A Q&A with Kristy Johnson: Lewy Body Dementia & Palliative Care
Tuesday, 21st May 2024

Q&A with Kristy Johnson: Lewy Body Dementia + Palliative Care

In 2024, National Palliative Care Week runs Sunday, 19 May to Saturday, 25 May. It is an opportunity to highlight the importance of palliative care and raise awareness of the experiences of those navigating palliative care with their loved ones.

We spoke with our ambassador Kristy Johnson, who shared her family’s experience with palliative care, Lewy Body Dementia, and the importance of raising awareness about this condition.

This week is National Palliative Care Week. Can you share with us a little about your family’s experience with palliative care?

My beautiful mother Beverley had been suffering from Parkinson’s disease and Lewy body dementia. She went into temporary respite care after a stint in hospital but only spent two nights there as she got a fever which later turned into an infection. The infection eventually went away, but the Lewy Body Dementia was progressing at a fast rate. She lost the ability to swallow and was relying on an intravenous tube for nutrients.

We hoped she would regain the ability to swallow but the dementia was too aggressive. The doctor sat us down and recommended palliative care and within days she went to the palliative ward at Greenwich Hospital in Sydney.

It was a traumatic experience watching mum in her final days being unable to respond to us. She was unable to speak but we are told she was able to feel and hear us. At the same time, there were also beautiful moments in being able to care for mum in her final days. I slept overnight so that she would feel less alone.

Is there anything that friends and family did to provide comfort to you during this time?

I am incredibly lucky to have had the support of my dad and sister. My dad, Greg, got up at 6am every morning and was by her side until 8pm at night. Being able to talk to friends who had lost a parent did provide comfort and I was incredibly lucky to have a supportive boss and colleagues.

What is some advice you’d offer to someone else in a similar situation?

To be kind to yourself. It’s an incredibly difficult time both mentally and physically. Try to look after yourself as best as you can. If you’re having a particularly low day, lower than usual, refrain from alcohol and turn to more nourishing outlets. Although mum couldn’t speak and later lost her sense of sight, I made sure everything I talked to her about was positive, reflecting on happy memories from my childhood.

What is something you wish people understood more about Lewy Body Dementia?

There are so many different forms of dementia. Lewy Body is particularly aggressive. The average lifespan is around five to seven years after diagnosis. Mum always knew who we were, right up until her death. However, her quality of life was incredibly poor.

Why do you think raising awareness about Lewy Body Dementia is so important?

When people think of dementia they assume that it’s just about forgetting who people are. But Lewy Body is very complex, and to be honest, I’m still discovering just how complex it is.

You can learn more about Lewy Body Dementia here.