What is childhood dementia? And how could new research help?
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“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.
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Hack Your Hunger
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When it comes to dealing with hunger, a common-sense way of dealing with it is “eat something”. However, many people find that they then eat the wrong things, in the wrong quantities, and end up in a cycle of overeating and being hungry.
If this gets to the extreme, it can turn into a full-blown eating disorder:
Eating Disorders: More Varied (And Prevalent) Than People Think
…and even in more moderate presentations, the cycle of hunger and overeating is not great for the health. So, how to avoid that?
Listen to your body (but: actually listen)
Your body says: we’re running a little low on glycogen reserves so our energy’s going to start suffering in a few hours if we don’t eat some fruit, kill something and eat its fatty organs, or perhaps find some oily nuts.
You hear: eat something bright and sugary, shout at the dog, eat some fried food, got it!
Your body says: our water balance is a little off, we could do with some sodium, potassium, and perhaps some phosphorus to correct it.
You hear: eat something salty, got it, potato chips coming right up!
…and so on. Now, we know 10almonds readers are quite a health-conscious readership, so perhaps your responses are not quite like that. But the take-away point is still important: we need to listen to the whole message, and give the body what it actually needs, not what will just shut the message off the most quickly.
Here’s how: Intuitive Eating Might Not Be What You Think
Bonus: Interoception: Improving Our Awareness Of Body Cues
About those cravings…
As illustrated a little above, a lot of cravings might not be what they first appear, and in evolutionary terms, our body is centuries behind industrialization, in terms of adaptations, which means that even if we try to take the above into account, our responses can sometimes be inappropriate in the age of supermarkets.
See also: The Science of Hunger, And How To Sate Cravings
Natural appetite suppressants
Eating more is not always the answer, not even if it’s more healthy food. And hunger pangs can be especially inconvenient if, for example, we are fasting at present, which is by the way a very healthful thing for most people:
Learn more: Intermittent Fasting: What’s the truth?
One way to suppress hunger is simply to trigger the stomach into sending “full” signals, which involves filling it. Since you do not want to overeat, the trick here is imply to use high-volume food.
Consider for example: 30 grapes and 30 raisins have approximately the same calorie count (what with raisins being dried grapes, and the calories didn’t evaporate), but the bowl of fresh fruit is going to physically fill your stomach a lot more quickly than the tiny amount of dried fruit.
More on this: Some Surprising Truths About Hunger And Satiety
Protein is of course also an appetite suppressant, but it takes about 20 minutes for the signal to kick in. So a “hack” here is to snack on something proteinous at least 15 minutes before your main meal (for example, a portion of nuts while cooking, unless you’re allergic, or some dried fish unless you’re vegetarian/vegan; you get it, pick something high in protein and good for snacking, and have a small portion before your main meal).
Nor is protein the only option!
See also: 3 Natural Appetite Suppressants Better Than Ozempic
Scale it down
Related to the above, there is a feedback loop that occurs here. The more you eat, the more your stomach slowly grows to accommodate it; the less you eat, the more your stomach slowly shrinks because the body tries hard to be an efficient organism, and will not maintain something that isn’t being used.
So, there’s a bit of a catch-22; sate your hunger by filling your stomach with high volume foods, but filling it will cause it to grow?
The trick is: do the “eat until 80% full” thing. That’s full enough that you have had a nice meal and are not suffering, without stretching the stomach.
Enjoy your food
Seriously! Actually enjoy it. Which means paying full attention to it. Eating can and should be a wonderful experience, so it’s best savored rather than inhaling a bowl of something in 30 seconds.
Have you seen those dog bowls that have obstructions to slow down how quickly a dog eats? We can leverage that kind of trick too! While you might not want to eat from a dog bowl, how about having a little bowl of pistachio nuts rather than ready-to-eat peanuts? Or any shelled nuts that we must shell as we go. If you’re allergic to nuts, there are plenty of other foods with a high work-to-food ratio. Take some time and enjoy that pomegranate, for instance!
Not that we necessarily have to make things difficult for ourselves either; we can just take appropriate care to ensure a good dining experience. Life is for living, so why not enjoy it?
See also: Mindful Eating: How To Get More Out Of What’s On Your Plate
Enjoy!
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To Nap Or Not To Nap; That Is The Question
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It’s Q&A Day at 10almonds!
Have a question or a request? We love to hear from you!
In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!
As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!
So, no question/request too big or small
❝Is it good to nap in the afternoon, or better to get the famous 7 to 9 hours at night and leave it at that? I’m worried that daytime napping to make up for a shorter night’s sleep will just perpetuate and worsen it in the long run, is there a categorical answer here?❞
Short version: generally considered best is indeed the 7–9 hours at night (yes, including at older ages):
Why You Probably Need More Sleep
…and sleep efficiency does matter too:
Why 7 Hours Sleep Is Not Enough
…which in turn, is influenced by factors other than just length and depth:
The 6 Dimensions Of Sleep (And Why They Matter)
However! Knowing what is best in theory does not help at all if it’s unattainable in practice. So, if you’re not getting a good night’s sleep (and we’ll assume you’re already practising good sleep hygiene; fresh bedding, lights-off by a certain time, no alcohol or caffeine before bed, that kind of thing), then a first port-of-call may be sleep remedies:
Safe Effective Sleep Aids For Seniors
If even those don’t work, then napping is now likely your best back-up option. But, napping done incorrectly can indeed cause as many problems as it solves. There’s a difference between:
- “I napped and now I have energy again” and you continue with your day
- “Darkness took me, and I strayed out of thought and time. Stars wheeled overhead, and every day was as long as the life age of the earth—but it was not the end.” and now you’re not sure whether it’s day or night, whose house you’re in, or whether you’ve been drugged.
These two very common napping experiences are influenced by factors that we can control:
How To Nap Like A Pro (No More “Sleep Hangovers”!)
If you still prefer to not risk napping but do need at least some kind of refreshment that’s actually a refreshment and not just taking stimulants, then you might consider this practice (from yoga nidra) that gives some of the same benefits of sleep, without actually sleeping:
Non-Sleep Deep Rest: A Neurobiologist’s Insights
Take care!
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Pneumonia: Prevention Is Better Than Cure
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Pneumonia: What We Can & Can’t Do About It
Pneumonia is a significant killer of persons over the age of 65, with the risk increasing with age after that, rising very sharply around the age of 85:
While pneumonia is treatable, especially in young healthy adults, the risks get more severe in the older age brackets, and it’s often the case that someone goes into hospital with one thing, then develops pneumonia, which the person was already not in good physical shape to fight, because of whatever hospitalized them in the first place:
American Lung Association | Pneumonia Treatment and Recovery
Other risk factors besides age
There are a lot of things that can increase our risk factor for pneumonia; they mainly fall into the following categories:
- Autoimmune diseases
- Other diseases of the immune system (e.g. HIV)
- Medication-mediated immunosuppression (e.g. after an organ transplant)
- Chronic lung diseases (e.g. asthma, COPD, Long Covid, emphysema, etc)
- Other serious health conditions ← we know this one’s broad, but it encompasses such things as diabetes, heart disease, and cancer
See also:
Why Chronic Obstructive Pulmonary Disease (COPD) Is More Likely Than You Think
Things we can do about it
When it comes to risks, we can’t do much about our age and some of the other above factors, but there are other things we can do to reduce our risk, including:
- Get vaccinated against pneumonia if you are over 65 and/or have one of the aforementioned risk factors. This is not perfect (it only reduces the risk for certain kinds of infection) and may not be advisable for everyone (like most vaccines, it can put the body through its paces a bit after taking it), so speak with your own doctor about this, of course.
- See also: Vaccine Mythbusting
- Avoid contagion. While pneumonia itself is not spread person-to-person, it is caused by bacteria or viruses (there are numerous kinds) that are opportunistic and often become a secondary infection when the immune system is already busy with the first one. So, if possible avoid being in confined spaces with many people, and do wash your hands regularly (as a lot of germs are transferred that way and can get into the respiratory tract because you touched your face or such).
- See also: The Truth About Handwashing
- If you have a cold, or flu, or other respiratory infection, take it seriously, rest well, drink fluids, get good immune-boosting nutrients. There’s no such thing as “just a cold”; not anymore.
- Look after your general health too—health doesn’t exist in a vacuum, and nor does disease. Every part of us affects every other part of us, so anything that can be in good order, you want to be in good order.
This last one, by the way? It’s an important reminder that while some diseases (such as some of the respiratory infections that can precede pneumonia) are seasonal, good health isn’t.
We need to take care of our health as best we can every day along the way, because we never know when something could change.
Want to do more?
Check out: Seven Things To Do For Good Lung Health!
Take care!
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Why STIs Are On The Rise In Older Adults
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Three Little Words
Sexually Transmitted Infections (STIs) are often thought of as something that predominantly plagues younger people… The truth, however, is different:
❝Rising divorce rates, forgoing condoms as there is no risk of pregnancy, the availability of drugs for sexual dysfunction, the large number of older adults living together in retirement communities, and the increased use of dating apps are likely to have contributed to the growing incidence of STIs in the over-50s.
These data likely underestimate the true extent of the problem as limited access to sexual health services for the over 50s, and trying to avoid the stigma and embarrassment both on the part of older people and healthcare professionals, is leading to this age group not seeking help for STIs.❞
Read more: Managing The Rise In STIs Among Older Adults
That said, there is a gender gap when it comes to the increased risk, for example:
❝A retrospective study from the USA involving 420,790 couples aged 67 to 99 years, found that widowhood was associated with an increased risk of STIs in older men, but not women❞
~ US Dept of Health & Human Services
Source: CDC: | Sexually Transmitted Disease Surveillance
Is abstinence the best preventative, then?
It is inarguably the most effective, but not necessarily the best for everyone.
This is because for most adults, a healthy sex life is an important part of overall wellbeing.
See also: Mythbusting The Big O
Even in this case there is a gender gap in:
- the level of importance placed on frequency of sexual interactions
- what act(s) of sexuality are held to be most important:
❝Among sexually active men, frequent (≥2 times a month) sexual intercourse (P < .001) and frequent kissing, petting, or fondling (P < .001) were associated with greater enjoyment of life.
Among sexually active women, frequent kissing, petting, or fondling was also associated with greater enjoyment of life (P < .001), but there was no significant association with frequent intercourse (P = .101).
Concerns about one’s sex life and problems with sexual function were strongly associated with lower levels of enjoyment of life in men and to a lesser extent in women.❞
Source: Sexual Activity is Associated with Greater Enjoyment of Life in Older Adults
If you have the time to go into it much more deeply, this paper from the Journal of Gerontology is much more comprehensive, looking also at related lifestyle factors, religious/political backgrounds, views on monogamy or non-monogamy (of various kinds), hormonal considerations, the impact of dementia or other long-term disabilities that may affect things, widowhood, and many other elements:
The National Social Life, Health, and Aging Project: An Introduction
What’s the best preventative, then?
Regular health screening for yourself and your partner(s) is an important key to preventative health when it comes to STIs.
You can Google search for a local STI clinic, and worry not, they are invariably discreet and are well-used to everybody coming in. They’re just glad you’re being responsible about things. It’s also not their job to judge your sexual activities, even if it’s something you might have reason to wish to be secretive about, try to be honest there.
Secondly, most of the usual advice about safe sex still goes, even when there’s no risk of pregnancy. For example, if there’s at least one penis involved, then condoms remain the #1 barrier to all manner of potential infections (we know, almost nobody likes condoms, but sometimes the truth isn’t what we want to hear).
Lastly, if there’s at least one vagina involved, then please for the love of all that is holey, do not put anything there that could cause a yeast infection.
What can cause a yeast infection? Pretty much anything with sugar, which includes but is not limited to:
- Most kinds of food that Cosmo-style “liven things up in the bedroom” advice columns might suggest using (including fruit, honey, chocolate sauce, whipped cream, etc)
- Hands that are not clean (watch out for bacteria too)
- A mouth that has recently been eating or drinking anything with sugar in it, and that includes many kinds of alcohol, as well as milk or hot drinks that had milk in
Yeast infections are not nearly so serious as the STIs the other measures are there to avoid, but they’re not fun either, so some sensible policies in that regard are always good!
On a related note, see also: How To Avoid UTIs
Recap on the single most important part of this article:
At all ages, it remains a good health practice—unless one is absolutely celibate—to regularly get oneself and one’s partner(s) checked for STIs.
Take care!
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Five Advance Warnings of Multiple Sclerosis
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Five Advance Warnings of Multiple Sclerosis
First things first, a quick check-in with regard to how much you know about multiple sclerosis (MS):
- Do you know what causes it?
- Do you know how it happens?
- Do you know how it can be fixed?
If your answer to the above questions is “no”, then take solace in the fact that modern science doesn’t know either.
What we do know is that it’s an autoimmune condition, and that it results in the degradation of myelin, the “insulator” of nerves, in the central nervous system.
- How exactly this is brought about remains unclear, though there are several leading hypotheses including autoimmune attack of myelin itself, or disruption to the production of myelin.
- Treatments look to reduce/mitigate inflammation, and/or treat other symptoms (which are many and various) on an as-needed basis.
If you’re wondering about the prognosis after diagnosis, the scientific consensus on that is also “we don’t know”:
Read: Personalized medicine in multiple sclerosis: hope or reality?
this paper, like every other one we considered putting in that spot, concludes with basically begging for research to be done to identify biomarkers in a useful fashion that could help classify many distinct forms of MS, rather than the current “you have MS, but who knows what that will mean for you personally because it’s so varied” approach.
The Five Advance Warning Signs
Something we do know! First, we’ll quote directly the researchers’ conclusion:
❝We identified 5 health conditions associated with subsequent MS diagnosis, which may be considered not only prodromal but also early-stage symptoms.
However, these health conditions overlap with prodrome of two other autoimmune diseases, hence they lack specificity to MS.❞
So, these things are a warning, five alarm bells, but not necessarily diagnostic criteria.
Without further ado, the five things are:
- depression
- sexual disorders
- constipation
- cystitis
- urinary tract infections
❝This association was sufficiently robust at the statistical level for us to state that these are early clinical warning signs, probably related to damage to the nervous system, in patients who will later be diagnosed with multiple sclerosis.
The overrepresentation of these symptoms persisted and even increased over the five years after diagnosis.❞
Read the paper for yourself:
Hot off the press! Published only yesterday!
Want to know more about MS?
Here’s a very comprehensive guide:
National clinical guideline for diagnosis and management of multiple sclerosis
Take care!
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What Is “75 Hard”?
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This is Andy Frisella. He’s not a doctor, scientist, nutritionist, personal trainer, or professional athlete, but he has kicked off a viral fitness challenge, so let’s take a look at it:
What it is
Firstly, Frisella asserts that it’s not a fitness challenge, but rather, he describes it as a “transformative mental toughness program”.
Here’s what it consists of:
- Follow a healthy diet plan with no deviations from it (i.e. no “cheat days”)
- Abstain from alcohol
- Exercise 2x per day, 45 minutes each
- One of the exercise sessions each day must be outside
- No rest days
- Drink 3.5 liters of water per day
And the duration? 75 days, hence the name of the
fitness challengetransformative mental toughness program.Why it is
Frisella’s rationale is:
- we must cultivate mental toughness by doing hard things
- allowing ourselves any deviation would be a sign of mental weakness
- if we allow ourselves to deviate, it becomes a habit
For this reason, he does not “allow” any substitutions, for example if somebody wants to do such-and-such a thing slightly differently instead. We put “allow” in quotation marks because of course, he’s not the boss of you, but per the rules of his challenge, at least.
These reasonings are in and of themselves somewhat sound, however, we at 10almonds would argue:
- before doing hard things, it is good to first consider “is it a good idea?” (amputating your leg using only a spork is a “hard thing”, and demonstrates incredible mental toughness, but that doesn’t make it a good idea)
- while being able to decide to do a thing and then do it is great characteristic to have, it’s good to first consider science; for example, restrictive diets with no flexibility simply do not work, and our bodies do require adequate rest, especially if being pushed through hard things, or problems will happen (injuries, illnesses, etc).
- while it’s true that allowing ourselves to deviate can become a habit, it’s good to first consider what habits we want to make, and make those habits, instead of potentially unsustainable or even simply unpleasant ones.
See also: What Flexible Dieting Really Means: When Flexibility Is The Dish Of The Day
And for that matter: How To Really Pick Up (And Keep!) Those Habits
Want a “75 Gentle” instead?
If you like the idea of making new habits, but are not sure if extreme (and perhaps arbitrary) standards are the ones you want to hold, check out:
Cori Lefkowith’s 25 Healthy Habits That Will Change Your Life
Take care!
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