Employment and younger onset dementia

When someone has been diagnosed with dementia it is an upsetting time for the individual and for those close to them. If the person has been diagnosed with younger onset dementia they may still be in full employment at the time of the diagnosis. They may still be responsible for a family and have a mortgage or other financial responsibilities.

Dementia affects people differently. A person may already experience some problems in their job, or they may be coping really well. However, sooner or later their abilities will decline and they will need to consider leaving employment. 

First

From the start, seek as much help as you can. Seek advice and support from:

  • A doctor or medical specialist
  • Trade union or professional bodies
  • Dementia Australia
  • Legal and financial advisors
  • Carers Australia
  • A counsellor

Many people find it helpful to talk to other family members and carers of people with younger onset dementia. It may be possible for Dementia Australia to put you in touch with other families and carers or link you to a support group. 

Continuing to work

If a person with dementia decides to keep working you will need to consider how best to support them. Help them to think about how to talk to their employer about the diagnosis. This is a very big step, so planning what to say and how much to tell is important. Rehearsing can be helpful. You may also want to suggest they take someone along to help explain their situation, and to offer support.

Some other suggestions to consider are:

  • Discuss the possibility of changing aspects of their job that may make things easier
  • Try to identify who else in the workplace needs to know about the diagnosis. This could include clients as well as co-workers
  • Suggest having one or two trusted people to be key supports in the workplace
  • Make sure that you are familiar with anti-discrimination legislation
  • Know employment conditions, especially sick leave and disability entitlements
  • Suggest the employer ring the National Dementia Helpline on 1800 100 500 for information about dementia, changed behaviour and any modification to the workplace

Planning for the future

Keep planning for the time that they will need to leave work. If you work, find out about your entitlements for carer leave and sick leave.

Remember, any problems at work may well be the result of the dementia and the person with dementia may not have control over these. Like anyone with a serious illness, people diagnosed with dementia are entitled to special consideration in the workplace.

Leaving work

The person with dementia may decide that it is best that they leave work. This should not be a spur of the moment decision. Make sure that all involved are fully aware of all the benefits and entitlements that are due. This can be a very complex area so ensure that you get good advice.

This might include guidance from:

  • A financial adviser
  • A solicitor
  • Trade union or professional body
  • Centrelink
  • Anti-discrimination advocates
  • A counsellor

Before the person makes any final decisions about leaving work find out about:

  • Superannuation policy and entitlements
  • Any sick leave or long service leave entitlements
  • Any income protection insurance or other insurances that may have a disability component
  • Disability or sickness benefits
  • Any government benefits for which they might be eligible after leaving work
  • Any government benefits for which you might be eligible when caring for someone with dementia who is no longer working

Take your time, discuss and make an informed decision. These are important decisions that may affect you and your family for a long time to come. Be aware that this time can take its toll on you physically and emotionally. Make sure that you:

  • Take care of yourself
  • Seek out help
  • Develop a support network of people with whom you are comfortable to share your feelings
  • Stay connected to people

Further help

Dementia Australia offers support, information and referral services and counselling. The National Dementia Helpline on 1800 100 500 can be contacted from anywhere in Australia. Dementia Australia can also put carers in touch with other carers of people with younger onset dementia or provide links to carer support groups.

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