‘We are the experts’ says dementia advocate Kevyn Morris

Key points:

• Over the last few years, several dementia advocates have voiced the need to reach out to rural and remote First Nations peoples and offer them care and tailored support services
• In 2020, dementia was the second leading cause of death in Australia, surpassing coronary heart disease with 14,500 deaths in total
• From 2018–20, 318 Indigenous Australians died due to dementia; which accounted for 11% of all deaths among Indigenous Australians aged 65 and over in that time period
• Research from 2014 suggested Indigenous Australians were found to have a younger age for onset dementia at the average age of 72, compared to the average age of 79 among non-Indigenous Australians

Dementia affects every individual differently and there are several types of dementia resulting in a variety of symptoms and issues. All people with dementia will see their symptoms gradually increase over time, and in most cases, they do eventually lose all ability to communicate like they once did. 

On average, older people are diagnosed with the illness more than those under 65. In 2022, the Australian Institute of Health and Welfare reported close to 401,300 people are living with dementia in Australia, of which nearly two-thirds are women. 

Early signs of dementia are hard to pick as they can be overlooked and considered trivial; they could include forgetting to turn the oven on, forgetting where you left the keys or where you parked the car. For Kevyn Morris, a proud Jagera man and dementia advocate, his first symptoms included forgetting what his family told him and not remembering how to use tools and machinery he’d been working with for decades.

Dementia Australia has said research on people living in the remote Kimberley regions in Western Australia suggests Indigenous people are 4–5 times more likely to be living with dementia than those in the general Australian community. 

Currently, most people living with dementia and their carers can access 24×7 free helplines, along with a wide range of Government funded support and services.  Support services include webinars, carer support groups, respite care, counselling and educational programs about caring for someone living with dementia. 

But unfortunately, not everyone is able to gain access to these services and accessing Government-funded programs can be harder for people living in regional and remote areas. Kevyn says he was part of a project a few years ago that was founded to bring in changes to help people living with dementia. 

During a conversation where the experts were discussing if the driver’s licences of those living with dementia should be revoked, Kevyn recalls saying, “I explained why I thought that was an idea that was discriminatory and not well thought out. […] I said removing someone’s licence may be appropriate in a large metropolitan area where you have buses, trams, Uber, any number of things, but if you were living in a rural and remote area, it might be the only means of transport you have.” 

“I can have a heart transplant or a triple bypass and I might be asked to do a health test every year; why isn’t this appropriate for those with a recent diagnosis of dementia,” Kevyn adds, stating an example of a situation that could arise. 

Dementia in Aged Care

• Dementia is the leading cause of death for women in Australia
• Dementia is a general term for cognitive decline, and one of the most common forms of dementia is Alzheimer’s disease; it accounts for 80% of all dementia cases
• Alzheimer’s can affect an individual’s thinking, behaviour and memory. It progresses gradually and eventually affects the person’s daily activities, such as eating, personal hygiene, reading and talking

The aged care system often struggles to cater to the everyday needs of every person. Many times, someone living with dementia in an aged care home is placed in the general wing when they would be better suited to a specialist dementia wing – but due to limited availability and staffing constraints, that’s not possible.

When asked if moving into an aged care home is something that he will ever consider, Kevyn says there are several such loopholes in the system that deter him from ever wanting to step foot inside an aged care facility. “I can answer it this way,” he says, “The only way I’ll go in [to an aged care home] is when I don’t know.”

The common question at the 2023 National Dementia Conference was ‘Are there any people living with dementia on any peak body or Government decision-making projects?’

The answer was bleak and expected. 

“I’ve been involved with Dementia Australia for 5–6 years now. At one point I asked a question — just how many Indigenous people were either involved with or [are] working within Dementia Australia”. 

Kevyn says the answer at first shocked him until he took the time to realise how reluctant First Nations people were to get involved with mainstream health or to talk about dementia amongst many other pressing issues. “Listening never really worked out too well for us.”

Having more people living with dementia at the forefront of the health sector will be beneficial for several reasons; it will give researchers and policymakers the opportunity to learn more about the issues caused by this disease first-hand. 

Be it at conferences such as the National Dementia Conference or in decision-making committees, it is quite clear the ethics committees often involved lack expertise from people living with dementia and those from diverse backgrounds like Indigenous communities and the LGBTQI+ community. Mostly, these round table conferences are chaired by professors, academics, CEOs and experts. 

This makes us think — Do enough people living with dementia actually have a say in policy-making committees created to help those affected by the condition?