With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at human rights and sectioning.
Back in December 2017 I wrote ‘Resolve to embrace human rights’, which outlined basic human rights, the framework for making decisions and the principles that govern a human rights based approach. In that blog, I said:
“I talk about human rights during my training on living well, or living better, with dementia. Although human rights fit into every aspect of living with dementia, I think presenting them in the context of 'living well' sends an important message that human rights are vital to the person’s quality of life.”
That statement remains as true now as it did when I wrote it. What I suspect has changed for many people with dementia is that the hope of living well, or living better, has been severely eroded with the UK’s continual cuts to services. Any notion that the human rights of a person with dementia are likely to be severely affected as a result of these cuts doesn't seem to register with those who make these decisions.
This is perhaps most starkly illustrated when a person with dementia is sectioned, depriving them of many rights, most notably their liberty. I'm on the record as being against sectioning for people with dementia in all but the most extreme (and I mean extreme) circumstances, as I wrote in my 2016 blog, ‘Sectioning people with dementia’:
“Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.”
Interestingly, my post on sectioning has become one of the most popular I’ve ever written on D4Dementia, something I would never have expected as I felt it was a bit of a niche topic when I wrote it and something that I hoped was only affecting a tiny minority of people.
Moreover, this popularity suggests to me (purely anecdotally and not scientifically) that this is a topic many people are concerned about or have experienced, and my email inbox backs that up. Since the post was published I’ve had numerous emails from adult children whose parents have been sectioned due to their dementia. They are bewildered, frightened and wondering what will happen next - and I’m talking about the sons and daughter’s emotions, so imagine how the mothers and fathers with dementia are feeling.
In addition, through my consultancy work I know of at least two people in different areas of England who have been sectioned - having been moved from care homes I’ve provided training for to other care homes (for reasons of geographical location) - as staff unfamiliar with these people and without the additional input I’d been providing felt that they couldn’t support these individuals.
For me, this amounts to showing that the cracks in the health and care system are all too obvious, either because families are struggling alone and unsupported or because some professionals haven’t been trained in non-drug therapy care and support techniques that can help a person who is experiencing more severe dementia symptoms, leaving sectioning as the ‘way out’.
I wrote an eBook for a client of mine, MacIntyre, all about Changed Behaviour, with lots of practical tips and advice that could help anyone, be they a family member or a professional. To expand on that further, I went on to write a series of 11 Changed Behaviour booklets that look at different ‘behaviours’ as they may be described (words like ‘aggression’ aren’t my preferred terminology but needed in this instance for staff to have a logical reference point), and again are packed full of practical, non-drug, non-restraint approaches that were approved by MacIntyre’s Positive Behaviour Support (PBS) team. Four of them have been published (I hope more will be in the future) and can be found under the following links:
These ideas and approaches aren’t revolutionary, but they do require the person practicing them to first and foremost believe in taking a compassionate, human approach that is based around supporting the person in their rights and pursuing the least restrictive option to support their symptoms.
In my view, a basic education in dementia-related human rights isn’t hard to obtain - there are numerous resources that make a great starting point, including the Dementia Engagement and Empowerment Project (DEEP) booklet, ‘Our Dementia, Our Rights’which states:
“The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better.”
Oh how that statement needs to come true, as Dementia Alliance International will attest to in all of the work they have done to raise the issue of human rights in dementia care. Sadly, the urgency of this work was further brought home to me back in May when I was invited to quote to provide ‘challenging behaviour’ dementia training including a learning objective ‘using restraint’. I cannot imagine any mention of human rights within such a training framework, and it seems in a social care context to be just a stone’s throw away from sectioning someone.
Which leaves me to pose one simple question: If some care providers can offer first class, compassionate support that respects the person and their rights and would never require restraint, why can’t everyone? Or perhaps the more pertinent question to substandard care providers who aren't respecting human rights should be: What right do you have to take this approach?