Listen to the people on the dementia ‘front line’

Listen to the people on the dementia ‘front line’

By Jennifer Roberts

www.caringforyourbusiness.co.uk

Just a few years ago it would not have merited a paragraph on page 19 of a national newspaper. Today, dementia is front page news.

2009 will be remembered as the year when most of us become aware of dementia – and the vast numbers who are and will be affected by it.

Our awareness has increased because of the Government’s ambitious Dementia Care Strategy – and author Terry Pratchett’s moving two-part TV documentary about coping with Alzheimer’s disease.

Hardly a day goes by without a new initiative to deal with the dementia ‘explosion’ being revealed and discussed.

Professionals have produced thousands of pages of documents outlining the ‘way forward’ for caring for people with dementia.

Conferences are being held throughout the UK to outline the Dementia care Strategy, how it will be implemented – and at what cost.

But how much time is being devoted to talking to the people on the front line – those who have dementia and their families and carers?

The voice of those living with dementia on a day-to-day basis  is in danger of becoming lost amid the cries for health reforms.

The importance of listening to their needs was emphasised at the recent Scottish Caring Congress, held in Edinburgh.

People with dementia and their partners spoke eloquently about the dramatic changes in their lives – and how they have in many cases been let down by the NHS.

Members of a working group in Scotland – all with dementia – told the congress of the great challenges they had faced.

They recalled how they had:

·         Kept their illness a secret from friends and family

·         Received little help or support from professionals

·         Been stripped of their self-worth

·         Lost their jobs and financial security

·         Been totally disempowered

One member of the working group said dementia had represented a ‘complete theft’ of his life. Another told how health professionals could be ‘patronising’.

Their stories of desperation and how they had gradually come to improve their lives moved many to tears.

Later, at the same congress, a woman whose husband has dementia told in graphic detail the impact her husband’s illness had had on her life.

She said that dementia had robbed her of her partner – of the person she shared her life with and relied on.

‘You become a person’s carer, not their partner,’ she said. ‘I have lost my freedom. When my husband was diagnosed with dementia I spent 20 hours a day in tears.’

She found help through an Alzheimer Society support group in Scotland and it is now playing a key role in helping her to cope.

She urged professionals to listen, to offer more support and counselling to people with dementia and their carers. And she called for more respite care for families.

Carers for people with dementia at the congress revealed how, in some instances, they had not had any respite care or other support for up to two years.

So, as governments and health professionals work out the ‘way forward’ for dementia care, the voices of the people with dementia and their families and carers must be heard.

There is too much evidence at this stage that they are not receiving the help and support they need, particularly at the diagnosis stage.

Professionals at the congress were told in no uncertain terms that now was the time to sit up and listen to those on the front line.

All those at the congress got the message.  Action always speaks louder than words and now is the time for action not words.

Jennifer Roberts

www.caringforyourbusiness.co.uk

Roberts Consultants, specialists in developing home care businesses