Barry Northedge, member of the European Dementia Carers Working Group, writes about participating in a new film about dementia in the workplace, together with his wife Margaret. Scotland’s Dementia Awareness Week saw the launch of the film, Dementia in the Workplace - “Guidance for Life, Work and Career”. This was the culmination of a co-production research project, funded by the Alzheimer’s Society, which aimed to explore the issues people faced when getting a diagnosis of dementia whilst still in employment, particularly pertinent to people diagnosed with Young Onset Dementia (YOD). Margaret, my wife, was just 54 when she was diagnosed with YOD, she was still working in a job that she loved but that soon came to an end as her employer did not understand the problems she was trying to deal with.
This research was personal! The co-production team consisted of six people living with dementia, two carers, six professionals from career guidance and health and social care and two academics from the University of the West of Scotland, all meetings were conducted on line and all meetings were recorded by a visual artist capturing the essence of discussions. There is no doubt that the lived experience of dementia was both central to the research and absolutely valued by all involved. There is also no doubt that those with lived experience appreciated the opportunity to be fully involved and to have their experiences, views and suggestions equally valued. On more than one occasion it was commented that ‘being involved in the research was like being back at work’, something sorely missed. Many people diagnosed with dementia whilst still working have negative experiences hence there is clearly a need to create support for them to make and take decisions about their future whether that be remaining in employment or about a new direction for their ‘career’.
This is where the links with the career guidance professionals on the team were vital. They were able to take a person-centred approach to developing coping strategies, looking at reasonable workplace adjustments or in taking the decision to leave work for other opportunities. Opportunities which needed a non-traditional view of career. We needed to accept that continuing work may not be a reasonable option for everyone but a diagnosis should not stop people from contributing in other ways such as volunteering or joining groups such as the Scottish Dementia Working Group, which members repeat ‘is just like work”!
The project outlined the potential for career guidance to make a positive difference to the lives of people diagnosed with dementia if we accept a definition of career being about much more than paid employment. So, that brings us back to the film. Using the personal testimonies and experiences of people living with dementia, the research makes a compelling argument to address the issues of dementia and employment in a positive way through guidance and support. The film is available to view here: https://youtu.be/gIFAykUByFg Look out for the presentation in Geneva! This research was funded by the Alzheimer's Society.
Pictured: Members of the Scottish Dementia Working Group and National Dementia Carers Action Network attending ‘Dementia in the workplace’ film launch (with Barry and Margaret attending virtually)
