Scientia potentia est. Knowledge is power. This widely acknowledged truism applies in so much of our modern world particularly in fields where technology is rapidly evolving access to information in digestible forms such as health diagnostics and health care. Yet for all the advancement in these areas, there is still much that is unknown about dementia - the 2nd leading cause of death of Australians(1) and a problem that runs into the tens of billions of dollars each year (trillions globally).
Sometimes scenarios with such mind boggling numbers feel so overwhelming that any sort of action feels pointless. But for the 413,000(2) families living with dementia today and the 520,000(2) families who in 2025 will be facing into a future where this will be part of their lives, we must take power over this situation. And that starts with knowledge.
When I was 16, my knowledge of dementia was contained to something that happens to really old people. And that it was a bit undignifying, led to old people "wandering off" and "losing their memory" (more on those later). When Dad was driving me home from school one evening and couldn't remember which street to take I might have known then that something was not right. And I might have encouraged him to go to the doctor and undergo some testing. But neither I nor my family knew anything about dementia so the many warning signals went unchecked until some really bad things started happening and the degeneration took off with apace. The emotional toll was high, the financial toll equally so and the lack of knowledge disempowered the whole family resulting in bad decisions and a lot of guilt. It was seismic. I can't imagine anything ever again being so devastating.
My family is far from unique. This happens every day to another 244(2) Australians who are newly diagnosed with the illness and who, with their family and friends, will also feel devastated then bewildered about the future they are facing into.
Knowledge = options = power.
Dementia is a complex condition where good outcomes depend on the aligning of highly specialised knowledge and support systems to deliver effective management and care. This is expensive – Australia spends over $14bn(3) each year yet knowledge levels around key aspects of dementia are much lower than other less common and less costly conditions. Alzheimer's Australia found that almost 50% off the general public felt frustrated because they were unsure of how to help people with dementia(4). Knowledge around the options available – for prevention, detection, treatment or care – is not evenly distributed. In the absence of knowledge, there cannot be options, without options there is no power.
So where are the knowledge gaps and how do we fill them?
Social prejudices, caused by knowledge gaps, accompany dementia and this often leads to social isolation – for both the diagnosed and the family. My family's experience was that long time family friends evaporated overnight such was their discomfort and incompetence in understanding how to handle interactions which had become more challenging. Social isolation felt by the individual and especially their carer is a major contributor to depression and illness which can in turn lead to premature placement of the family member in residential care. When carers and families are educated and supported, people living with dementia have an improved quality of life, better health and wellbeing and live in the community for longer. There is a large appetite from the general public to learn more and to be part of communities that are much better educated around the complexities of dementia.
Signs and symptoms of dementia aren't as widely known as we might think yet this knowledge is essential to help individuals and families notice changes then adjust earlier to a diagnosis. Although clinical trials in dementia have failed to result in curative treatment, they have shown that quality screening programmes can identify individuals with Alzheimer's disease up to 10 years before they receive a clinical diagnosis and the cognition biomarker can indicate an elevated risk of dementia before any symptoms manifest. Early detection of dementia means more time and space to plan and adjust, and access medication or cognition treatments whose efficacy depends on early usage.
The financial costs of dementia are substantial and growing. For some time insurers have paid claims related to dementia for various Life, CI, TPD and IP policies without a lot of thought to whether we've correctly pegged severity to financial need. Swiss Re ANZ now knows a lot more about the financial costs of dementia through 2 years of research with government, specialist dementia care providers, Alzheimer's Australia, academic institutions and Australian families. We know that combinations of funding and services provides options for families, empowering them to put in place co-ordinated arrangements encompassing care, training, counselling, monitoring, without sitting on wait lists for state funded assessments and access to supply-constrained care packages.
Specialised expertise is critical for what is a highly complex illness however the rapid growth of new care providers following the Consumer Directed Care initiative has created concerns about the capabilities and qualification of these providers who have little experience in working with people with dementia. Failed care services and residential care breakdowns lead to hospitalisation and without more specialist dementia services, this will increase. But without more funding, the capacity and quality levels of this specialist service sector will not change. This vicious cycle that can be broken by Australians making better private provisioning for dementia costs - insurance is a new and efficient way to do this.
Risk factors and biomarkers could be game changing. There are at least 9 preventable risk factors which attribute to 35% of dementia diagnoses(5). Reducing the annual incidence rates for dementia in people aged 65 years and above by 5% would lead to a 7% reduction in the number of people with dementia in the Australian population by 2025 and a 24% reduction by 2056 saving over $120bn. Knowing the behaviours that can prevent dementia provides us all with considerable personal power over how our brains will age.
Providing insurance solutions that use known risk factors and biomarkers to reduce customers' dementia risk through knowledge sharing, coaching and regular screening will be increasingly relevant and valued. New partnerships that provide different, longitudinal data enabling re/insurers to more accurately predict and price for dementia risk cost are an important part of the way forward.
Emeritus Professor Steven Sabat from Georgetown University asks, why is it that I, as someone without dementia, goes for a walk yet if I have dementia,
I am "wandering off"? Professor Sabat has devoted to 35 years to dementia research and his mission now is to build knowledge that dispels the myths around dementia. He asked for our help with one of these – the myth that people with dementia "lose their memory" (note dementia can mean difficulty with retrieval, it is not memory loss).
He explained why this is so important:
If people with dementia have memory loss they supposedly cannot make new memories; and
If they cannot make new memories, they cannot be affected for very long by what happens to them in the here and now; and
If they cannot be affected by recent events it doesn't matter how we treat them because "they won't remember anyway".
Today we're using the platform of Global Alzheimer's Awareness Day to continue the knowledge building and myth dispelling. There is so much Swiss Re can and will contribute to the work of dementia charities, clinicians, research institutions, governments globally to materially improve knowledge about dementia while empowering consumers with financial options that lead to different, positive, human outcomes for dementia.
(1) Australian Bureau of Statistics (2015) Causes of Death, Australia, 2015 (cat. no. 3303.0)
(2) The National Centre of Social and Economic Modelling (NATSEM) for Alzheimer's Australia (2017). Economic Cost of dementia in Australia 2016-2056
(3) Alzheimer's Australia Report 2017 Dementia and the impact of stigma
(4) The Lancet July 2017. Dementia prevention, intervention and care
(5) Consumer Direct Care -The Aged Care Legislation Amendment (Increasing Consumer Choice) Act 2016 (the Amendment Act) gave to effect Consumer Directed Care (5) (CDC) as a new model of home care service delivery designed to give more choice and flexibility to consumers.
Category: Funding longer lives: Health/medicine, Long-term care, Longevity risk, Pension/retirement, Social contract