Making dementia care personal

1 Apr 2013 10:51 PM

People diagnosed with dementia will see a “significantly improvement” in the help and advice they receive when a new national commitment comes into force as of April 1, Cabinet Secretary Alex Neil has pledged.

The first of its kind in the world, the commitment will see a named support worker creating tailored care plans to help people with dementia and their families understand the illness, manage its symptoms and plan for future care.

The commitment is based on advice from Alzheimer Scotland and was made possible following significant research and practical work by the charity to address this major public health issue.

Up to 86,000 people are estimated to have dementia in Scotland, a number that is expected to double over the next 25 years. This commitment by Ministers is part of Scotland’s first National Dementia Strategy, launched in 2010. The Strategy will be updated further in June this year and will continue to focus on improving services for everyone with the illness, regardless of the stage of their illness or where they are being cared for.

Cabinet Secretary for Health and Wellbeing, Alex Neil, said:

“From personal experience, I know what it means to have family members with dementia get the dignified care they deserve.

“Being diagnosed with dementia must be a tremendously difficult time. It also places huge strain on partners and families.

“That’s why I’m delighted that this commitment is in place - it shows just how much we prioritise older people's care.

“This additional support will help people with dementia and their families and carers in adjusting to the diagnosis, navigating through the range of services available and planning for future care.

“It builds on Scotland’s strong performance on increasing diagnosis rates and strengthens our focus on promoting the right of people with dementia to care and support that is dignified, personalised and empowering to them and their family.

“This initiative will significantly improve quality of life for people with this illness, ensuring they and their families are equipped to deal with the impact of a diagnosis and can plan for a future that enables them to stay connected to the community.

“Getting the right support in place at this stage of the illness is critical.”

Henry Simmons, Chief Executive of Alzheimer Scotland, said, “We are delighted to see the Post-diagnostic Support Guarantee now being rolled out across Scotland. This is a world-leading commitment. We are convinced that this will transform the lives of people with dementia, their partners and families, who for too long have been forced to come to terms with their diagnosis alone and unsupported.

“Our pilot work in Renfrewshire and East Renfrewshire has shown that this model can make a huge difference in how people are able to cope with the illness and highlights the improvements that follow when a person with dementia is put at the very centre of decision-making regarding their care and support.

“However, while this will greatly improve support to those newly diagnosed, we must also tackle the wide-ranging problems currently faced by people with dementia, their carers, partners and families who are at a later stage in the illness. They too require support that is person-centred, comprehensive and available across Scotland.”

Case Study

Henry Rankin from East Renfrewshire tells how post-diagnostic support he received through the Alzheimer Scotland pilot helped him and his family come to terms with vascular dementia.

Speaking about being diagnosed with vascular dementia at the age of 58, Henry said: “It was dreadful. Absolutely dreadful. There’s no other way to describe it. I didn’t even know what vascular dementia was. I thought it was all over, that I had six months left to live.”

Provided with no more information and feeling that he had no-one to speak to, he walked out to the street and burst into tears.

After months of trying to find out the cause of his memory problems and receiving little in the way of answers, it seemed like the final straw. He and his family were forced to look online for information about his illness, but could never discover what they really wanted to know: how to cope with dementia and what Henry’s future was, if any.

Henry describes himself as fortunate that he was able to take part in the Alzheimer Scotland’s pilot Facing Dementia Together project, which provides information and support to people recently diagnosed with early stage dementia, their families and friends.

“I can’t praise Tracy Gilmour, Manager of the project highly enough,” says Henry. “She put me at my ease straight away. She reassured me, gave me my confidence back. Getting my diagnosis had knocked the wind right out my sails, but she got me back on track. She spoke to my family too, gave them lots of information and advice. Best thing was; she was always there. We could speak to her at any time.”

Tracy was able to put Henry and his family in touch with the various people, groups, public sector agencies and other organisations required to help the Rankins’ plan for future legal, financial and care needs, as well as assisting them with the form-filling involved.

As Henry points out, “If someone is told they have cancer, they’re pointed toward people that can help them. That didn’t happen to me. They need to get diagnosis and post-diagnostic support right for people with dementia and their families. I’m glad the government’s made a commitment to making that happen. It’s brilliant news!”