Mar 13, 2024

Simplifying the dementia journey to live well

Autumn. A time for harvesting, leaves falling from the trees making way for new growth in the spring.  I’m feeling a bit like this after 20 years in Home Care, letting some of the old ways go and make room for new ideas and information. One thing I wasn’t expecting was to become a Dementia Expert.  

For me, dementia (or cognitive impairment) was always on the peripheral. Professionally, as a General Manager 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.  Personally, 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. 

Complexity of dementia on families

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! Watching a dementia awareness video the other day where a man said “jokes about dementia aren’t funny, the end result is death. People don’t joke about cancer”. I didn’t realise how much I didn’t know, but now realise how much I want to know. 

My Dementia Companion Dementia Tangled Journey
Dementia tangled journey [Source: Supplied]

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 references 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, 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, an example from My Dementia Companion PRO below. 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, so your journey should reflect how you want to live.

My Dementia Companion Dementia Journey
The dementia journey. [Source: Supplied]

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 at home. I encourage all providers to adopt a practical and structured approach to dementia, including learning from the dementia journey above. Alternatively, My Dementia Companion can also help with its world-first innovative web-based PRO and CARER tools.  

These tools can help create individualised journeys, addressing needs as they arise and track their journey progression, which ultimately help individuals plan ahead, live well and maintain independence for as long as possible.  

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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  1. The author’s perspective that “Education is important but on its own, it’s time consuming, expensive, takes people away from care” overlooks the fact that excellent dementia education courses are freely available online and framing education as detracting from caregiving responsibilities overlooks its vital role in “caregiving” and diminishes its impact on those in need.

  2. I am ON that Journey,,, for the last 2 years ….I am an old nurse !! when John came back from a trip to UK,,on his return I was aware of what IT was….
    managed to get to GP, Memory clinic,MRI,,& a diagnosis ….and home we went with a lot of paper work for help…John hadn’t had a driving License for years.John is on Level 1 MyAGED Care so we have help.I am his carer giving Tablets . but for the rest ,, John has a double whammy ,his eyesight is very bad[Glaucoma… so I chose Vision Australia as the provider .. they have been great and John goes 2 days a week to a 4 hour respite….and they come & pick him up in a bus!! which is great…JOHN also was a volunteer in 2014 as a guinea pig for dementia at Melbourne Uni for 3 years where he had blood tests ETC & also a Cat scan At the Florie Institute ……..now at 84 & me @77are together….MY story…Marie G

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