Where do you go when you can’t stay home?

For many people living with dementia and their families, moving into residential care is one of the most difficult decisions they will face.

It’s a conversation many would rather avoid altogether, as it can feel overwhelming to know when it might be time, how to begin and what lies ahead.

While every journey is different, residential care often comes at a point where care needs for the person living with dementia have changed and when additional support is no longer optional, but necessary.

For carers this decision can lead to a mix of emotions: loss, guilt and even relief. That’s normal.

Residential Care: Understanding Changing Needs, an episode of our podcast Hold the Moment, explores these challenges through the eyes of carers Susan and Louise.

They share their experiences, bringing to light the realities so many families face including the emotions and unexpected moments that come with transitioning into residential care.

“My heart sank”

Louise’s husband Craig, affectionately known to friends as Moose, was just 46 when he was diagnosed with young onset dementia.

It was unexpected changes as a result of his dementia which meant it was no longer safe for Craig to stay at home.

“[The doctor] wrote down on a piece of paper ‘nursing home’. And that is when my heart sank,” Louise said.

Finding appropriate residential care proved to be difficult given Craig’s age, with many places not suitable for those under 65.

Eventually they found residential care appropriate for him but Louise decided not to tell her husband he was moving.

The day of the move was emotionally difficult for Louise, packing familiar belongings for Craig and telling him they were going to meet his best mate.

Arriving somewhere new brought a mix of emotions but care staff worked carefully to make the transition as smooth as possible.

Small details, such as having his favourite meals ready and undertaking familiar routines helped to create a sense of comfort in an unfamiliar place for Craig.

Over time, those moments of comfort grew and Louise said that spending time together and seeing him settle into a routine brought reassurance.

“I didn’t get [sad visiting him in care] … I was the opposite. I’d wake up on the weekend and think, I can spend the day with Moose today.”

Advocating for compassionate care

For Susan, transitioning her father Tony into residential care came with its own challenges.

A ‘calm, gentle man’ Tony’s needs changed constantly, his behaviours shifting as memories from his childhood in wartime Italy began to surface.

The changes started placing pressure on both him and those around him.

“Every minute that we found with Dad was different… you just don’t know what you’re going to get,” Susan said.  

She emphasised the importance of helping residential care staff understand the person behind the diagnosis.

“Let staff know what their life was like… because you might need to deal with it later down the track.”

In residential care, personal history and past experiences can shape how someone responds to their surroundings, particularly in moments of distress. Sharing these insights can help staff provide more personalised and compassionate care.

“For families who have a person in care who's living with dementia and they're very calm and they're very pleasant, enjoy those moments.”

About the podcast

You can listen to Louise's and Susan's story on the Residential Care: Understanding Changing Needs episode of Hold the Moment, a podcast full of stories about life after a dementia diagnosis.

The podcast is co-hosted by Jim Rogers, who lives with young onset dementia, and Dementia Australia Ambassador and journalist Hamish Macdonald, whose father lived with Lewy body dementia and Parkinson's.

It is available on podcast apps, the Dementia Australia website and Dementia Australia's YouTube channel.

More information and support

Please be advised this episode shares moments of distress that may be upsetting for some listeners.

If you need support, please contact the National Dementia Helpline on 1800 100 500.

The helpline is available 24 hours a day, 7 days a week.

For more information on this topic including choosing a facility and moving into residential care, visit the Residential care page on our website.