The tendency is for healthcare to decide what is right for people − but conversations with dementia patients reveal what is important for their quality of life, says Helen Sanderson.
Following the G8 health leaders summit on dementia and charities lobbying world leaders for dementia action plans, the issue is high on the health agenda. As well as a debate about the big picture, we must also focus on small things we can do now in our care homes, hospitals and communities to change the lives of those living with dementia.
‘By focusing on what matters to people as unique individuals, we can improve the quality of lives dramatically’
Consider how people living with dementia are normally cared for. It is all too easy for our focus to be on specific tasks and what is important for people such as washing, dressing and nutrition. We often forget what is important to them. This is where my work starts, with the simple question: “What is important to this person?”
Make no mistake, asking this question represents a shift in power and a change in culture. By focusing equally on what matters to people as unique individuals, as well as the things that need to happen to keep them healthy and safe, we can improve the quality of lives dramatically.
This is personalisation in practice and we are working with staff across the care and healthcare sectors to make this happen.
A personalised approach is simplicity itself. Take a single sheet of paper and begin a one-page profile of the person. Describe on one side of paper what is important to this person, how they wish to be supported and what people like and admire about them.
‘You are bombarded with targets and tasks and it is very easy to lose the person when you are wrapped up in all of those things’
The first profile we completed for someone living with dementia was for Arthur. He lived at home with support but wasn’t coping well. My colleague Gill Bailey learned that it was important to Arthur that his food was served piping hot and that someone sat with him while he ate. Carers hadn’t been taking what was important to Arthur into account − and when Gill corrected the situation, Arthur was far more content.
Gill learned what was important to him through different kinds of conversations, for example, by talking about what a good day was like and what a bad day was like.
When those living with dementia are unable to have these conversations, a profile is developed with the family, friends and carers.
In hospitals, where time is pressured, it can be started during the admission process. Fifteen minutes spent by nursing staff asking slightly different questions can transform a patient’s stay.
A quick win
Sue Greenwood, dementia lead at Cornwall’s Peninsula Community Health − a social enterprise commissioned by the NHS that works in close partnership with acute providers and runs 14 hospitals and extensive community based services − calls the profiles as “a quick win”.
‘The profiles contain rich nuggets of information about a patient that will help nurses’
She said: “It is difficult in the NHS. You are bombarded with targets and tasks and it is very easy to lose the individual person when you are wrapped up in all of those things. Even one of the ‘This is me’ profiles introduced by the Alzheimer’s Society, as great as they are, can be four or five pages long.
“My question is: how can I introduce something that will be used and completed by staff and utterly focused on the individual they are looking after? This isn’t about thinking what services this person will need, it’s about asking what this individual will need. It is a big culture change.”
One-page profiles offer real benefits to nursing staff. They contain rich nuggets of information about a patient that will help nurses frame conversations while they are delivering medical care.
For example, nurses learned from George’s profile that he can be distracted by talking about the plants in his greenhouse. Jane’s profile notes that she loves Emmerdale and will happily chat about it while taking his medication.
End of life care
The profiles can make a tremendous difference to end of life care for dementia patients, ensuring what’s important to this person is respected, so that they have the fullest life possible.
‘This tool has particular resonance for those living with dementia, who cannot always speak for themselves’
In a care home setting, a profile will help staff learn what is important to each person in their day to day life. Kenny is a great example of this. He isn’t using words to communicate anymore and his mobility has suffered after a fall. Yet his family knows what it is important to him: following his local football team, tea with two sugars and long bubble baths.
The people who support Kenny in his care home know this straight away, too, even if it’s the first time they have met him, simply because it is written on the page.
Ms Greenwood says that, in her opinion, everyone being cared for, whether as an inpatient or in the community, should have a one-page profile − and that this tool has particular resonance for those living with dementia, who cannot always speak for themselves.
“These are people from our community. They’ve all had enriched lives. If we are going to treat them as individuals we really need to do this,” she says.
Helen Sanderson is chief executive of Helen Sanderson Associates and co-author with Gill Bailey of Personalisation and dementia: A guide for person-centred practice.Beyond life histories is a free booklet by the authors that also features practical ways to deliver personalisation