17th November 2017

Hearing The Voice Of The Person With Dementia

Last week, I was honoured to be part of the 8th National Dementia Care Awards, which were sponsored by QCS. It was a great night out, and immensely inspiring: I know that everyone there will be learning from the winners and finalists, and putting into practice the ideas we heard about.

What I loved most was the way all the initiatives were so focused on improving the lives, and the care, of people with dementia by making sure their uniqueness is recognised.  And I was so impressed by the simplicity and practicality of the ways they found to do this.

Entering Someone’s World

An example is Mycarematters https://www.mycarematters.org, finding ways of using a ‘Remember-I’m-me’ wall-chart or, these days, the internet, to highlight the nuggets of information that bring home to staff the individuality of the person. Its creator, Zoe Harris, writes that when her husband moved to a care home ‘it seemed really important to me that the staff knew something about him. Not only the basics like his favourite foods and drinks, but to help them understand why he might ask them to measure the room and order bricks – he’d designed and built houses for most of his career! When carers understood what was going on, they were able to enter his world.’

I keep thinking about that: how we can ‘enter the world’ of the person living with dementia, for their benefit but also, of course, for ours.

Best Practice

I know of people with dementia who’ve always loved animals or music, or who’ve worked with children or in care homes: when they are able to continue in some way with these lifelong passions the quality of their lives improves enormously. Also, of course, their happiness and self-esteem are increased: as an ex-dog handler for the police put it to me, going for a walk with a dog makes him feel himself again. Jilly has a learning disability and rarely speaks. She was brought up on a farm and loves country walks where she will tell staff what she thinks of the management of the neighbouring farmer’s sheep – she won’t hold back, and she’s likely to be spot-on! And work becomes a pleasure when staff see an interesting whole person rather than just the results of their condition: Jilly’s staff say they’ve learned a lot from her.

Mental Capacity Act (MCA) Compliance

This real person-centred approach is at the heart of the MCA. When you’re making best interests decisions, the checklist of factors which you must, in law, consider is based on the past and present wishes and feelings of the person, on their unique history, and on what’s important to them.  But how can you find out what the person who’s lost capacity wants now, or would have wanted if they could make this decision? How could you decide what the person would want, who’s never had much decision-making capacity?  It’s so important, and I can’t pretend it’s always easy: it certainly means you must pay attention to any sources of information you may have, including useful ‘This is Me’ materials.

Listen To The Person, Their Relatives And Friends

A person may have no speech; this doesn’t mean you can’t ‘listen’ to what’s important to them. Does their favourite music set their toes tapping? Do they show visitors the new sparkly nail varnish put on by a carer? Maisie used to manage a care home, and did it well. Living with dementia, as a resident in another home, she’d somehow know when the morning handover meeting was taking place.  Maisie had lost all speech, but she’d sit at the back, and smile, nodding approvingly. When a new staff member queried this on data protection grounds, the manager pointed out that Maisie was not going to share any secrets.  The manager, who’d been told of Maisie’s past by her proud children, was happy to recognise the years of care she had herself given.  Without doubt, and with no need for words, this was the highlight of Maisie’s day.

This is why you should regard relatives as gold dust, and really value their insights about the person: they know this individual better than you ever can, and will enrich your understanding of how to ‘enter their world’.

Be Curious About The Person Behind The Diagnosis

If someone has no relatives or friends to explain what’s important to them, it’s even more important to pay attention to what their behaviour and reactions tell you. Jim’s key worker, Saima, got him talking about some photos he had, and discovered that a daredevil adventurer was not far below the surface of the sad, depressed man with dementia. Saima found out Jim had been a fighter pilot in the war and was shot down over Burma. He was wildly enthusiastic about the sea, and in his 80s he’d been sailing and diving in the south Pacific. Saima was excited and shared her knowledge of Jim in a team meeting. Soon Jim, supported by a carer, was guest of honour at the diving club dinner, and invited to show his photos at the sailing club. Staff realised how important it was to him not to be ‘mollycoddled’. So, as individuals, and not because they were told to, they made the extra time to keep him walking as well and as often as he could. They could see benefits to Jim when they ‘entered his world’ and they gained real satisfaction by doing so.

As the National Dementia Awards showed so movingly, it’s simple when you get it right.

*All information is correct at the time of publishing

Rachel Griffiths

Mental Capacity and Human Rights Specialist

Rachel has huge experience and knowledge in the area of Mental Capacity, including how to recognise deprivation of liberty, when and how to assess capacity and how to go about making decisions in someone’s best interests. She is nationally recognised as a leading voice with regards to Mental Capacity, and is involved with setting the agenda as well as providing advice and information about Mental Capacity. The information, guidance and support that Rachel provides helps to ensure that the way people work is within the law and recognises that the person using services is always at the centre of any decisions made. Read more

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