2.3 Support to adjust to diagnosis

When health professionals offer services, people with dementia often say they don’t need help yet. However, when people finally accept services, they often say they wished they had asked for help sooner. People with dementia sometimes don’t realise that services might help them better navigate life with dementia regardless of what stage of the disease they are at.

A range of supports can help you adjust to your diagnosis of dementia:

Education and support groups for people recently diagnosed with dementia

People with dementia have told us that attending an education and support group, or an online support group have been really useful to learn more about dementia, share stories and make friends with people going through the same experience.

The Australian Government funds free, short residential programs for people living with dementia and their primary supporter. These programs are designed to improve understanding of dementia and your wellbeing.

Post-diagnostic support

If you have been diagnosed within the last two years, Dementia Australia offers six, free sessions to help you understand your situation, provide information, and to plan to live well now and in the future. Sessions are with a Demetia Support specialist. To register call Dementia Australia’s Helpline on 1800 100 500 or you can submit a referral for yourself or a family member here.

Dementia Counselling

Dementia Australia offers a up to 6 sessions of counselling at any stage of dementia. This is a more intensive online, telephone or in-person service that can provide expert support to adjust to life with dementia. To register, call Dementia Australia’s Helpline on 1800 100 500 or you can submit a referral here. A webinar explains the process of counselling.

Dementia advisors

Dementia Advisors are available in various areas of Australia, often through your Local Health District. They offer a range of information, as well as group and one-on-one sessions and can support you to obtain other supports and services. There is no central contact point for the Dementia Advisory Service, search “Dementia Advisory Services” and add your state or territory name in Google to see if there is one available in your area.

Grief and loss counselling

It is quite normal after a diagnosis of dementia to experience feelings of grief and loss. There are services to help you process these feelings.

Dementia Australia offers free, confidential, professional counselling for individuals, families, couples and professional carers at all stages of a dementia journey. Phone the National Dementia Helpline  on free call 1800 100 500 to enquire or complete an online referral.

Private grief and loss counsellors can help you work through your feelings about having dementia. This can be helpful for people who are struggling emotionally to come to terms with the diagnosis. Unfortunately, private services are not subsidised (unless you are able to obtain a Mental Health Treatment Plan – see below), so you may have to pay for the service, or sometimes private health insurance covers some of the costs.

Waiting times can be long. Alternative services include:

• Griefline is a nationally funded telephone service, staffed by trained volunteers to help you come to terms with your experience of grief and loss.
• Talk to your GP and request grief counselling. This may be available as part of a mental health plan, or your doctor may refer you to a suitably qualified professional.

Mental health support

Some people develop anxiety or depression in reaction to their diagnosis of dementia. Talk to your GP about how you’re feeling. GPs can assess your mood, and give you a mental health plan if needed. A mental health plan means you can get subsidised visits to see a psychologist, occupational therapist or social worker, up to 10 individual appointments and/or 10 group sessions a year.