Guest post: A dementia journey map and how it can help

A dementia journey map

In this guest post, Deb Stephens highlights the importance of a ‘journey map’ to help those living with dementia and their carers navigate a better quality of life. Deb is the Head of Dementia Operations with My Dementia Companion – a digital companion for professionals, family carers and those living with dementia – it was awarded highly commended in the 2023 Future of Ageing Awards.

For me, dementia (or cognitive impairment) was always on the peripheral. Professionally, as a General Manager for an aged care provider, I was lucky enough to have a Dementia Specialist in my team to support services, very much seen by everyone as a clinical or “dementia” qualified role.

On a personal level, I’d listen at family barbecues about an uncle who forgot his keys more than twice and received a family diagnosis on the spot over sausages.

I’ve now got a couple of courses under my belt from Wicking and Dementia Training Australia, but my biggest learning was the dementia map since joining My Dementia Companion a few months ago.

Putting aside the known complexity of dementia, I never knew that there was a dementia journey that people would move along as they attempt to live well.

This is no surprise as I recall families calling their life a “maze” or “trap” that makes them feel “lost”, “blinded” and utterly “confused”. So many just give up!

The other day, while watching a dementia awareness video, a man made a poignant observation: jokes about dementia lack humour because they ultimately lead to death. He drew a comparison, noting that people don’t joke about cancer in the same way.

Demand for better dementia care

As a sector and as a society how are we going to get real about dementia? The New Strengthened Standards reference dementia more than ever. The Aged Care Sector as a whole does not have the tools to do this well now, how are we going to do it better?

Education is important but on its own, it’s time-consuming, expensive, and takes people away from care and that’s a concern when we have a workforce shortage that’s only going to grow.

Using a dementia map to help you navigate

A dementia journey map can assist staff and families to help the person live well with dementia at home. The map from My Dementia Companion PRO is the first of its kind, this map can help unpack/shine a light on the unknown for families, creating individualised journeys, and addressing needs as they arise. It’s no one-size-fits-all-all, so your journey should reflect how you want to live.

Without a cure, the only way to provide quality dementia care in aged care is to empower people with the skills to prepare and manage challenges on their journey – including accepting the diagnosis, future planning, implementing simple care strategies at home, adapting their environment and communication, and preventing and managing changed behaviours.

Dementia Care is everyone’s business with ~70% of people living with dementia live at home. I encourage all providers to adopt a practical and structured approach to dementia, including learning from the dementia journey above.

We can’t change the diagnosis, but we all can change how we support people living with dementia (or cognitive impairment) to live the best life they can.


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