Dr Catherine Pennington is a Senior Clinical Research Fellow at the Centre for Dementia Prevention, University of Edinburgh, and honorary Clinical Lecturer at the University of Bristol ReMemBr Group. In the accompanying article she reviews different tools for assessing decision making capacity in people with dementia.
Dementia is one of the greatest health challenges of our time. People with dementia experience changes to their ability to understand, evaluate and retain information, and may have problems expressing and remembering their decisions. These changes all affect whether or not someone has the mental capacity to make their own decisions, but we should not automatically assume that dementia equals a loss of capacity. Many people with mild or moderate dementia will still have the ability to make informed choices, particularly when information is given in an appropriate format. This could mean simplifying the language used, repeating information, and using clearly written, short documents.
The importance of supporting the rights of people living with dementia is increasingly recognised, and key to this is respecting the wishes and decisions of the individual. It is therefore vital that we are able to accurately assess a person’s ability to make informed choices. This allows us to support the greatest level of autonomy possible, and also identify and protect people who have lost the ability to make or communicate their own decisions. Assessing mental capacity can be a daunting task for both health care professionals and loved ones, particularly as the legal definition of capacity varies between different countries. Whilst the different UK nations have different legal criteria for mental capacity, they have four key elements in common. In order to have mental capacity, an adult must be able to:
Understand relevant information
Be able to weigh up the options
Remember the information long enough to make a decision
Be able to communicate their choice
(Online guides to legislation available at: England and Wales ; Scotland; N.Ireland).
Multiple different structured tools have been developed to aid in the assessment of mental capacity. Some of these tools are aimed at researchers investigating the cognitive building blocks of decision making, whilst others are designed for use with patients with specific medical conditions. Some take as little as 15 minutes and can be administered with minimal training, whilst others take an hour or more and should only be used by a trained professional. Some are more stringent than UK law requires, whilst others are not stringent enough.
The article reviews the pros and cons of the different tools available, alongside cultural and neuropsychological aspects of decision making. Altered mental capacity can affect not only adults with dementia, but also those with learning difficulties, acquired brain injury or mental health disorders. Health care professionals working with these groups should familiarise themselves with their local legal requirements, seek out training on the bedside assessment of capacity, and consider using one of these structured tools to assist in the thorough evaluation of their patients’ mental capacity.
Read the Age and Ageing paper Tools for testing decision-making capacity in dementia