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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Restraints – The dark side of care?

"They kick, punch and bite us, what do you expect us to do?" The words of a social care worker caring for people in a residential dementia unit, explaining why they sometimes have to physically restrain their residents or request prescriptions for antipsychotics.

The use of restraints is only legal in England and Wales if it is covered by a Deprivation of Liberty Safeguards (DoLS) order which, according to recent figures released by the Health and Social Care Information Centre, have increased year-on-year since their introduction in 2009. 11,887 applications were made in 2012/13, of which 54 per cent related to people living with dementia, but as a society how do we feel about restraining people with dementia, even when it is done legally?

Restraints can involve using bedrails to keep someone in their bed, straps to tie them to a fixed object, seatbelts on chairs or locking them in a room. I’ve seen care home residents belted into wheelchairs to stop them from moving about – although one gentleman proved sufficiently strong to get to his feet and move around with the chair attached. I’ve also seen residents who have been strapped into wheelchairs injure themsevles trying to get out of the chair, with chairs ending up on top of them or arms and legs getting entangled with metal.

As far as bedrails are concerned, I saw extremely high ones used on a man in a hospital bed to try and prevent him moving around the ward, but this was entirely inappropriate since he managed to climb over them on numerous occasions and eventually hurt himself as a result. Very low-level bedrails were used on my dad’s bed in the last couple of years of his dementia, but my written consent was obtained before they were used and their purpose wasn’t as a restraint, but purely as a safety measure to ensure he couldn’t roll out of bed onto the floor (he was already immobile so wasn’t being prevented from getting out of bed by them, merely from falling during his sleep).

The use of antipsychotics was of course once commonplace in dementia care, as I wrote about here, with my dad enduring a period on this type of 'chemical cosh' medication before we managed to get it stopped. I am still regularly contacted by families who are having to cope with the trials and tribulations of having loved ones with dementia on antipsychotics, despite such prescriptions now being seen very much as an absolute last resort for only the most severe dementia symptoms when all other interventions have failed.

So how do you cope as a care worker if you are going into work every day and being kicked, punched and bitten? The answer is you potentially don’t, but more often than not that is due to a failing in the system, rather than something the person with dementia or indeed the person caring for them can control. If anything, those two individuals are the biggest losers in a system that too often resorts to factory farming our older people. A lack of funding for care has led to cutbacks in staffing levels and specialised training in many organisations, and the result could be described as a return to the dark-ages of care provision.

What is perhaps most alarming about the situation around DoLS applications isn’t the number of applications being made or indeed the number being approved, it is the persistent fear of how many restraining practices are being used illegally. Behind closed doors many ‘professionals’ are looking for a quick fix for ‘challenging behaviour’ that will take up minimum staff time but provide maximum effect in terms of containing someone who they see as a problem. For them, a DoLS order isn’t necessarily a priority, particularly as they would need to show that the restraint measure being proposed is appropriate, in the person’s best interests and is the least restrictive possible.

In my mind, depriving someone of their liberty should only be done in the most extreme cases, when all other avenues of care and support have been exhausted and the person with dementia is a direct danger to themselves or others around them. To avoid the need for restraining measures, organisations may need to implement institutional changes in the way care is provided in order to alter staff behaviour resulting from a cultural lack of understanding of dementia, with someone leading those changes who believes that there is another way to approach dementia care.

If staff have never been trained in how to cope with someone experiencing severe dementia symptoms, like aggression, confusion, walking, problems with orientation or issues with sleeping, they are likely to feel out of their depth and looking to resort to restraining methods to protect themselves and those around them. It’s a natural instinct, but it is an instinct that never needs to be seen if an organisation is capable of responding to the needs of individuals with appropriate staffing levels and by embedding a culture of person-centred care throughout their organisation.

I’m not saying that dementia is an easy disease to manage, but however hard it is to look after someone experiencing it, it is far harder for them to actually be living that experience or indeed handling the consequences of the actions of those who are charged with caring for them. Sadly most organisations are so financially squeezed that they are operating on budgets that don’t allow for either specialised training or one-to-one care provision, therefore restraints, be they physical or pharmacological, are a cheap, simple solution.

In situations where that is true, I feel a deep and profound sense of shame that we cannot respond in any other way, and even when organisations have a DoLS application approved and are acting entirely within the law, I struggle to comprehend how we cannot enshrine in law care practices that could avoid the need for restraint altogether. Idealistic maybe, but consider this. Dementia may remove someone’s ability to be proportionate in their response, but those not living with dementia cannot claim the same. In my mind we must always be proportionate in our response.

Until next time...

You can follow me on Twitter: @bethyb1886

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