We must make sure kindness is at the heart of dementia care

Ahead of World Alzheimer's Day, Irene tells us about the impact compassion, kindness and care can have on people living with dementia.

As we approach World Alzheimer’s Day tomorrow, it is worth reflecting that dementia isn’t a memory problem in old age, it’s a complex and multi-faceted illness. It is such an individual illness that no two people are the same, no two days are the same, no two experiences are the same, and there is no one solution that will fulfil the needs of all.

Recent statistics show that dementia is now the leading cause of death for Scottish women. Dementia and Alzheimer’s claimed the lives of 4,384 women in 2017, compared to 2,693 deaths from heart disease.

Beyond statistics, there are hard stories to hear. An analysis that we undertook about the impact of diagnosis on people and their families showed people experience a sense of loss – confidence, independence, skills, friends and sometimes even a sense of self. So how are we doing? With the hundreds of pages of strategies, standards, and charters, is the quality of care as good as we would hope for?

The dementia strategies and Charter of Rights made huge strides forward. Alongside that we have Dementia Champions, Friends and our Dementia Carer Voices project reaching out to thousands of people.

But there is still a good distance left to travel. How can we narrow the gap between policy and implementation, between rhetoric and reality between the real experiences of people living with dementia and especially advanced dementia in Scotland and the policy frameworks?

It’s not just about the money – but that is part of it. There is no time for compassionate care in 15 minutes. It can’t be right that 24/7 nursing care according to Scottish Care is sometimes being delivered at a cost of less than £5 an hour. And that those who take care of our most vulnerable people can get paid less than those who work in a supermarket.

Would we expect someone with a first aid certificate to be working in an intensive care unit? Can you imagine how families would feel? And yet many staff taking care of our vulnerable elderly still don’t have sufficient access to specialised training.

A report published by the Care Inspectorate of December 2017 showed that we could do far more to protect the rights of people living with dementia in Scotland. For example, in 57 per cent of care homes, a majority of staff did not know about or use the personal information that had been gathered about residents. Ten per cent of care homes did not provide any opportunities to keep residents active and engaged and six per cent had no provision whatsoever for ongoing organised activities.

Work by Professor Mike West of The Kings Fund found that if we want staff to treat patients with compassion, care and dignity then we must treat staff with compassion, care and dignity. His research showed that staff experience was the biggest predictor of patient outcomes. Where we have high levels or staff stress and unhappiness, we experience poor financial performance and patient outcomes.

It’s that simple – care, compassion and kindness work. Unkind systems are not effective. Dementia is our business, it`s everyone business – everyone can be a compassionate leader for change.

As we approach World Alzheimer’s Day will you be an advocate for the quiet voices of people with advanced dementia? The people who are not here today, those who are sitting quietly in their chairs, maybe looking out their windows, hoping for a kind word or a touch or a visit to interrupt their lonely day, those who depend on us to bring about that culture change. Will you be part of an army of compassionate leaders? Will you be that change?

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