After a dementia diagnosis: the first few months

Feelings come and go

Shock, sadness, fear, anger and even relief are all common, for the person and for family. Feelings can change from day to day.

Talk about it when you are both ready. As much as you can, let the person living with dementia choose who to tell, and when.

Free support from Dementia Australia

The National Dementia Helpline on 1800 100 500 is free and confidential. It is open 24 hours a day, every day.

Ask the Helpline about Dementia Australia's free post-diagnostic support. The person and their family get six sessions with the same staff member, by phone or video. You can do them over six weeks, or spread them out over a year. It is for people of any age with dementia or mild cognitive impairment.

Programs you can do at home

Forward with Dementia has practical guides and real stories for the first year after a diagnosis, for the person diagnosed and for carers. Researchers including UNSW Sydney helped create it.

iSupport for Dementia is a self-help skills program for family carers, first made by the World Health Organization. Flinders University adapted it for Australia. You can do the online course, which comes in several languages, or download the printable modules from Bolton Clarke.

Planning ahead in WA

Make legal plans early, while the person can still make and explain their own decisions. In WA, the main documents are:

• Enduring Power of Attorney: names someone to make money and property decisions
• Enduring Power of Guardianship: names someone to make lifestyle, personal and health care decisions
• Advance Health Directive: the person writes down which medical treatments they do or do not want in future

Getting the documents right

The person must have full legal capacity when they sign. If anyone is unsure, ask the GP for a written opinion. Follow the signing and witnessing rules on each form carefully.

You do not usually need to register these documents. The exception: if an attorney will deal with property such as selling a house, the Enduring Power of Attorney must be lodged with Landgate first (ask Landgate). Give certified copies to the people named, the GP and family. The Office of the Public Advocate can help on 1300 858 455. For an Advance Health Directive, see WA Health or call (08) 9222 2300. Advance Care Planning Australia can also guide you.

Driving

A diagnosis does not always mean stopping driving straight away. But WA licence holders must tell the Department of Transport about a long-term condition such as dementia. Not reporting it can lead to a fine. You can report a medical condition online.

The GP can help check whether driving is still safe. From age 80, WA drivers need a yearly medical check to renew their licence. Start talking early about other ways to get around.

Money and help at home

If you care for the person, you may be able to get Carer Payment or Carer Allowance from Centrelink. Carer Payment is for people who give constant care. Carer Allowance is an extra payment if you give daily support. Rules apply, so check with Services Australia.

For support at home, apply for an aged care assessment through My Aged Care on 1800 200 422. This is mostly for people aged 65 or older, or 50 or older for Aboriginal and Torres Strait Islander people. Younger people with dementia can ask about the NDIS.

Looking after health

Staying active and social helps wellbeing. Walks, hobbies and time with friends all count. Get hearing and eyesight checked when due. Keep seeing the GP, and mention any new changes, such as low mood.

If behaviour changes

Changes such as agitation or distress can be hard for everyone. Dementia Support Australia gives advice to families and carers 24 hours a day on 1800 699 799.