Navigating relationships, love and intimacy

Karen has always been vivacious.

A retired teacher, coach and facilitator, she’s the life of the party.

So when she started stumbling over her words and mixing up pronouns she knew something was wrong.

In the Still Us: Navigating relationships, love and intimacy episode of the Hold the Moment podcast, Karen shares her experience following her diagnosis with primary progressive aphasia, a language variant of frontotemporal dementia.

Her husband Jonathan describes the moment they received the news as ‘absolutely rocking their world’.

But alongside the grief came something unexpected.

“They say grief is one of the purest forms of love,” Jonathan says.

“In that first month, you’re just hit by it. But the nice thing, at one level, is because it’s so raw it just affirms your love.”

“It just makes it more tender and gentle”

Since Karen’s diagnosis they’ve become more mindful, more tender and more attuned to each other in ways they hadn’t been before.

Jonathan has learnt to pick up new cues noticing when Karen’s words do not quite match what she means or when her communication is shifting.

He knows that touch will become more important as language changes and they have had conversations about consent that many couples never get around to.

Karen’s advice to other couples is direct and warm – lean in towards the person with the diagnosis.

Let them be the one to initiate and talk about consent before you need to.

Strengthening relationships with family and friends

Celebrate Ageing CEO Dr Catherine Barrett advocates for candid conversations about love and dementia.

Having spent more than 40 years working with older people, she wants people to understand one key thing – a dementia diagnosis does not mean someone is ‘gone’. They are still here.

Drawing on decades of research and practice, Catherine often talks about building the skills of love in her workshops.

Intimacy, she says, is about human connection in all its forms, including with partners, children, grandchildren and close friends.

“People living with dementia are capable of love and of loving,” she says.

Catherine explains that a couple’s relationship can be strengthened when the wider community leans in.

She describes the small gestures of love from friends that nurture a relationship.

Simple actions such as talking about the footy, chatting about the garden or bringing over the newspaper can make all the difference.

While it’s common for social dynamics and communication to shift after a dementia diagnosis, Catherine says that people need to push past their discomfort and show up.

“It’s a whole community, a whole network of people supporting that loving relationship.”

Hear their stories

Karen, Jonathan and Catherine share their experiences in Still Us: Navigating relationships, love and intimacy, an episode of the Hold the Moment podcast.

Listen wherever you get your podcasts or on the Dementia Australia website.

Looking for support?

If you would like support or advice about living with dementia, contact the National Dementia Helpline on 1800 100 500 or via live chat, available 24 hours a day, seven days a week, 365 days a year.

For resources about relationships and intimacy after a dementia diagnosis, visit the Dementia Australia Library.