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I have not addressed this question directly before because I am in no way qualified in the trauma‑specialist department. But I was asked it by the wife of a newly diagnosed patient with PSP, and it gave me real food for thought. It felt important enough to share.
I was, I suppose, “lucky” in a strange way. When I was first diagnosed (sadly not the final diagnosis) with Parkinson’s disease, my son was in the hospital room with me, and the doctor simply announced it. He didn’t ask my son to leave. He just blurted it out. I’m not convinced this is best practice, but once one child knew, that particular door was open. It was done.
The truth is, I would have been transparent anyway. But telling your children you have Parkinson’s is very different from telling them you have PSP.
With PSP, what do you say? That Daddy, or Grandpa, or the person at the centre of your family is going to die of a progressive disease — that the road will be hard and that the changes will be obvious. There is no soft version of that sentence. My three were 10, 16 and 16 when I had to find those words. Some of you will be saying them to forty‑year‑olds. Some to seven‑year‑olds. The words adjust. The truth underneath them doesn’t.
Add to this the fact that we live in a world of Google and AI, where anything I say can be fact‑checked in seconds. Hiding it was never really an option anyway. PSP progresses quickly, and it becomes visible very fast. There is no hiding it from the people who love you.
So what are the choices?
With Parkinson’s or other illnesses, I know families who delay disclosure, and I understand that impulse completely, even though I didn’t follow it myself. But with PSP, I don’t think delay is truly workable.
Before going further, one thing matters: PSP does not only affect people my age. Many patients are in their sixties, seventies or eighties, with adult children and very young grandchildren. Telling a forty‑five‑year‑old son is different from telling a teenager. Telling a seven‑year‑old grandchild is different again. I will try to speak to all of those situations. But I have come to believe the core principles are the same.
What follows is what I did — and then what the research actually says. Reassuringly, the two largely align.
The Core Tension
Every instinct in a parent or grandparent says protect them. That instinct is not wrong. It is human, and it comes from love.
And yet the psychology is remarkably clear: children who are appropriately told about a loved one’s serious diagnosis tend to experience less anxiety than those who are not told — or who sense that something important is being hidden.
That “appropriately” matters.
The evidence does not say that telling children everything, all at once, automatically makes things better. It says that open, honest, developmentally calibrated communication — communication that matches a child’s age, personality, and capacity — is consistently associated with better psychological outcomes than secrecy or partial disclosure.
When children are not told enough, they notice anyway. They sense changes. They overhear fragments. And left without a coherent explanation, they fill in the gaps themselves — often with interpretations that are more frightening than the truth.
Withholding is not protection. It is a different kind of harm.
Hospiscare phrase this well: tell people in your own way, take the pressure off, be honest, and remember that it is OK not to be OK. This applies with PSP whether we are talking about children or grandchildren. There is nothing meaningful to exclude them from — it is written in every stumble, every slurred word, every meal that takes twice as long as it used to.
What I Actually Did
With PSP, I chose honesty — full honesty.
I have spoken to my children multiple times, sometimes individually and sometimes together. Each child is different. Different DNA, different personalities, different ways of processing pain. I spoke to them accordingly. But I also brought them together as a family, because some things matter enough to be said in the same room.
It has not been easy. At times it has been almost unbearable. I will admit openly that I made mistakes — especially around timing, and sometimes around creating urgency where none was needed in that moment.
Try to imagine what it’s like to be one of my kids living in this house. You watch your father decline week by week. The house changes — renovations so we could move downstairs, a carer entering the home. And the father they knew — the one who travelled constantly, who was a ball of relentless energy, who thought nothing of driving hundreds of kilometres just to buy an iPad from the VAT‑free port in Eilat because it was an excuse to spend hours in the car with his kids — that father is slowly becoming someone else.
For adult children, the experience is different but no less painful. They may be balancing their own families and pressures while fully understanding what PSP means. They carry the prognosis intellectually, which is its own particular weight, and they feel the impossible pull between wanting to be present and needing to keep their own lives functioning. They do not need shielding. They need inclusion.
For young grandchildren, the challenge is different again. They may simply notice that Grandpa isn’t the same. Explanations must be simpler and shorter — but the need for honesty does not disappear.
I did not want to sugarcoat anything. I also didn’t want to perform suffering, or pretend to be a superhero. The balance I tried to strike was this: I am giving my best. I am not giving up. But I will not give you false hope, because you deserve better than that.
I have been clear that I want their lives to continue normally — their growth, their futures, their joy matter more to me than almost anything. At the same time, therapy has been made available without pressure or shame.
I also believe something deeply, beyond the research: our kids and grandkids are more resilient than we often assume. Not invincible — but capable. They live in a complicated world. They are not as fragile as our instincts sometimes suggest.
One conversation I believe is especially important for PSP families: I told my children plainly that PSP may bring behavioural changes later on. I asked them to hold onto who I am now — to remember this person — not whoever the disease might eventually make me appear to be. That was one of the hardest conversations I have ever had. I also believe it was a necessary gift.
Every family is different. Some will need specialist guidance. But the principle remains: honesty calibrated with love is better than silence every time.
What the Science Says
I am not a researcher. But I did go looking for what the evidence actually shows.
Telling Them Reduces Anxiety — When It Is Done Properly
Children who are told in age‑appropriate ways tend to experience less anxiety than those who are excluded. Silence does not spare them pain. It leaves them alone with it.
Importantly, this does not mean dumping information indiscriminately. It means giving children and adults enough truth to make sense of what they are already sensing — and remaining available as questions evolve.
Age Shapes How You Tell Them — Not Whether You Do
A seven‑year‑old, a sixteen‑year‑old and an adult son process this through different lenses. But none are better served by being left in the dark.
Young children need simple, concrete explanations repeated over time. Teenagers need the full picture — because partial information creates more distress than clarity. Adult children need honesty, not emotional management, and permission to have their own grief seen.
Use the Real Words
Say “die” and “death.” Avoid euphemisms. With young children, softer language creates confusion that must later be undone. With teenagers and adults, it rings false. People know when they are being handled.
Partial Information Is Often Worse Than Full Information — but “Full” Does Not Mean Overwhelming
The research consistently shows that vague or inconsistent disclosure causes more distress than clear honesty. When something feels unsaid, people investigate. They Google. And imagination is rarely kinder than the truth.
But “full information” does not mean maximal detail. It means developmentally complete information — answers that fit the questions a person is ready to ask, without unnecessary clinical overload.
Silence, evasiveness and inconsistency do more harm than truth that is shaped, revisited and allowed to grow over time.
Timing Matters — and I Learned This the Hard Way
Tell people early. Choose moments with space. Don’t create urgency where none exists. I didn’t always get this right. I can see that now.
But waiting for the perfect moment is just another way of delaying a necessary truth. There is no perfect moment. There is only sooner and later — and sooner is almost always kinder.
The Conversation Never Ends
One conversation is never enough. Questions reappear. Emotions circle back. That’s not failure. That’s how people process the unprocessable. Leave the door open.
What I’ve Learned
Tell them early. Tell them honestly. Use real words. Repeat yourself. Adjust for age and personality without using either as a reason to withhold. Make support available. And trust that the people you love are more capable of carrying hard truth than your instincts sometimes allow you to believe.
PSP is many things. But it is also, unexpectedly, an opportunity — to be known as you truly are, and to give your children and grandchildren the gift of truth told with your arms around it, rather than a search engine with none.
That gift, at least, is still mine to give.
And I have tried to give it
