(A note before I begin this blog: You should not consider anything written in this blog as legal advice for you or anyone you care for).
I’ve long thought about writing a blog on mental capacity for people with dementia, but two factors have put me off. Firstly, mental capacity is not an area of expertise for me. Secondly, most people (apart from those who are experts in this field) switch off at the mere mention of it – I know, I’ve been one of those individuals who have glazed over.
But bear with me, and this blog post. I want to explore three of the five principles of the Mental Capacity Act very much as a lay person, a former carer to my dad, and a person who believes strongly in the abilities of people with dementia to retain control over their lives.
For those not familiar with the five principles of the Mental Capacity Act, here they are:
1) A person must be assumed to have capacity unless it is established that they lack capacity
2) A person is not to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success
3) A person is not to be treated as unable to make a decision merely because he/she makes an unwise decision
4) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests
5) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action
Principle number one intrigues me from the outset, partly because despite the Mental Capacity Act having been law since 2005, most people who aren’t aware of the principles of it assume that the moment a person is diagnosed with dementia they do not have capacity. The old phrase, “They’ve lost their marbles,” springs to mind.
What I would say is that in my experience, not just with my dad but through meeting many other people who are living with dementia, mental capacity isn’t a one-size-fits-all. Each individual retains their own level of capacity at any given point in their life with their type of dementia, and another person with exactly the same type of dementia who is believed to be at the same ‘stage’ (I wrote about ‘stages’ here) may have a very different level of capacity. Capacity is, therefore, completely personal.
Moreover, capacity is often a fluctuating state. So, for a person with dementia who has suddenly contracted an infection, their own usual capacity may be temporarily diminished, but when the infection has cleared, they may return to the same level of capacity that they had before. Even having a sleepless night might render a person to temporarily have a reduced level of capacity – as a mum to a 14 month old, I can certainly appreciate the effect of sleeplessness, and I am an otherwise healthy person who isn’t living with dementia.
Other factors can play havoc with capacity too – for example, a person with vascular dementia who has had a new TIA (Transient Ischaemic Attack), a person with chronic pain (which may be undiagnosed), a person who’s had a fall that’s shaken them up, or someone with poor levels of nutrition or hydration. For all these reasons, and many more, it is vital that it’s never assumed that a person lacks capacity today just because they (maybe) did yesterday.
The second principle regarding practicable steps is also an interesting one. Again from experience, I know that the idea of practicable steps varies hugely depending upon who is trying to ascertain if the person has capacity. It’s very common to cut corners here, and simple steps to improve the person’s ability to demonstrate their mental capacity can be overlooked. For example:
- Not considering if the person needs to be wearing hearing aids or glasses in order to communicate more effectively
- Whether the environment is appropriate for the person (Too busy or too noisy)
- Whether the person is comfortable (free from pain, not hungry or thirsty, no illness)
- Whether the person has had the medication that they need (or indeed if medication is affecting their abilities through undesired side-effects)
- Whether the right language is being used (is English the person’s first language?)
- Whether the assessor has the right abilities (eg: To speak clearly and form a trusting relationship with the person who has dementia).
Finally, the third principle fascinates me, since the whole idea of an ‘unwise decision’ takes us into the territory of risk taking, something that I’ve written about in the past as being an area of dementia care and support that is often unduly and unfairly restrictive. Risk aversion is a huge issue, sometimes for the right reasons if someone’s life is in danger, but often it’s far more low level and about creating circumstances that work well for those providing care and support but considerably less well for the person with dementia.
That last point, more than any other, is probably behind why I’ve come to see the Mental Capacity Act, much like the Human Rights Act (which is gathering increasing interest and alignment with best practice in dementia care and support – see the work of Dementia Alliance International) as more than just dry legislation that isn’t applicable to the practical world of dementia care and support.
Anything that helps support a person with dementia to maximise what they can do, rather than what they can’t, is to be celebrated. If you do nothing more with the Mental Capacity Act than familiarise yourself with and practice its five principles, you will have gone some way to enhancing your understanding of people with dementia and refocusing your approach to providing care and support in a way that puts the person front and centre.
Until next time…