Is dementia a barrier to delivering personalised support?
23 August 2016
By Gill Bailey
I'm going to start this post with a spoiler, because it's important to get this big question out of the way right now.
The answer is no.
Does a person’s dementia mean that designing personalised support needs to be carefully considered? Yes. Does it mean that we need to take extra time to understand what really matters? Perhaps, depending on how they communicate. But does this make it any more complicated to provide personalised support for a person with dementia than anyone else? I’d argue no. In fact, the bedrock of personalised care is understanding what really matters to a person. This may be informed by the conditions they are living with, but it simply won’t be a barrier to making it happen.
So why am I reflecting on this question today? Well, unfortunately many people living with dementia are not given access to appropriate, personalised care. This can apply in all care environments, including hospitals, social care and residential care. Alzheimer’s Society’s latest figures from their ‘Fix Dementia Care’ campaign show that almost 60% of people surveyed felt people with dementia they know weren’t treated with dignity or understanding while in hospital, and that only a shocking 2% of those we surveyed said all hospital staff understood the needs of people with dementia.
Person-centred approaches are a good place to start if we are to make inroads in changing these statistics. By their very nature they start by learning about the person and what matters to them, helping staff to see the person behind the clinical diagnosis.
We’ve been working with EachStep Blackburn, a specialist dementia care home, to integrate person-centred approaches into the way they support people every day. After two months with them, here are some thoughts on what we’ve been doing together.
We need to build person-centred approaches into organisational culture
Personalisation aims to support people to have a normal way of living life. This may give somebody a reason for being alive, and gets us moving away from those care plan boxes that often focus only on a person’s physical needs without also paying good attention to learning what matters to people. Our quality of life is determined by the presence or the absence of those things that are important to us, so we have to take this into account when providing support to people living with dementia.
Personalisation is about a shift in power and that requires a change in relationships. And if person-centred practice requires a different way of listening to people we support, then creating a person-centred culture means extending this to staff as well.
Once staff experience the transformative nature of person-centred working, they can better understand how person-centred thinking tools can make a tangible difference to the people they support. This is a great first step in supporting staff in making personalisation real for people with dementia.
A One Page Profile has three sections:
- What people appreciate about the person
- What is important to the person
- How to support the person well
All these elements are fundamental to the planning process, and we complete the information following a natural, open conversation. This then becomes the staff’s job description, helps us ensure the important things are present on a day to day basis and that people are consistently supported in a way that makes sense to them – even if there are lots of different staff involved in providing that support. This is so truly enhancing choice and control on a day to day basis regardless of the stage of their experience of a dementia. A One Page Profile therefore is the foundation of personalisation and can help us to define person-centred outcomes, and then check our progress against these outcomes through person-centred reviews.
At EachStep, all staff – including those who don’t work directly with people who live at the home, such as cleaners and office support staff – have a One Page Profile. Already we’ve started to hear staff talk about how valuable this is, improving how they work with each other and also supporting stronger relationships. They don’t see the person as a set of symptoms, and the person being supported will see them as more than just a member of staff. This is great for us to hear.
We need everyone to listen carefully
People with dementia may also have different ways of communicating, and we need to take this into account when working through the person-centred tools. Again, it doesn’t need to act as a barrier. Instead, we listen more carefully to what people are telling us in other ways. This principle applies to everyone, and people with dementia are no exception.
If the person living with dementia cannot communicate with us directly, those who love and care most about the person (often family) and those who know them best (sometimes also staff, particularly in residential situations) work with us. This helps us make our best guesses based on what people are telling us through their responses and reactions. Person-centred thinking tools such as Communication Charts can help to record what we are learning for the benefit of the wider team.
At EachStep we are proactively working with families and direct support workers as well as the person to ensure we are listening well to the contribution they each have to make. This is especially crucial as many people are moving into residential care from their own homes, and this is such an emotional transition for many. It requires real empathy and compassion, both for the person living with dementia and their family. By working through a structured approach to communication, people who are close to the person living at EachStep can feel confident that they are being truly listened to.
How can we use what we learn to deliver truly personalised care?
After gathering this information from the people living at EachStep and bringing it together with the information collected through the staff One Page Profiles, the home’s leadership team are able to suggest a good match between what the person wants to do and the staff member supporting them. This is especially valuable during their designated one-to-one time that they have each month with a staff member.
Great stories are already starting to emerge at EachStep, and this is really exciting. It just goes to show what we can achieve by building person-centred approaches into the heart of a service model.
So, is dementia a barrier to providing personalised care? Of course not. It just means we need to listen, learn, respond and adapt to the person’s needs… which is, in fact, the very basis of personalisation. Using person-centred approaches in this setting can help people to live better lives, and I look forward to sharing more great stories from EachStep soon.
I’ll be sharing stories from EachStep over the coming months. In the meantime if you’d like to know more, get in touch.
You can explore person-centred thinking for people with dementia by accessing our e-learning module on the topic at HSAOnlineLearning.org. This consists of an e-learning module, a printed resource to sit alongside it and refer to in the future, access to our ‘Team 15′ tools so you can share what you learn in 15-minute meetings with your colleagues, and access to one-to-one support through our online helpdesk, where you can ask questions.
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