Joan Whitelaw was diagnosed with vascular dementia in 2007.
When that happened, her son Tommy parked his previous life to care for her until she died in 2012.
Those five years have informed his new life.
Tommy Whitelaw is now almost constantly on the road talking to health care professionals, medical students and hundreds of others across the NHS in Scotland and England, telling the story of how one small gesture by a nurse visitor to his mother’s home – when both she and Tommy felt at their most isolated and near to despair – made a colossal difference to how he was able to cope with her declining health and mounting care needs.
Amidst the sometimes harrowing details of how Joan Whitelaw’s physical world changed forever as dementia took its toll, Tommy says the greatest tragedy is how the illness erased a great love story from her memory: how she met and married Tommy’s father and their lives together.
It is an experience of loneliness, of a patient’s world shrinking – sometimes to anonymity – which has also informed a new campaign to try to help restore dignity and self-esteem to hospital patients.
Kate Grainger is a consultant doctor who is also terminally ill with cancer.
Her campaign hopes to encourage NHS staff to introduce themselves by name to help build a relationship with their patients.
She says: “I firmly believe it is not just about knowing someone’s name, but it runs much deeper.
“It is about making a human connection, beginning a therapeutic relationship and building trust.
“In my mind it is the first rung on the ladder to providing compassionate care.”
That connection is something which healthcare professionals in Scotland say they have already begun to make across dementia care.
Ruth Mantle, consultant nurse with Alzheimer Scotland, said: “[It’s about] taking the time to find out what really matters to that person, who matters to that person, who’s the best person to speak to, to get that information.
“We use tools such as the ‘getting to know me’ tool up here in Scotland.
“So, absolutely we can all make those small, little differences to include someone’s experience.”
When we filmed a lobby of MSPs at the Scottish Parliament organised by Tommy Whitelaw’s campaign and Alliance Scotland, the new First Minister of Scotland Nicola Sturgeon told us: “Every single, individual pledge that’s made adds up to a transformation in how we care for people with dementia and people who care for them.
“And as long as I’m in politics and as long as I have got any influence in government my pledge is to help and support people who are working so hard to make life better for people with dementia.”
According to official estimates, there are more than 650,000 unpaid carers in Scotland.
Campaigners believe there are in fact tens of thousands more – many of them may not even realise they are a carer.
They hope new legislation – due in the Spring – will help improve conditions for carers across Scotland, through providing individual Support Plans, non-judgemental care assessments and greater responsibilities on local authorities to provide cover to allow carers to take short breaks.
Many also believe one single change could everything for carers: a living wage.
Taken together, they say, both elements would allow carers to manage their role and have a life outside caring.
Said Tommy Whitelaw: “Over and above any policy or strategy, it’s people who change lives.
“And I think the highlight so far on the tour is just meeting those incredible people who are passionate – and compassionate – and want to really do their best to care for people.
“And we’re trying to help them with that story, but also to find out the little things that get in the way of allowing them to do that.
“So along with the pledges we’re asking people: is there anything that would stop you fulfilling this pledge?
“And if there’s a way we can support them, to allow them to fulfil it, we’ll do that.”
Brilliant Scotland will be repeated on Saturday 7 February at 06.00am.
The programme is available on-demand on YouTube: http://www.youtube.com/user/CommunityChannelTV