Dealing with practical issues
"I wish I had known that I had dementia before I left my job. I resigned as I was finding it increasingly difficult to cope. This has affected my pension rights. If I had informed my employer that I had dementia, I think I would be better off now." (Sally)
"I have decided to keep my part-time job for the moment. Maybe Pete will eventually attend a day care centre. Yesterday, my daughter made a negative comment about it but Pete and I are happy with this decision and that’s what counts." (Deirdre)
People with dementia who are in paid employment may find that memory problems eventually start to interfere with their ability to carry out their duties. Difficulties with concentration, flexibility and abstract thought can also interfere with a person’s ability to function normally in their profession. This can be embarrassing and stressful. Many people try to hide their difficulties from their colleagues and bosses and worry about their financial future. Some work overtime in an attempt to solve the problem, whereas others take their worries or work home. Often, the only solution seems to be to resign.
At the beginning of the disease, carers might not find working problematic but as the disease progresses, it may become increasingly difficult to balance work and caring, plus family commitments in many cases. All too often, it is just presumed that women will adapt their working lives to incorporate the role of carer. When trying to combine caring and working, it often happens that working life interferes with caring and vice versa. Multiple role responsibilities, such as carer, employee and parent, can put people under considerable strain as there are conflicting demands for time and energy. It can also be emotionally draining and leave carers with the unpleasant feeling that they are not fulfilling any one role particularly well. This conflict is often overlooked with the result that it can have a negative effect on the health and wellbeing of the carer.
On the other hand, according to research into the effects of employment on female carers, some women find that full-time employment provides them with respite or distraction from the responsibilities of caring. This may be due to the time spent away from caring and/or to the greater financial, social and psychological resources available to them. Some women also find that rewarding work has a kind of buffering effect against the stress of caring. It seems that a positive experience in one role may counteract a stressful experience in another.
Deciding whether to give up one’s job can nevertheless be a very difficult decision. For many people, work is not merely a financial necessity, but rather something that provides structure and meaning to their lives as well as a place for meaningful contact with others. As such, it can be part of a person’s identity. Some people who give up their job find that it helps to take up a hobby or do some volunteer work to replace the lost professional activity.
Clearly, each person must make their own mind up on the basis of the possibilities and choices available to them. They should not, however, feel guilty about the decision they make or be unduly influenced by the expectations of others.
For the person with dementia
- If you are experiencing problems at work which you suspect may be associated with dementia, it is important to consult a doctor especially if you drive or operate machinery.
- Medication exists for Alzheimer’s disease which for many people temporarily slows down the progression of the disease and reduces some of the symptoms. This could help you to cope for longer at work.
- Another reason to consult your doctor is to obtain a certificate of incapacity to work (if and when this becomes necessary). This might enable you to stop working without this affecting your pension rights or leading to a reduction in earnings, particularly if you are nearing retirement.
- Having discussed the issue with your doctor, continue working for as long as you feel able.
- Another option is to consider early retirement or a less demanding position.
- At some point, it may be necessary to talk to your union or employer about your diagnosis.
- It is also a good idea to talk to your colleagues about your difficulties and to explain a little bit about dementia so that they can understand you better and know what to expect.
- If you are a younger person with dementia and have financial commitments (e.g. a mortgage), it would be worthwhile discussing the issue of how to deal with this should you leave your job. The Citizen’s Advice Bureau or your local Alzheimer Association may be able to advise you on this matter
For the carer
- Discuss the situation with your employer and see whether there would be any possibility to change your hours either now or later e.g. part-time working, job sharing or flexible working hours.
- Explain to colleagues, family and friends about your situation so that they are better able to understand and perhaps even help you.
- Find out whether you could eventually benefit from “carers leave”1.
- Look into other possibilities (e.g. home help, meals on wheels) which might enable you to hold down your job for longer if this is what you want to do.
- Check how your pension rights or entitlement to social security benefits would be affected before making a decision about giving up your job.
- If you get on particularly well with your colleagues, try to keep in touch with them if you do eventually leave your job
Last Updated: Friday 11 September 2009