Dementia is on the rise globally and Australia is no exception. In 2022, 401,300 Australians were living with dementia. By 2058, this number is predicted to more than double, rising up to 849,300 people.
The rising numbers are taking a toll on our public health as a whole. Today, dementia is the second leading cause of death in Australia, topped only by coronary heart disease. Perhaps even more alarmingly, dementia has become the leading cause of disease burden for Australians aged 65 and over, overtaking heart disease. Burden of disease analysis considers both the impact of living with the condition as well as premature death. This provides a comprehensive view of the condition’s scope, focusing not just on the total number of people affected, but also on the severity and duration of the condition and the lifespan of those affected.
Due to its growing prevalence, most Australians will be affected by dementia during their lifetime, either through firsthand experience or through a loved one living with the condition.
To determine the best method of care, it is crucial that we understand the complex nature of the condition itself. Dementia is not a disease nor is it a natural part of aging, though its risk significantly increases with age. Instead, dementia is an umbrella term that’s used to describe a set of symptoms that impact the brain. While memory loss, confusion, and personality changes are often listed as symptoms, dementia impacts each person differently. Up to 90% of patients experience neuropsychiatric symptoms, including paranoia and hallucinations.
The term dementia covers a whole variety of medical conditions. Alzheimer’s disease is the most common cause, accounting for up to 80% of all cases of dementia. Other causes include frontotemporal dementia, Lewy body dementia, vascular dementia – and the list goes on. It is also possible for one person to be impacted by multiple types of dementia at the same time.
Given the complex nature of dementia, determining the best method of care can be very challenging. Carers are continuously faced with difficult situations where they must solve a near-impossible equation: how do we improve the patient experience, or do we have to balance quality of life?
Most Australians with dementia are living in the community
Based on media coverage, it’s easy to assume that people living with dementia are generally cared for in large residential facilities. However, the reality is very different. Two thirds of Australians with dementia are living in the community. As the vast majority of people with dementia are over the age of 65, this is in keeping with the general trend of Australians preferring to age in their own home.
More than 80% of people with dementia require frequent help with communication, self-care, and/or mobility. As the majority are living in the community, a lot of this support is provided by family and friends. It has been estimated that there are now up to 354,200 informal carers in Australia providing support for people with dementia. Though this is unpaid work, many carers are working 60 hours or more per week. Besides being time-consuming, caring for a loved one with dementia can also be very emotionally taxing. To enable people with dementia to live and age in their own community, it is crucial that adequate support is made available for their carers.
Investing in respite care
One of the most effective ways to support people with dementia as well as their carers is to provide sufficient access to respite care. Respite care offers both the care recipient and their carer a much-needed change of pace and scenery. These breaks are particularly important when the care recipient has dementia. 23% of primary carers of people with dementia report a need for more respite care, compared to just 13% of carers supporting people without dementia. This stark difference highlights the unique challenges of dementia care and the importance of investing in solutions that tackle those obstacles.
A 2020 study comparing cottage respite with traditional residential respite found that carers perceived the smaller, homelike cottage setting to be much more beneficial for the care recipient’s overall wellbeing. Carers felt that the cottage approach enabled a smoother transition between home and respite, as well as offering more effective and personalised care. Over 90% of carers reported that cottage respite made it easier to maintain the care recipient at home, with 50% indicating that cottage respite had enabled them to delay placement in an aged care facility.
These numbers are quite astonishing, especially when you consider how commonly dementia care is still equated with residential care. Cottage respite exemplifies that things don’t need to be so black and white. Creating flexibility between at-home and residential care contributes to the well-being of people living with dementia as well as that of their carers. It’s also an important reminder of how we should never exclude people with dementia nor their carers when determining the best methods of care.
Reimagining residential care
While the majority of Australians with dementia are living in the community, dementia is also very prevalent in residential aged care. According to the Aged Care Royal Commission, more than 50% of all those living in permanent aged care facilities have been diagnosed with dementia. With the majority of Australians preferring to stay in their own home for as long as possible, it is often the challenges brought on by dementia that finally persuade people to transition from their own home into an aged-care facility.
Due to the condition’s prevalence and the unique challenges that come with it, the Commission stresses that dementia care should be “core business” for all aged care providers. More than 50% of people with dementia living in residential facilities require high levels of care. This is something many providers still struggle to deliver. Headlines exposing neglect and mistreatment in aged care homes have become an all-too-common occurrence. This needs to change. As our population ages, it is crucial that our methods of care adapt and evolve. Moving forward, dementia care that prioritises dignity and respect should not just be considered core business – it should be ingrained in our core values.