Updated: Apr 5, 2021
The Royal Commission into Aged Care released its final report recently after over two years of consultation, reading through over 10,000 submissions and hearing from 600 witnesses.
The final 148 recommendations for substantial change and overhaul of the sector is sobering and frightening for some. For us, this further cements the reason for our existence and why we work so hard for free - so all people impacted by dementia are supported and able to live a more fulfilling life.
This also highlights the enormous amount of work we still need to do and the high standards that we need to achieve. We hope our work contributes to this positive change.
How My Dementia Companion fits in
Of the summary documents and 148 recommendations, we counted close to 30 directly related to our mission at My Dementia Companion.
Dementia is not normal of ageing, but it should be the core business and normal part of aged care services. Given its high prevalence in society and prominence in the inquiry, we try our best to ensure everyone impacted by dementia is or can be appropriately supported:
Evidence of sub-standard dementia care is persistent in the inquiry. This is reflected in insufficient training and understanding by professionals; a complex care pathway and system that leaves families behind; and a medical system that is “too medical” and believes antipsychotics is standard treatment.
Aligning with the Commission, we welcome the recommendations on:
Empowering staff and professionals with the training and knowledge to care for our loved ones impacted by dementia. We would go further on this to say, we have innovate the way we support those professionals, e.g. improving training so i tis engaging and meaningful, and providing practical tools that they can actually use day-to-day to deliver care (Summary 1.3.3 and Recommendation 80 (R80)).
Establishing a dementia support pathway (R15) to assist people in navigating the complex systems through which care is provided—the information, coordination, care, education and social support services, including specialist dementia services (R16).
Update of the Aged Care Quality Standards to incorporate dementia (R19).
Provide clearer guidance and even restrictions on antipsychotic use (R65).
These recommendations are at the core of what we do and the very problem we are solving with My Dementia Companion.
Supporting family and friend carers is another key theme outlined in the report, and the primary mission statement of My Dementia Companion. As we move towards aging in place (in our own homes), carers of those living with dementia will shoulder more and more of the workload, stress and pressure:
While the research and best practice points to dignity of care and choice, this can’t happen without self-determination, which is “about autonomy, and having control and choice over your own life. Choice and control, and involvement in decision-making, promote dignity”. Many people are left so confused and overwhelmed by the system and their dementia or other diseases, that they can’t exercise choice. While care managers are encouraged to consult the affected person and family, this just becomes a formality as they all struggle to understand their options, rationales and best approaches. As a result, too many of our loved ones are being under-supported, which isn’t helped by the long waiting list for Home Care Packages and upcoming ending of the Commonwealth Home Support Program.
As such, we also support the recommendations on creating and embedding high quality aged care (R13):
A new Act and supporting governance framework/ infrastructure that enables people entitled to aged care to exercise choice and control in the planning and delivery of their care (R1-2).
Empower carers to know their rights to exercise choice, access and receive quality care through more accessible and usable information, a more streamlined referral process and support services, and of course, increased funding to run all those support services (R27 and 42). The above should also cover other aspects of ageing, from dementia to palliative care (R15).
In addition, building and improving tools to help everyone navigate the care system (R29).
The recognition and recommendation to better support carers further validates My Dementia Companion. Our mission to empower carers and guide them through their journey (accessing care, and learning care and coping strategies) asligns squared with those recommendations.
Supporting dementia and care professionals
Through our journey, we have heard many professionals are struggling in their roles from the same challenges that family and friend carers are subjected to. This is because aged care is complex and hard work. Quite often they don’t have the time or funding to deliver the care they would like to:
Really focus on the individualised care for everyone, including those from diverse backgrounds and with complex needs; and undertake all the training and gain the qualifications they want.
Aligned with recommendations, we support better aged care workforce planning (R75), immediate funding for education (R114) and mandatory minimum qualification for frontline workers (R78), so:
Our professional workers are able to provide and embed quality and safe care (R13 - 14), including those with complex needs (R30), palliative care and dementia (R80)
Reduce unnecessary antipsychotic use for people living with dementia (R65)
These are the reasons why many professionals who are referring My Dementia Companion to their clients and families, are also using it to help themselves and deliver care. You can read about this in our recent blog here.
With so much innovation flowing through many other sectors, aged care has struggled. A landscape and perception that doesn’t promote innovation has led us not achieving what we wanted. This is another reason why we created My Dementia Companion - to spur innovation, attract talent, improve care and repeat. We are extremely happy to see the recommendation calls for more innovation, better adoption of new technology and enhanced utilisation of data to make decisions (R1, 30, 34, 67, 68, 105 and 108).
As a volunteer created passion project, increased funding to help us do what we do will make a huge difference for us and many other innovators in aged care (R107).