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.

A father with his son on his shoulders in a park.
Childhood dementia is linked to rare genetic disorders. maxim ibragimov/Shutterstock

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.

An old woman holds a young girl on her lap.
Dementia is not just a disease of older people. Miljan Zivkovic/Shutterstock

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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  • How does cancer spread to other parts of the body?

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    All cancers begin in a single organ or tissue, such as the lungs or skin. When these cancers are confined in their original organ or tissue, they are generally more treatable.

    But a cancer that spreads is much more dangerous, as the organs it spreads to may be vital organs. A skin cancer, for example, might spread to the brain.

    This new growth makes the cancer much more challenging to treat, as it can be difficult to find all the new tumours. If a cancer can invade different organs or tissues, it can quickly become lethal.

    When cancer spreads in this way, it’s called metastasis. Metastasis is responsible for the majority (67%) of cancer deaths.

    Cells are supposed to stick to surrounding tissue

    Our bodies are made up of trillions of tiny cells. To keep us healthy, our bodies are constantly replacing old or damaged cells.

    Each cell has a specific job and a set of instructions (DNA) that tells it what to do. However, sometimes DNA can get damaged.

    This damage might change the instructions. A cell might now multiply uncontrollably, or lose a property known as adherence. This refers to how sticky a cell is, and how well it can cling to other surrounding cells and stay where it’s supposed to be.

    If a cancer cell loses its adherence, it can break off from the original tumour and travel through the bloodstream or lymphatic system to almost anywhere. This is how metastasis happens.

    Many of these travelling cancer cells will die, but some will settle in a new location and begin to form new cancers.

    Cancer cells
    Some cells settle in a new location.
    Scipro/Shutterstock

    Particular cancers are more likely to metastasise to particular organs that help support their growth. Breast cancers commonly metastasise to the bones, liver, and lungs, while skin cancers like melanomas are more likely to end up in the brain and heart.

    Unlike cancers which form in solid organs or tissues, blood cancers like leukaemia already move freely through the bloodstream, but can escape to settle in other organs like the liver or brain.

    When do cancers metastasise?

    The longer a cancer grows, the more likely it is to metastasise. If not caught early, a patient’s cancer may have metastasised even before it’s initially diagnosed.

    Metastasis can also occur after cancer treatment. This happens when cancer cells are dormant during treatment – drugs may not “see” those cells. These invisible cells can remain hidden in the body, only to wake up and begin growing into a new cancer months or even years later.

    For patients who already have cancer metastases at diagnosis, identifying the location of the original tumour – called the “primary site” – is important. A cancer that began in the breast but has spread to the liver will probably still behave like a breast cancer, and so will respond best to an anti-breast cancer therapy, and not anti-liver cancer therapy.

    As metastases can sometimes grow faster than the original tumour, it’s not always easy to tell which tumour came first. These cancers are called “cancers of unknown primary” and are the 11th most commonly diagnosed cancers in Australia.

    One way to improve the treatment of metastatic cancer is to improve our ways of detecting and identifying cancers, to ensure patients receive the most effective drugs for their cancer type.

    What increases the chances of metastasis and how can it be prevented?

    If left untreated, most cancers will eventually acquire the ability to metastasise.

    While there are currently no interventions that specifically prevent metastasis, cancer patients who have their tumours surgically removed may also be given chemotherapy (or other drugs) to try and weed out any hidden cancer cells still floating around.

    The best way to prevent metastasis is to diagnose and treat cancers early. Cancer screening initiatives such as Australia’s cervical, bowel, and breast cancer screening programs are excellent ways to detect cancers early and reduce the chances of metastasis.

    Older woman has mammogram
    The best way to prevent cancer spreading is to diagnose and treat them early.
    Peakstock/Shutterstock

    New screening programs to detect cancers early are being researched for many types of cancer. Some of these are simple: CT scans of the body to look for any potential tumours, such as in England’s new lung cancer screening program.

    Using artificial intelligence (AI) to help examine patient scans is also possible, which might identify new patterns that suggest a cancer is present, and improve cancer detection from these programs.

    More advanced screening methods are also in development. The United States government’s Cancer Moonshot program is currently funding research into blood tests that could detect many types of cancer at early stages.

    One day there might even be a RAT-type test for cancer, like there is for COVID.

    Will we be able to prevent metastasis in the future?

    Understanding how metastasis occurs allows us to figure out new ways to prevent it. One idea is to target dormant cancer cells and prevent them from waking up.

    Directly preventing metastasis with drugs is not yet possible. But there is hope that as research efforts continue to improve cancer therapies, they will also be more effective at treating metastatic cancers.

    For now, early detection is the best way to ensure a patient can beat their cancer.The Conversation

    Sarah Diepstraten, Senior Research Officer, Blood Cells and Blood Cancer Division, Walter and Eliza Hall Institute and John (Eddie) La Marca, Senior Resarch Officer, Walter and Eliza Hall Institute

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

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  • Chetna’s Healthy Indian – by Chetna Makan

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    Indian food is wonderful—a subjective opinion perhaps, but a popular view, and one this reviewer certainly shares. And of course, cooking with plenty of vegetables and spices is a great way to get a lot of health benefits.

    There are usually downsides though, such as that in a lot of Indian cookbooks, every second thing is deep-fried, and what’s not deep-fried contains an entire day or more’s saturated fat content in ghee, and a lot of sides have more than their fair share of sugar.

    This book fixes all that, by offering 80 recipes that prioritize health without sacrificing flavor.

    The recipes are, as the title suggests, vegetarian, though many are not vegan (yogurt and cheese featuring in many recipes). That said, even if you are vegan, it’s pretty easy to veganize those with the obvious plant-based substitutions. If you have soy yogurt and can whip up vegan paneer yourself (here’s our own recipe for that), you’re pretty much sorted.

    The cookbook strikes a good balance of being neither complicated nor “did we really need a recipe for this?” basic, and delivers value in all of its recipes. The ingredients, often a worry for many Westerners, should be easily found if you have a well-stocked supermarket near you; there’s nothing obscure here.

    Bottom line: if you’d like to cook more Indian food and want your food to be exciting without also making your blood pressure exciting, then this is an excellent book for keeping you well-nourished, body and soul.

    Click here to check out Chetna’s Healthy Indian, and spice up your culinary repertoire!

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  • Healthy Butternut Macaroni Cheese

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    A comfort food classic, healthy and plant-based, without skimping on the comfort.

    You will need

    • ½ butternut squash, peeled and cut into small pieces (if buying ready-chopped, this should be about 1 lb)
    • 1 onion, chopped
    • ¼ bulb garlic
    • 2 tbsp extra virgin olive oil
    • 12 oz (or thereabouts) wholegrain macaroni, or similar pasta shape (even penne works fine—which is good, as it’s often easier to buy wholegrain penne than wholegrain macaroni) (substitute with a gluten-free pasta such as buckwheat pasta, if avoiding gluten)
    • 6 oz (or thereabouts) cashews, soaked in hot water for at least 15 minutes (but longer is better)
    • ½ cup milk (your preference what kind; we recommend hazelnut for its mellow nutty flavor)
    • 3 tbsp nutritional yeast
    • Juice of ½ lemon
    • 2 tsp black pepper, coarse ground
    • ½ tsp MSG, or 1 tsp low-sodium salt
    • Optional: smoked paprika, to serve

    Note: if you are allergic to nuts, please accept our apologies that there’s no substitution available in this one. Simply put, removing the cashews would mean changing most of the rest of the recipe to compensate, so there’s no easy “or substitute with…” that we can mention. We’ll have to find/develop a good healthy plant-based no-nuts recipe for you at a later date.

    Method

    (we suggest you read everything at least once before doing anything)

    1) Preheat the oven to 400℉ / 200℃.

    2) Combine the butternut squash, onion, and garlic with the olive oil, in a large roasting tin, tossing thoroughly to ensure an even coat of oil. Roast them for about 25 minutes until soft.

    3) Cook the macaroni while you wait (this should take about 10 minutes or so in salted water), drain, and rinse thoroughly in cold water, before setting aside. This cooling increases the pasta’s resistant starch content (that’s good, for your gut and for your blood sugars, and thus also for your heart and brain), and it will maintain this benefit even when we reheat it later.

    4) Drain the cashews, and tip them into a high-speed blender with the milk, and process until smooth. Add the roasted vegetables and the remaining ingredients apart from the pasta, and continue to process until again smooth. You can add a little more milk if you need to, but go easy with it.

    5) Heat the sauce (that you just made in the food processor) gently in a saucepan, and refresh the pasta by pouring a kettle of boiling water through it in a colander.

    6) Optional: combine the pasta and sauce in an ovenproof dish or cast iron pan, and give it a few minutes under the hottest grill (or browning iron, if you have such) your oven can muster. Alternatively, use a culinary blowtorch, if you have one.

    7) Serve; and if you didn’t do the optional step above, this means combining the pasta and sauce. You can also dust the top with some extra seasonings if you like. Smoked paprika works well for this.

    Enjoy!

    Want to learn more?

    For those interested in some of the science of what we have going on today:

    Take care!

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  • Thinking of using an activity tracker to achieve your exercise goals? Here’s where it can help – and where it probably won’t

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    It’s that time of year when many people are getting started on their resolutions for the year ahead. Doing more physical activity is a popular and worthwhile goal.

    If you’re hoping to be more active in 2024, perhaps you’ve invested in an activity tracker, or you’re considering buying one.

    But what are the benefits of activity trackers? And will a basic tracker do the trick, or do you need a fancy one with lots of features? Let’s take a look.

    Why use an activity tracker?

    One of the most powerful predictors for being active is whether or not you are monitoring how active you are.

    Most people have a vague idea of how active they are, but this is inaccurate a lot of the time. Once people consciously start to keep track of how much activity they do, they often realise it’s less than what they thought, and this motivates them to be more active.

    You can self-monitor without an activity tracker (just by writing down what you do), but this method is hard to keep up in the long run and it’s also a lot less accurate compared to devices that track your every move 24/7.

    By tracking steps or “activity minutes” you can ascertain whether or not you are meeting the physical activity guidelines (150 minutes of moderate to vigorous physical activity per week).

    It also allows you to track how you’re progressing with any personal activity goals, and view your progress over time. All this would be difficult without an activity tracker.

    Research has shown the most popular brands of activity trackers are generally reliable when it comes to tracking basic measures such as steps and activity minutes.

    But wait, there’s more

    Many activity trackers on the market nowadays track a range of other measures which their manufacturers promote as important in monitoring health and fitness. But is this really the case? Let’s look at some of these.

    Resting heart rate

    This is your heart rate at rest, which is normally somewhere between 60 and 100 beats per minute. Your resting heart rate will gradually go down as you become fitter, especially if you’re doing a lot of high-intensity exercise. Your risk of dying of any cause (all-cause mortality) is much lower when you have a low resting heart rate.

    So, it is useful to keep an eye on your resting heart rate. Activity trackers are pretty good at tracking it, but you can also easily measure your heart rate by monitoring your pulse and using a stopwatch.

    Heart rate during exercise

    Activity trackers will also measure your heart rate when you’re active. To improve fitness efficiently, professional athletes focus on having their heart rate in certain “zones” when they’re exercising – so knowing their heart rate during exercise is important.

    But if you just want to be more active and healthier, without a specific training goal in mind, you can exercise at a level that feels good to you and not worry about your heart rate during activity. The most important thing is that you’re being active.

    Also, a dedicated heart rate monitor with a strap around your chest will do a much better job at measuring your actual heart rate compared to an activity tracker worn around your wrist.

    Maximal heart rate

    This is the hardest your heart could beat when you’re active, not something you could sustain very long. Your maximal heart rate is not influenced by how much exercise you do, or your fitness level.

    Most activity trackers don’t measure it accurately anyway, so you might as well forget about this one.

    VO₂max

    Your muscles need oxygen to work. The more oxygen your body can process, the harder you can work, and therefore the fitter you are.

    VO₂max is the volume (V) of oxygen (O₂) we could breathe maximally (max) over a one minute interval, expressed as millilitres of oxygen per kilogram of body weight per minute (ml/kg/min). Inactive women and men would have a VO₂max lower than 30 and 40 ml/kg/min, respectively. A reasonably good VO₂max would be mid thirties and higher for women and mid forties and higher for men.

    VO₂max is another measure of fitness that correlates well with all-cause mortality: the higher it is, the lower your risk of dying.

    For athletes, VO₂max is usually measured in a lab on a treadmill while wearing a mask that measures oxygen consumption. Activity trackers instead look at your running speed (using a GPS chip) and your heart rate and compare these measures to values from other people.

    If you can run fast with a low heart rate your tracker will assume you are relatively fit, resulting in a higher VO₂max. These estimates are not very accurate as they are based on lots of assumptions. However, the error of the measurement is reasonably consistent. This means if your VO₂max is gradually increasing, you are likely to be getting fitter.

    So what’s the take-home message? Focus on how many steps you take every day or the number of activity minutes you achieve. Even a basic activity tracker will measure these factors relatively accurately. There is no real need to track other measures and pay more for an activity tracker that records them, unless you are getting really serious about exercise.

    Corneel Vandelanotte, Professorial Research Fellow: Physical Activity and Health, CQUniversity Australia

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

    The Conversation

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  • Seven Steps to Managing Your Memory – by Dr. Andrew Budson & Dr. Maureen O’Connor

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    First, what this is not: a “how to improve your memory” book of the kind marketed to students and/or people who want to do memory-themed party tricks.

    What this book actually is: exactly what the title and subtitle claim it to be: seven steps to managing your memory: what’s normal, what’s not, and what to do about it.

    Drs. Budson & O’Connor cover:

    • which memory errors can (and usually do) happen at any age
    • how memory changes with normal aging, and
    • what kinds of memory problems are not normal.

    One thing that sets this book aside from a lot of its genre is that it also covers which kinds of memory loss are reversible—and, where appropriate, what can be undertaken to effect such a reversal.

    The authors talk about what things have (and what things haven’t!) been shown to strengthen memory and reduce cognitive decline, and in the worst case scenario, what medications can help against Alzheimer’s disease and other dementias.

    The style is halfway between pop-science and a science textbook. The structure of the book, with its headings, subheadings, bullet points, summaries, etc, helps the reader to process and remember the information.

    Bottom line: if you’d like to get on top of managing your memory before you forget, then this book is for you.

    Click here to check out Seven Steps to Managing Your Memory, and safeguard what’s most important to you!

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  • Relationships: When To Stick It Out & When To Call It Quits

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    Like A Ship Loves An Anchor?

    Today’s article may seem a little bit of a downer to start with, but don’t worry, it picks up again too. Simply put, we’ve written before about many of the good parts of relationships, e.g:

    Only One Kind Of Relationship Promotes Longevity This Much!

    …but what if that’s not what we have?

    Note: if you have a very happy, secure, fulfilling, joyous relationship, then, great! Or if you’re single and happy, then, also great! Hopefully you will still find today’s feature of use if you find yourself advising a friend or family member one day. So without further ado, let’s get to it…

    You may be familiar with the “sunk cost fallacy”; if not: it’s what happens when a person or group has already invested into a given thing, such that even though the thing is not going at all the way they hoped, they now want to continue trying to make that thing work, lest their previous investment be lost. But the truth is: if it’s not going to work, then the initial investment is already lost, and pouring out extra won’t help—it’ll just lose more.

    That “investment” in a given thing could be money, time, energy, or (often the case) a combination of the above.

    In the field of romance, the “sunk cost fallacy” keeps a lot of bad relationships going for longer than perhaps they should, and looking back (perhaps after a short adjustment period), the newly-single person says “why did I let that go on?” and vows to not make the same mistake again.

    But that prompts the question: how can we know when it’s right to “keep working on it, because relationships do involve work”, as perfectly reasonable relationship advice often goes, and when it’s right to call it quits?

    Should I stay or should I go?

    Some questions for you (or perhaps a friend you might find yourself advising) to consider:

    • What qualities do you consider the most important for a partner to have—and does your partner have them?
    • If you described the worst of your relationship to a close friend, would that friend feel bad for you?
    • Do you miss your partner when they’re away, or are you glad of the break? When they return, are they still glad to see you?
    • If you weren’t already in this relationship, would you seek to enter it now? (This takes away sunk cost and allows a more neutral assessment)
    • Do you feel completely safe with your partner (emotionally as well as physically), or must you tread carefully to avoid conflict?
    • If your partner decided tomorrow that they didn’t want to be with you anymore and left, would that be just a heartbreak, or an exciting beginning of a new chapter in your life?
    • What things would you generally consider dealbreakers in a relationship—and has your partner done any of them?

    The last one can be surprising, by the way. We often see or hear of other people’s adverse relationship situations and think “I would never allow…” yet when we are in a relationship and in love, there’s a good chance that we might indeed allow—or rather, excuse, overlook, and forgive.

    And, patience and forgiveness certainly aren’t inherently bad traits to have—it’s just good to deploy them consciously, and not merely be a doormat.

    Either way, reflect (or advise your friend/family member to reflect, as applicable) on the “score” from the above questions.

    • If the score is good, then maybe it really is just a rough patch, and the tools we link at the top and bottom of this article might help.
    • If the score is bad, the relationship is bad, and no amount of historic love or miles clocked up together will change that. Sometimes it’s not even anyone’s fault; sometimes a relationship just ran its course, and now it’s time to accept that and turn to a new chapter.

    “At my age…”

    As we get older, it’s easy for that sunk cost fallacy to loom large. Inertia is heavy, the mutual entanglement of lives is far-reaching, and we might not feel we have the same energy for dating that we did when we were younger.

    And there may sometimes be a statistical argument for “sticking it out” at least for a while, depending on where we are in the relationship, per this study (with 165,039 participants aged 20–76), which found:

    ❝Results on mean levels indicated that relationship satisfaction decreased from age 20 to 40, reached a low point at age 40, then increased until age 65, and plateaued in late adulthood.

    As regards the metric of relationship duration, relationship satisfaction decreased during the first 10 years of the relationship, reached a low point at 10 years, increased until 20 years, and then decreased again.❞

    ~ Dr. Janina Bühler et al.

    Source: Development of Relationship Satisfaction Across the Life Span: A Systematic Review and Meta-Analysis

    And yet, when it comes to prospects for a new relationship…

    • If our remaining life is growing shorter, then it’s definitely too short to spend in an unhappy relationship
    • Maybe we really won’t find romance again… And maybe that’s ok, if w’re comfortable making our peace with that and finding joy in the rest of life (this widowed writer (hi, it’s me) plans to remain single now by preference, and her life is very full of purpose and beauty and joy and yes, even love—for family, friends, etc, plus the memory of my wonderful late beloved)
    • Nevertheless, the simple fact is: many people do find what they go on to describe as their best relationship yet, late in life ← this study is with a small sample size, but in this case, even anecdotal evidence seems sufficient to make the claim reasonable; probably you personally know someone who has done so. If they can, so can you, if you so wish.
    • Adding on to that last point… Later life relationships can also offer numerous significant advantages unique to such (albeit some different challenges too—but with the right person, those challenges are just a fun thing to tackle together). See for example:

    An exploratory investigation into dating among later‐life women

    And about those later-life relationships that do work? They look like this:

    “We’ve Got This”: Middle-Aged and Older (ages 40–87) Couples’ Satisfying Relationships and We-Talk Promote Better Physiological, Relational, and Emotional Responses to Conflict

    this one looks like the title says it all, but it really doesn’t, and it’s very much worth at least reading the abstract, if not the entire paper—because it talks a lot about the characteristics that make for happy or unhappy relationships, and the effect that those things have on people. It really is very good, and quite an easy read.

    See again: Healthy Relationship, Healthy Life

    Take care!

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