While we think of dementia as a disease in later life, affecting people beyond retirement age, there are a growing number of younger people being diagnosed with the condition. ‘Young dementia’ is estimated to affect around 43,000 people in the UK, representing five per cent of the total number of people living with the condition.1
Anyone diagnosed with dementia while still of working age is deemed to have young dementia, and it is common for symptoms to be recognised first by workmates who become aware of a colleague’s lapses or significant change to usual function and behaviour. We know that BACP members are working with clients with dementia, supporting family members, and that workplace counselling services too will have referrals for clients experiencing early-onset dementia.
In September, BACP members who live and work in Wales spent a rainy Saturday in Cardiff sharing their insights. Reflecting on the funding cuts that have hit counselling services as well as rural transport links, they spoke of the challenges facing post-industrial ex-mining areas where younger people migrate to find employment, leaving traditional close-knit communities of older people whose deprivation and poor mental health often remain hidden. Despite the challenges and barriers faced by counsellors and services, the overwhelming message was the enormous value of counselling to older clients, the importance of overcoming barriers to access, and the great sense of purpose and satisfaction that therapists experience in their work.
In a recent blog, BACP member, Erin Stevens, highlights the considerations she makes when working with people approaching retirement: ‘A retiring client who has been valued and respected in their employment, who has found a place for themselves within an organisation or role, built a network of colleagues, felt competent and needed, who has perhaps risen through the ranks of their workplace over many years, is likely to feel that an enormous part of their identity is being stripped away from them.’2
So, how much more painful and acute could this loss of identity be when our working lives are cut short due to being diagnosed with an unexpected chronic illness like dementia? As part of our older people research strategy, we’re developing links with academics and organisations interested in exploring the role and impact of counselling in later life. BACP has been invited to participate in an innovative project being developed by The University of Northampton to support people with early-onset dementia.
The Alzheimer’s Society recommends that to boost memory and self-esteem and to avoid depression, people with dementia should keep as active as possible, physically, mentally and socially. Worryingly, the reality for most people with young dementia is to choose to voluntarily leave work, resulting in the removal of the usual opportunities for regular activity, cognitive stimulation and social contact.
Experts who have written on the subject make the case for employees who are diagnosed with young dementia to have open and honest conversations with employers. In Young Onset Dementia , authors Alison Ward and Jacqueline Parks explain how, ‘continuing employment can help the person with dementia to feel that they still have purpose in life. It can help them to feel good about themselves as they continue to contribute to the household finances, as well as feeling they still have value in society.’3
Arguably, one of the challenges is to help employers to address the fear and stigma associated with the word ‘dementia’ and to rethink what might be possible at work. The counselling profession could play a crucial role here. By learning more about how counselling can support people of working age who are coming to terms with living with dementia and supporting the objective of remaining engaged in meaningful activities, we will help raise awareness both of the condition and the support required to manage it as well as possible.
Jeremy Bacon is BACP’s lead on developing a strategy for older people
1 Young Dementia UK. [Online.] https://bit.ly/2xOX8Pm (accessed 22 November 2018).
2 Stevens E. Life transitions in later life – recapturing meaning. [Online.] https://www.bacp.co.uk/ about-us/about-bacp/older-people/life-transitions-in-later-life/
3 Ward A, Parkes J. Young onset dementia. London: Jessica Kingsley Publishers. 2018.