A different approach to dementia

Most of us have heard of dementia and are aware of its symptoms. But did you know that dementia is actually an umbrella term for a range of brain diseases characterised by short-term memory loss, confusion and personality changes?

Brain aging and memory loss due to Dementia and Alzheimer's disease with the medical icon of a group of color changing autumn fall trees in the shape of a human head losing leaves as a loss of thoughts and intelligence function.We probably all dread it, and many of us will have a relative or friend living with dementia.

We tend to view dementia as a tragedy for the ‘sufferer’ and their family, although in recent years considerable medical and pharmaceutical research has been undertaken into some of the causes of dementia and how its symptoms can be slowed down.

But still vast numbers of people need care, either in their own homes by family, friends or overstretched and under-resourced caring agencies, or in nursing homes.

A new approach

The most common type of dementia is Alzheimer’s disease, ranked first for women and fifth for men as cause of death in the UK in 2012.Since the early 1980s, a small minority of practitioners have been approaching dementia differently. A wonderful man called Tom Kitwood developed a hypothesis which he calls ‘malignant social psychology’, describing how a carer might take over when a person is struggling with certain tasks.

This is usually done with the very best of intentions, but it can cause feelings of disempowerment for the person with dementia. They then gradually relinquish more responsibility, resulting in a vicious spiral as they increasingly lose their self esteem and become objectified.

This issue was tackled by the TV programme Panorama, which exposed how some people with dementia are abused by some care workers. One lady was desperate to maintain her dignity by not soiling her bed. She called out for over two hours for help and when she finally was attended to, her carers were angry with her for the mess.

Malignant social psychology sounds horrific, but Kitwood showed how once this is recognised, we can begin to turn things around. This is done by using our person-centred qualities such as warmth and empathy to try to find out what the person is trying to say.

When carers stop caring…

In that same Panorama programme, a carer was filmed slapping and verbally abusing a lady in her care. That lady, we were told, had been a senior social worker. She would have spent her entire professional life giving and organising care for other people.

Women find it harder to accept care from others than men do, and women who have been health and social care professionals find it hardest of all to relinquish that core identity as givers of care. What might have been different if the carers had put power back into that lady’s control? What if they had said to her “I know, it’s hard for you to have people helping you. What would you like us to do for you?”

Kitwood believes that with a person-centred approach and deep listening it is actually possible for people to experience what he calls ‘rementia’.

We know that babies’ brains are shaped by the type of love and interaction they have, and that one reason teenagers spend so long in bed is because their brains are rewiring.

So it’s not so fanciful to believe that we could support this process in people with dementia by giving them loving attention and stimulation.

The power of memories

Reminiscence therapy is one type of talking therapy which can help, using visual and sensory resources to stimulate memory, feelings and self esteem.

For example, I recently worked with a group discussing wash day. We all held dolly pegs, sniffed soap flakes and remembered the hard physical work of using a dolly tub and ‘posher’ to agitate the clothes in the water, and wringing them out with a mangle.

One lady recalled the joy of moving into one of the first council houses with a bathroom and running water, and this stimulated mischievous memories among the whole group of using the outside privy.

Using old knitting patterns also stimulates memories and discussion – embarrassment as the knitted ‘cozzie’ sagged when wet, the colour-blocked mohair sweater of the 1980s which we thought looked so cool back then, the concentration needed to knit booties for a baby brother as a first project, and the pain of rapped knuckles from nuns at a convent school who expected perfect tension.

Changing our perception

Taking a biographical account of someone’s life can help care workers to understand their behaviours. For example, one lady constantly tapped on hard surfaces to the irritation of everyone in her nursing home, until her niece explained that she had been in the team who deciphered the Enigma Code and she was tapping Morse code. That information turned everyone’s perception around.

The lady was feted as a heroine, photographed for local newspapers and invited to teach Morse to Scout groups.

Become a Dementia Friend

So what can we do to make life better for people with dementia?

The Alzheimer’s Society aims to have one million Dementia Friends by 2015, encouraging communities to become better places for people with dementia.

Dementia-FriendsThis campaign gives five key messages about living with dementia – essentially that dementia isn’t inevitably part of ageing and isn’t just about losing memory. It can affect perception, communication skills and self care too, but with understanding and support people can live well with dementia and, crucially, that there is much more to a person than their dementia.

You might like to consider becoming a Dementia Friend. This means learning a little more about dementia so you can help people in their everyday lives. Things like helping someone find the right bus, or being more patient if someone with dementia is taking a long time to pay at a till. Little things that make all the difference. You could also consider volunteering at one of the Memory Cafés run by the Alzheimer’s Society for people with dementia and their carers.

Please watch the YouTube video above of Henry’s story. It shows people with dementia are not unreachable, and still have so much to give.

Find out more…

Alzheimer’s Society – leading the fight against dementia.

BBC1 Panorama ‘Elder Care Exposed’ 9pm 30th April 2014.

dementia-friendBecome a dementia friend…

You can attend a free information session or view the online video to become a Dementia Friend.

 

 

 

Kitwood T (1993) Frames of reference for an understanding of dementia, reproduced in Johnson J and Slater R (eds) Ageing and Later Life, London, SAGE

Kitwood T (1997) Dementia Reconsidered, Open University Press

Hilary Wellington

About Hilary Wellington

I have over 30 years' professional experience of working with Disabled people, in health and social care and in teaching and support work in higher education. I'm a passionate textiles crafter, and am combining these two threads of my life in my therapeutic crafting and reminiscence therapy social business.

  • Mary Clarke

    This is a lovely article and very much the approach I am beginning to take with my Mum. Unfortunately we don’t have a lot of time to spend with her and it has already got to the point where a lot of her tasks have been relinquished. We noticed, as we played a copy of Mrs Henderson Presents to her, that although she didn’t seem interested in the film as such, she started singing along to some of the songs she knew. I am going to take her to a Dementia Cafe that does music and singing soon.

    Thank you so much for writing this, it is such a help to me.

    Mary

    • Hilary Wellington

      Hello Mary

      Thankyou for your lovely comment. I’m so pleased to hear how helpful you found my article. Memory Cafes or Dementia Cafes are great sources of support for the person with dementia and their carers. Your local branch of the Alzheimer’s Society will be able to help you find a Cafe nearby, and they might also have Singing for the Brain groups in your area. Like Henry in the video, your Mum might enjoy a CD or iPod loaded with songs she likes or that bring back happy memories. Try to find some time for yourself and your own interests too.

      Warm regards
      Hilary