When to suspect dementia

Abstract

With global dementia cases approaching 50 000 000, the importance of early and accurate diagnosis is crucial. Primary care clinicians are often the initial point of contact for people, their family and caregivers when dementia is first suspected. People who suspect they, or their loved one, may have dementia often experience significant fear and distress. Timely and accurate diagnosis, with an honest but compassionate discussion of dementia and its prognosis, may alleviate some distress by reducing time to diagnosis. Timely diagnosis may also enable opportunities to use disease-limiting treatments, reduce unnecessary testing and investigations and provides an opportunity to undertake advance care planning.

Clinical case scenario

An 85-year-old woman presents with her son. She has hearing impairment and hypertension, but takes no regular medications. She lives alone and, until recently, has been fully independent.

Her son is worried about her memory. She has ‘got lost’ a few times and seems to be behaving strangely. He describes her going into the local town to do some shopping and, despite having lived there her entire adult life, not being able to find her way home. Several times he has gone to her house to find she has made tea for her husband who died several years ago.

The patient herself does not feel there are any problems. Her mood is good and she is appropriately dressed and interacts well. You conduct a Mini-Cog^© test; she scores 1/5, suggesting possible dementia, and a referral to a memory clinic is indicated. You explain your concerns about memory problems to her and her son, and arrange blood tests, an electrocardiogram and the referral to the memory clinic.

She is diagnosed with mixed Alzheimer’s disease and vascular dementia. Initially, she continues to live alone, supported by family, but over time her symptoms worsen. She eventually moves into a care home.

Introduction

The diagnosis of dementia can be challenging and relies on clinical judgement (Johnson et al., 2021). Through knowing patients over many years, GPs may be able to identify subtle changes in personality, behaviour and cognition that signal possible cognitive decline. Discussing this with patients, without causing undue distress or alarm, is important. This article discusses common types of dementia and their symptoms, when to suspect dementia, and how to investigate and manage dementia appropriately in a primary care context.

Definition

Dementia can be defined as ‘a progressive decline in cognitive function, and/or behaviour that impacts daily life functioning’ (Johnson et al., 2021). ‘Dementia’ is an umbrella term, encompassing multiple, irreversible neurodegenerative causes. This includes Alzheimer’s disease, Lewy body dementia, and vascular dementia, among other rarer causes. The DSM-V updated the diagnostic criteria for dementia and mild cognitive impairment (CI), terming them ‘major’ and ‘minor’ neurocognitive disorders respectively (American Psychiatric Association (APA), 2013). To diagnose ‘major neurocognitive disorder’ (dementia) there must be evidence of significant decline within at least one cognitive domain which interferes with functioning or daily life. ‘Minor neurocognitive disorder’ (mild CI) describes cognitive decline not sufficient to significantly impact daily functioning (APA, 2013).

Epidemiology and risk factors

By 2040, there are projected to be 1 200 000 people living with all-cause dementia in the UK (Rasmussen and Langerman, 2019). The most significant risk factor for dementia is increasing age (van der Flier and Scheltens, 2005). A strong family history and ApoE4 genotype have also been shown to convey significant non-modifiable increased risk for all-cause dementia. Young onset dementias, defined as occurring at age <65 years, are rare, constituting around 5% of UK cases (Prince et al., 2014).

A recent global report estimated up to 40% of dementia cases could be prevented or delayed through modifying key risk factors. These include overlapping cardiovascular risk factors: hypertension, obesity, smoking, diabetes, physical inactivity and alcohol consumption. Further risk factors include: hearing impairment, depression, social isolation, air pollution and traumatic brain injury (Livingston et al., 2020). As many of these risk factors are managed in primary care and the community, GPs are able to identify patients at increased risk of developing dementia and support patients to modify these risk factors in mid-life, potentially preventing or delaying the onset of dementia (Rasmussen and Langerman, 2019).

Expert consensus is that action regarding primary prevention of dementia is urgently needed (Anstey et al., 2020). Primary care clinicians are in an ideal position to facilitate this objective. There are not yet formal guidelines for specific primary prevention of dementia. The NHS Health Check guidance suggests that, during the health check, primary care clinicians should ‘raise awareness’ of the overlapping cardiovascular risk factors for dementia (Public Health England, 2019).

Suggested approach

History in suspected dementia

The history is the most important part of an accurate dementia diagnosis (Johnson et al., 2021). Dementia should be suspected in anyone presenting with new onset cognitive problems, although it is far more likely in those aged over 65 years, particularly those with vascular risk factors.

History should cover onset, cognitive symptoms, behavioural and psychological symptoms, and their impact on daily activities. Speed of progression is important to establish. A collateral history from a relative, friend or caregiver is highly recommended (National Institute for Health and Care Excellence (NICE), 2018). Those developing dementia may lack insight into their condition; a detailed history covering the concerns of someone close to them may elicit further information. Even relatively early in the disease course, dementia can impair the activities of daily life: forgetting to pay bills, forgetting appointments, forgetting medications (Falk et al., 2018). As the disease progresses, symptoms have more impact on day-to-day functioning, including difficulties with mobility, bathing, dressing, feeding and continence (Falk et al., 2018). Table 1 shows common dementias, and features suggesting each of them.

Table 1.

Types of dementia.

Diagnosis	Prevalence	Key symptoms
Alzheimer’s disease	Around 60% of dementia cases	Insidious onsetMemory and learning symptomsRepetitive questioning and conversingTopographical disorientationLoss of pleasure in readingSome insight may remain Often an event where decline becomes apparentRecall of recent events most affected
Vascular dementia	Around 20% of dementia cases	Insidious deteriorationOften begins after cerebrovascular accidentDisorganisation and loss of initiativeIrritabilityMental rigidityEmotional labilityMood changesOccasionally disinhibited social behaviours Often co-existent vascular risk factors
Dementia with Lewy bodies	Around 10–15% of dementia cases	Early disposition to severe, prolonged delirium Daytime drowsinessMisperceptions and visual hallucinationsDeterioration later in the day Parkinsonian features may be subtle early on
Fronto-temporal dementia syndromes	Around 5% of dementia cases	Socially inappropriate behavioursFamily reports change, usually lack of insight from the patientLoss of empathyChange in dress, eating habits (‘pathological sweet tooth’) Compulsive behaviours, development of new, fervent beliefsAnomia, circumlocutory speech

Adapted from (Falk et al. (2018) and Johnson et al. (2021).

It is important to clarify descriptions of symptoms given by patients and caregivers. Ambiguous symptom descriptions should be questioned in detail, and the meaning clarified; examples are detailed below (Johnson et al., 2021).

‘Poor memory’: Explore if this means for people/close relatives, places, words, appointments, dates or a combination. Clarify if this is pervasive over different environments, and whether this is new and progressive, or a longstanding character trait

‘Getting lost’: Clarify if this is topographical disorientation, even in a familiar environment, or wandering rather than aiming for a purposeful destination. Again, is this new or has the person always struggled with finding places or following directions

‘More anxious/irritable’: Establish if this is a personality change, or from anxiety/fear around embarrassment. Consider if this relates to mood rather than memory

Asking for examples and anecdotes from the patient, friends or family may be useful. Considering the possibility of a psychiatric diagnosis is important, and the history should cover this point. Depression may mimic dementia. This is particularly important if either poor concentration or anxiety is a feature; these affect attention and registration of information, which may impact memory and recall. There is often a history of previous episodes (Johnson et al., 2021). Low mood and anhedonia are the core symptoms, and may be accompanied by appetite and sleep changes, fatigue and disinterest. Depression may be a prodromal feature or early symptom in some dementias, and depression itself is a risk factor for dementia (Johnson et al., 2021; Livingston et al., 2020).

The classic ‘gradual’ deterioration of memory in Alzheimer’s dementia pathology, and sudden or step-wise picture in vascular dementia, is over-simplistic, especially with increasing evidence of the role played by small vessel disease in dementia pathologies (Bos et al., 2018). Some people may identify a triggering event after which they feel the symptoms began; for example, hospital admission or a bereavement. In reality, it is rare that one event in isolation causes immediate catastrophic cognitive decline (Johnson et al., 2021). Depression or delirium may exacerbate or unmask underlying CI.

Early in the disease course symptoms may point to a specific cognitive domain being affected, e.g. word-finding difficulties suggest language is impaired, and repetition of conversations suggests learning and memory are impaired (Johnson et al., 2021). In later stages of dementia, and in the old-old and oldest old, pathologies may overlap and a mixed picture may be evident, for example, someone with Alzheimer’s disease pathology may have co-existent cerebrovascular pathology. Past medical history may elicit risk factors for dementia, including vascular risk factors (Falk et al., 2018). Medication should be reviewed. Enquire about family history: familial dementias represent around 1% of cases (Alzheimer’s Society, 2022). These include familial variants of early onset Alzheimer’s disease and frontotemporal dementias (Falk et al., 2018). However, a parent or grandparent who developed Alzheimer’s disease in their late 70s or 80s does not confer an elevated risk of the condition as compared with that of the general population (Alzheimer’s Society, 2022).

Examination

Physical examination should be undertaken if dementia is suspected. Observation may provide clues to diagnosis. Examinations of the neurological system, cerebellum and cranial nerves with fundoscopy should be completed. This may reveal signs of raised intracranial pressure, focal neurological deficit, Parkinsonian features or signs of a degenerative neurological condition.

Consider general examination, particularly cardiovascular and respiratory, which may reveal signs of dementia risk factors. Assess for risk factors for cerebrovascular disease, such as atrial fibrillation and hypertension, and consider a person-centred approach to managing these concurrently. Nail signs may suggest vitamin deficiencies, and examine for evidence of hypothyroidism (Falk et al., 2018). Testing the patient’s eyesight and arranging hearing tests, ensuring any sensory aids are working, is also important. Sensory impairment may mimic cognitive decline or exacerbate symptoms.

Investigation

NICE guidance suggests investigation to rule out reversible causes of cognitive decline (NICE, 2018). This includes blood tests and a urine sample. Blood testing should be based on the history, symptoms and signs, and include screening for haematological disorders, electrolyte disturbances, metabolic disturbances and, where indicated, infectious disease, including possible sexually transmitted infections HIV and syphilis. Urine cultures should be used to exclude infection where this is suspected; it is important to note that in older adults aged >65 years, urine dipsticks should not be used for this purpose (NICE, 2021).

Medication review

A detailed medication review must be undertaken. Older people are at higher risk of adverse effects from medications, due to altered pharmacokinetics and pharmacodynamics with increasing age, and a greater likelihood of polypharmacy, due to multi-morbidity (Gallagher et al., 2008; O’Mahony et al., 2015). Adverse effects from medications may mimic dementia or may worsen baseline cognition in established dementia; therefore, stopping some medicines may improve cognition.

High anti-cholinergic burden in older people may present with cognitive dysfunction (NICE, 2018). There are many medications with a high anti-cholinergic burden which are regularly prescribed for older patients, including amitriptyline, oxybutynin and paroxetine (West Essex Medicines Management Team, 2020). These medications, particularly if more than one is prescribed, can result in anti-cholinergic syndrome. Central nervous system manifestations of this may result in delirium, disorientation and agitation, which may mimic dementia. Anti-cholinergic burden calculators, available online, are a useful resource (for example, www.acbcalc.com or www.medichec.com); they estimate the cholinergic burden of patients with polypharmacy.

The STOPP/START toolkit (available to download: www.cgakit.com/m-2-stopp-start) has been developed to reduce polypharmacy in older adults (Gallagher et al., 2008; O’Mahony et al., 2015). It is evidence-based and describes which medications we should consider starting and stopping in older patients with the rationale for this discussed.

Cognitive screening

Cognitive screening is recommended for initial assessment in non-specialist settings. NICE recommends use of a validated screening tool such as the General Practitioner assessment of Cognition (GPCOG) (Brodaty et al., 2002) or the Mini-Cog^© (Borson et al., 2003) among others (NICE, 2018). Many of these screening tools take a very short time to perform, and can be incorporated into a consultation. Familiarity with various tools is useful, and particular tools may be more or less suitable for certain populations, such as if a translated version is required. Care must be taken as cross-cultural and inter-linguistic validity of cognitive screening tests is not always established. Validated, multicultural cognitive assessment scales are available (Storey et al., 2004). When taking the collateral history from an informant, consider supplementing this with a structured questionnaire such as the Informant Questionnaire for Cognitive Decline in the Elderly (Jorm and Korten, 1988; Jorm et al., 1991).

Differential diagnosis

There are many reversible causes of CI and systematic enquiry should rule these out. Table 2 details common differential diagnoses. Vitamin or metabolic deficiencies may present with CI, including B12 deficiency or niacin deficiency. Hypothyroidism must be considered, especially in the presence of cold intolerance, dry skin, weight gain and constipation.

Table 2.

Differential diagnoses for people presenting with memory impairment, poor concentration and confusion.

Diagnosis	Features suggesting the diagnosis
Intracranial tumour	Progressive neurological deficitsSeizure
Delirium	Sudden onsetUsually intercurrent illness or change in circumstance May be hypoactive or hyperactive Reversible Cognition stabilises after resolution (not always to baseline)
Medication adverse effects	May coincide with initiation of medication
Depression	AnhedoniaLow moodSleep changesAppetite changesPoor concentration
Hypothyroidism	Weight gainDry skin/hairConstipationLow moodLethargy
Normal pressure hydrocephalus	New incontinenceConfusionGait disturbance
B12 deficiency	FatigueParaesthesiaGlossitisMood changesMemory/concentration lossMay have a history of malabsorption
Wernicke–Korsakoff syndrome (vitamin B1 deficiency)	History of alcohol excess and/or poor dietWernicke’s encephalopathy – nystagmus, confusion and ataxiaKorsakoff psychosis – confabulation, anterograde amnesia
HIV infection	ApathyPoor attention and concentrationHyperreflexiaSlow limb movementsHistory of HIV infection or risk factors
Neurosyphillis	Multiple manifestations which may mimic dementiaConsider in at-risk populations

Toxins should be considered, for example alcohol-induced Wernicke–Korsakoff syndrome, which presents with confused speech, nystagmus and a broad-based gait. Depression and psychiatric conditions must also be considered, particularly if the patient presents with anhedonia, flat affect, sleep disturbance and weight/appetite changes.

Progressive neurological deficit or seizures may provoke suspicion of an intracranial lesion, and this should be referred urgently on a 2-week wait pathway. New onset confusion of relatively short duration coupled with incontinence and a broad-based shuffling gait may suggest normal pressure hydrocephalus, which should prompt same-day referral for imaging and further investigation.

Functional neurocognitive disorders are increasing in frequency (Johnson et al., 2021). These should be considered if there is inconsistent impairment, an ability to perform tasks easily some of the time but struggling when it becomes the focus of attention, and if relatives/caregivers seem less concerned than the patient (Johnson et al., 2021).

Delirium

Delirium is one of the most important differential diagnoses when suspecting dementia. Delirium is a syndrome of acute change in mental status, characterised by fluctuating inattention and disturbance in cognition that develops over a short period of time. Delirium is common and affects as many as 50% of people over the age of 65 years who are admitted to hospital (Inouye et al., 2014). Table 3 (adapted from Fong et al. (2015)) outlines some of the key features in comparison with dementia. Of note, in delirium there is a reduction and fluctuation in attention and level of consciousness; domains which tend to remain intact until the advanced stages of dementia.

Table 3.

Key features of delirium and dementia.

Feature	Delirium	Dementia
Onset and duration	Abrupt onset, lasts hours to days (though can endure for weeks to months)	Insidious, progressive over months and years
Attention	Hallmark feature of reduced ability to focus, sustain, or shift attention	Normal except in severe dementia
Consciousness	Fluctuating, reduced level of consciousness and impaired orientation	Generally intact, except for Lewy body dementia when this may fluctuate
Speech	Incoherent and disorganised; distractible in conversation	Ordered, but development of anomia or aphasia is possible
Cause	Underlying medical condition, (infection, pain, constipation, metabolic disturbance), medication, change in environment, trauma	Underlying neurological process

Adapted from Fong et al. (2015).

The Confusion Assessment Method (CAM) is a useful diagnostic algorithm for identifying delirium. This is commonly used in hospitals, but can be applied within the community. It is based on four cardinal features of delirium: (i) acute onset and fluctuating course, (ii) inattention, (iii) disorganised thinking, and (iv) altered consciousness. The diagnosis of delirium by CAM requires the presence of features (i) and (ii) and either (iii) or (iv). The CAM has been demonstrated to have high levels of sensitivity, specificity and inter-relator reliability. The CAM Training Manual provides further guidance (Inouye et al., 1990).

Nevertheless, distinguishing between dementia and delirium can be difficult. Dementia and delirium have overlapping features and commonly coexist. Dementia is the leading risk factor for delirium, and delirium is an independent risk factor for subsequent development of dementia. Despite its classic presentation as an acute disturbance in cognition, delirium can be an enduring problem; studies show delirium can last for months or even years (Cole et al., 2003). Collateral history from a relative or caregiver is vitally important here. Sometimes, the presence of delirium is only established in retrospect when symptoms resolve after the treatment of intercurrent illness or removal of precipitating factors.

Management of suspected dementia

A shared decision with the patient, taking into account their concerns and preferences, should be made around management. If mild CI, rather than dementia, is suspected then discussing the diagnosis and arranging annual monitoring may be all that is required, with specialist referral organised if there is any deterioration. Healthy brain activities should be advised – socialising, management of cardiovascular risk factors, using hearing/visual aids, regular exercise and word games/puzzles may all help slow or prevent progression of CI (NICE, 2018).

Some patients may decline referral for formal diagnosis or further investigation; this could be for many reasons including fear or perceived stigma. Explore this with the patient and discuss the benefits of a diagnosis including advance care planning, the opportunity to start medication, benefit entitlements and support with respite care. Complexity may arise if family members want a diagnosis, but the patient does not; triadic consultation may be helpful here, exploring the different viewpoints and guiding to a consensus decision that is right for each individual patient.

Referral to specialist services

NICE guidance advises that referral to a specialist dementia diagnostic service (memory clinic or old-age psychiatry) should be made if reversible causes of cognitive decline (including delirium, depression, sensory impairment or CI from medicines associated with increased anti-cholinergic burden) have been investigated and dementia is still suspected (NICE, 2018). Even if the patient scores well on cognitive testing, if the diagnosis is clinically suspected, referral for further investigation should be made. The suspected diagnosis should be discussed sensitively, and the time given to ask questions.

Rapid decline in cognition or rapid worsening of symptoms, particularly in a younger person, should prompt consideration of urgent referral to neurological services rather than memory services (Falket al., 2018). Cerebrospinal fluid testing may be indicated for rarer causes of CI, such as Creutzfeldt–Jakob disease (NICE, 2018).

If referral to a memory clinic is being considered, investigation of reversible causes should be completed and delirium ruled out (NICE, 2018). Explain what will happen at the clinic, possible investigations, and the purpose of a referral. This usually will include a detailed history, examination and brain imaging including MRI and/or CT. Specialist imaging may be used in specific instances, e.g. if Lewy body dementia is suspected. The memory clinic team will aim to establish the diagnosis and clarify the dementia type.

After dementia diagnosis

Primary care teams play an important role after diagnosis of dementia. Supporting the patient and their families through the diagnosis and likely cognitive deterioration is important. Person-centred care and involvement of the multidisciplinary team is crucial. Physical health should also be monitored, as 70–80% of people diagnosed with dementia have at least two other chronic illnesses (NICE, 2018). Polypharmacy should be regularly reviewed, particularly medications with cholinergic burden.

Many organisations exist to support people with suspected or diagnosed dementia and their families. Dementia UK (www.dementiauk.org/) and The Alzheimer’s Society (www.alzheimers.org.uk/) are useful resources. Both provide helplines and face-to-face support. Dementia UK also has a network of specialist dementia nurses (‘Admiral Nurses’) who provide local support and helpline advice (www.dementiauk.org/wp-content/uploads/2021/06/DUKIL05_AdmiralNurse_Online.pdf).

Medication

Specialist treatments may be recommended by the memory clinic. These may include cognitive stimulation therapy (a range of discussions aimed at improving social or cognitive functioning) or group reminiscence therapy (using objects from daily life to stimulate memory) (NICE, 2018). Drug treatments may be suggested. NICE recommends drug treatments for cognitive symptoms should be initiated on the advice of a clinician with specialist skills, such as a psychiatrist, geriatrician, GP with special interest or neurologist. Acetylcholinesterase (AChE) inhibitors (donepezil, galantamine and rivastigmine) may be used as monotherapies to treat mild-moderate Alzheimer’s disease (NICE, 2018). These can be prescribed in primary care under shared care agreements, after initiation by a specialist. Side effects of these medications include agitation, diarrhoea, dizziness, fatigue and, rarely, bradycardia. Caution should be exercised when prescribing for people with respiratory conditions, cardiac conduction abnormalities or bradycardia (British National Formulary (BNF), 2021a) and an electrocardiogram should be considered prior to initiation. Once started, these medications should not be stopped abruptly, as this may lead to acute cognitive and behavioural decline (Minett et al., 2003).

Memantine, which is an N-methyl-D-aspartic acid receptor agonist, may be prescribed as monotherapy if AChE inhibitors are not tolerated; side effects include balance problems, constipation, hypertension, dizziness and dyspnoea. In renal impairment, the dose should be adjusted (BNF 2021b). If the person has established moderate-severe Alzheimer’s disease, dual therapy with memantine and an AChE inhibitor may be considered. These medications are also available for those with mixed vascular and Alzheimer’s dementia. In Lewy body dementia, donepezil or rivastigmine are recommended first line (NICE, 2018). People should be counselled about realistic treatment outcomes (NICE, 2018).

Advance care planning

Advance care planning (ACP) can be seen as an ongoing conversation between healthcare professionals and the patient: sharing decisions, clarifying wishes and communicating preferences regarding future medical care. Early and ongoing opportunities should be offered to discuss the benefits of planning ahead for people with dementia and their carers. ACP is critically important, particularly in dementia where people may lose the ability to effectively communicate preferences about their care as their disease advances. Evidence-based benefits of ACP include improving the bereavement experience of families and reducing hospital admissions (Wright et al., 2008).

ACP discussions may cover advance statements about the patient’s wishes, beliefs and values for future care, advance decisions to refuse treatment and resuscitation decisions. Preferred place of care and death should be discussed. If relevant, lasting power of attorney for health and welfare decisions should be established. People can be signposted to the dementia UK website for support and further information (www.dementiauk.org/get-support/legal-and-financial-information/lasting-power-of-attorney/). Starting these discussions early allows people the time to think about their wishes and provides them with an opportunity to discuss this with a GP over multiple consultations, fostering trust and continuity of care. Discussion should be ongoing, and at each review emphasise that any advance decisions can be changed (NICE, 2018).

Driving guidance

If a person is diagnosed with dementia, they must inform the Driver and Vehicle Licensing Agency (DVLA) immediately. For those with mild CI or suspected dementia, advice depends on whether they are likely to have impairment in driving from their symptoms. Practically speaking, if a diagnosis of dementia is being considered, then the threshold for ‘possible driving impairment’ will often be met, and advising people not to drive and to inform the DVLA to arrange further assessment may be the safest course of action. The DVLA handbook for medical professionals gives detailed information (DVLA, 2021).

Summary

The prevalence of dementia is increasing and GPs have an important role to play in the care of people with dementia. This article has discussed the importance of early diagnosis, which reduces uncertainty about symptoms, can provide an opportunity for medical treatments that may slow disease progression, and helps patients and their families to plan. We recommend regular medication reviews for older adults in primary care and de-prescribing of anti-cholinergic medications. Collateral informant history is important, as is clarifying the symptoms experienced. Cognitive testing using screening tools can be useful, but if people score well, dementia should still be suspected if there is a strong suggestion from the history. When dementia is suspected, patients should be referred to a memory clinic for a full assessment and review. Primary care teams are well placed to provide person-centred care for people diagnosed with dementia, which in many cases goes beyond usual medical care to involve signposting to relevant organisations, arranging social support and supporting families and carers.

Key points

Dementia should be suspected with a presentation of new onset cognitive changes which are progressive in nature and sufficient to affect daily functioning

Dementia usually presents in older people aged >65 years and age is the most significant risk factor

Collateral informant history from a friend, caregiver or relative is vital

Clinical examination may establish the presence of risk factors for dementia; signs elicited may point to an alternative diagnosis, medication review and investigations should be undertaken to rule out reversible causes of CI or identify red flags for other neurological/neurocognitive conditions requiring urgent investigation

Cognitive screening is indicated for those presenting with dementia symptoms; if no impairment is detected on screening, but clinical suspicion is high, referral to a memory clinic should still be completed

If dementia is suspected, referral to a specialist memory clinic is indicated for more in-depth cognitive testing and discussion of possible treatments

Footnotes

ORCID iD

Charlotte Morris

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