Quality statement 6: Managing distress
People with dementia have a structured assessment before starting non-pharmacological or pharmacological treatment for distress. [2010, updated 2019]
People with dementia can become distressed, which can lead to symptoms such as increased aggression, anxiety, apathy, agitation, depression, delusions, hallucinations and sleep disturbances. But these behaviours may have other causes, including pain, delirium or inappropriate care. Understanding the causes of these behaviours and addressing them before offering treatment can prevent things getting worse and prevent any harm. It can also avoid the use of unnecessary interventions, such as antipsychotic medication and antidepressants, which may not manage the symptoms effectively.
Evidence of local arrangements to ensure that people with dementia have a structured assessment before starting non-pharmacological or pharmacological treatment for distress.
Data source: Local data collection, for example, from local protocols.
Proportion of people with dementia who have started non-pharmacological or pharmacological treatment for distress who had a structured assessment before starting treatment.
Numerator – the number in the denominator who had a structured assessment before starting treatment for distress.
Denominator – the number of people with dementia who have started non-pharmacological or pharmacological treatment for distress.
Data source: Local data collection, for example, local audit of patient records.
a) Antipsychotic prescribing rates for people with dementia.
Data source: NHS Digital publishes data on prescribing of antipsychotic medication in its recorded dementia diagnoses data collection.
b) Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.
Service providers (such as community mental health services, secondary care services, general practices, local authorities and community care providers) ensure that professionals carry out a structured assessment to check for and address any clinical or environmental causes of distress before starting any treatment for distress for people with dementia.
Health and social care professionals (such as occupational therapists, community psychiatric nurses, psychiatrists, community matrons, clinical psychologists, neurologists, geriatricians, social workers and GPs) carry out a structured assessment for people with dementia showing signs of distress, such as agitation or aggression, to explore reasons for the distress before starting treatment. They involve family members or carers in the assessment if needed. As part of the assessment, they check for any clinical or environmental causes of distress, for example, pain, discomfort, delirium, inappropriate care, infection, boredom, noise or temperature, using assessment tools and involving other professionals as needed. They decide how to address any identified causes of distress, and whether another professional or specialist service needs to be involved.
Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that services have systems in place to carry out a structured assessment for people with dementia to explore reasons for distress before starting treatment. The assessment should include checking for and addressing any clinical or environmental causes of distress, for example, pain, delirium or inappropriate care.
People with dementia have checks to see if there are any reasons why they are distressed and if so, what can be done. Reasons might include pain, infection or not having the right care. Professionals address any of these issues before starting treatment for distress.
Family members and carers of people with dementia are involved in checks to see if something is causing the person's distress, if needed. Their involvement might be needed if, for example, the person with dementia lacks capacity, or needs support in communicating.
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.7.1
A multifactorial assessment to explore reasons for distress by checking for clinical causes, environmental impacts, medication issues, communication issues and sensory issues, using appropriate assessment tools.
[Expert opinion and NICE's guideline on dementia, recommendation 1.7.1]
Non-pharmacological treatment might include psychosocial and environmental interventions, and personalised activities to promote engagement, pleasure and interest. These might include calming and distracting an agitated person, environmental management (for example, adjusting temperature, noise and lighting) and activities like arts and crafts, movement to music and accompanied walks. In addition, anxiety and depression may be treated using cognitive behavioural therapy, multisensory stimulation, relaxation and animal-assisted therapies. Pharmacological interventions might include antipsychotics, antidepressants and pain killers.
[Expert opinion and NICE's guideline on dementia, recommendations 1.7.2, 1.7.3 and 1.7.9 and full guideline]
People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs. They should also establish the person's current level of understanding; and whether they would like a person important to them to be present when discussing their distress.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that, if needed, other ways of communicating (for example, visual aids or simplified text) should be used.