Why we are backing informal dementia carers

Barry Sweetbaum, founder of SweetTree Home Care Services 

It was just over 20 years ago when I first heard the phrase ‘living with’ rather than ‘dying from’ a terminal illness.  At that time people were speaking about cancer, but we are now saying the same about dementia. 

It is clear that there are many ways in which those with dementia can be helped today to live more active, independent and fulfilled lives.  While interventions may be limited to ‘adding life to years’ as opposed to years to life’, improving quality of life is a very good starting point.   

And it is very possible to fundamentally improve the experience of those with, or caring for someone with dementia, quickly and relatively inexpensively.   A little knowledge and training is all it takes – a low-cost high-impact solution to what is one of the most significant challenges facing our society. 

Think for a moment about the person with dementia.  Although it is wrong to generalise, for the purpose of illustration I will do so here.  Let’s refer to our lady with dementia as Sally and assume she is in a moderately advanced stage of dementia.  Sally wakes up every day thinking it is c1940 (she is in her mid-20s) and opens her eyes to find 2014 staring her in the face.  Everything she sees, hears and watches is in complete conflict to the world her mind tells her should exist.  It’s like waking up in the middle of a science fiction movie that will not go away.   

Sally will most likely struggle to recognise or trust those in her circle of support, including her family, because the people she sees before her didn’t exist when she was in her 20s.  Similarly, the world on the other side of her front door is frightening and surreal so it is probable overtime she will refuse to go out.  

Sally learns that the more she engages with others, the more they will ask of her and therefore she regresses into herself, doing and saying little so people will leave her alone.  When these ‘strangers’ don’t leave her alone and force her to do things like undress, use the toilet and have a bath she challenges them and finds herself labelled as ‘aggressive’.  Her dementia also makes it difficult for Sally to use eating utensils so she is force-fed (as she views it) rather than be allowed to eat with her fingers which she finds comforting. 

For Sally’s family these are not isolated instances of the dementia taking hold of her mind but rather they are examples of the progressive destruction of the person they once knew as their wife, mother, sister and grandmother.  Their actions are all well-meaning but reflective of the fact that they have never been taught how to properly care for someone with dementia.  How much better would the time they spend with Sally be if they had?     

While not altering the progression of the disease, imagine for a moment how much more positive the situation would be if Sally’s family knew how to communicate with Sally in a way which removes the conflict caused by the lack of recognition which Sally experiences.  Similarly, how many more special moments could be created by structuring activities for Sally in a way which ensures that she is happy to engage in them and enjoys better days?   

If specialist care providers like ours, SweetTree, can teach care teams to deliver great dementia care, why can’t we do the same for family members? 

What is clear is that arriving at a cure for dementia is indeed proving to be a massive challenge for society, however supporting people with dementia to live well should not be. That is why we are proud to be supporting National Dementia Carers’ Day 

Taking place on 14 September, within World Alzheimer’s Month, the initiative has been launched to help recognise the massive contribution that family and informal carers make by caring for people living with dementia at home.  

If it weren’t for family and informal carers, more people would be in long term care, more people would have a poorer experience of living with dementia, and the public purse would be worse off by an estimated £8 billion.  

The National Dementia Carers Day campaign is designed to inspire community spirit and to help build more dementia friendly communities - one of the cornerstones of the Dementia Challenge.  By highlighting the efforts of these often forgotten or ‘taken for granted’ carers, by enabling them to share their insights and by celebrating their commitment and efforts, we can help to improve their own experience of caring. 

For more details please visit www.nationaldementiacarersday.org.uk 

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