Abstract
Behavioural and psychological symptoms of dementia (BPSD) encompass the wide range of non-cognitive symptoms that affect over 90% of those with dementia. These symptoms include aggression, agitation, psychosis and social disinhibition, and can represent unmet needs in patients that may otherwise be unable to express themselves. Each person with dementia can have any combination of these symptoms – to varying severity – and they can fluctuate throughout the disease course. This article focuses on BPSD, including its common causes, patient assessment within primary care and key aspects of management.
Clinical case scenario
You receive a phone call from Lydia – the daughter of William – a 79-year-old man with Lewy body dementia. You know them both well and made William’s initial referral to the memory clinic 4 years previously. Two months ago, William’s wife passed away suddenly. William had been an inpatient in another hospital at the time, admitted with infected leg ulcers. He had been discharged from hospital to intermediary care, where he required one-to-one care, due to being awake most nights and constantly getting up unaided to use the commode. He was subsequently discharged to a care home and has been there for the last month. The care home is currently under-staffed, and they are finding him hard to manage. Last night, he walked into another resident’s room and was found standing at the end of their bed. During the conversation, Lydia became extremely upset and broke down in tears. She feels responsible for ‘putting him into the home’ and is insistent that he needs medication to ‘calm him down’ because she does not think it is safe for him to be walking about without his Zimmer frame. She asks why this happens at night, because during the day he spends most of the time sitting in his chair staring out of the window.
Dementia: A brief overview
It is widely recognised that the prevalence of dementia is increasing in the UK, with statistics suggesting a prevalence of 7.1% in those aged over 65 years (National Institute for Health and Care Excellence (NICE), 2019). Dementia itself is an umbrella term with many causes; the three most common of which are Alzheimer’s disease, vascular dementia and mixed dementia, respectively (see Fig. 1). Regardless of the underlying cause, dementia is a syndrome with the following key features:
Cognitive deterioration Behavioural and psychological problems (the ‘non-cognitive’ symptoms) Functional impairment Prevalence of dementia subtypes in the UK, 2014.

This article focuses on the non-cognitive symptoms, which can be some of the most challenging and potentially distressing aspects of the condition. The presence of these non-cognitive symptoms can create a significant negative impact on both the patient and their caregivers, resulting in poor patient health and hospital admission (NICE, 2019), declining cognition (Tible et al., 2017), increasing healthcare costs (Kales et al., 2015) and a higher risk of institutionalisation (Toot et al., 2017). The development of non-cognitive symptoms is also strongly linked to psychological distress for the caregiver (Dow and Robinson, 2014).
What are behavioural and psychological symptoms of dementia?
Behavioural and psychological symptoms of dementia.
Some symptoms are more common in certain types of dementia. For example, depression is more common in vascular dementia, Lewy body dementia tends to cause more hallucinations (Kales et al., 2015) and sexual disinhibition is seen more frequently in frontotemporal dementia (Tible et al., 2017).
How prevalent is BPSD?
Over 90% of people with dementia will be affected by at least one of these behavioural or psychological symptoms (Kales et al., 2015), and they can occur at any stage during the illness (Banerjee, 2009). The symptoms can be episodic in nature, fluctuating over time and varying in severity (Kales et al., 2015). Figure 2 shows examples of some of the typical symptoms for each severity of BPSD ranging from mild through to extreme. There are higher rates of BPSD in specialist 24-hour care homes (Karim et al., 2009).
Prevalence of BPSD based on severity.
The GP assessment
Assessment of the patient with BPSD.
Take a medical and psychiatric history, ideally from both the patient and caregivers. Details of the history should include, but are not limited to, the behaviours being displayed and their duration, and the events leading up to the behaviour. There may be clear triggers, e.g. behaviours occurring when the patient is being washed (Cawley and Swarbrick, 2013). Review co-morbidities that may be contributing, such as joint pain from osteoarthritis. Explore whether there is any past or present psychosis, depression or anxiety. Consider the environment and any changes to it, e.g. has the patient recently moved rooms if in a nursing home?
Examination is as per clinical judgement, although take care not to miss pressure sores and ulceration, which can be a source of pain. Pain is one of the most common causes of BPSD (Alzheimer’s Society) and is thought to be under-recognised in those with dementia, in part due to communication difficulties. Various tools, such as the Abbey Pain Scale, have been used to facilitate the detection of pain in such patients (O’Hare et al., 2009). Discomfort can also precipitate behavioural change, for example in a patient that is incontinent (Cawley and Swarbrick, 2013).
Sensory disturbances, such as impaired hearing and eyesight, can also lead to BPSD, particularly delusions (Tible et al., 2017). If clinically indicated, otoscopy may be required, and ensuring patients have up-to-date hearing and sight checks. Ensure that glasses or hearing aids are clean and being worn if needed. Patients with dementia may be vulnerable, always be alert to the possibility of abuse or neglect as a cause for behavioural change (Alzheimer’s Society).
Dependent upon the history and examination, basic investigations may be performed, including a mid-stream urine sample. You may wish to take blood tests similar to that of a ‘confusion screen’: Full blood count, urea and electrolytes, liver function tests, glucose, thyroid function tests, vitamin B12 and folate.
Polypharmacy is a common issue in the elderly. Medication side effects and interactions can be precipitants of BPSD. Therefore, a medication review should be undertaken, looking particularly for drugs that can cause delirium and behavioural changes, such as anticholinergics (Karim et al., 2009).
Other aetiology
The GP should rule out organic causes as outlined above before other causes can be considered. Other causes can be broadly divided into patient factors and external factors (Kales et al., 2015). Often, the precipitants of BPSD are multifactorial.
Patient factors
One theory suggests that unmet needs lead to BPSD: these can be physical, social, psychological, or emotional. Examples include boredom, loneliness, hunger and thirst (Karim et al., 2009; Tible et al., 2017). As dementia patients can have difficulty expressing their needs verbally, they may behave differently as a way of communicating these needs. Centrally, the neurodegenerative processes of dementia itself can disrupt neurocircuitry and neurotransmission, changing the way the person interacts with people and their environment (Dow and Robinson, 2014; Tible et al., 2017). Pre-dementia personality has been considered as a factor in the development of BPSD, e.g. patients who were aggressive before dementia onset may be more likely to develop BPSD, although there is inconclusive evidence for this association (Tible et al., 2017).
External factors
In the later stages of dementia, functional impairment and cognitive deficits mean that patients are dependent upon others for their basic needs. Relatives often take on a caregiver role. Stress and depression can occur in caregivers, which can potentially trigger symptoms in patients. Negative reactions to behaviours, such as shouting at the person with dementia, are thought to worsen behavioural symptoms (Kales et al., 2015).
Environmental factors can lead to BPSD; some patients with dementia have difficulty processing their environment. This means they may become easily frustrated and stressed, eventually leading to agitation and anxiety. A lack or change in routine, or an unfamiliar physical environment, can precipitate this (Kales et al., 2015). Social factors, such as over or under-stimulation can play a role. Examples include an excessively noisy environment or social isolation (Karim et al., 2009).
BPSD in general practice
The high prevalence and progressive nature of dementia increase the probability of GPs being asked to review patients with behavioural problems in the community, particularly in the care home setting. The role of the GP (see Fig. 3) includes recognising and managing these potentially distressing features, while offering advice and support to the patient and their caregivers.
General Practice role in managing BPSD.
Recognising BPSD
Caregivers and relatives may be able to provide a collateral history, detailing changes in the person’s behaviour, as well as giving insight into the patient’s pre-morbid personality. This collateral history is important, as the person with dementia may lack insight into their symptoms. Formal assessment tools such as the Neuropsychiatric Index and Behavioural Pathology in Alzheimer’s Disease Rating Scale have been developed (Tible et al., 2017).
The most common types of BPSD are thought to be apathy, depression, agitation and anxiety (Steinburg et al., 2008). Apathy is defined as a lack of motivation and loss of interest in day-to-day activities. It may manifest as patients spending most of the day in bed or sitting (Tible et al., 2017). Depression can be particularly difficult to detect in people with dementia, in part due to the potential difficulty in patients communicating symptoms. In addition, symptoms in dementia may present similarly to symptoms associated with depression, such as poor memory and sleep disturbance. The Cornell Score for Depression in Dementia can be used as a screening tool for patients with dementia and suspected depression (Funnel, 2010). Agitation is a broad term, which can manifest as patients exhibiting behaviours such as pacing, screaming, being easily upset, dressing/undressing, crying out and rejecting care. Anxiety may present as worrying or shadowing of the caregiver (Kales et al., 2015). Delusions commonly seen in BPSD include the belief that people are stealing their possessions or that they are in danger (Tible et al., 2017). ‘Sundowning’ is a common phenomenon, whereby individuals have worsening of symptoms later in the day or at night (Khachiyants et al., 2011).
Carer support
Carers needs should be considered and offering to arrange an appointment to discuss support may be welcomed. Providing written information can be helpful: the Alzheimer’s Society website has resources for carers including explanations and advice on managing behaviours, and coping strategies. It also has an online forum, Dementia Talking Point. Other organisations include Carers Direct (has a 7 day a week helpline), Dementia Carers Count (runs courses for carers) and Dementia UK (has a support helpline staffed by Admiral nurses with expertise in dementia). Referral to social services for formal carer assessment can be undertaken as per the Carers Act 2014, and more intensive intervention such as local support groups or psychosocial therapies may be required if the caregiver is distressed (Brechin et al., 2013).
Multidisciplinary team approach
The GP is the constant during the patients journey with dementia (Goodwin et al., 2010).
A key role in general practice is ensuring the patient can be cared for in the community for as long as possible. To facilitate this, shared care with specialist services and communication with social care and the voluntary sector is recommended (Goodwin et al., 2010). Specialist services, such as community mental health teams, can offer interventions for those with behaviour that challenges (National Collaborating Centre for Mental Health, 2018).
Difficulties in general practice
BPSD can be challenging for GPs. A systematic review of qualitative studies regarding GPs perspectives on BPSD suggested that reviewing a patient with challenging behavioural symptoms was thought to be time-intensive and stressful. They also felt there was a lack of access to multidisciplinary team members to enable them to appropriately manage the condition. In the same review, GPs described feeling pressured by nursing home staff to prescribe antipsychotics (Jennings et al., 2018). Many of the interventions to reduce BPSD are reliant upon the caregiver delivering them, which can be a barrier in understaffed homes (Kales et al., 2015; Jennings et al., 2018). Often, care provided to individuals with BPSD is reactive, with referrals made when in crisis (NICE and SCIE, 2007). Early discussion with patients and their carers at diagnosis, as well as regular dementia reviews, could shift the management of BPSD to a more proactive approach (Goodwin et al., 2010).
Management principles
If a treatable cause is found, this should be managed appropriately, e.g. antibiotics for infection. If no underlying treatable cause is found despite thorough assessment, then various interventions can be used in the management of BPSD. Importantly, the main principle is to avoid the use of drugs, and instead focus on non-drug interventions for the patient and their caregiver. The exception to this is in an emergency, whereby the patient or others are at risk of harm (Kales et al., 2015). However, it should be highlighted that most patients will demonstrate resolution of their symptoms within a 4-week period without medical intervention (Alzheimer’s Society). A 2009 UK government report entitled ‘Time for Action’ described the overuse of antipsychotics in dementia and called for a reduction in antipsychotic prescribing for this group of patients. The report suggested that two thirds of prescriptions would not have been necessary if appropriate support was available (Banerjee, 2009).
Unfortunately, the interventions and therapies that can be delivered are dependent upon local avaliability. It is, therefore, important to find out what services are avaliable in your area, including daycare facilities. This section focuses on both non-pharmacological and pharmacological therapies that can be used in the management of BPSD.
Non-pharmacological
Non-pharmacological approaches should be used first line in the management of BPSD (NICE, 2019). See Fig. 4 for an overview of these approaches. In a 2018 systematic review, non-pharmacological interventions were not associated with any adverse events; this is a clear advantage over pharmacological methods (Dyer et al., 2018). After excluding acute physical or medical problems: it is advised that 4 weeks of monitoring symptoms with continuing assessment of the patient is undertaken, instigating simple non-pharmacological interventions initially (Corbett et al., 2012). Most of the symptoms of BPSD will have resolved in this 4-week period (Alzheimer’s Society). Mild-to-moderate symptoms may be managed by liaising with relatives and carers about the patient (Corbett et al., 2012), asking them to record behaviours. Best practice guidance suggests the development of a clinical care plan that includes information regarding the person’s needs, abilities, and interests. During this time, simple interventions, such as removing suspected triggers, positive social interaction and creative therapies can be undertaken (Alzheimer’s Society). Understanding a person’s life story and significant life events may provide context to the symptoms, e.g. a person that was highly active may walk about a lot (Cawley and Swarbrick, 2013). Other important information includes the patients’ beliefs, and their spiritual and cultural identity (NICE and SCIE, 2007).
Non-pharmacological management of BPSD.
In continuing BPSD, structured psychosocial activities can be implemented; these focus on providing patient-centred stimulation. Where possible, these activities should be personalised to the patients’ interests, to encourage engagement and enjoyment. NICE recommends the following: aromatherapy; multisensory stimulation; therapeutic use of music and/or dancing; animal-assisted therapy; and massage. Reminiscence therapy can be used for depression and anxiety (NICE, 2019).
Those with more persistent and challenging symptoms may benefit from referral to a specialist such as a clinical psychologist, for behavioural intervention. For example, functional analysis-based interventions involve developing an understanding of the meaning behind the person’s behaviours (Dyer et al., 2018). They often use the ABC method, whereby a record is kept of the events leading up to the behaviour (A – antecedent), the behaviour itself (B – behaviour) and what happened as a result of the behaviour (C – consequences) (Brechin et al., 2013). The objective is to create an individualised strategy for managing the person’s specific behaviour, rather than a generic approach (Dyer et al., 2018). Statistically significant improvements in global BPSD have been demonstrated in recent studies of behavioural interventions. However, there is uncertainty as to whether they have significant long-term effect (Dyer et al., 2018) and an older systematic review failed to show any high-level evidence supporting their efficacy (NICE and SCIE, 2007).
Some services provide face-to-face training and mentoring of members of staff who care for people with dementia (NICE and SCIE, 2007). This can involve training in managing behaviours and person-centred care. Staff members can also be trained in Dementia Care Mapping. This is a method of observing a patient during an activity, which can allow members of staff to better understand the experience of the patient with dementia (NICE and SCIE, 2007).
Pharmacological
Symptom-specific pharmacological options for BPSD.
Source of drug dosages: Murray et al. (2019) and NICE (2019).
Antipsychotics
Antipsychotic medication should be reserved for patients that are at risk of harming themselves or others, or if they are having hallucinations/delusions that are causing them distress (NICE, 2018). The only licenced antipsychotic for use in dementia in the UK is risperidone, although you may encounter old age specialists prescribing other antipsychotics off label after thorough assessment (NICE, 2019). In 2004, the UK Medicines and Healthcare Regulatory Agency advised that risperidone and olanzapine increase the risk of stroke (Banerjee, 2009) and a 2005 analysis concluded that antipsychotics were associated with an increase in mortality when used in older people with dementia (Schneider et al., 2005). This class of medication can also have an adverse effect on cognition (NICE and SCIE, 2007) and can worsen the motor symptoms of Lewy body dementia and Parkinson’s dementia (NICE, 2018).
Some patients will derive benefit from being prescribed an antipsychotic. If it is decided to use antipsychotic medications, they should be prescribed by a specialist (NICE, 2019). The main principle is to ‘start low and go slow’, using the lowest effective dose for the shortest duration possible (Murray et al., 2019). A clear review date should be set by secondary care when prescribing antipsychotic medications and the drug should be discontinued if there has been no benefit. Generally, this review should be every 6 weeks (NICE, 2018).
Other medications
Other classes of medications that have been considered are:
Analgesics Anti-dementia drugs Selective serotonin reuptake inhibitors (SSRIs) and other antidepressants Mood stabilisers
In patients with new behavioural changes, a trial of analgesia, e.g. paracetamol, may be beneficial even in those not obviously in pain. Regular assessment should be undertaken, monitoring effect (O’Hare et al., 2009). Regarding specific symptoms, trazadone is a sedating antidepressant that can be used for agitation. If either depression or anxiety is suspected, mirtazapine or SSRIs, e.g. low-dose sertraline, can be used (Murray et al., 2019).
There is some evidence that anti-dementia drugs can provide a small, but significant, benefit in BPSD in Alzheimer’s disease (Corbett et al., 2012). The two main anti-dementia drug classes are acetylcholinesterase inhibitors (donepezil, rivastigmine, galantamine) and NMDA antagonists (memantine). For BPSD, they are generally used if antipsychotics are inappropriate or have not provided good effect (NICE, 2019). Mood stabilisers such as carbamazepine and sodium valproate have been suggested for off-label use in aggression and agitation. There is a limited evidence base for carbamazepine (NICE, 2015a) and a recent Cochrane review found that valproate was probably ineffective in the management of agitation in dementia (Baillon et al., 2018).
Urgent treatment and rapid tranquilisation
The interventions discussed above relate to non-urgent treatment. If a patient becomes very distressed, violent, aggressive or extremely agitated, seek advice from old age psychiatry, a geriatrician or your local community mental health team. In some circumstances, the patient may require admission to hospital and may need to be detained under the Mental Health Act (1983) (Alzheimer’s Society). In a care home, staff should be trained in how to manage violence, aggression and extreme agitation. Review the care plan, move the person to a quiet environment and attempt de-escalation techniques (NICE, 2019). Off-label lorazepam or haloperidol have been suggested for the immediate management of an acute severe episode and should only be given on the advice of a specialist, with the aim being to calm the patient and avoid sedating them (NICE, 2019). Oral medication should be offered in the first instance. Examples of oral dosages for lorazepam can be found in Table 1. Of note, haloperidol should not be used in patients with Lewy body dementia or those with a cardiac history including bradycardia, QT prolongation and certain arrhythmias (NICE, 2019). The term ‘rapid tranquilisation’ is defined as the use of parenteral (usually intramuscular) medication for use in acute distress and should only be used if oral medication is not possible (NICE, 2015b). A patient receiving intramuscular medication for this purpose will need to be closely monitored afterwards, and therefore, will require hospital admission.
KEY POINTS
Behavioural and psychological symptoms affect 90% of patients with dementia A thorough clinical assessment by the GP should be undertaken to rule out organic causes of BPSD BPSD may resolve spontaneously without medical intervention Non-pharmacological treatments are first line Antipsychotic medication should only be used if the patient is at risk of harm to themselves or others, or if the symptoms are causing severe distress If a patient becomes very distressed, violent, aggressive or extremely agitated, seek advice from old age psychiatry, a geriatrician or your local community mental health team
Footnotes
Acknowledgment
We would like to thank Dr Rabia Aftab for her help with the writing of this article under the InnovAiT ‘buddy’ scheme.
