In order to understand an individual’s behaviours, we need to understand the individual. Human behaviour or understandable psychological distress itself is not an illness, but if a change occurs in someone’s behaviour or mental state with a diagnosis of dementia, the umbrella term ‘behavioural and psychological symptoms of dementia’ or ‘BPSD’ is often used. BPSD has been accepted to describe symptoms of disturbed perception, thought content, mood or actions that frequently occur in people with dementia. Whilst this might be a convenient short hand, BPSD must not be mistaken for another diagnosis on top of a dementia. Instead, it is frequently a communication that needs to be understood.

At some stage in their illness, up to 90% of people with dementia will experience behavioural or psychological challenges. Symptoms can arise at any stage of a person’s illness, and multiple symptoms often occur at the same time and on a recurring basis.

Importantly, nearly two-thirds of people with dementia living in care homes experience these symptoms. The most obvious to those looking after a resident are behaviours such as agitation, aggression, shouting and wandering, but there can also be personal, internal experiences such as depression, delusions or hallucinations which are not so noticeable, but are equally as important (Box 8.1).

Behavioural and psychological changes can affect not only a person with dementia but also everyone involved in their care and treatment.

The symptoms can cause distress to the individual, and when a person retains a certain amount of insight into their losses there is the potential for more feelings of desperation, anger and frustration. It is important to add that not all behavioural symptoms cause distress to the person with dementia, but rather cause ‘difficulties’ for those around them – for example, repetitive shouting, walking without a purpose or displaying attachment behaviour, and therefore should not be considered ‘symptoms that need treatment’, rather understanding. Sexual behaviour is another example. It may be unacceptable to other residents in a care setting, but not to the individual. It is in a person’s best interests therefore to acknowledge this behaviour, and plan care appropriately.

However, the emergence of behavioural and psychological features add considerably to the anxieties experienced by family and professional carers, who understandably can find the changes in their relative very difficult to adjust to – especially if those behaviours put the individual or others at risk. A sense that the essence of their loved one has been lost prevails, as behaviours exhibited can be radically different to pre-morbid behaviour and personality and out of character.

Indeed, the frequency of behavioural disturbances has been identified as the strongest predictor of caregiver stress and plays a significant role in the decision to institutionalise a person with dementia.

Many people with dementia experiencing behavioural and psychological change do not have the mental capacity to make informed decisions about their treatment and management. Management not only includes medication for physical or mental health issues, but general hands-on care such as washing, dressing, nutritional needs and end-of-life issues.

Health care professionals are often in the best position to assess capacity for certain decisions under the Mental Capacity Act 2005 (Box 8.2, see Chapter 12 for more details). Capacity should be presumed, until proven otherwise. A capacity assessment is important in order to find out if persons with dementia and BPSD have an understanding of the risks involved with their behaviour, for example, not accepting assistance with hands-on personal care, refusal of medication or not accepting that their care needs now require them to be residents in a care-home setting.

If a person is in a care home, it is also the care home’s responsibility to construct a clear individualised care plan including outlining a person’s care needs, which can include discussions and shared-care decisions regarding basic human needs such as maintaining cleanliness, nutrition and dignity. All decisions should be made in the person’s best interests, include any Advance Statement, and involve relatives/informal carers, especially if an LPA Lasting Power of Attorney or COP Court of Protection is held.

There will be times when decisions about deprivation of liberty need to be assessed. For example, a person may be agitated, anxious and constantly trying to abscond from a care environment to return to their home or childhood home. Under such circumstances, an application can be made to the local authority for a Deprivation of Liberty Safeguards (DoLS) assessment so that treatment and care can be provided in the person’s best interests.

The assessment and management of behavioural and psychological symptoms in an individual with dementia is a dynamic and continuous process of proactively assessing for potential problems, understanding patterns of symptoms and deciding on the most appropriate course of action to take. Quite often, elements of this process will occur in conjunction with each other.

The Alzheimer’s Society has produced a best practice guide for health and social care professionals who are involved in the treatment and care of people with BPSD. The recommended approach involves the process of actively working to ‘prevent’ the emergence or escalation of BPSD, adopting ‘watchful waiting’ if this does occur, and only after this considering ‘specific interventions’.

A number of simple approaches that can help reduce the chance of BPSD developing are recommended. This information will help inform an effective care plan for the person with dementia (see Box 8.3).