How We Got Started

Introduction by Lesley Butcher

I was fortunate to be awarded funding from the Higher Education Funding Council for Wales (HEFCW) for a civic mission project on dementia. As part of this, I carried out some focus group research to explore the barriers and facilitators to upholding human rights for people living with dementia in care homes. This research has been thematically analysed and infoms an e-learning platform, using filmed scenarios, that will soon be available to people working in care homes. The aim is to improve empathy and understanding in care.

My motivation to develop this campaign and website was fuelled by my experiences of working with people living with dementia across acute care, community and care home settings spanning 30 years of nursing experience. I have held varied nursing roles over the years. However, no experience was more fulfilling and satisfying, yet conversely painful and unsettling at times, as it has been working with people living with dementia in care homes. 

I have been inspired and led by people who are living with dementia throughout. Notably, Nigel, Andy, Shelagh and Hilary, who are part of the 3 Nations Dementia Working Group have taught me so much through sharing their experiences. They have shared their experiences with our students at Cardiff University, contributed to our curriculum design and spoken at ‘A Person Like Me’ stakeholder event and webinar. They are the real experts in this field as they are living with dementia.

All teaching on dementia should include people with dementia. To quote Dementia Alliance International https://www.dementiaallianceinternational.org/

See other excerpts from the video interview with Lesley Butcher as well as other videos of people sharing their experience of dementia. In particular, please see the videos of Hilary, Nigel, Shelagh and Andy. These can be found on our ‘resources’ page.

Introduction continued….

I have worked in care homes as a manager, a staff nurse and as an agency nurse. I have seen the best of care and the worst of care.

The feeling of joy when making a connection with a person who is in the late stages of dementia is something that cannot be described, it can only be understood by experiencing it directly. It is at such times I stop and realise “This is why I became a nurse”. I feel grateful to have chosen this profession. Likewise, observing the way certain colleagues interact with people; build relationships, friendships, and connections with those they care for is wonderful to see. Such people are not just carrying out a role or a task. Neither are they using any ‘specialist techniques’ or working within a prescribed framework of communication. In fact, many do not have qualifications in nursing or very much experience of care. They are simply a person, demonstrating genuine compassionate humanity towards another person, who they recognise is very much like they are.

Conversely, in some instances and places I have witnessed injustice; people with dementia being treated with lack of dignity, respect, or compassion. I have felt angry and upset. I have challenged poor practice, questioned decisions made by people in senior roles, reported abuse and tried my best to lead by example. There have been times I have come home and cried with frustration over what I have seen. Whatever the negative experience, it always seemed to come down to the feeling that the person was not being treated with humanity. They were treated as an object, a diagnosis or a task rather than as a ‘person’.

Hence, the philosophy statement:

“I accept our differences and honour our similarities; this helps us connect. I do not consider you a category, a diagnosis, a duty or task.  You are a person like me”.

 In the later stage, a person with dementia may not remember your name or recognise you or even their husband, wife, partner or child. However, they certainly recognise when someone is genuinely caring towards them. Perhaps they are even more intuitive than those with fully intact cognition in this respect. When cognition declines, we rely more on ‘feelings’, hence we should be aware of our approach and work in a ‘feelings-based’ way. To connect with someone living with dementia, we don’t need to use our intellect or ‘specialist knowledge’; we need to simply ‘be a person’ and acknowledge the personhood of others.

Empathising with someone living with dementia

I have heard some say, “I can’t empathise with that person with dementia, because I don’t have dementia so I don’t know what it is like”.

This is true to a certain extent. Of course we do not know what it feels like to have dementia. Just like every person’s experience of anything is individual to them. Even people with dementia will not know exactly how another person with dementia is feeling or what they are experiencing. We are all individual and experience the world in our own way.

However, to have empathy for someone with dementia, we don’t have to have the experience of dementia. It’s not about the diagnosis, it’s about the person and the feelings and emotions experienced. For example, some people with dementia might experience feelings of being confused and overwhelmed. They might feel misunderstood, misjudged, isolated, excluded. We may not have dementia, but many of us can relate to some these experiences though different events that have occurred during our lives. How do we feel when we are misunderstood, or someone makes an assumption about us that is incorrect? Angry? Upset? In those times we have been excluded or overlooked, how do we feel then? Sad? Rejected? Unwanted or unworthy?

On experiencing these feelings, how do we react? Do we cry, shout, or lash out (either physically or emotionally)? Or do we become quiet and withdraw within ourselves? Does it create a sense of mistrust, which then influences how we relate to others?

Do we see that the people we care for react in these ways also? These are the similarities and the connections that are important to make and understand!

Understanding resistance or negative responses

The person with dementia may have a different perception about what is happening in a situation. For example, from your point of view you may be changing their incontinence pad. You want to make them comfortable, clean and to avoid pressure sores and moisture lesions. However, to the person with later stage dementia who is woken up in the early hours of the morning and suddenly exposed and touched in a most private way, such actions might be perceived by them as an assault.

As we get in touch with our own feelings and attempt to understand things through the eyes of the person whose cognition is impaired, we realise that certain responses we traditionally label as ‘resistive’ or ‘aggressive’ are appropriate to their level of perception.

Using the same example, how might we react if we thought we were being assaulted?  I expect we would resist! We would cry out, shout, grab, kick or hit out at our ‘attackers’. This would be appropriate resistance and appropriate reactions; based on our reality or how we perceive what is happening.

So, we must be mindful of these key things:

  1. Attempt to understand how the person is perceiving the experience
  2. Be in touch with our own feelings; how might we feel and how might we respond if we perceived it the same way
  3. Find ways of communicating and working with the person
  4. A kind and gentle approach is less likely to be misconstrued than a rushed or ‘task-oriented’ approach

Interview on ‘A Person Like Me’ with Lesley Butcher

The Questions

  1. What is ‘A Person Like Me’? 
  2. What is the background to this campaign? 
  3. What are the principles of human rights? What makes people in care homes at risk of infringement? 
  4. How does this happen? Could you give an example? 
  5. I can see there is a human rights violation here, but what else can we do in this situation? 
  6. Are you not just talking about person-centred care? How does this approach differ? 
  7. What did the recent focus group research reveal about the barriers to upholding human rights? 
  8. Why are you focusing on the barriers? Isn’t that perpetuating negativity about care homes?

Expand the boxes below to see a transcript of the Interview answers

What is the background to this campaign?*

People living with dementia are vulnerable adults. As their disease progresses, there is an increased loss of cognition; hence the need to safeguard and uphold the fundamental human rights for PLWD becomes even more critical. 

It is estimated that around 36.5% of those with late onset dementia living in care homes. There is substantial evidence in the literature that tells us that people living with dementia do not always receive the health and social care they require. We just need to look to the inspection reports from the Care Quality Commission and the Care Standards Inspectorate for Wales to see that there is wide disparity in among care home services. Some care homes were found to be very effectively led and the care was to high standards, whereas in others it was found that there were cultures of care that were task-based, with people being treated with a lack of dignity and respect and patterns of unacceptable behaviour became normalised.

There are also reports from the Alzheimer’s society and high profile reports such as the Francis Report and Andrews that have highlighted the need for improved compassion and empathy in care. Cases such as Winterbourne view- which attracted a huge amount of media attention, found that there were systematic failings to protect vulnerable adults.

What are the principles of human rights? What makes people in care homes at risk of infringement?*

The British Institute of Human Rights identify the core values that underpin human rights- dignity, respect, fairness, equality, autonomy and choice. When someone goes to live in a care home, just the very nature of living in a community of people can give rise to a potential systematic or institutionalised approach. Caring for a large number of people with physical needs and cognitive impairment, sometimes with limited staffing numbers, creates pressure on staff. Time scales get created- certain tasks have to be completed within the day. It’s that time scale pressure that invites the need to be organised and efficient. And it isn’t a bad thing to be organised and efficient. But when it is coupled with a task-orientated focus at the expense of fulfilling an individual’s needs, this is where we run into problems. There’s a pressure to ‘get the work done’. But who are the work? People! So, people can be very quickly seen as ‘the work’ a ‘duty’ or ‘a task’ rather than an individual- a person.

I can see there is a human rights violation here, but what else can we do in this situation?

There are care homes who work hard to ensure this does not happen. The care homes who attended the focus group research shared many examples of how they cater for individual needs to ensure that residents have a choice. People can choose when they want to get out of bed and it’s written into their care plan. There are ways of working around the routines and setting the environment of the home so that it is easier to provide individualised care. I’m not saying it is easy, but it is possible to be flexible.

I’m not going to be prescriptive about what can be done in this situation; there are a lot of different options available. I would really like to hear from you about this. What is your opinion? What could be done to ensure Betty receives the care she needs while upholding the principles of her human rights?

What did the recent focus group research reveal about the barriers to upholding human rights?

The focus group research revealed numerous barriers.  The focus groups included representatives from care homes, people living with dementia, loved ones of people with dementia, student nurses who had a recent care home experience who could add a fresh perspective. We had 7 focus groups of mixed people all discussing basically “What are the barriers to upholding human rights for PLWD in care homes and what could be do about it”

The themes that came out of that research included:

Barriers to do with systems and processes- things like risk aversion, organisational culture, financial constraints

There were also environmental barriers to do with space and the creation of false realities

There were external pressures which impact on the way things are done – for instance, the pressure from public and regulator scrutiny

Some of these things are largely outside of the influence of this particular campaign. What I want to work on with ‘A Person Like Me’ is some of the personal barriers that influence staff. For example:

Values, beliefs and assumptions about people with dementia

Lack of knowledge and experience

Some Communication barriers between staff and families of loved ones of the people in care

And also the sense of value an employee has

These are the things we can change and we can influence as part of this campaign

What are the principles of human rights? What makes people in care homes at risk of infringement?*

The British Institute of Human Rights identify the core values that underpin human rights- dignity, respect, fairness, equality, autonomy and choice. When someone goes to live in a care home, just the very nature of living in a community of people can give rise to a potential systematic or institutionalised approach. Caring for a large number of people with physical needs and cognitive impairment, sometimes with limited staffing numbers, creates pressure on staff. Time scales get created- certain tasks have to be completed within the day. It’s that time scale pressure that invites the need to be organised and efficient. And it isn’t a bad thing to be organised and efficient. But when it is coupled with a task-orientated focus at the expense of fulfilling an individual’s needs, this is where we run into problems. There’s a pressure to ‘get the work done’. But who are the work? People! So, people can be very quickly seen as ‘the work’ a ‘duty’ or ‘a task’ rather than an individual- a person.

How does this happen? Could you give an example?*

Assumptions can become unspoken rules which can then lead to a culture of institutionalised behaviour. So, if we start with something like: We need to get Betty out of bed. Ok, but then we add “We need to get Betty out of bed so she can take her tablets safely. Fine, that makes sense. But then it becomes: Betty needs to take her tablets with breakfast. So that’s now three things. But then some extra rules get thrown into the mix: We need to get Betty out of bed, washed, dressed and downstairs in the dining room by 8am so she can be given her tablets with breakfast. Now this may be a problem for Betty who has always slept until 11am when she was at home because she liked to stay up late to watch TV. But now she is in a care home, there’s pressure for Betty to fit in with the organisation. To fit in with the time scales that cater for a large number of people. The medication round, the kitchen routine, the time available for the care assistants to provide personal care. There’s the belief that if Betty does not have her medication by 8am it will be too close to her next dose which is at 1pm – and of course there’s the organisational pressure to have medications given on time according to the MAR chart. Then breakfast- if she has breakfast late then it will be too close to lunchtime at 1200 and she might not want to eat it then. It will be delayed and health and safety rules say we can’t re-heat the food. Then, what about the washing and dressing time? Well, staff might consider if Betty is not washed now, later on staff may not have time because they will be busy with lunch. What if she is incontinent? Will staff be accused of neglect if she’s not properly washed? What if she gets a pressure sore or moisture lesion? If they left her in bed until 11am and her family come in and complain they found her dishevelled, wet, hungry and thirsty? So what happens? Betty is got up early, is clean, has had medication and food. She lets this happen because she is not independently mobile. She gets washed, lifted up into a hoist, transferred to a chair and taken to the dining room but all the time she is protesting and resisting because this was not her choice. But she looks the part- she’s been ‘cared for’ hasn’t she? She’s now falling asleep in her chair. She’s grumpy and tired and agitated- and can we blame her? Betty has just been treated like an object.

So, we can see just through this one example, the complexity involved. There are a number of issues there for staff- organisational pressure, risk aversion, fear of scrutiny and accusation and the sense of ‘duty’ takes over the choices of the person. Have the principles of human rights been upheld here: dignity, respect, autonomy, choice? No.

Are you not just talking about person-centred care? How does this approach differ?*

When we consider the principles that underpin human rights- dignity, respect, autonomy, fairness, choice and equality, yes these principles share many of the values of person-centred care, which also emphasises that people with dementia are at risk of losing their sense of self. So it’s important that we try and uphold a person’s identity; to maintain their ‘personhood’.

A human rights-based approach adds strength and a legal framework to principles of person-centred care, emphasising that this is just not considered ‘a nice thing to do’ there is actually a legal duty under the Human Right’s Act (1999) to uphold these principles. The presence of dementia or any disability does not disqualify people from having their human rights upheld.

Why are you focusing on the barriers? Isn’t that perpetuating negativity about care homes?*

We need to be aware of the barriers so that we can work on removing them! I am certainly not saying that all care homes are abusers of human rights. Quite the contrary; there are many (in particular, those who attended our focus group research) who are working very hard to ensure the people who live in their homes are cared for with a person-centred approach. Many feel unhappy and discouraged by the media focus on abuse and negative views of care homes. It feels dreadful to work so hard to provide excellent care, and to put our own emotional labour into the care of people, only for negative views about care homes to prevail.

Having said that, no care home is perfect. It is important for even the extremely well led, award-winning homes to continue to seek opportunities to learn from others and share their own good practice with one another.

But we also need to move away from the notion of ‘this is a good care home’ and ‘that is a bad care home’. Barriers exist not just within a facility. They exist within individuals. The people who work in homes are not clones of one another; all will have different attitudes, beliefs, opinions and levels of knowledge. It is important that we continue to research and teach and educate and bring to light some of the issues that exist if we are ever going to try and find ways to overcome them.