What right do you have?

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.

Further evidence of instances of sectioning aren't hard to find - examples from a quick search include The Times in December 2018, ‘Dementia patients needlessly sectioned’ (subscription content), and the Daily Mail in May 2018, ‘Father, 71, with Alzheimer's is SECTIONED after a string of ten care homes refuse to take him in’.

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:

https://www.macintyrecharity.org/our-expertise/resources/verbal-aggression-changed-behaviour/

https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-physical-aggression/

https://www.macintyrecharity.org/our-expertise/resources/paranoia-and-accusations-changed-behaviour/

https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-repetition/

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?

Until next time...

You can follow me on Twitter: @bethyb1886
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Sectioning people with dementia

Over the four years I’ve been writing this blog, I've met or been contacted by many families whose loved ones with dementia have been sectioned (detained in hospital without consent under the Mental Health Act). Sometimes the sectioning has occurred prior to a diagnosis of dementia, with the person then being diagnosed during their period of detention in a secure mental health hospital, and sometimes the sectioning has happened after a diagnosis and while they are living with a form of 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.

As we know, people from all walks of life develop dementia, including people with long-term mental health disorders like schizophrenia and bipolar (manic-depression). The addition of a form of dementia for a person with a mental health disorder may result in a particular set of circumstances that makes sectioning necessary.

Equally, we know that dementia can itself cause significant changes in a person's personality, when they have no previous history of mental health illness. If those changes result in a person taking up a dangerous weapon and threatening themselves or others, again sectioning may be the only option.

These are, by any stretch of the imagination, extreme circumstances. They also affect a very, very small proportion of people with dementia. Yet figures published by the Health and Social Care Information Centre on 23rd October 2015, for the year 2014/15, showed that people aged 60 to 89 were most likely to be detained (Sectioned) under the Mental Health Act, with the number of detentions in each of these age groups (60-69, 70-79, 80-89 and 90 or over) all being over 43.0 per 100 people who spent time in hospital.

It would be a reasonable assumption, given that diagnosis of dementia is highest amongst older people, to suggest that dementia was a factor in many of these detentions. The question is, however, was sectioning the best form of care for these individuals? Most people with dementia live with progressive symptoms that cause them various challenges, and which the people around them need to respond to in ways that help to alleviate any distress they are feeling.

Sectioning is not a method of care that is likely to succeed in alleviating distress for the average person, or indeed for anyone bar those experiencing the most extreme symptoms and in the most extreme circumstances. It is most likely to result in a 'chemical cosh' being administered, and often that results in the long-term use of antipsychotic medication that is generally only removed if the person is fortunate enough to come into contact with clinicians and care professionals who have a more progressive outlook.

Fortunate is a word that I shouldn't need to use in relation to dementia care, but that is the harsh reality for some people who are living with dementia and being medicated to 'control' their 'behaviour'. Sectioning for a person with dementia, or someone who is suspected of having dementia, is a blunt tool that is still, in my opinion, used in circumstances that it should never be.

It can be used where healthcare professionals are wrongly assessing a situation, or don't have access to other methods of supporting a person with dementia - for example highly skilled social care that rehabilitates the person in a specialist care home environment that is designed for people with dementia and that provides person-centred, rehabilitative, therapeutic care.

It is sometimes used where a person with dementia is displaying 'challenging behaviour' (a term I dislike immensely) when in reality if their needs were met they wouldn't appear so distressed. In all bar the most extreme circumstances that I talk about above, a person with dementia lashing out isn't a sign that they need to be controlled by the means of a section if they won't 'co-operate' with the authorities.

Other circumstances I’ve heard of where a section has been used include carer burnout, where the family of the person have reached a complete breakdown. It’s pretty obvious, but if we supported family carers better to begin with such a circumstance wouldn’t develop. Another example can be extreme self-neglect, where a person living alone has neglected themselves to such an extent their life is in danger. Again, sectioning here is a bit like shutting the stable door after the horse has bolted. With an earlier, gentler intervention the situation never needs to deteriorate to a point where a section is being considered or used.

I'm not naïve; I know that not every person with dementia will avoid spending time in a 'secure unit', much as I would like them to. My father spent one 3 month spell in a 'secure unit' at our local hospital, was medicated and lost half of his body weight, and I don't doubt that some of the people locked in that unit had been sectioned. I just feel that sectioning is the most severe end of mental health care and should be reserved for the extreme circumstances that I detailed above, not as a short cut to ‘dealing’ with a person who has dementia and isn’t ‘conforming’ to what others expect of them.

I dislike immensely the idea of controlling people with dementia, and sectioning effectively does that. Moreover, I question the long-term good it is likely to do. Dependency on medication, the development of a whole host of other health issues as a result, severe deterioration of the person’s dementia, and complete dependency on the health and social care systems for the rest of their life. It’s not a pretty picture.

The solution? That sectioning is seen as being the extreme, last resort event that it should be, rather than a go-to ‘solution’ for ‘problematic cases’. Improvements in awareness and education around dementia, particularly the understanding around the physical changes in the person’s brain. And most importantly, the embracing of person-centred, rehabilitative, therapeutic support, delivered in an environment that enables rather than disables the person with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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