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Campaign launched to tackle stigma around dementia in the workplace

1 June 2016

Today, during Dementia Awareness Week, Age Scotland and STUC have announced they are to work together to raise awareness of dementia in the workplace. This collaboration has been welcomed by leading dementia campaigner Agnes Houston, whose own dementia diagnosis resulted in her having to leave work suddenly. Both organisations are concerned that while employees with dementia can be supported to remain at work for as long as they can, currently many are given little option but to leave their employment and others are losing their jobs even before they have a diagnosis.
STUC and Age Scotland's Early Stage Dementia Project have published a guide for trade union workplace representatives. The guide has been produced so trade union reps and others can be aware of the signs and symptoms of dementia and better able to support colleagues who have to cope with receiving a diagnosis and the impact it has on their employment. They are also organising a joint event to be held in September where workplace representatives will be given dementia awareness training and hear from people with dementia about the impact it has on their working life.  Age Scotland's Early Stage Dementia Project is supported with funding from the Life Changes Trust.  The Trust is funded by the Big Lottery.
Backing the campaign, Agnes Houston said:
'I had a good work history then dementia comes along, abilities diminish, I see a consultant, receive a diagnosis. Dementia of the Alzheimer type. No more job. That was 10 years ago. I received no counselling, no transition from work to retirement due to disabilities. No leaving party.
'Instead I was left feeling worthless with no purpose, a big sense of failure. Let's change this experience! Why? Because it's the right thing to do and also it's an infringement of my human rights.'
Statistics show people in Scotland would be far more willing to tell their family about a diagnosis of dementia rather than their employer. Just 17% would not want their family to know, but 38% would not want to tell their employer1. The STUC and Age Scotland will also build on pioneering research into the impact of dementia on employees and support employers will provide, with the University of West of Scotland and Heriot Watt University have undertaken a major study for the Alzheimer Society2. 
Brian Sloan, Chief Executive of Age Scotland said:
"We are delighted to be able to work with STUC on this vital campaign. With an ageing workforce in Scotland and the end of automatic retirement age the numbers of people in work who have dementia or are caring for someone with the condition set to increase. It is important people with dementia can be supported at work for as long as they can and want to be, but too often this has not been case. However many employers have also successfully supported people with dementia at work and through our dialogue with organisations like the Federation of Small Businesses Scotland and Healthy Working Lives we will provide more information and advice to employers on how better to support people with dementia."
Ian Tasker, STUC Assistant General Secretary said:
"The STUC believes that for everyone diagnosed with long term conditions such as dementia, continuing in employment is vital in helping individuals maintain their independence, their financial security and, just as importantly, the social interaction with friends and colleagues that ensures they do not become excluded and isolated from society.  It should not be any more difficult to make reasonable adjustments to accommodate a workers diagnosed with dementia than any other long term condition and trade unions have a role to play in ensuring employers do not run away from their legal requirements to make reasonable workplace adjustments to allow workers to continue in work as long as possible. Our guidance aims to provide reps with information on dementia and where they can go to get expert advice to support their members."
Louise Ritchie of the University of West of Scotland said:
"Our recent Alzheimer's Society funded research project ‘Dementia in the workplace: the potential for continued employment post diagnosis' found that people with dementia can continue working post diagnosis for many years with the correct support, but for many a lack of support can lead to a premature exit from the workplace, leading to negative consequences for them and their family. It highlighted the need to raise awareness of the issues surrounding dementia in the workplace to the general public and in particular with employers. We are delighted that the findings of our research have informed the guide for union reps developed by Age Scotland and the STUC and look forward to continuing to work with both organisations on this issue."
STUC, Age Scotland, dementia campaigners join forces for more support for employees

Today, during Dementia Awareness Week, Age Scotland and STUC have announced they are to work together to raise awareness of dementia in the workplace. This collaboration has been welcomed by leading dementia campaigner Agnes Houston, whose own dementia diagnosis resulted in her having to leave work suddenly. Both organisations are concerned that while employees with dementia can be supported to remain at work for as long as they can, currently many are given little option but to leave their employment and others are losing their jobs even before they have a diagnosis.

STUC and Age Scotland's Early Stage Dementia Project have published a guide for trade union workplace representatives. The guide has been produced so trade union reps and others can be aware of the signs and symptoms of dementia and better able to support colleagues who have to cope with receiving a diagnosis and the impact it has on their employment. They are also organising a joint event to be held in September where workplace representatives will be given dementia awareness training and hear from people with dementia about the impact it has on their working life.  Age Scotland's Early Stage Dementia Project is supported with funding from the Life Changes Trust.  The Trust is funded by the Big Lottery.

Backing the campaign, Agnes Houston said:

'I had a good work history then dementia comes along, abilities diminish, I see a consultant, receive a diagnosis. Dementia of the Alzheimer type. No more job. That was 10 years ago. I received no counselling, no transition from work to retirement due to disabilities. No leaving party.
'Instead I was left feeling worthless with no purpose, a big sense of failure. Let's change this experience! Why? Because it's the right thing to do and also it's an infringement of my human rights.'

Statistics show people in Scotland would be far more willing to tell their family about a diagnosis of dementia rather than their employer. Just 17% would not want their family to know, but 38% would not want to tell their employer(1). The STUC and Age Scotland will also build on pioneering research into the impact of dementia on employees and support employers will provide, with the University of West of Scotland and Heriot Watt University have undertaken a major study for the Alzheimer Society(2). 

Brian Sloan, Chief Executive of Age Scotland said:

"We are delighted to be able to work with STUC on this vital campaign. With an ageing workforce in Scotland and the end of automatic retirement age the numbers of people in work who have dementia or are caring for someone with the condition set to increase. It is important people with dementia can be supported at work for as long as they can and want to be, but too often this has not been case. However many employers have also successfully supported people with dementia at work and through our dialogue with organisations like the Federation of Small Businesses Scotland and Healthy Working Lives we will provide more information and advice to employers on how better to support people with dementia."

Ian Tasker, STUC Assistant General Secretary said:

"The STUC believes that for everyone diagnosed with long term conditions such as dementia, continuing in employment is vital in helping individuals maintain their independence, their financial security and, just as importantly, the social interaction with friends and colleagues that ensures they do not become excluded and isolated from society.  It should not be any more difficult to make reasonable adjustments to accommodate a workers diagnosed with dementia than any other long term condition and trade unions have a role to play in ensuring employers do not run away from their legal requirements to make reasonable workplace adjustments to allow workers to continue in work as long as possible. Our guidance aims to provide reps with information on dementia and where they can go to get expert advice to support their members."

Louise Ritchie of the University of West of Scotland said:

"Our recent Alzheimer's Society funded research project ‘Dementia in the workplace: the potential for continued employment post diagnosis' found that people with dementia can continue working post diagnosis for many years with the correct support, but for many a lack of support can lead to a premature exit from the workplace, leading to negative consequences for them and their family. It highlighted the need to raise awareness of the issues surrounding dementia in the workplace to the general public and in particular with employers. We are delighted that the findings of our research have informed the guide for union reps developed by Age Scotland and the STUC and look forward to continuing to work with both organisations on this issue."

(1) Findings from the Scottish Social Attitudes Survey 2015

(2) Ritchie, L., Banks, P., Danson, M., Tolson, D., & Borrowman, F. (2015).  Dementia in the workplace: A review.  Journal of Public Mental Health, 14, 24-34.