It’s been 15 years since the publication of the English and Welsh Mental Capacity Act (2005), and 13 since the accompanying MCA Code of Practice was published. The MCA was a landmark – the first piece of guidance that really recognised that people may have capacity despite having difficulties in communication and cognition. Many celebrated it as a bill of rights to support the decision making rights of those with disabilities such as dementia.
Before the MCA I had seen health and social care professionals declare people as globally lacking capacity based on a diagnosis. I saw assessments “done” in a few moments, just by looking at a patient. Fifteen years should be adequate to shift this type of practice for the better. Even so there are many health and social care clinicians, and researchers who remain unclear, and uninformed on their role in this area. Even the more informed often lack the confidence and the time, or fear litigation.
Yet I would argue that the process of consent is not so different from before, just more person centred. Being able to put the person at the centre of the decision making process because the law says we must, should be a way of freeing us from the old medical model of decision making. It is a powerful method of reducing the didactic institutionalised approach of days gone by and enabling people to participate in decisions about themselves. For even people who are unable to speak may be able to indicate a choice through alternative means, those who cannot understand a complex medical explanation may be able to understand a written explanation complimented by pictures and bullet points repeatedly presented to support their memory. Those with cognitive impairment may be able to gain more understanding and insight through repeated presentation, visiting a place or seeing a real life example.
Furthermore, a person who lacks capacity may still be able to communicate their preference. Their beliefs and values should be heard. This is particularly important for people who have dementia. People with dementia will more often than not be aware that as their condition progresses that their ability to consent to healthcare decisions will deteriorate. They will find it more and more difficult to make a decision. Donating decision making to a loved one is one solution. Making decisions in advance of this time is also useful. And as dementia progresses there may be times when people’s decision making fluctuates. There are many things that people in the person’s environment can do to maximise the person’s ability to participate in decision making. Here are some top tips for researchers working with people with dementia:
- The average reading age in the UK is around 13 years, this means any information or consent sheets or other written material needs to be written to meet this need. The flesch-kincaid level tool on word can help you check how complex your content it. You can usually find this with the spelling and grammar check function.
- A person with dementia needs information provided in an accessible way to help them make a decision, so do their friends and relatives, none of whom are researchers. This means you need to use the plainest possible English. We would suggest not only providing a written information sheet but discussing and explaining something verbally, and even drawing pictures or doing a demonstration to help.
- People with dementia need time to make a decision and may change their mind, this doesn’t mean they lack capacity just that they are thinking it over and weighing it up.
- A person with dementia who has capacity is allowed to make unwise decisions just like you and I, even if they are risky. This may include participating in a study or choosing not to.
- Just because you do not agree with the decision, doesn’t mean they lack capacity.
- If somebody lack capacity this doesn’t mean that doing research is not in their best interest, we need more research with this group otherwise we cannot develop interventions and medicine in this area.
- When a decision is made in a person’s best interest – this may not be in the interests of the researcher
- Consenting to participate in research is very important and researchers should spend time and energy in developing the protocol and resources they will use together with users by experience. This can actually be extremely useful, and provide you with innovative ideas about how to communicate your research.
Happy consenting for 2020!
Anna Volkmer is a Speech and Language Therapist and NIHR Doctoral Research Fellow working in Language and Cognition, Department of Psychology and Language Sciences, University College London. Anna is researching Speech and language therapy interventions in language led dementia and was once voted scariest speech and language therapist (even her children agree).