Young onset dementia and employment - can you help us?

The PACE group (pictured below), based in Oxfordshire, is calling for more awareness about receiving a diagnosis of young onset dementia whilst still in employment.

Whilst a minority of people are supported to stay in work, many decide to leave their job after a diagnosis because they start to find work too challenging or overwhelming.  Others displaying early signs of dementia have their employment terminated because of a general lack of understanding about the condition and lack of knowledge of their rights.  The Equality Act of 2010 states that an employer cannot make someone redundant because of a disability, including dementia.

After sharing their personal experiences with each other, members of the PACE group discovered that more often than not younger people face a difficult and challenging environment in the workplace after receiving a diagnosis.

The group felt they were written off too quickly, were not given adequate support, they were de-skilled and under-valued and had to give up their professional careers early. They described the losses they experienced including their social status, the opportunity to perform different roles, independence and social networks, as well as a significant reduction in income.  They also discussed the bureaucracy and difficulty in applying for benefits and financial support.

Mick, Helen, Philip, Edward, Mike, Jacqui and Des and other members of the PACE group feel that more needs to be done to support people of working age who are living with dementia.  They would like to improve the way employers support people with young onset dementia and make the experience of continuing to work more positive so that people are better equipped and supported to stay in work for longer in the future if they wish to do so. 

We would love you to get in touch and share your experiences and ideas about how things could be improved for younger people who are diagnosed with dementia whilst still in employment. 

Please contact Liz Rose, Young Onset Dementia Advisor

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