WE HEAR YOU: Making decisions with dementia

Dementia affects people and families in unique ways. With more than 400,000 people living with dementia in Australia, no journey is the same; but there are shared experiences and stories, as well as services and resources, to support carers and people living with dementia.

Helping Hand has been supporting older people and their families for seventy years. Our mission is to create communities and experiences to enable older people to live their best lives. We help people to live independently in their own home for longer, or to start a new chapter in one of our residential care homes in metropolitan Adelaide and regionally in Clare, Port Pirie, Jamestown and Whyalla.

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WHAT DOES BEING A CARER LOOK LIKE?

‘There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.’ – Roslyn Carter

Anyone can be a carer and what that will look like will be different for everyone. For some its checking-in with a parent and driving them to appointments; for others it’s living full-time with someone who needs care or support.

12% of people in Australia are carers and while it’s true that being a carer is important and rewarding - it’s also true that not every day will feel that way.

Looking after your health and wellbeing at every stage is part of the journey of caring. Here are some handy tips for making decisions with dementia.

 MAKE DECISIONS BEFORE DEMENTIA IS ADVANCED

You don’t need to wait for a diagnosis of dementia before talking about dementia with the people closest to you. The earlier the conversation, the greater the clarity about everyone’s wishes, and the more time to review and reflect on them.

These conversations can be emotional. However, when they happen in advance, they can also help build the foundation for a series of decisions that will become a guide for family members later down the track.

 WRITE IT DOWN

Writing things down removes any confusion over what a person’s decisions or wishes are. Document the options that have been considered, the decisions that have been made and why they were made at the time. And most importantly family members should know where these wishes are kept.

 EVERY DAY DECISIONS

It may be hard for family members to know how to act around a family member living with dementia and it’s very important for the person living with dementia to maintain their dignity and control over their life. Never assume a person living with dementia is unable to make their own decisions.

 SMALL STEPS

We understand that conversations about living with dementia – and even getting older in general – can be challenging and confronting. Helping Hand has developed a series of short films, where you can follow one family’s experiences, from different points of view, as they find themselves making decisions about aged care. Complementing these videos are guides and resources for you and your family.

You can watch these films at helpinghand.org.au/wehearyou

Some Helpful Resources

Dementia Australia

Supporting people living with dementia dementia.org.au

Advanced Care Planning Australia

National government program helping people to plan for their future health care advancecareplanning.org.au

Carers SA

Access to early intervention, preventative and skill building support carerssa.com.au

My Aged Care

Entry point for Government funded aged care services myagedcare.gov.au