Tuesday 30 October 2012

Keeping it relevant

Having enjoyed our summer, or perhaps endured it as many UK readers may prefer to recall our latest disappointing attempt at warm, sunny weather, autumn is now well and truly upon us, and with it many sights and sensations that pose both opportunities but also problems for people with dementia.

Aside from the seasonal onslaught of coughs and colds, which any carer will know can not only create far more confusion in a person with dementia but can also be difficult to treat and may lead to secondary complications, the changes in the weather, the clocks going back in the UK (which means we now have lighter mornings but our evenings begin in late afternoon) and the arrival of some particularly noisy and colourful celebrations all create challenges in dementia care.

On the plus side, crisp mornings and carpets of leaves are wonderfully nostalgic for many of us, and for my father autumn always represented a magical season. The autumn of 2011 has particularly fond memories for us as a family – we had our last outing with dad before his health declined towards the latter part of 2011, and we were fortunate to have the most perfect weather for it. A cold, dry, sunny morning that saw us wrap up against the chill (dad looked a bit like the Michelin man with all his layers on) and venture out of his nursing home to the local woods.

There we pushed dad around in his wheelchair, admiring the trees, smelling the clean, fresh air and listening to the leaves crushing under the wheels and our feet, before sitting outside and having hot tea and treats from the café. It was a very special and happy day that gave us some lovely pictures to cherish and memories that will last forever - proof that autumn is a great time of year to get out and about with your loved ones and enjoy the simple pleasures that life has to offer.

October and November also bring with them Halloween and in the UK, Guy Fawkes night, an annual excuse to light bonfires and let off fireworks. Many care homes mark these events, but there are important issues to consider when bringing scary faces, ghosts and ghouls, explosions and flashing lights into the lives of people who may have a very limited understanding of what is going on around them.

Luckily my father always took everything in his stride, such was his nature, but there were some residents who were terrified by fireworks and would cry uncontrollably, whilst others found the flashing lights very disturbing. In a communal setting, balancing the desire to provide fun for some with the need not to distress or frighten others is difficult, but it is a vital part of respecting and understanding each individual. Halloween, for example, is a phenomena that many older people in the UK have little affection for or interest in, which often contrasts starkly with the experiences of the younger people looking after them who may have grown up trick-or-treating, making masks, costumes and having parties to mark 31 October.

During my time singing in care homes in 2011 (which you can read more about here), I was booked to do Halloween shows, Bonfire night celebrations and Remembrance Day events. Halloween involved a room full of residents most of whom had hats, masks or other costumes on, and all of whom completely lacked engagement with the staff who were dressed in full Halloween regalia – indeed even the Halloween inspired food did not interest the residents, with many of them struggling to understand what the buffet items actually were!

The bonfire gig had a better atmosphere, but some residents were upset by the fireworks whilst others were worried that the bonfire could engulf the building. By far the most successful events were those held to mark Remembrance Day. The residents loved being dressed up, enjoyed the decorations in the home, interacted very well with the staff (who were all in costumes), joined in the singing and flag waving and some even danced.

There is a legitimate argument that says you need to be careful with wartime reminiscence since it can bring back very painful memories of suffering and loss, but my experience was that it brought a very positive blitz-like spirit to the homes I visited, with everyone entertaining each other, smiling, laughing, reminiscing and for people with particularly advanced dementia, interacting in a way that they never normally did.

For me the lesson here is about keeping celebrations relevant. Not celebrating what we as people in our 20’s, 30’s, 40’s or 50’s may be interested in, but what people in their 60’s, 70’s, 80’s, 90’s and beyond remember and identify with in a positive way. Of course what for one person is a cause for celebration is, for another, something to dread (a bit like Christmas, which I will write about nearer the time). Equally there are also many cultural and religious reasons why people may not wish to celebrate certain festivals, but they may be unable to express that due to their dementia, or express it in a way that does not make the source of their discomfort clear.

However, it is often possible to think your way around these problems. For example, I recently read an interesting comment from an Activities Co-ordinator who said that instead of celebrating Halloween with her residents, she would be involving them in lots of harvest-related activities. Back when our parents and grandparents were young, harvest was a very important time in the calendar as they stored up the food that would see them through the winter (before the days of supermarkets!), so celebrating that is a great example of thinking about what older people with dementia would understand and feel motivated to engage with.

Sadly for those caring for people with dementia, this disease does not come with a rule book. One of the most important assets anyone caring for someone with dementia can have is common sense, which is often more likely to be found in the way we look after children or animals than it is when caring for people with dementia. So my advice when planning celebrations – be sensitive, be thoughtful, and most of all remember that people with dementia have very acute feelings and emotions. Our job is to enhance their quality of life, not diminish it.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

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