With encouragement for people to remain in the workplace longer, the rate of employees with dementia is bound to increase. In fact, 1.4 per cent of people aged 65-69 have dementia. 6 In addition, sometimes people are diagnosed with dementia quite early, at an age less than 65 and would still be expecting several years of paid employment. It has been found that around 50 per cent of carers of people diagnosed with early dementia have reported financial difficulties related to the person's loss of employment. 7

A diagnosis of dementia does not automatically mean the person with dementia must leave work immediately. It is possible to keep working for some time after diagnosis, provided they take control of employment decisions early, plan for the future and have realistic expectations. 8 Alzheimer’s Australia has a help sheet that provides useful information about employment and dementia. If a person diagnosed with dementia wishes to remain employed the first important step is to discuss the diagnosis with the employer and the types of work they do. It can be very difficult to disclose a diagnosis to an employer and it may be of benefit to take someone along for support. In addition, it is important to investigate any rights involved by contacting your trade union or professional body and also anti-discrimination advocates. 7 See the table below for anti-discrimination advocates in Australia. People from outside Australia should contact their local anti-discrimination or equal opportunity advocate.

The other important step in employment with dementia is to make early, realistic decisions about the point at which they leave work. For example, at what point of the disease progression, or perhaps when certain tasks the person with dementia would class as minimum requirements, become too difficult. This can be discussed with the employer and doctor. 7

Anti-discrimination contacts across Australian States and Territories:

StateDepartmentPhone NumberFreecallTTY
ACT Welfare Rights and Legal Centre 02 6247 2018    
New South Wales Anti-Discrimination Board 02 9268 5555 1800 670 812 TTY: 02 9268 5522
Northern Territory Northern Territory Anti-Discrimination Commission 08 8999 1444 1800 813 846 TTY: 02 8999 1466
Queensland Anti-Discrimination Commission Queensland 1300 130 670   TTY: 1300 130 680
South Australia Equal Opportunity Commission of South Australia 08 8207 1977 1800 188 163 TTY: 08 8207 1911
Tasmania Office of the Anti-Discrimination Commissioner 03 6233 4841 1300 305 062 TTY: 03 6233 3122
Victoria Equal Opportunity Commission 03 9281 7111 1800 134 142 TTY: 03 9281 7110
Western Australia Equal Opportunity Commission of Western Australia 08 9216 3900 1800 198 149 TTY: 08 9216 3936

References and recommended reading

  1. Alzheimer's Australia (2005). Legal Planning and Dementia, Position Paper 5. Available from http://www.alzheimers.org.au/upload/LegalPlanning.pdf
  2. Office of the Public Advocate. (2006). Powers of Attorney. Available from http://www.publicadvocate.vic.gov.au/Powers-of-attorney.html 
  3. Alzheimers Australia. (2005). Legal Planning and Dementia. Available from http://www.alzheimers.org.au/legal
  4. Alzheimer's Australia (2001). Driving and Dementia: A Background Paper. Available from http://www.alzheimers.org.au/upload/DrivingBackground.pdf
  5. O'Neill, D., Neubauer, K., Boyle, M., Gerrard, J., & Surmon, D. (1992). Dementia and driving. Journal of the Royal Society of Medicine, 85, 199-202.
  6. Jorm, AF., Korten, AE. & Henderson, AS. (1987) The prevalence of dementia: a quantitative integration of the literature. Acta Psychiatrica Scandinavica, 76, 465-479.
  7. Alzheimer's Australia (2005) Employment: Younger Onset Dementia. Help Sheet 7-4. Available from http://www.alzheimers.org.au/upload/HS7.4.pdf
  8. Alzheimer's Australia (2005) About you....Making employment decisions, Help Sheet 8-10. Available from http://www.alzheimers.org.au/upload/HS8.10.pdf