Director Irene Oldfather and Project Engagement Lead Tommy Whitelaw were guests on the John Beattie Show last week after being invited on to speak about caring for a loved one living with dementia, and the difficulties people often face in obtaining information and support.
The discussion was prompted after the Alzheimer Society releasing the results of their latest survey of GPs, which found that 50% of GPs in England don’t think that their patients living with dementia get enough support from the NHS, and more than three quarters (77%) of GPs think their patients living with dementia are having to rely on family members as they don’t get enough support from health and adult social services.
The results from England mirror the same issues that were apparent in our report “The Caring Experience“, where 54% of respondents said that the level of information and support they received after diagnosis was either below average (21%) or very poor (33%).
On the show, Irene and Tommy spoke about what’s going on in Scotland to help. Tommy spoke of his experiences when caring for his mum Joan, and how often they did not know about supports that would have helped until they were no longer appropriate.”We had certain services in place but it was a fragmentation of services not speaking to each other and too often not speaking to us. We need to get better at asking key question of what matters and who matters to people, and if we start with those conversations we’ll be able to put the right services in place.”
Irene then went on to speak about the Post Diagnostic Support guarantee, which states that everyone diagnosed with dementia after April 2013 has the right to a dedicated Link Worker for one year, who will help them navigate their way through health and social care, available supports and what a diagnosis means in order to support people to live well with dementia. She highlighted the need for improvement, saying “Consistency is an issue, and we know that unfortunately Tommy’s story is not unusual, and I think that it’s really important that we put in place consistency across Scotland around the support that we deliver.”
Irene also spoke of the need to learn from the people with lived experience “we listen to real stories of people on the ground and in our communities, take those stories to the heart of government and make sure they influence policy”.
“We all have to take ownership of this – it’s not always ‘someone else’s problem’ – dementia is everyone’s business.”
You can listen to the interview in full at www.bbc.co.uk/programmes/b0612p2m. The discussion on dementia takes place at around 14.14 minutes in.