“Involving people with dementia” is now a requirement for anything which includes the word dementia in its title. It is now inadvisable, and may even now be impossible, to raise any concerns about such involvement. And why would one want to disagree? After all there is growing knowledge about how this can be done, not least here in Stirling. The benefits must surely be clear by now.
But there is good reason to pause for a minute. Of course it is really important for people with dementia to be involved in what affects them. As many ways as possible have to be used to encourage and support the voice of people with dementia. But how well equipped are people to handle such involvement in a professional way? It is certainly one area of expertise all dementia professionals now need to spend more time acquiring, so they can assure themselves that the voice of people with dementia is in the room, even if they are not there in person.
As professionals we have to resist tokenism, bullying and political correctness which sometimes emerge in the name of involvement. It is important to feel confident enough to counter people from organisations that claim to "represent" people with dementia, but who are really only spouting their individual view anointed by their organisational role or badge. We need to ensure that involvement is not about trotting out someone to give the impression of involvement when they just aren't properly heard because of the way meetings are run. And we must make sure sensible people are not shouted down with a sort of "you can't know, because you are not living through it" line of argument. These are all problematic. The responsibility of the dementia professional is to find a way around them in each individual case.
So how can this be done? Here are some practical ideas:
You can hold an afternoon tea for people with dementia and their carers and use that opportunity to ask them questions, and listen and remember what they say.
You can hold study days for families and have lots of discussion, picking up themes that can be taken forward with them. They get information, advice and networking, and you get a real sense of whether your publication, project or policy is on the right lines and acceptable to them.
You can have pre-meetings and go through agendas in a relaxed and supportive environment with the person with dementia, and represent their views for them if the meeting is too difficult for them to sit through and speak up.
You can have a post meeting with the action points and go through that with person who has dementia and have an agreement that their views, in both cases, will be taken into account.
Or the person with dementia can sit through the meeting with a buddy who will speak for them if they get stuck, take them out if they get bored, and make sure they are comfortable and well hydrated.
Some people with dementia and their carers might be glad to meet you every month for a coffee and talk through some of the projects you are working on, to give their views. You will have fun and they will be helpful. So when you are in the room as an adviser, it is not just you, but you and your friends with dementia who advised you outside of the room. You can email things to them in between and they might give you feedback.
More than Meetings
Remember that you can use film, written statements, Skype, FaceTime....focus groups, consultation meetings....a whole range of ways of involving people with dementia. Here at Stirling we have great expertise at communicating with people long after everyone thinks they don't have the capacity to express a view.
But involvement must not be at the expense of other expertise. It is not good enough to run the risk of professionals with real evidence-based learning and knowledge being "trumped" by a carer or person with dementia who, though very experienced, only has their own individual experience, perhaps of only one person, in one health care system, from one social background, to go on.
The concern is not about the value of involvement, but about the way that some issues involvement brings with it are handled as part of professional dementia practice.