Happiness is...

Happiness’ in dementia can become invisible labour for the person beside them.

It is easy to talk about quality of life for a person living with younger onset dementia as though happiness, connection and wellbeing simply happen when someone is loved and supported.

What gets missed is the person doing the supporting, often their life partner, and the constant work required to create, restore and protect those things.

For most of us, an unhappy moment can remain just that: a moment. We can work out why we feel off. Perhaps it was a bad day at work, something didn't go to plan, or we're simply having a bad day. We can go for a walk, ring someone, distract ourselves, sleep on it, make a plan, or remind ourselves that tomorrow may feel different. We have ways of finding our way back.

Dementia can progressively interfere with exactly those abilities. A person may feel unsettled, frustrated, bored, frightened or unhappy without being able to identify why, put it into perspective, or work out what might make things better. They may not be able to reassure themselves that the feeling will pass. And they may not retain the reassurance that was offered five minutes ago.

So, somebody else starts doing that emotional work for them. They notice the mood changing. They anticipate the difficult part of the day. They know when staying home too long will lead to restlessness. They suggest the drive, put on the music, make the cup of tea, arrange the outing, change the subject, find something useful to do, call the right person, avoid the trigger or introduce the distraction.

They continually read the room and adjust.

And with younger onset dementia, that person is not someone employed for a shift. It is their husband, wife or partner, and that changes a relationship in a profound way.

There’s an enormous difference between wanting the person you love to be happy and becoming responsible for making them happy.

The first is part of loving someone. The second can become a job with no finishing time. Perhaps that is the part we don't talk about enough.

When we see a person living with dementia having a good day, going somewhere, laughing, participating, contributing or remaining connected with the world, there can be an extraordinary amount of work sitting invisibly behind that moment.

Someone planned it. Someone anticipated what could go wrong. Someone got them there.

Someone kept an eye on how things were going. Someone knew when it was time to leave. And someone will manage whatever happens afterwards.

There’s another uncomfortable part of this too: often the carer's own happiness is repeatedly traded for the other person's.

A partner may be exhausted, sad, angry or simply desperate for some time in which they are not responsible for anybody else's emotional state. But if expressing those feelings risks distressing the person with dementia, they may learn to contain them. If the person they love is struggling, their own needs are postponed again.

Over time, “How am I feeling?” can be overtaken by: “How are they feeling and what do I need to do about it?”

That is a very particular burden.

One carer described one of the hardest things about dementia as being responsible for their partner's happiness.

Those few words articulate something many people living alongside dementia will recognise. And they also speak to why community matters so much.

At Young Onset Dementia Collective, purposeful activity, friendship, contribution and belonging aren't simply pleasant additions to someone's week. When other people and places become part of a person's world, their partner is no longer the sole provider of that world.

For a few hours, somebody else creates the conversation. Somebody else provides the reason to get out of the house. Other friendships generate the laughter. There are other people to notice, encourage, engage and respond.

And the person living with dementia has somewhere they belong independently of their partner.

That doesn't remove the responsibility at home. But it shares something that should never have fallen entirely onto one person's shoulders in the first place.

Perhaps the bigger question isn't: “How do we keep people living with dementia happy?”

Perhaps it is: “How do we build a life around someone living with dementia so that their happiness doesn't depend almost entirely on one exhausted person?”

That feels like a much more important conversation.