behavioural problems.tw., aggression.tw., sexual behaviour/, cholinesterase inhibitors/, acetylcholinesterase inhibitors.tw., cholinesterase inhibitors.tw.

Sources of guidelines

Sources of systematic reviews and meta-analyses

  • The Cochrane Library:
    • Systematic reviews
    • Protocols
    • Database of Abstracts of Reviews of Effects
  • Medline (with systematic review filter)
  • EMBASE (with systematic review filter)

Sources of health technology assessments and economic appraisals

Sources of randomized controlled trials

  • The Cochrane Library:
    • Central Register of Controlled Trials
  • Medline (with randomized controlled trial filter)
  • EMBASE (with randomized controlled trial filter)

Sources of evidence based reviews and evidence summaries

Sources of national policy

Patient experiences

Sources of medicines information

The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.

Stakeholder engagement

Our policy

The external review process is an essential part of CKS topic development. Consultation with a wide range of stakeholders provides quality assurance of the topic in terms of:

  • Clinical accuracy.
  • Consistency with other providers of clinical knowledge for primary care.
  • Accuracy of implementation of national guidance (in particular NICE guidelines).
  • Usability.

Principles of the consultation process

  • The process is inclusive and any individual may participate.
  • To participate, an individual must declare whether they have any competing interests or not. If they do not declare whether or not they have competing interests, their comments will not be considered.
  • Comments received after the deadline will be considered, but they may not be acted upon before the clinical topic is issued onto the website.
  • Comments are accepted in any format that is convenient to the reviewer, although an electronic format is encouraged.
  • External reviewers are not paid for commenting on the draft topics.
  • Discussion with an individual or an organization about the CKS response to their comments is only undertaken in exceptional circumstances (at the discretion of the Clinical Editor or Editorial Steering Group).
  • All reviewers are thanked and offered a letter acknowledging their contribution for the purposes of appraisal/revalidation.
  • All reviewers are invited to be acknowledged on the website. All reviewers are given the opportunity to feedback about the external review process, enabling improvements to be made where appropriate.

Stakeholders

  • Key stakeholders identified by the CKS team are invited to comment on draft CKS topics. Individuals and organizations can also register an interest to feedback on a specific topic, or topics in a particular clinical area, through the Getting involved section of the Clarity Informatics website.
  • Stakeholders identified from the following groups are invited to review draft topics:
    • Experts in the topic area.
    • Professional organizations and societies (for example, Royal Colleges).
    • Patient organizations, Clarity has established close links with groups such as Age UK and the Alzheimer’s Society specifically for their input into new topic development, review of current topic content and advice on relevant areas of expert knowledge.
    • Guideline development groups where the topic is an implementation of a guideline.
    • The British National Formulary team.
    • The editorial team that develop MeReC Publications.
  • Reviewers are provided with clear instructions about what to review, what comments are particularly helpful, how to submit comments, and declaring interests.

Patient engagement

Clarity Informatics has enlisted the support and involvement of patients and lay persons at all stages in the process of creating the content which include:

  • Topic selection
  • Scoping of topic
  • Selection of clinical scenarios
  • First draft internal review
  • Second draft internal review
  • External review
  • Final draft and pre-publication

Our lay and patient involvement includes membership on the editorial steering group, contacting expert patient groups, organizations and individuals.

Evidence exclusion criteria

Our policy

Scoping a literature search, and reviewing the evidence for CKS is a methodical and systematic process that is carried out by the lead clinical author for each topic. Relevant evidence is gathered in order that the clinical author can make fully informed decisions and recommendations. It is important to note that some evidence may be excluded for a variety of reasons. These reasons may be applied across all CKS topics or may be specific to a given topic.

Studies identified during literature searches are reviewed to identify the most appropriate information to author a CKS topic, ensuring any recommendations are based on the best evidence. We use the principles of the GRADE and PICOT approaches to assess the quality of published research. We use the principles of AGREE II to assess the quality of published guidelines.

Standard exclusions for scoping literature:

  • Animal studies
  • Original research is not written in English

Possible exclusions for reviewed literature:

  • Sample size too small or study underpowered
  • Bias evident or promotional literature
  • Population not relevant
  • Intervention/treatment not relevant
  • Outcomes not relevant
  • Outcomes have no clear evidence of clinical effectiveness
  • Setting not relevant
  • Not relevant to UK
  • Incorrect study type
  • Review article
  • Duplicate reference

Organizational, behavioural and financial barriers

Our policy

The CKS literature searches take into consideration the following concepts, which are discussed at the initial scoping of the topic.

  • Feasibility
    • Studies are selected depending on whether the intervention under investigation is available in the NHS and can be practically and safely undertaken in primary care.
  • Organizational and Financial Impact Analysis
  • Studies are selected and evaluated on whether the intervention under investigations may have an impact on local clinical service provision or national impact on cost for the NHS. The principles of clinical budget impact analysis are adhered to, evaluated and recorded by the author. The following factors are considered when making this assessment and analysis.
    • Eligible population
    • Current interventions
    • Likely uptake of new intervention or recommendation
    • Cost of the current or new intervention mix
    • Impact on other costs
    • Condition-related costs
    • In-direct costs and service impacts
    • Time dependencies
  • Cost-effectiveness or cost-benefit analysis studies are identified where available. 

We also evaluate and include evidence from NICE accredited sources which provide economic evaluations of recommendations, such as NICE guidelines. When a recommended action may not be possible because of resource constraints, this is explicitly indicated to healthcare professionals by the wording of the CKS recommendation.

Declarations of interest

Our policy

Clarity Informatics requests that all those involved in the writing and reviewing of topics, and those involved in the external review process to declare any competing interests. Signed copies are securely held by Clarity Informatics and are available on request with the permission of the individual. A copy of the declaration of interest form which participants are asked to complete annually is also available on request. A brief outline of the declarations of interest policy is described here and full details of the policy is available on the Clarity Informatics website. Declarations of interests of the authors are not routinely published, however competing interests of all those involved in the topic update or development are listed below. Competing interests include:

  • Personal financial interests
  • Personal family interest
  • Personal non-financial interest
  • Non-personal financial gain or benefit

Although particular attention is given to interests that could result in financial gains or losses for the individual, competing interests may also arise from academic competition or for political, personal, religious, and reputational reasons. An individual is not obliged to seek out knowledge of work done for, or on behalf of, the healthcare industry within the departments for which they are responsible if they would not normally expect to be informed.

Who should declare competing interests?

Any individual (or organization) involved in developing, reviewing, or commenting on clinical content, particularly the recommendations should declare competing interests. This includes the authoring team members, expert advisers, external reviewers of draft topics, individuals providing feedback on published topics, and Editorial Steering Group members. Declarations of interest are completed annually for authoring team and editorial steering group members, and are completed at the start of the topic update and development process for external stakeholders.

Competing interests declared for this topic:

None.

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