Nicci Gerrard is a novelist, journalist, and the co-founder of John’s Campaign, which insists that the carers of people living with dementia have the same rights as parents of sick children to accompany them when in hospital. The campaign, inspired by her father John who lived with dementia for many years, has helped transform hospital culture.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
Hospitals can be hazardous for people with dementia, especially if they are unaccompanied by those who know them best and who can act as their memory, their voice, their tether to the world. In just over three years, John’s campaign has transformed hospital culture. Almost every acute hospital in the UK now welcomes carers and recognises their value.
With my co-founder Julia Jones, I’ve visited hospitals, talked at conferences, written articles and given interviews. We are fighting, not for a change in the law, but in attitudes. We’ve never received any money. We have no staff or offices. We’re not an organisation but a movement for change; movements belong to everybody.
What was your motivation for getting involved in the field of dementia?
My father, John Gerrard, lived with dementia for many years. When he was in hospital for leg ulcers, we were prevented from seeing him, first by restrictive visiting hours and then by an outbreak of norovirus. He was mobile, articulate, healthy and happy. Five weeks later he was skeletal, incontinent, malnourished, dehydrated, inarticulate and irrecoverably wrecked. His last nine months were a radically slowed-down dying. The campaign was given to me; I had no choice.
What would you say has been your greatest achievement or highlight?
There are many cases in which people would have spent the last weeks of their lives alone and scared, but because of the campaign have had good deaths, accompanied by those who love them.
To extend more into residential settings – because who knew that there are visiting hours in many homes? (Which makes a nonsense of the world ‘home’).
If you could change one thing now to improve the lives of people living with dementia, what would it be?
To change the way that we view those who are being picked apart by an illness: to say ‘us’ and not ‘them’
And another thing:
Dementia forces us to ask ourselves: what is it be a member of society; what is it to be human?