How personal experience with dementia is inspiring retirement living changes

In Australia, more than an estimated 421,000 people are living with dementia. Therefore, most of us are likely going to have – or already have – a personal connection with dementia.

For Michelle Bruggeman, the Chief Operating Officer of Levande Retirement Living, dementia has affected both her grandmother and mum. Michelle reached out to hello leaders to share her experiences with dementia and it’s a story we’re proud to share. 

Michelle’s mum, Ria Van Der Haar, started showing signs of early-onset dementia before the COVID-19 pandemic struck. However, with her dad at home looking after his wife, it wasn’t until his passing after 40 years of marriage that the family saw how quickly it had progressed. 

“My dad passed away in 2021, right at the height of COVID-19. Then my mum stayed with my sister for a few months and my sister soon said mum needed 24/7 care. Not a retirement shift, this is an aged care move,” Michelle explained.

“Mum had an initial regression of her dementia when she moved into aged care, which was no fault of aged care in any shape or form. It was just her journey. Now she’s plateaued.”

“They rated dementia as low, medium and high, and mum would be on the border of medium to high. She has very little short-term memory… but she absolutely knows who we are, the siblings, and I’m one of five.”

The family connection is incredibly strong between the five siblings, who have an ongoing group chat and roster to make sure someone’s always visiting their mum every day. 

Although cognitive decline has seen the woman Michelle describes as a “saint” become more frustrated by her memory loss, it has resulted in a new perspective on life.  

“What it’s taught me is to be more patient and grateful… to love every moment. She doesn’t remember what she had for breakfast so she’ll do something with you and tell you ten times the same thing, that she loved it, and I just think that’s beautiful.”

As expected, there are challenges, including dementia’s impact as an invisible disease.

“It certainly changes what you do together, where you go and your approach to how you speak. One of the golden rules around dementia is it isn’t important to ask them what they had for lunch because you’re just reminding them that they have a disease and can’t remember,” she added.

“What’s important is to talk about her favourite classical music, and do the activities she enjoys like going around the shopping centre or looking at photos that will land memories for her.”

“At the start, I would get upset because she couldn’t remember. Now I never get upset because I love that she’s having fun in the moment. You want to live for every moment.”

When personal life influences professional

Looking back on her mum’s journey, Michelle said she wished both her parents had decided to speak up and seek extra help, or to enter retirement living before it was too late. She believes this could have prevented the rapid move from home to residential aged care.

This also all occurred before Michelle joined Levande Retirement Living. Now, with a combination of personal and professional experience with ageing that many aged care leaders have, she is committed to improving outcomes for all.

“When you navigate aged care with your own parents it enlightens you to go ‘We can do retirement living and aged care so much better’. My experience has inspired me to say we can do well-being better,” Michelle said.

Among the many driving forces for improvement is the fact that dementia is the leading cause of death for Australian women and the second leading cause of death for all Australians. As dementia diagnosis numbers rise, so too does the potential for it becoming the leading cause of death overall. 

Stating that she has no choice but to act and be more proactive, Michelle and Levande are focused on ways to better educate residents about dementia. 

This includes providing resources and materials to help residents with early diagnosis, additional staff training and engaging with Dementia Australia to conduct site audits.

They also plan to partner with a home care provider for resident referrals and will enhance the role of their wellbeing and lifestyle coordinators under a new wellbeing framework. 

“We recently tested our residents against the Australian Unity National Index and we know their wellbeing is rated at 80.5%. That’s almost 3% higher than the national average so we know our residents are feeling secure and feeling well, and we want to continue that.”

Michelle will be supporting her mum and fundraising for dementia support through the Memory Walk & Jog in May.