Dementia does not necessarily mean a lack of capacity, but it might.  It all depends of what the decision is being made and when it needs to be made.

There can often be an assumption that if the person has a diagnosis of dementia or if undiagnosed, dementia is suspected, then the person lacks capacity.  At times, this can come from a strong sense of good wishes and good intent, but the situation can become paternalistic and the person with dementia being disempowered and treated in a childlike way because of their confusion or forgetfulness.

All people, including people with dementia should be empowered to make their own decisions.  Sometimes this just isn’t possible, but that does not mean that the carers shouldn’t try to support the person to make their own decisions.

People with dementia can make their own decisions for a long time, and even at a very simple level, if a person is being fed and they shut their mouth, if they cannot speak, then that is a decision not to have more food.  This can happen with people with advanced dementia, that they lose their use of language and no longer talk, but don’t want more food.  Maybe the person stopped for a break and can be encouraged to eat some more in a few minutes or maybe that is it and they don’t want more for a while.

With more complicated issues, the person needs to:

  1. Understand the decision
  2. Retain the decision
  3. Weigh it up
  4. Communicate their decision

So what do all those mean?  The person needs to understand the nature of the conversation about the issue, during the whole conversation, which if it is about a cup of tea, will probably only last a few seconds, but more complex conversations might be much longer.  They also need to be able to understand if they say yes to the issue what will happen and also what would happen if they say no.  They probably also need to know if they made no decision whatsoever, what would happen.  However, for able bodied people, the discussion often is not very detailed and so when treating a person with dementia, they are not expected to have a higher level of understanding than a person without dementia would be expected to have, that’s unfair!  If someone asks me whether I want chocolate, that question is not then followed up by “how many calories have you eaten today?, how much fat and of that, how much is saturated fat?, how is this going to fit into your healthy eating plan? And how much caffeine have you had today?”  All I get asked is whether I want a chocolate muffin or not!

Communication is by any means, for some people with language difficulties, this can be really challenging, so they might need support, with communication aids and there are lots of different kinds of communication aids around that can help.

Some concepts are really challenging and some decisions are big and have big consequences.  There is a presumption of capacity and it is helpful to assume that unless the person is suggesting something dangerous, which might need a bigger conversation that if they give an answer, that they can have what they have said that they want.  But sometimes what they want does require having that conversation.

So dementia is the label of a diagnosis of damage to the brain that is deteriorating and is already to the extent that it will impact on day to day living, but even so, it does not necessarily mean that someone lacks capacity, but they might.