Resolve to embrace human rights

(A note before I begin this blog post: You should not consider anything written in this blog as legal advice for you or anyone you care for).

During my dementia training for social care professionals, I ask participants:

“Do you think people with dementia have human rights?”

Most participants, keen to say the right thing, murmur, “Of course.”

Which naturally leads me onto the next question:

“So what are these human rights then? Name me some...”

And the silence that follows is usually defending.

When the silence is broken, it’s been broken by some really ‘interesting’ contributions. The right to "a cup of tea" and a "clean bum" are two notable examples.

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.

Human rights and people with dementia

There has been a very powerful movement towards thinking about the support of people with dementia in a human rights context, led by many important voices including Dementia Alliance International. The disability sector really pioneered human rights work in relation to people with various disabilities, and leading advocates for people living with dementia do, quite correctly, feel that the same rights should be afforded to people with dementia. Legally that is certainly true, but in practice it happens sporadically at best.

Human Rights law encompasses many different aspects of life. To pick out some of the Rights that are particularly relevant in the context of health, social care and dementia, I often think about:

•    The Right to life

•    The Right to freedom from torture and inhuman or degrading treatment

•    The Right to liberty and security

•    The Right to respect for your private and family life, home and correspondence

•    The Right to freedom of thought, belief and religion

•    The Right to freedom of expression

•    The Right to protection from discrimination in respect of these rights and freedoms

•    The Right to peaceful enjoyment of your property

Historically, the most common barrier to the application of a person’s human rights has been the assumption that all people with dementia are incapable of self-determination (autonomy) simply because they have dementia. Of course, with the introduction in the UK of the Mental Capacity Act (My blog post on MCA is here), that assumption could no longer, legally, be made.

Yet, such is the lack of understanding about MCA, and the often poor practical application of its 5 main principles, the MCA is frequently as misunderstood as human rights legislation. Even more alarmingly, whilst most social care staff when questioned will say they’ve had some basic training in the Mental Capacity Act and Deprivation of Liberty Safeguards (DoLS), the majority of staff I see have never even been asked to consider their care and support practices in the context of the person’s human rights.

Simplifying legal complexities

Human rights is a huge topic that I do not profess to be an expert in. But even for a lay person such as myself, there are important aspects that I feel anyone can and should grasp to augment their understanding.

Firstly, the framework for making decisions is an approach based on asking yourself:

•    Is it lawful?

•    Is it a legitimate aim?

•    Is it necessary in a democratic society?

Three fairly simple questions. And of course the ‘it’ could be anything, from a daily care and support issue around personal care or medication right through to locking doors.

Secondly, the principles of a human rights based approach are:

•    Proportionality

•    Least restrictive option

•    Balancing rights and risks

•    Proactive strategies

All of those 4 principles draw me in, much like the principle in the Mental Capacity Act that allows for a person to make an ‘unwise’ decision. The concepts of balancing rights and risks, being proportional, and taking the least restrictive option always spark interesting conversations. 

Practicing a human rights based approach

In one recent example, I asked a group of care workers what they would do if the person they supported wanted to take a walk outside:

Care staff: “Our residents often go outside onto the patio in the summer.”

Me: “Ok, I was thinking a bit further than your patio area. And I’m talking about right now. Late November, 4pm.”

Care staff: “Ah well that would be dangerous so we’d keep them in.”

Me: “But what about the person’s right to liberty and security? If we say we are respecting the person’s rights, are we only doing that between May and September?”

Care staff: “But we have to keep them safe - it’s getting dark.”

Me: “It is, so if we are taking a human right’s approach, respecting the person’s right to LIBERTY and SECURITY, let’s ensure the person is wrapped up in warm clothes and non-slip shoes, dress ourselves similarly, take a torch (and we have lighting around the building) and go for a walk outside with the person. That way we are supporting the person’s right to liberty, doing our best to keep the person safe by keeping them warm and going with them, and being proportional by supporting what the person wants but keeping to areas that are well-lit and won’t involve us getting lost. We have balanced the person’s rights with the risks and found a less restrictive option (than keeping the person locked up inside). We could also add being proactive in our approach if the person wants to regularly go for a walk at this time and we anticipate and support that. And as a plus point, can anyone think of any other benefits?

(Silence)

Me: “The person will hopefully get a bit of an appetite for their supper, enjoy some exercise, and potentially stave off any sundowning symptoms by being occupied and engaged. Best of all, we will have empowered that person.”

Empowerment - the very best example of living well

That, for me, is ultimately what a human rights based approach is all about - empowerment. Losing rights and freedoms is very disempowering. Being told "no" constantly. Being locked up like a prisoner. Feeling your needs and wants don’t matter. Anyone in that position might just give up.

But when we find a way by being proactive, even if logistically we have to make some compromises, we transform the person’s experience. Being told "yes" is a positive feeling. When the doors open, the sense of freedom is exhilarating. Having our needs and wants met validates those needs and wants. You are living, not just existing, because you feel like a worthwhile and empowered human being.

My challenge to you

Many individuals and organisations would benefit from enhancing their understanding and revolutionising their approach to human rights to protect people living with dementia from, at best, misguided care and support and at worst, abuse. So, as 2017 draws to a close (this post marks my last D4Dementia blog of the year), my challenge to everyone involved in the care and support of people with dementia is to make 2018 the year you resolve to embrace a human rights based approach. And to support you, this won’t be my last blog on the topic.

Thank you for all your support in 2017. Until 2018...

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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