Family Ties

When a dementia diagnosis arrives, it doesn’t just change the person it belongs to. It changes everyone around them. It lands in the middle of a family and rearranges everything. The roles, the relationships, the expectations, the dynamics that have been in place for years — sometimes decades — all shift.

And families are complicated before dementia. Throw a diagnosis into the mix, and all of that complexity gets turned up a few notches.

I think of it a bit like a butterfly effect. One change at the centre of a family system sends ripples outwards in every direction. Who steps up. Who steps back. Who can handle it and who can’t. Old tensions that had been quietly sitting in a corner suddenly have somewhere to go. Old wounds that nobody had quite dealt with have a way of resurfacing when the pressure is high enough.

When Others Don’t Share the Caring Load

In our group sessions, people talk about this a lot and the patterns are remarkably consistent. Some family members step up in ways that surprise everyone, including themselves. Others step out — sometimes physically, sometimes emotionally, sometimes both. And then there are the ones who genuinely want to help but have no idea how, and whose attempts to do so can sometimes feel more like a hindrance than a help.

The dementia based sibling arguments are often the hardest part. And luckily, this is one problem that my family hasn't encountered. But for those where this does happen, none of this makes anyone a bad person. People cope in different ways. Some people handle crises by being practical. Others shut down. Others stay silent because they don’t know what to say and silence feels safer than saying the wrong thing. Understanding that doesn’t make it any less frustrating when you’re the one carrying the majority of the weight. But it does help to know that the pulling apart isn’t always intentional.

Why Communication Breaks Down — And How to Fix It

With dementia, family communication is where it usually breaks down. And the communication problem in families dealing with dementia tends to follow a predictable pattern: people stop saying clearly what they need, which leads to misunderstanding, which leads to resentment, which leads to silence, which leads to everyone feeling unsupported and alone.

The shift I try to encourage is from “nobody helps” to “I feel overwhelmed when I’m managing appointments alone because I’m scared of missing something.” Those two sentences say a version of the same thing, but one closes the door and one opens it. Ambiguity is the cause of most arguments in families under pressure. The clearer you can be about what you actually need — specific, concrete requests rather than general expressions of frustration — the more likely you are to get it.

When it comes to sharing dementia caring responsibilities, there’s also a lot of invisible work that goes unnoticed. The appointments nobody sees being made. The medication being managed quietly in the background. If you’re carrying that kind of hidden load, it’s worth asking yourself: what could I actually hand to someone else? Not everything, but something. One specific task. One appointment. One phone call.

Keeping the Relationship Alive Underneath the Caring

Underneath all of the practicalities, though, there’s the harder question of connection. What keeps you tied to the person you love — not as their carer, but as their son, their daughter, their partner? When caring becomes a list of tasks, it’s easy to lose the relationship that sits underneath it all.

I know this from my own experience. I speak to my dad a lot, but I’m still working on making sure my visits to Mum are regular and intentional, not just reactive. That’s something I’m getting better at. I think moving my office into my parents house has complicated matters slightly, while I'm visiting more often, it tends to be to work and not just to see mum. So scheduling regular evening visits is something I'm trying to do.

The small things are what keep it alive. A shared cup of coffee. A familiar song. A moment where it’s just the two of you and the role falls away for a minute. Those rituals anchor the relationship even as everything else changes. Now I’m working from my parents’ house we take my dog for a walk every lunchtime — that’s a moment that’s just for us. And it’s quickly become a routine my mum looks forward to every day.

Understanding how dementia changes family relationships is the first step to navigating it. Families change when dementia becomes part of life. That’s not a failure. It’s not a reflection of how much you love each other. It’s a natural, human response to an incredibly difficult situation.

You’re not just co-carers. You’re still family.