As part of the All Party Parliamentary Group on Dementia’s new inquiry, people living with dementia have spoken up about their treatment in the workplace. Hear Chris's story and read what this report tells us about dementia and disability rights.
‘In 2016, I was diagnosed with vascular dementia when I was 60. It was agreed with my doctor that I would do a phased return to work, however I was told that my work was not ready for my return. I went back to work anyway and I found that my desk had been moved to the corner. I felt wholly unsupported.
I was told to re-read policies and procedures which weren’t making sense to me anymore. I was put on a disciplinary process for people who underperform at work and eventually I retired on ill health. I would have carried on working in a different role however this wasn’t even an option. Within three months of my diagnosis I lost my job and I got depression.’
- Chris, who is living with vascular dementia
Chris was one of over 2,500 people that submitted evidence into the All Party Parliamentary Group on Dementia’s inquiry into dementia and disability. Thousands of other respondents, like Chris, shared how they felt living with dementia has impacted their lives, and how they are viewed in society.
Dementia as disability
The APPG inquiry, backed by Alzheimer’s Society, has found that 98% of respondents feel that people living with dementia are treated differently to people with other health conditions or disabilities. They believe this is due to the ‘hidden’ nature of dementia, as well as the condition's individuality and surrounding stigma.
Dementia is a disability and, as a disability, people living with dementia have certain rights. These rights are enshrined under the Equalities Act 2010 and the United Nations Convention of the Rights of Persons with Disabilities.
81% of respondents to our inquiry agreed that dementia should be identified as a disability. But their evidence shows that society is lagging behind and failing to uphold the legal rights of people with dementia.
A huge issue
The report addresses many aspects of people lives – including social protection, transport, housing, social care and community life. But how people are treated in work, or their ability to get work, proved to be a huge issue for those living with dementia.
We know that this will become more and more important in the coming years. Statistics show that nearly 1.2 million people over the age of 65 are already in work, with this figure expected to rise.
As we live and work longer, it is integral that employers are prepared to address the needs of people like Chris, to ensure that those with dementia are properly supported.
What the report recommends
To fix this, the report recommends that the Government should revise its guidance to employers about their responsibilities to support disabled people. This should include explicit reference to cognitive disabilities, such as dementia. By doing this the Government can ensure that people living with dementia, like Chris, are never put through this stressful ordeal again.
The report also recommends measures to level the playing field for those who are living with dementia and seeking employment. These measures include looking at the Access to Work programme to ensure it benefits people with dementia.
Need for action
Channel 4’s excellent TV series ‘The Restaurant That Makes Mistakes’ has shown how people with dementia still have so much to contribute to the workforce and wider society. It also shows the important role that employers have in this – to ensure that they are prepared to make reasonable adjustments and offer employment to those living with dementia.
It is clear from the many people that submitted evidence to the inquiry that people living with dementia are not having their disability rights met. The public, employers, governments and public bodies need to be more aware of, and recognise, the rights of people with dementia.
Action must be taken to enable people living with dementia to participate as equal citizens in their communities and society. The 2019 APPG report lists recommendations for action across six key areas.