Audio only version below…

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I’ve found running a training session on controlling care can help people to see things differently, but I often leave frustrated as I feel that things are unlikely to change much. This is even the case when they have produced their own list of ‘banned’ words and actions. Aligned with this is their struggle to come up with alternative words and actions.

What interests me is getting behind the reasons for team members feeling or being unable to provide care in a less controlling way.

One thing to look at is the influence of routines. Traditionally routines are based around the tasks that need to happen, shift patterns, drug administration and mealtimes. They are also influenced by the belief that all tasks must be completed by a certain time in order not to upset the staff on the next shift.

A place I worked with had many people living there who were clearly unhappy and showed it. I sat down with the nurses, and we went through hour by hour what was happening and why. The results were startling. Most of the activities and mealtimes were clumped together in a few hours. Medication was administered early in the morning, hours before breakfast because it was convenient to do so. For most people there was a two or three hour gap between breakfast and lunch. The kitchen put huge efforts into providing a lunch that for the most part was thrown away. More worrying was the lack of a plan to consistently offer food and drink in the gap between supper (about 5.00pm) and breakfast the following day.

The upset and waste were being driven by a routine that had remained unquestioned for years. Why had it not been tackled before? We worked out what needed to happen and how, but there was the anxiety of what change may bring, the fear of unknown consequences. Getting to focus on the possible positive outcomes was difficult. Some people even believed that the routines should not be changed, that they just needed more staff (More staff doing more of the same things that weren’t working before?).

The nurses led on re-organising the medication round, breakfast began earlier and went on for longer and lunch was pushed back. More snacks were made available during the evening and at night. It took a few weeks planning and there was nervousness on the first day of the change. It did make a difference; people were more relaxed, and the focus was shifting more towards the needs of the people living there. It galvanised them to go and do great things.

My experience has been that when staff teams question the routine and feel empowered or compelled to act, positive change will happen. It takes courage to challenge established rules or customs. Teams won’t change unless you change the routine. We know why the status quo exists but let’s look at it from the point of view of the person living in the care setting. Are these things happening at this particular time for my benefit or for the rotas?

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Take risks: if you win, you will be happy; if you lose, you will be wise.

Taking risks is a normal part of everyday life.  It starts from childhood when we first learn to crawl, then walk, gaining independence and freedom.  As adults, many of us become increasingly adventurous, some even participate in ‘high risk’ activities such as skydiving or racing.  This adventurous spirit is often celebrated, particularly in the media.  Somehow this cultural attitude is different towards people who live in care homes or require support.    Instead, the attitude is one of protectionism and risk aversion. 

Fear of falling (that is excessive), is an example of how, needless restriction in participation in physical and social activities, may in fact increase the risk of falls due to physical deconditioning, as well as being harmful in terms of poor quality of life, social isolation, depression and psychological harm.  

There has been a lot of pressure in health and social care to assess and manage ‘risks’.  A risk assessment can sometimes restrict or prevent people from doing the things they want to do or living where they want to live.  Care providers have both a duty to uphold the basic rights and freedoms of their residents, and a duty of care to protect them from foreseeable harm. 

What is positive risk taking?  Positive risk taking is about taking risks to achieve personal positive outcomes.  The term positive is not about the risk itself, but rather about the outcome of the risk. 

The concept of ‘positive risk taking’ is about sharing risk.  Making decisions and managing risks should be a shared decision, not a burden for a single individual.  Whatever condition people are living with, they still have strengths to call upon, their personal history and experiences, capabilities and wishes. 

Positive risk taking relies heavily on a strengths-based approach.  This means we need to see people in terms of their strengths, their personal qualities, abilities, capabilities, desires, motivations and wishes.  This requires drawing on their past as well as their current situation, and future priorities.  It is ultimately about enabling people to live with as much dignity as possible.  Understanding that their identity is ‘who they are ‘and ‘what they can do’, NOT ‘what they are’ and ‘what they can no longer do’. 

Meaningful Care Matters has developed a Risk Framework for People with Impaired Decision-Making Capacity.  This is a good practice guide, using evidence from research on risk and ideas about current best practice and is subject to further review.  It is based on identifying and balancing the positive benefits of taking risks against the risks of an adverse event occurring.  This framework starts by looking at the benefits for people of doing an activity, and then looks at the risks involved.  It also explores the emotional consequences of people not being permitted to do the things which bring love, comfort and joy into their lives.  In this way, the best results for the person with impaired decision making will be achieved.   

And in the end it is not the years in your life that count, it’s the life in your years.

Abraham Lincoln

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We often associate risk with extreme sports or maybe an investment that is considered high risk. But the truth is we are constantly assessing risk in everyday life and making decisions because of how we perceive this risk. Yesterday I was travelling in Switzerland with a friend who is visiting from Australia. We were in a shop, and he picked up a bottle of Evian water, turned to me and asked, “is this safe for me to drink?”. I thought he was joking, but no, he was asking a genuine question. I informed him that it hadn’t been scooped out of a muddy puddle in a third world country and that he would be just fine.

I spend a lot of time working with the Everything DiSC tools which profile people’s styles and the truth is some of us are more prone to being risk averse than others. Some people thrive on risk while others avoid it at all cost. I can’t think of any greater example of this than the polarising views during the Covid pandemic. It felt like half the population were opposing strict covid measures while the other half were saying those same restrictions didn’t go far enough.

So how do we find a healthy balance? Here are two questions you should ask yourself when deciding if something is worth the risk:

Am I risk prone or risk averse?

If we understand our personality and how likely we are to take on risk this can help enormously when making decisions. I love taking risks, but I understand that I can be too casual sometimes, so I often run things past my wife who is a good balance to me. If you recognise that you’re naturally risk averse, then make sure to take that into account and make a conscious decision to be a little more relaxed.

Is the risk worth the reward?

There are times when the pain of missing out on the reward is greater than the potential pain of the risk. Don’t let fear of the 5% stop you or someone else from enjoying the 95%. As a parent, I’m aware that I can’t shield my children from all risk as much as I’d like to. If I want them to experience the joys of life, I understand they will also be exposed to some of the risks of life.  

In our work at Meaningful Care Matters, the risk assessments we use put a strong focus on starting from the potential emotional and social benefits of a proposed activity rather than going straight to the dangers. This helps ensure that when decisions are made, these benefits are not lost, and we do all we can to minimise the risks, rather than rule out the activity all together.  Ultimately it is a balancing act, and people involved in those decisions will approach it from their particular perspective on risk.

My sky diving experience has bought me years of joy as I look back on that experience. I try and remember that if I had let fear stop me from stepping out on to the wing of that plane, I would never have felt the adrenaline rush of falling through the sky.

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Controlling care which goes by unchallenged is insidious, it creeps into each day and sets the tone.  It comes always form a ‘we know best’ attitude.  It can be found in the language use of staff which is all about the overuse of negative words which stop, prevent or restrict people.  Or instead of direct language it is about a lack of language with people being moved without being spoken to or having a choice or the movement explained. 

In contrast, person centred care shifts the focus from ourselves to the people we are caring for, and ‘adds to/is more than’ meeting people’s physical care needs but builds conversation and social interaction to meet people’s emotional care needs for comfort, love, attachment, inclusion, occupation and identify. 

We need to be vigilant about eliminating controlling care in our services.  We need to regularly take the time to observe our service to see what the care looks, sounds, and feels like.  Acknowledge the truth – good and bad.  Would you want to live here or attend the service?  How can we improve or do better?  How do we maintain the high standards?  Once you know there is a better way, you can’t go back.  Keep doing better.

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Yet, in recent conversations with a number of care home staff, all condiments have been removed from tables.  This seems to be mainly because in the context of Covid19, different people touching the same bottle or salt and pepper pot represents an infection control risk.  But, there is also an underlying message that somehow ‘they’,  meaning the people living in the home and especially those living with dementia might come to some terrible harm from these condiments being easily available to them.  It is the use of the word ‘they’ and ‘them’ a lot which really makes me prickle.  Why Oh Why as we age or develop cognitive difficulties are we somehow regarded as so different to other human beings that a bottle of ketchup or vinegar is perceived as something which we really ‘shouldn’t’ be allowed?  What honestly is the worst thing which could happen?  Might someone mess up their shirt with the Ketchup or drink the vinegar?  Regarding the cross-infection risk, can we not make sure everyone has washed their hands before the meal as would be recommended anyway?

This is a small but significant example of how we take away choice, independence and control from people.  We do it because of a genuine desire to keep people safe, but in so doing, give individuals the message that they can no longer enjoy the same things we do.  It is a process of ‘othering’ which is a dangerous slippery slope. and one which we need to question regularly and rigorously.

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Controlling care is embedded deep in our healthcare culture and is the outcome of having a ‘task’ orientated model of care, where the ‘task’ takes precedence over the person needing the care. This is not to say that health care workers do not care, there are caring and compassionate people out there, but it is a ‘mindset’ of ‘I know what you need and want’ that dominates.

‘Behaviours’ can be normalized and comments such as “he always shouts, it is normal for him due to his dementia” is commonplace. This minimizes the importance of what this person is trying to communicate. Due to his ‘brain damage’ he cannot verbalise in the same structured way as someone without ‘brain damage’ therefore it emerges in different ways, such as shouting, screaming, throwing items, and withdrawing in himself.

Controlling care manifests in different ways such as: actions and/or language such as “don’t’ do that” “that is not very nice” “drink your juice” “it is time for you to eat”. These can appear innocent or harmless, but they are powerful forms of control that erode self respect, and personal dignity.

When a person experiences a ‘loss of control’ it is usually magnified by others ‘taking over’ and ‘doing the right thing’. It is critical that we ‘step into the individual’s shoes’ and look at what this person has lost control over. It might be moving out of their home that they had for 30 years, they no longer get to cuddle next to their husband/wife/partner every night, no more walking to the shops daily or taking the dog for a walk, taking a long uninterrupted soak in the tub/bath – everything that we take for granted which is ‘our life’ has gone and/or changed forever.  We need to help people get back the ‘control’ in whatever shape or form this may take.

How to change this ‘mindset’ and ‘culture’ is not an easy thing to do and at Meaningful Care Matters we stress the importance of getting to know the person we are caring for and to try and find the ‘core spirit’ of that person to help them re-emerge from a life of being ‘controlled’.

If we don’t know a person well it is much harder to connect and have meaningful interactions. Exploring the life history of that person is key to understanding what makes them happy, sad, and what ‘triggers’ they may have.

An example of this is a gentleman that I met in a ‘Butterfly’ Home who was a businessman and went to the office everyday prior to being diagnosed with dementia. The team members in this home observed his apathy and depression and decided to try and help this gentleman regain some structure and dignity back in his life. An office was set up in an area close to his room which consisted of a desk, chair, pens, paper, envelopes, a ‘copy’ stamp etc. and a coat stand for him to hang up his jacket and hang his briefcase. This became part of his life again which defined him and gave him back ‘control’.

We all have a ‘duty of care’ to help people living with dementia gain back control and self -esteem to re-find the person that they once were.

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Later that day in the same care home, there was a woman called Margaret who was pouring tea from a tea pot all over the table.  She was making quite a mess and obviously there was a risk that other people at the table might have hot tea poured over them.  Again, I witnessed a wonderful ‘Butterfly’ response by the care worker at the table.  She thanked Margaret for helping and discreetly changed the liquid in the tea pot to a less hot liquid to minimise the risk.  She mopped up some of the mess without making too much of a fuss about it.  She didn’t stop Margaret as in Margaret’s reality she was hosting a tea party.  It emerged that in her past she had been involved with a voluntary group who helped served drinks and she had also been a Mayoress.  She was a busy person who needed and enjoyed having a role.

The central focus of both these situations is how to keep people safe, without being overly controlling and without making the person concerned feel that they are being reprimanded for doing something wrong.  

At Meaningful Care Matters, we place a strong emphasis on raising awareness of how many aspects of ‘care’ for people we support can be perceived as controlling by the person on the receiving end.  This happens many times throughout the day in care homes or hospitals.  We decide for someone what they are wearing or what they are eating and drinking, we place an apron round someone’s neck or move someone’s wheelchair without asking or checking first.  In many of these examples, there is often a good intention to look after someone, but we forget to remember to involve and encourage choices for that person.

Yet, as the above examples illustrate, if we shift our approach creatively, we can maintain someone’s sense of independence and control, whilst also keeping them safe.  Real ‘care’ needs to be empowering and enabling of a person’s self esteem and autonomy over their own life.  Removing controlling features of care is one of the first stepping stones to meaningful culture change.

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For many of the special people that we care for and/or encounter, especially those battling a cognitive impairment within  our communities, hospitals and care homes,  they have forgotten how to live, have little purpose in life and for some the essence of who they are has been lost due to others only seeing their cognitive impairment. We must help them to find themselves again and to regain their dignity and respect. In order to do that we need to know who they are, what did their life look like, what makes them laugh and cry, what comforts them.

Finding the core spirit of a person takes time, patience, understanding and trust but getting there can take us on a fascinating journey. From their place of birth, family background, relationships within the family, pets, happy times and sad times, to favourite music, spirituality and culture.

To use the example of music which has shown to provide many people living with dementia a sense of enjoyment, we could play their favourite music, sit together with feet tapping, sing or dance together. This very simple and meaningful interaction creates a shared activity and interest and promotes expressions of familiarity and belonging.

When their personality re-emerges from their story it can be energising, motivating and spontaneous and allows the person to be ‘free’ from constraints and controlling care. The Carer’s interactions are enhanced because of the insight into the life of the person and their achievements and helps to build the picture and enables connections and development of   relationships, thus guiding us to find the ‘real person’.

Helping someone to live life in their way and to give them a sense of purpose and belonging is to enable that person to flourish, to feel a richness from the abundance of love, respect and freedom that we all cherish.

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