“Childhood” and “dementia” are two words we wish we didn’t have to use together. But sadly, around 1,400 Australian children and young people live with currently untreatable childhood dementia.

Broadly speaking, childhood dementia is caused by any one of more than 100 rare genetic disorders. Although the causes differ from dementia acquired later in life, the progressive nature of the illness is the same.

Half of infants and children diagnosed with childhood dementia will not reach their tenth birthday, and most will die before turning 18.

Yet this devastating condition has lacked awareness, and importantly, the research attention needed to work towards treatments and a cure.

More about the causes

Most types of childhood dementia are caused by mutations (or mistakes) in our DNA. These mistakes lead to a range of rare genetic disorders, which in turn cause childhood dementia.

Two-thirds of childhood dementia disorders are caused by “inborn errors of metabolism”. This means the metabolic pathways involved in the breakdown of carbohydrates, lipids, fatty acids and proteins in the body fail.

As a result, nerve pathways fail to function, neurons (nerve cells that send messages around the body) die, and progressive cognitive decline occurs.

What happens to children with childhood dementia?

Most children initially appear unaffected. But after a period of apparently normal development, children with childhood dementia progressively lose all previously acquired skills and abilities, such as talking, walking, learning, remembering and reasoning.

Childhood dementia also leads to significant changes in behaviour, such as aggression and hyperactivity. Severe sleep disturbance is common and vision and hearing can also be affected. Many children have seizures.

The age when symptoms start can vary, depending partly on the particular genetic disorder causing the dementia, but the average is around two years old. The symptoms are caused by significant, progressive brain damage.

Are there any treatments available?

Childhood dementia treatments currently under evaluation or approved are for a very limited number of disorders, and are only available in some parts of the world. These include gene replacement, gene-modified cell therapy and protein or enzyme replacement therapy. Enzyme replacement therapy is available in Australia for one form of childhood dementia. These therapies attempt to “fix” the problems causing the disease, and have shown promising results.

Other experimental therapies include ones that target faulty protein production or reduce inflammation in the brain.

Research attention is lacking

Death rates for Australian children with cancer nearly halved between 1997 and 2017 thanks to research that has enabled the development of multiple treatments. But over recent decades, nothing has changed for children with dementia.

In 2017–2023, research for childhood cancer received over four times more funding per patient compared to funding for childhood dementia. This is despite childhood dementia causing a similar number of deaths each year as childhood cancer.

The success for childhood cancer sufferers in recent decades demonstrates how adequately funding medical research can lead to improvements in patient outcomes.

Another bottleneck for childhood dementia patients in Australia is the lack of access to clinical trials. An analysis published in March this year showed that in December 2023, only two clinical trials were recruiting patients with childhood dementia in Australia.

Worldwide however, 54 trials were recruiting, meaning Australian patients and their families are left watching patients in other parts of the world receive potentially lifesaving treatments, with no recourse themselves.

That said, we’ve seen a slowing in the establishment of clinical trials for childhood dementia across the world in recent years.

In addition, we know from consultation with families that current care and support systems are not meeting the needs of children with dementia and their families.

New research

Recently, we were awarded new funding for our research on childhood dementia. This will help us continue and expand studies that seek to develop lifesaving treatments.

More broadly, we need to see increased funding in Australia and around the world for research to develop and translate treatments for the broad spectrum of childhood dementia conditions.

Dr Kristina Elvidge, head of research at the Childhood Dementia Initiative, and Megan Maack, director and CEO, contributed to this article.

Kim Hemsley, Head, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University; Nicholas Smith, Head, Paediatric Neurodegenerative Diseases Research Group, University of Adelaide, and Siti Mubarokah, Research Associate, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Receiving a cancer diagnosis is life-changing and can cause a range of concerns about ongoing health.

Fear of cancer returning is one of the top health concerns. And managing this fear is an important part of cancer treatment.

But how likely is it to get cancer for a second time?

Why can cancer return?

While initial cancer treatment may seem successful, sometimes a few cancer cells remain dormant. Over time, these cancer cells can grow again and may start to cause symptoms.

This is known as cancer recurrence: when a cancer returns after a period of remission. This period could be days, months or even years. The new cancer is the same type as the original cancer, but can sometimes grow in a new location through a process called metastasis.

Actor Hugh Jackman has gone public about his multiple diagnoses of basal cell carcinoma (a type of skin cancer) over the past decade.

The exact reason why cancer returns differs depending on the cancer type and the treatment received. Research is ongoing to identify genes associated with cancers returning. This may eventually allow doctors to tailor treatments for high-risk people.

What are the chances of cancer returning?

The risk of cancer returning differs between cancers, and between sub-types of the same cancer.

New screening and treatment options have seen reductions in recurrence rates for many types of cancer. For example, between 2004 and 2019, the risk of colon cancer recurring dropped by 31-68%. It is important to remember that only someone’s treatment team can assess an individual’s personal risk of cancer returning.

For most types of cancer, the highest risk of cancer returning is within the first three years after entering remission. This is because any leftover cancer cells not killed by treatment are likely to start growing again sooner rather than later. Three years after entering remission, recurrence rates for most cancers decrease, meaning that every day that passes lowers the risk of the cancer returning.

Every day that passes also increases the numbers of new discoveries, and cancer drugs being developed.

What about second, unrelated cancers?

Earlier this year, we learned Sarah Ferguson, Duchess of York, had been diagnosed with malignant melanoma (a type of skin cancer) shortly after being treated for breast cancer.

Although details have not been confirmed, this is likely a new cancer that isn’t a recurrence or metastasis of the first one.

Australian research from Queensland and Tasmania shows adults who have had cancer have around a 6-36% higher risk of developing a second primary cancer compared to the risk of cancer in the general population.

Who’s at risk of another, unrelated cancer?

With improvements in cancer diagnosis and treatment, people diagnosed with cancer are living longer than ever. This means they need to consider their long-term health, including their risk of developing another unrelated cancer.

Reasons for such cancers include different types of cancers sharing the same kind of lifestyle, environmental and genetic risk factors.

The increased risk is also likely partly due to the effects that some cancer treatments and imaging procedures have on the body. However, this increased risk is relatively small when compared with the (sometimes lifesaving) benefits of these treatment and procedures.

While a 6-36% greater chance of getting a second, unrelated cancer may seem large, only around 10-12% of participants developed a second cancer in the Australian studies we mentioned. Both had a median follow-up time of around five years.

Similarly, in a large US study only about one in 12 adult cancer patients developed a second type of cancer in the follow-up period (an average of seven years).

The kind of first cancer you had also affects your risk of a second, unrelated cancer, as well as the type of second cancer you are at risk of. For example, in the two Australian studies we mentioned, the risk of a second cancer was greater for people with an initial diagnosis of head and neck cancer, or a haematological (blood) cancer.

People diagnosed with cancer as a child, adolescent or young adult also have a greater risk of a second, unrelated cancer.

What can I do to lower my risk?

Regular follow-up examinations can give peace of mind, and ensure any subsequent cancer is caught early, when there’s the best chance of successful treatment.

Maintenance therapy may be used to reduce the risk of some types of cancer returning. However, despite ongoing research, there are no specific treatments against cancer recurrence or developing a second, unrelated cancer.

But there are things you can do to help lower your general risk of cancer – not smoking, being physically active, eating well, maintaining a healthy body weight, limiting alcohol intake and being sun safe. These all reduce the chance of cancer returning and getting a second cancer.

Sarah Diepstraten, Senior Research Officer, Blood Cells and Blood Cancer Division, Walter and Eliza Hall Institute and Terry Boyle, Senior Lecturer in Cancer Epidemiology, University of South Australia

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Around one in six Australians has some form of hearing loss, ranging from mild to complete hearing loss. That figure is expected to grow to one in four by 2050, due in a large part to the country’s ageing population.

Hearing loss affects communication and social engagement and limits educational and employment opportunities. Effective treatment for hearing loss is available in the form of communication training (for example, lipreading and auditory training), hearing aids and other devices.

But the uptake of treatment is low. In Australia, publicly subsidised hearing care is available predominantly only to children, young people and retirement-age people on a pension. Adults of working age are mostly not eligible for hearing health care under the government’s Hearing Services Program.

Our recent study published in the journal Ear and Hearing showed, for the first time, that working-age Australians from lower socioeconomic backgrounds are at much greater risk of hearing loss than those from higher socioeconomic backgrounds.

We believe the lack of socially subsidised hearing care for adults of working age results in poor detection and care for hearing loss among people from disadvantaged backgrounds. This in turn exacerbates social inequalities.

Population data shows hearing inequality

We analysed a large data set called the Household, Income and Labour Dynamics in Australia (HILDA) survey that collects information on various aspects of people’s lives, including health and hearing loss.

Using a HILDA sub-sample of 10,719 working-age Australians, we evaluated whether self-reported hearing loss was more common among people from lower socioeconomic backgrounds than for those from higher socioeconomic backgrounds between 2008 and 2018.

Relying on self-reported hearing data instead of information from hearing tests is one limitation of our paper. However, self-reported hearing tends to underestimate actual rates of hearing impairment, so the hearing loss rates we reported are likely an underestimate.

We also wanted to find out whether people from lower socioeconomic backgrounds were more likely to develop hearing loss in the long run.

We found people in the lowest income groups were more than twice as likely to have hearing loss than those in the highest income groups. Further, hearing loss was 1.5 times as common among people living in the most deprived neighbourhoods than in the most affluent areas.

For people reporting no hearing loss at the beginning of the study, after 11 years of follow up, those from a more deprived socioeconomic background were much more likely to develop hearing loss. For example, a lack of post secondary education was associated with a more than 1.5 times increased risk of developing hearing loss compared to those who achieved a bachelor’s degree or above.

Overall, men were more likely to have hearing loss than women. As seen in the figure below, this gap is largest for people of low socioeconomic status.

Why are disadvantaged groups more likely to experience hearing loss?

There are several possible reasons hearing loss is more common among people from low socioeconomic backgrounds. Noise exposure is one of the biggest risks for hearing loss and people from low socioeconomic backgrounds may be more likely to be exposed to damaging levels of noise in jobs in mining, construction, manufacturing, and agriculture.

Lifestyle factors which may be more prevalent in lower socioeconomic communities such as smoking, unhealthy diet, and a lack of regular exercise are also related to the risk of hearing loss.

Finally, people with lower incomes may face challenges in accessing timely hearing care, alongside competing health needs, which could lead to missed identification of treatable ear disease.

Why does this disparity in hearing loss matter?

We like to think of Australia as an egalitarian society – the land of the fair go. But nearly half of people in Australia with hearing loss are of working age and mostly ineligible for publicly funded hearing services.

Hearing aids with a private hearing care provider cost from around A$1,000 up to more than $4,000 for higher-end devices. Most people need two hearing aids.

Lack of access to affordable hearing care for working-age adults on low incomes comes with an economic as well as a social cost.

Previous economic analysis estimated hearing loss was responsible for financial costs of around $20 billion in 2019–20 in Australia. The largest component of these costs was productivity losses (unemployment, under-employment and Jobseeker social security payment costs) among working-age adults.

Providing affordable hearing care for all Australians

Lack of affordable hearing care for working-age adults from lower socioeconomic backgrounds may significantly exacerbate the impact of hearing loss among deprived communities and worsen social inequalities.

Recently, the federal government has been considering extending publicly subsidised hearing services to lower income working age Australians. We believe reforming the current government Hearing Services Program and expanding eligibility to this group could not only promote a more inclusive, fairer and healthier society but may also yield overall cost savings by reducing lost productivity.

All Australians should have access to affordable hearing care to have sufficient functional hearing to achieve their potential in life. That’s the land of the fair go.

Mohammad Nure Alam, PhD Candidate in Economics, Macquarie University; Kompal Sinha, Associate Professor, Department of Economics, Macquarie University, and Piers Dawes, Professor, School of Health and Rehabilitation Sciences, The University of Queensland

This article is republished from The Conversation under a Creative Commons license. Read the original article.