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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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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The thorny issue of mental capacity

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

I've long thought about writing a blog on mental capacity for people with dementia, but two factors have put me off. Firstly, mental capacity is not an area of expertise for me. Secondly, most people (apart from those who are experts in this field) switch off at the mere mention of it - I know, I've been one of those individuals who have glazed over.

But bear with me, and this blog post. I want to explore three of the five principles of the Mental Capacity Act very much as a lay person, a former carer to my dad, and a person who believes strongly in the abilities of people with dementia to retain control over their lives.

For those not familiar with the five principles of the Mental Capacity Act, here they are: 

1) A person must be assumed to have capacity unless it is established that they lack capacity

2) A person is not to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success 

3) A person is not to be treated as unable to make a decision merely because he/she makes an unwise decision

4) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests

5) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action

 

Principle number one intrigues me from the outset, partly because despite the Mental Capacity Act having been law since 2005, most people who aren't aware of the principles of it assume that the moment a person is diagnosed with dementia they do not have capacity. The old phrase, "They've lost their marbles," springs to mind.

 

What I would say is that in my experience, not just with my dad but through meeting many other people who are living with dementia, mental capacity isn't a one-size-fits-all. Each individual retains their own level of capacity at any given point in their life with their type of dementia, and another person with exactly the same type of dementia who is believed to be at the same 'stage' (I wrote about 'stages' here) may have a very different level of capacity. Capacity is, therefore, completely personal.

 

Moreover, capacity is often a fluctuating state. So, for a person with dementia who has suddenly contracted an infection, their own usual capacity may be temporarily diminished, but when the infection has cleared, they may return to the same level of capacity that they had before. Even having a sleepless night might render a person to temporarily have a reduced level of capacity - as a mum to a 14 month old, I can certainly appreciate the effect of sleeplessness, and I am an otherwise healthy person who isn't living with dementia.

 

Other factors can play havoc with capacity too - for example, a person with vascular dementia who has had a new TIA (Transient Ischaemic Attack), a person with chronic pain (which may be undiagnosed), a person who's had a fall that's shaken them up, or someone with poor levels of nutrition or hydration. For all these reasons, and many more, it is vital that it's never assumed that a person lacks capacity today just because they (maybe) did yesterday.

 

The second principle regarding practicable steps is also an interesting one. Again from experience, I know that the idea of practicable steps varies hugely depending upon who is trying to ascertain if the person has capacity. It's very common to cut corners here, and simple steps to improve the person's ability to demonstrate their mental capacity can be overlooked. For example:

•     Not considering if the person needs to be wearing hearing aids or glasses in order to communicate more effectively

•     Whether the environment is appropriate for the person (Too busy or too noisy)

•     Whether the person is comfortable (free from pain, not hungry or thirsty, no illness)

•     Whether the person has had the medication that they need (or indeed if medication is affecting their abilities through undesired side-effects)

•     Whether the right language is being used (is English the person's first language?)

•     Whether the assessor has the right abilities (eg: To speak clearly and form a trusting relationship with the person who has dementia).

Finally, the third principle fascinates me, since the whole idea of an 'unwise decision' takes us into the territory of risk taking, something that I've written about in the past as being an area of dementia care and support that is often unduly and unfairly restrictive. Risk aversion is a huge issue, sometimes for the right reasons if someone's life is in danger, but often it's far more low level and about creating circumstances that work well for those providing care and support but considerably less well for the person with dementia.

 

That last point, more than any other, is probably behind why I've come to see the Mental Capacity Act, much like the Human Rights Act (which is gathering increasing interest and alignment with best practice in dementia care and support - see the work of Dementia Alliance International) as more than just dry legislation that isn't applicable to the practical world of dementia care and support.

 

Anything that helps support a person with dementia to maximise what they can do, rather than what they can't, is to be celebrated. If you do nothing more with the Mental Capacity Act than familiarise yourself with and practice its five principles, you will have gone some way to enhancing your understanding of people with dementia and refocusing your approach to providing care and support in a way that puts the person front and centre.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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