Attention deficit hyperactivity disorder (ADHD) is a condition that can affect all stages of life. Medication is not the only treatment, but it is often the treatment that can make the most obvious difference to a person who has difficulties focusing attention, sitting still or not acting on impulse.

But what happens once you’ve found the medication that works for you or your child? Do you just keep taking it forever? Here’s what to consider.

What are ADHD medications?

The mainstay of medication for ADHD is stimulants. These include methylphenidate (with brand names Ritalin, Concerta) and dexamfetamine. There is also lisdexamfetamine (branded Vyvanse), a “prodrug” of dexamfetamine (it has a protein molecule attached, which is removed in the body to release dexamfetamine).

There are also non-stimulants, in particular atomoxetine and guanfacine, which are used less often but can also be highly effective. Non-stimulants can be prescribed by GPs but this may not always be covered by the Pharmaceutical Benefits Scheme and could cost more.

How stimulants work

Some stimulants prescribed for ADHD are “short acting”. This means the effect comes on after around 20 minutes and lasts around four hours.

Longer-acting stimulants give a longer-lasting effect, usually by releasing medication more slowly. The choice between the two will be guided by whether the person wants to take medication once a day or prefers to target the medication effect to specific times or tasks.

For the stimulants (with the possible exception of lisdexamfetamine) there is very little carry-over effect to the next day. This means the symptoms of ADHD may be very obvious until the first dose of the morning takes effect.

One of the main aims of treatment is the person with ADHD should live their best life and achieve their goals. In young children it is the parents who have to consider the risks and benefits on behalf of the child. As children mature, their role in decision making increases.

What about side effects?

The most consistent side effects of the stimulants are they suppress appetite, resulting in weight loss. In children this is associated with temporary slowing of the growth rate and perhaps a slight delay in pubertal development. They can also increase the heart rate and may cause a rise in blood pressure. Stimulants often cause insomnia.

These changes are largely reversible on stopping medication. However, there is concern the small rises in blood pressure could accelerate the rate of heart disease, so people who take medication over a number of years might have heart attacks or strokes slightly sooner than would have happened otherwise.

This does not mean older adults should not have their ADHD treated. Rather, they should be aware of the potential risks so they can make an informed decision. They should also make sure high blood pressure and attacks of chest pain are taken seriously.

Stimulants can be associated with stomach ache or headache. These effects may lessen over time or with a reduction in dose. While there have been reports about stimulants being misused by students, research on the risks of long-term prescription stimulant dependence is lacking.

Will medication be needed long term?

Although ADHD can affect a person’s functioning at all stages of their life, most people stop medication within the first two years.

People may stop taking it because they don’t like the way it makes them feel, or don’t like taking medication at all. Their short period on medication may have helped them develop a better understanding of themselves and how best to manage their ADHD.

In teenagers the medication may lose its effectiveness as they outgrow their dose and so they stop taking it. But this should be differentiated from tolerance, when the dose becomes less effective and there are only temporary improvements with dose increases.

Tolerance may be managed by taking short breaks from medication, switching from one stimulant to another or using a non-stimulant.

Too many prescriptions?

ADHD is becoming increasingly recognised, with more people – 2–5% of adults and 5–10% of children – being diagnosed. In Australia stimulants are highly regulated and mainly prescribed by specialists (paediatricians or psychiatrists), though this differs from state to state. As case loads grow for this lifelong diagnosis, there just aren’t enough specialists to fit everyone in.

In November, a Senate inquiry report into ADHD assessment and support services highlighted the desperation experienced by people seeking treatment.

There have already been changes to the legislation in New South Wales that may lead to more GPs being able to treat ADHD. Further training could help GPs feel more confident to manage ADHD. This could be in a shared-care arrangement or independent management of ADHD by GPs like a model being piloted at Nepean Blue Mountains Local Health District, with GPs training within an ADHD clinic (where I am a specialist clinician).

Not every person with ADHD will need or want to take medication. However, it should be more easily available for those who could find it helpful.

Alison Poulton, Senior Lecturer, Brain Mind Centre Nepean, University of Sydney

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

“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.