Annual Report
2021-2022

Frankie has her good and bad days.

Her General Practitioner (GP) describes her memory like a lace curtain - some days are like the solid bits where she can recall a lot, and the bad days are the holes.

She is always shocked when she sees her own photograph, asking “Who’s that old woman?”. When she is told it’s her, she is aghast, saying in her increasingly strong Scottish accent, “I’m not 94, I feel like 21”, and then she looks in the mirror and asks, “Who the hell is that?”.

Although these accounts may sound comical, her youngest of two children Amanda (Mandy) reflects, “It’s a sad disease, dementia”.

Frances Hall, or ‘Frankie’ as she is more affectionately known, has lived a full and fascinating life. Born in Dundee, Scotland, she lived with her daughters Debbie, Amanda and husband Ray until 1966 before moving and spending many of her years in the small village of Hunwick in County Durham, England.

Ray worked in Lagos, West Africa, before his sudden death at age 47, when their daughters Debbie and Mandy were just 14 and 12. Although always very fit and agile - able to touch her toes well into her 80s - Frankie wasn’t very socially-minded, relying a lot on the support and friendship of her beloved family.

Mandy comments, “I came to Australia on a working holiday as a nurse in 1987 and Mum came out for a month at the end, and we travelled home together.”

Frankie would often remark to her daughters “You’re living in the wrong country; you should be living in Australia”. Mandy continues, “I came back to live permanently in Australia in 1990 and Mum had lots of holidays here, before Deb finally visited and decided to move her own family and Mum here in 2004.”

“Mum always said, ‘I do the best I can, and only when I can’t, then I ask for help’”, Mandy recalls. Years ago, before the irrationality of dementia set in, she would say to her daughters “You will know when to make the decision, you’ll know when I need help”.

But then as it crept closer, and Frankie started having trouble, she tried to keep it hidden and was adamant she didn’t need assistance. As her dementia progressed, she would obsessively press red buttons and flick off switches.

“Mum would put herself in danger sometimes trying to pull out cords, like from behind the TV”, says Debbie. “We started noticing little bruises on her, even a hole in the bathroom wall where she’d obviously fallen but she was hiding it from us”.

Frankie was determined to stay living independently at her home in Research for as long as possible, and with the help of her daughters and healthAbility’s In Home Care services, her wishes were fulfilled.

It was in 2017, when Frankie was in her late 80s, that her daughters had the Bundoora Care Team do an assessment which subsequently deemed her eligible for a Home Care Package of Level 2. This was later upgraded in 2019 to Level 4 when she deteriorated further and was deemed a falls risk.

Debbie, who works in aged care, had asked around about support services. But after seeing how well their mother’s neighbour was being looked after by healthAbility, they didn’t look any further.

Both women can’t talk highly enough about the care their mother has received from all of the healthAbility staff.

Speaking in absolute agreeance, they describe Support Workers Heather and Gayle as, “the two angels”, adding “they really became family”.

Heather even volunteered to take Frankie to Debbie’s son’s wedding, which was incredibly important for the family. It meant Frankie was able to bless the nuptials by wrapping a small piece of her traditional Scottish family’s tartan cloth around their hands.

healthAbility organised Support Workers to supplement the care given by Debbie and Mandy, attending to Frankie twice a day on weekdays, and briefly on weekends for a few months in 2021 too.

“We worried ourselves sick about the fact she wasn’t eating”, says Debbie. “Gayle was fantastic - she would make her little fresh meals of scrambled eggs on toast, omelettes or porridge, making sure she had a good breakfast”.

She was also very good at encouraging Frankie to get up and get dressed and take her medications. Heather would do some cleaning, give Frankie an early dinner and loved doing crosswords and jigsaw puzzles, whilst singing old Scottish songs with Frankie.

“That’s what we wanted, we wanted the interaction and companionship for Mum”, says Mandy. “They really went above and beyond, even walking Mum’s little dog when she was no longer able to do it”.

Frankie’s daughters and the Support Workers communicated effectively with each other through a large diary on her coffee table, letting each other know what had been done or needed to be attended to next.

“They were extremely reliable and trustworthy”, Mandy says, “If they ever got there five minutes late, they would work five minutes longer, or even more.”

Mandy adds, “They loved Mum, they still ring me now and ask how she is, and both of them have been to visit her”, in the aged care facility where she now resides since breaking her hip in late 2021. There Frankie has found a new community and is joining in sing-a-longs to her heart’s content.

Mandy fondly recalls one of her Mum’s regular sayings: “I get up every morning and I thank God for another day. If I was to go tomorrow, I’ve had a good life, you know”.

Receiving a diagnosis of younger onset dementia can be a stressful and emotional time for a person and their family. Typically defined as any form of dementia in people under the age of 65, younger onset dementia can bring with it a different set of challenges compared to dementia that may develop later in life.

To help improve the quality of life for people with younger onset dementia and their partners, our Adult Speech Pathologist Ffion Walker runs IMPACT (Individuals Meeting with Progressive Aphasia Communicating Together). IMPACT is a group with a focus on speech therapy that provides a safe, inclusive space for people to access support and connect with others.

We spoke with Ffion to find about more about her work with people with younger onset dementia, and how we can better support those living with the condition.

What is IMPACT and how does it work?

IMPACT is a group I facilitate to support clients with younger onset dementia, as well as their partners. The group is split into two groups – one group is for the clients who are living with dementia, and the other group is for their partners. We’ve done it this way because there are different issues that we need to address for both groups, and we need to create a space for partners to feel comfortable in truthfully telling us how they’re managing their experience.

For people with dementia, the group supports them in conversation and helps them to access memories related to a topic. We might pick a topic like hope, grief, or memory, and then we’ll look at some ideas around that and their experience of it. The participants help each other, and encourage each other, and I think that in itself has a therapeutic effect. There’s a sense of connection and belonging, that they’re part of something that they can contribute to, which I think is a really important part of the group.

How can people join the group?

Group participants are all my speech pathology clients. I will do individual consultations with them and their partners, and then assess if they might benefit from attending the group. Some people won’t suit a group environment, but others will do really well.

Normally the group is held face-to-face, but during lockdown we’ve held online sessions for the partners so we can still be there for them as a point of connection and support until we’re allowed to see them in person again. It is difficult to run the group online for participants with dementia, as it isn’t as easy for them to engage virtually, but we try to be there for them as much as we can to provide support and advice.

How does the group benefit people with younger onset dementia and their partners?

For the participants with dementia, it’s helps them to build confidence. Many people with dementia often don’t engage in social conversations as they lose their ability to communicate, so it’s great to be able to ask them a question and get their opinion on something. The group enables them to actively participate in a conversation, even if their communication is impaired. It’s also a very safe, supportive space. For instance, if someone has difficulty remembering a word, everyone is patient. Nobody is judgmental because they understand what each other is going through.

For the partners, one of the key benefits is the support they get from others in a similar situation. Their scenario of being in a relationship with someone with younger onset dementia can be quite rare, so to be able to share very openly about that struggle and get support from others in a similar situation is hugely therapeutic. They can also ask questions and get some helpful advice and ideas, either from me or from each other. It’s a real peer support experience for them.

Do people with younger onset dementia experience the condition differently to those who develop dementia later in life?

People with younger onset dementia tend to experience different types of loss to those who may develop dementia later in life - I suppose it’s the loss of a future they hoped to have. They may have had plans to reach certain career or personal goals, or may have recently married for a second time. Many of the clients I see are diagnosed with dementia while still working in successful careers, and end up leaving their jobs as their condition advances. Quite often they feel embarrassed and afraid to tell people they have dementia. Some people are diagnosed while they still have dependent children, and have to negotiate being a parent while dealing with the effects of the condition, such as memory loss and impaired language skills.

What’s your advice for clinicians on how to support people who have been diagnosed with younger onset dementia?

There’s so much stigma around the fact that dementia is a progressive disease. It’s often perceived that there’s nothing you can do and no way to help, so people with dementia and their families are frequently left to deal with it by themselves. There’s a book by Wendy Mitchell called ‘Somebody that I used to know’ about her experience of living with Alzheimer’s, and it includes this quote: “Dementia has a beginning before it has an end, and so much life to live in between. We’ve got so much to give, we just might give it in different ways, so don’t give up on us.”

I think that’s the message that we need to give people. People with dementia are genuine candidates for treatment. We’ve got to be more creative, and more sensitive in addressing the complex issues of dementia so that we can provide the support that people with the condition need, not just now, but into the future. Just as we do with other chronic health conditions, we need to assess them and continually monitor their progress to ensure that as their condition changes, we adapt to those changes.

When it comes to dementia, don’t take away people’s hope. If we can deliver a dementia diagnosis with a focus on treatment and support options available, then we can help to retain a person’s capacity to flourish as a human.
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