There are lists written on this site, and on many sites outlining the challenges of a diagnosis of younger onset dementia. Having to give up paid employment is near the top of the list and I’ve not found much written up about how difficult it is for a person with dementia. It is in effect, a ‘retrenchment’, or a ‘voluntary’ retirement, and we are left wondering what the hell happened to our professional life. It is critical to realise that the issue of retrenchment or a forced retirement due to illness has an immense emotional impact on a person. The resultant loss of position and income is heightened by the disappointment, anger, upset, resentment, and may precipitate lowered self esteem, depression, poor morale, heightened interpersonal conflict, and a loss of motivation to fight the symptoms of dementia.

To be prescribed disengagement from your normal life following a diagnosis of dementia sets us up to become victims, and dis-empowers us through the process of undermining who we are. If we had a stroke or major head injury from an accident, we would be rehabilitated as thoroughly as possible, and then assisted in getting back to work, even if it was not the same position we had held. Perhaps it is the stigma, ignorance and discrimination that holds our medical team and service providers from helping us to continue live our previous lives, albeit in a new way. When I was ‘forced’ to retire because of the symptoms of dementia, it was the only position I had left after 30+ years of working that I was not given a farewell, no card, no flowers, no party in the office to say goodbye. Nothing. Many people with dementia I have spoken to have experienced the same thing.

In a paper Identifying the psychological constructs underpinning the effects of retrenchment, the findings indicate “The psychological constructs underpinning the effects of retrenchment are identified and discussed in depth showing that four constructs, concern over uncertainty, pressure to find a new job, loss of self-concept, and attachment to the former organisation exist. All retrenchees, regardless of what they feel about being retrenched experienced these constructs negatively.” PWD may not be worried about finding a new job, but we certainly miss our employment and career, and mourn the loss of it, and the sense of professional identity that comes with it. It has a traumatic and emotional impact on our lives and emotional well being.

When we socialise or mix in groups of people we don’t know, usually the first question a person says after the initial introduction ‘Hi my name is Kate’, is; ‘What do you do?’ When you don’t DO anything anymore, the phrase given by Martin Luther King, ‘the sense of nobodiness’ sets in. We can feel embarrassed, it heightens our loneliness and loss of ‘connection’; it compounds our feelings of worthlessness, social exclusion and questions about how to move on after the diagnosis of dementia. In short, retrenchment or a ‘forced’ retirement can result in a loss of the fabric of life.On top of coping with the absolute trauma, grief and loss, isolation and the other negative side effects of a diagnosis of dementia, this loss of employment has dire consequences with the potential to complicate and heighten the challenges we have in accepting it.

Ps 27/9/12 – this article has been delivered to my email today, which fits perfectly with this blog; Retirement: a trigger for distress or welcome relief from the rat race?. It can only be a welcome relief if it is our choice, surely???