Employment and dementia

Making employment decisions

Being diagnosed with dementia means that there are a number of matters to consider in planning for the future. If you are still working, you will need to consider how dementia affects your working life and start thinking about changes that may be needed in the future. You may have already noticed the effects of dementia on your work. Some of the changes might include:

  • difficulty communicating your thoughts to colleagues or clients
  • trouble concentrating for as long as you used to
  • forgetting important meetings or appointments
  • difficulty managing several tasks at one time
  • having problems with larger groups and possibly preferring to work alone
  • losing confidence in your work abilities
  • feeling uncertain about making important decisions

The key to making employment decisions is to take early control, plan and be realistic.

Getting help

From the start, seek guidance and support. Apart from your family and trusted friends this might include support from:

  • your doctor or medical specialist
  • your trade union or professional body
  • Dementia Australia
  • legal and financial advisors
  • a counsellor
  • anti-discrimination advocates

These people can help you think things through, and support you to make the decisions needed for the future.

Protecting your privacy and confidentiality

Organisations such as Dementia Australia are required by law to respect your privacy. If you are concerned about the confidentiality of your personal information or health information ask to see the organisation’s privacy policy.

Continuing to work

Here are some suggestions that might help:

  • Talk to your employer about your diagnosis. This is a very big step for most people, so think about what to say and how much to tell. Using trusted family and friends for a rehearsal can be very helpful. You might want to take someone with you to help explain your situation.
  • Discuss the possibility of changing aspects of your job that will make things easier for you.
  • Think about who else in your work place needs to know about your diagnosis. This could include clients as well as co-workers.
  • It may help to have one or two trusted people to be key supports in the workplace.
  • You may wish to familiarise yourself with relevant anti-discrimination legislation.
  • Know your employment conditions, especially your sick leave and disability entitlements.
  • Continue to plan for the future – consider how you will decide when the time is right to leave work.

Managing changes

If you are having problems at work they are quite likely a result of the changes of dementia. The changes are not something you have control of, but you can take control of how you manage the situation. Sometimes simple strategies or changes in the environment can help you at work. Some people initially renegotiate their working hours and duties to reduce workplace pressures. Like anyone with a serious illness you are entitled to special consideration in the workplace.

Leaving work

At some point it is likely that you will decide to leave work. Try not to make a spur of the moment decision. Make sure that you are fully aware of all your benefits and entitlements. This can be a very complex area, so ensure that you get good advice. Depending on your situation this might include guidance from:

  • a financial counsellor
  • a solicitor
  • your trade union or professional body
  • Centrelink
  • Dementia Australia

Before you make any final decisions about leaving work find out about:

  • your superannuation policy and entitlements
  • any sick leave or long service leave entitlements
  • disability or sickness benefits
  • any income protection insurance or other insurances that may have a disability component
  • any government benefits for which you might be eligible after leaving work

Take your time, discuss and make an informed decision. After all, this is about your future and the future of your family. There are people who will help you with your journey.

Further Help

The Living With Dementia Series is available in each state and territory. The program – designed specifically for people in the early stage of dementia, their family members and friends – provides information and support as well as an opportunity to meet others in a similar situation. The program has a positive focus on maintaining and enhancing skill and abilities and exploring ways of managing now and in the future.

There are many benefits from taking part in a Living With Dementia Series. Most people enjoy the chance to obtain information, have questions answered, talk confidentially with others in a similar situation, discuss experiences and express feelings in a safe environment.

It’s good to know there are others in the same boat.

Sharing experiences halves my worries and concerns.

At this group you’re not a dot on the landscape. You can talk to other people who understand you.

You can find out more about the Living With Dementia Series online, or by contacting the National Dementia Helpline on 1800 100 500.