14th December 2016

‘Curl Up & Dye’ – Dementia Action Alliance (DAA)

'Curl Up & Dye' - Dementia Action Alliance (DAA)

One of my all-time favourite films is The Blues Brothers, where Carrie Fisher’s character, who had been stood up at the altar, is on a crazy quest to kill the rat who did it.  We see her, in her hairdressing salon ‘Curl Up & Dye’, reading a manual on flame throwers… it’s a complicated story, in a funny and life-affirming film.

I thought of Carrie’s salon, however, at the Dementia Action Alliance (DAA) splendid conference, sponsored by QCS, last week.

And what took me to that awful punning title?  A couple of things.

Dementia Action Alliance

The first thing was reading the Foreword to the impressive DAA Annual Report, written by affiliate members Chris, who lives with dementia, and Jayne, described as his ‘wife, PA, logistics manager and carer’ (whew).

They wrote:

Our favourite campaign was the very successful ‘Dementia Words Matter.’  Dementia has enough negativity without all the ‘curl up and die’ words that are used in our society, especially from the press, that actually promote stigma about the illness.

‘Curl up and Die’ language

And we all know what Chris and Jayne are talking about: the hushed voices, the stereotyping of a person based just on a diagnosis, the assumption that everyone with a certain diagnosis is the same, rather than still the same individual with their history, achievements, wishes and feelings.

It was great that so many of the people there were living with dementia in one way or another, whether with a diagnosis or supporting someone they love.  They made this conference unusual and most refreshing, whether as speakers telling us of their lives, their loves, and their achievements or as audience members - telling off a speaker from a political background for talking about ‘suffering from’ dementia. ‘We aren’t ‘suffering from’, she was sternly told, we are ‘living with.’ A huge difference.

Support the person, not the dementia

I’ve come away from this inspiring conference even more committed to encouraging ‘Dementia Words Matter’.  How about a challenge to your staff to get to know an individual in their rounded whole?  I loved it when a care worker told me that she always puts Ken’s music on before helping him with personal care because he used to sing in a Kinks cover band: ‘I’ve got to know the songs, Ken and I sing them together – and we sang ‘Lola’ together at the home’s open day, my mum was so impressed!’  No trace there of the ‘curl up and die’ mentality: she sees Ken, not the dementia.

This is the approach that makes it effortless to work within the principles of the Mental Capacity Act (MCA), because you’ll be doing it anyway.  You’ll be naturally:

  • Assuming someone can make their own decisions rather than presuming they can’t, just because of a diagnosis or how they look;
  • Doing all you can to enable people to make their own decisions about how they live;
  • Remembering that an ‘unwise’ (in your opinion) decision doesn’t mean of itself that someone lacks capacity for that decision;
  • Knowing the importance of involving the person in making a best interests decision, even if they do lack capacity for the decision – and that, to do this properly, you have to know their wishes and feelings, their history and personality;

Searching always for the ‘least restrictive option’ to meet a specific need.

*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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