On the Spectrum - of truth and lie telling in dementia care and support …..

Jude Sweeting - Director of Quality & Enjoyment

A recent story I read from an Outstanding Care Home we work with re-peaked my curiosity about truth telling in dementia care. A subject of huge pertinence to those supporting people living with dementia either as practitioners or family carers and one that has fuelled many a debate over the years by those trying to find a path between ‘therapeutic lie telling’ and the preservation of trust and autonomy for people with dementia.

The story was about an activity coordinator responding to a resident worrying about money by creating her a ‘false pay packet’. A creative response, which worked in that it restored the resident to her more usually enjoyed level of well-being.  A wanted outcome achieved – yet this story is just a slim segment of a bigger practice issue, namely, how far should we go with supporting someone else’s reality (?) - and it made me wonder.

It made me wonder just how many times a day people supporting those living with dementia make, or avoid making, similar decisions across the UK. I would guess its potentially a very big number every day – and some people quite understandably will just not know what to do for the best. After all, it takes a certain amount of confident risk-taking to introduce something that is essentially unreal/false on the basis that a person will find it meaningful and gain well-being benefits – it’s a gamble that not everyone will take. More than that, some people certainly wouldn’t do it, whilst others most certainly would and others whilst trying to be kind will risk being clumsy.

That led me to wonder how we can support care home workers with these daily quandaries. I was reminded of the Mental Health Foundation report published in December 2016 ‘What is Truth?’ which has made a big contribution to pioneering an ethical and practical path through the quagmire of opinions and interests. The report is an interesting read and unravels the many complexities including those posed by a typical, simple, and yet very good question i.e. ‘what should I do/say if a person wants to leave to go home and they no longer have a home to go to?’ Answer – ‘it’s complicated and it depends.’

The report contributes usefully by pulling together and articulating a wide range of stakeholder views and expertise, offering a scale for responses and interventions. It recommends that care staff receive training on this as part of general dementia communication training. More than this I would certainly want care leaders to have the awareness the report provides and for senior care home staff to have this resource when care planning and creative problem solving – it will boost worker confidence and support better outcomes.

Which led me to wonder how many trainers will have integrated this into their courses and more importantly how many people are benefiting as a result…

So to help stop me wondering make sure your care leaders, in house trainers, managers and problem solvers know about this report by forwarding them the link.

https://www.mentalhealth.org.uk/sites/default/files/dementia-truth-inquiry-report.pdf