“It’s a very lonely time; it’s terrifying. You actually think your life is over. That’s how I genuinely felt – life was done, he was dead, it was over.”
This is how Karen Lau felt two years ago, when her partner Francis Walsh was diagnosed with frontotemporal dementia.
At the time he was only 57 and one of 4000 people in Scotland with dementia under the age of 65.
“We had a time when the system did fail us,” said Karen, from Glasgow.
“The system is big and, because of his young onset, no-one knew where to put us. After three months, I phoned the early onset team at Gartnavel in crisis and that’s how I learned about Alzheimer Scotland.
“Susan Rendell from the charity phoned me and said: ‘I can help, can I come and see you?’ at a time when you’ve closed your door.
“But listening to her, the shutters came off, the sun came in and I thought maybe this is not as bad.
“The message was that you can live with dementia. Life was not over.”
Susan is a link worker with Alzheimer Scotland, helping those who have just been diagnosed with dementia and their families through education, signposting and peer support.
This post-diagnostic support (PDS) service aims to help people maintain a sense of who they are at a time when a disease is determined to take it away. It utilises the support network of friends, family and the community to fight a disease so stigmatised it can lead to social isolation.
It aims to empower individuals to make choices and decisions while they have the capacity to do so and remain independent, which keeps them out of a care home or hospital for as long as possible.
The charity believes the approach is turning dementia care completely on its head, offering an entirely new way of supporting the person rather than only medically-managing the illness.
It is the result of years of research following a call from patients and families for more practical support around the time of diagnosis.
In 2013, the Scottish Government unveiled a world-first national commitment to improve PDS and endorsed the methodology developed by Alzheimer Scotland.
The guarantee said that every person with a new diagnosis of dementia in Scotland would receive a minimum of one year’s support from a link worker by 2015/16.
Last month, the first robust analysis of how the guarantee was being delivered was published, revealing how each NHS board performed in 2014/15. It showed that the gap between policy and practice was too wide.
Just two out of every five newly diagnosed dementia patients were being referred for the support. Of the 6660 who were referred, 2600 were unable to complete PDS for a variety of reasons –including lack of funding.
While Alzheimer Scotland aims to keep pushing for investment to employ more trained link workers and there is more work to do, it said significant progress had been made.
Henry Simmons, chief executive, said: “Since 2013 there has been substantial investment in the number of link workers employed by Alzheimer Scotland, the NHS and health and social care partnerships.
“ What we are trying to do is a huge social innovation and transformation – and that takes time.
“We know that the longer people live a good quality life, supported by their community and their natural support, the better that is for the person, their family and the whole health and social care infrastructure because we’re using natural assets rather than paid-for interventions.
“We know that if people are left on their own, they are admitted too quickly into hospital, residential care or day services – sometimes two or three years early.
“But shifting the paradigm is challenging, so actually it’s good where we are. The last thing we want is for a lesser quality of care and support to be put in place just to meet a target.
“We also underestimated the incidences of new dementia cases so we’re seeing a greater demand for the service.
“But we have visitors from all over the world and they are really interested in the fundamental shift from a medical-based model to a human rights driven approach which puts the person and their family at the centre.
“We can’t rest on our laurels, we have to drive that and it’s incumbent upon us to research and build the practice, social, emotional and financial evidence that this is the right thing.
“What we’ve got is a vision – a good, quality national dementia strategy which is starting to deliver change.
“We’re involved with dementia on an international level and everyone wants a bit of what Scotland’s doing.”
Karen (52) added: “The encouragement I’ve had means I can be proud of how I care for Frani. I have confidence I’m doing what he wants because we had those discussions early. Without this support, I would not be coping and I would have destroyed myself trying to save him and I would have saved none of us.”