Positive Risk and Dementia
How to manage risk when living with and helping those living with dementia is often misunderstood and filled with misinformation. More and more the latest research suggests dementia should be viewed as a disability rather than a disease. If you, therefore, see this as a palliative disability than our aim should be to allow the individual to live life to the fullest, to change the world around them in order to enable them to live a life rich in choice and stimulation.
However, this is not always easy (particularly in the later stages of the disease) for several reasons:
- The individual themselves can find choice and risk anxiety-provoking
- Physical disability can limit opportunities
- Family and friends misperception of dementia may make them resistant to allowing choice
- We can all fall into Kitwood’s malignant social psychology and infantilise the adult (treat like a child) this is often because the power balance shifts and the individual begins to need care/support.
- Finally social isolation creeps up and makes everything feel risky.
I want to concentrate on 3 points; what is risk, the misconceptions around dementia and the idea that because the person’s ability to change & learn has gone it is important that we ensure the world changes for them.
What is Risk?
When I talk about risk in the context of dementia I don’t mean parachuting out of a plane, or scaling Ben Nevis. Risk is really about encouraging and supporting autonomy, it is also sadly coming to terms with the fact this is a palliative disease and will kill the individual. The temptation is to wrap them in cotton wool when in fact that is the worst thing you can do for someone’s mental agility. Let us go out into the world, to make choices, to meet people, to taste new things, to remember old adventures, to re-capture dreams and to enjoy new experiences.
Misconceptions with Dementia
There are so many misconceptions when it comes to dementia but in relation to risk, it is often that they no longer enjoy the things they used to do and can no longer do those things they enjoyed. The difficulty here is that what starts off as untrue becomes true if a person sits isolated at home.
We normally do hobbies, activities, actions with an end result in mind and feel satisfied with that finished result (whether that is washing up, climbing a mountain or pottery classes). When someone has dementia our mindset (the person without cognitive decline) needs to shift, we have to recognise that the end result becomes irrelevant!
The pleasure comes from the doing, from the action taken with others. If you start to think like that then washing up is no longer about clean, dry plates but laughter and encouragement in shared action, walking is no longer about arriving or following a path but the pleasure of walking (whether forwards, sideways, to the shops or on the moors), when talking to strangers or new friends it is no longer about making sense or completing a conversation the act of communicating/connecting becomes the pleasure and no one cares that repetition or nonsense was most of the result.
Mindfulness often talks about the journey, not the arrival, being mindful of the moment not the future and that is exactly what we need to do when living and doing with someone living with cognitive impairment. Then it becomes all about taking risks and not minding the results, letting someone wash up and smash a plate, letting someone meet a friend and talk nonsense, letting someone choose what they want and where to go and enjoying the doing despite an often unusual end.
I should add that doesn’t mean allowing someone who has an advanced disease to make choices that place them at risk – allowing them to run into a road or go off alone with no recognition of time or place. Rather it is trying to change the world they live in to enable safe choice, encouraging that choice and changing our mindset to live in the moment and worry not about the outcome.
My thoughts on the subject
I believe that every adult whether you have a disability or not should be treated as an individual given the chance to do what they find brings happiness and for those with dementia who can no longer learn new things or remember simple tasks, this means us changing not them. Positive choice! Positive Risk!
If you are depressed, you are living in the past. If you are anxious, you are living in the future. If you are at peace, you are living in the present.
― Lao Tzu