People with dementia who develop symptoms that cause them significant distress, or develop behaviour that challenges us (BtC), are offered an assessment at an early opportunity to establish generating and aggravating factors.

People living with dementia may develop symptoms that cause them distress, because of e.g., experiencing hallucinations or paranoid delusions. A person may also go on to develop behaviours which challenge those who care for them. There are care interventions and treatments that may reduce this distress as well as ways of managing this behaviour successfully. Seeking an assessment from your GP or dementia advisor as early as possible to identify the causes of the behaviours can help reduce their impact.
For extra information, evidence and best practice please scroll down to the bottom of the page.

National offerings

Age UK

Age UK is the country's leading charity dedicated to helping everyone make the most of later life. Providing advice, support, information, fundraising, local services
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year

Alzheimer’s Society

The Alzheimer’s Society provides reliable and up to date information to help you with every aspect of living with dementia.
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.

Dementia UK

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide Admiral Nurses, who work with family members and carers in all care settings along with a helpline for family members or carers who would welcome accessing advice and support.
Telephone: 0800 88 6678

Lewy Body Society

The Lewy Body Society is a charity whose mission is to fund research into Lewy body dementia and to raise awareness of the disease. The website provides information, support, resources and advice.
Telephone: 01942 914000

MSNAP Memory Assessment Service Standards

The Royal College of Psychiatrists have a national accreditation programme for Memory Services against key standards. The website outlines the standards and the process.

NICE Dementia Guidance

This guideline brings together all the research and evidence which covers assessment, diagnosis, treatment and support. It is for people at risk of developing dementia, people who are referred for assessment, people living with dementia as well as being for family and friends and health and social care staff and commissioners. It aims to improve care by making recommendations on standards people should expect to receive from their assessment, care and support as well as on training.
We have provided links to the NICE guideline for dementia and a further link is provided to guidance on how to delay or prevent the onset of dementia.
National Institute for Health and Clinical Excellence (NICE) NG16 (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset:
National Institute for Health and Clinical Excellence (NICE) (2019) Dementia: assessment, management and support for people living with dementia and their carers:

Social Care Institute for Clinical Excellence - End of Life Care Resources

When a person is living with advanced stages of dementia, all areas of human ability are severely compromised. They have to rely on others for social engagement, occupation and activities of daily living. This section looks at what it's like to live with advanced dementia, communication and the impact on carers.
Carers’ needs - End-of-life care and dementia:
Advanced Dementia:
End of life care - dying at home:


NICE Guidance:

"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, which may not manage the symptoms effectively. "Interventions to improve such behaviour or distress should be recorded in a care plan."

The dementia care pathway, full implementation guidance: "Poorly managed behavioural and psychological symptoms (which accompany dementia) may lead to increased distress, accelerated cognitive decline, inappropriate antipsychotic prescribing, unnecessary use of restraint and earlier admission to residential care."

British Psychological Society, Behaviours that challenge in dementia guidelines: "It's important to have a psychological understanding of the complex causes of behaviour that challenges (BtC) and related interventions to meet the needs of the person living with dementia. Central to the management of BtC is both ensuring that the needs of the person with dementia are met and resolving any unmet needs using individually formulated biopsychosocial approaches to intervention. Individually formulated case-specific approaches for BtC are the best method for intervening within both family and 24-hour care settings"

"Residents in care homes should have access to specialist dementia/mental health services for assessment and management of complex dementia needs, including management of mental health medications and behavioural and psychological symptoms of dementia (BPSD), such as depression, agitation, aggression, distress, and psychosis. This can be achieved through regular support from an integrated MDT. These specialist mental health and dementia staff can help train care home staff in managing BPSD and reducing inappropriate use of antipsychotics, and in ensuring appropriate use of the Mental Capacity Act 2005.

The Framework for Enhanced Health in Care Homes: "Care home staff should consider following the Newcastle Support Model and using tools such as ‘ABC’ (Antecedent, Behaviour, Consequence) charts to understand and manage behaviours that challenge."

Best Practice Resources

A guide to changes in behaviour – Alzheimer’s Society: -

Understanding memory changes in dementia:

Understanding sensory changes in dementia:

Fundamental needs in dementia:

Formulations in dementia care:

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