“I’M MOST afraid of the stigma. People won’t treat me the same.”
This is what Jenny Kennon’s friend said as they wandered through an aged care facility, exploring the halls of what could soon be her home.
Just diagnosed with Alzheimer’s disease, Jenny’s friend was standing on the brink of a great unknown.
Facing a slow corrosion of memory, intellect, social skills, rationality and physical functioning, all she could think about was how people would soon treat her.
Would they still look her in the eye? Would they speak to her, or only to her carer?
Would they get impatient with her and snap when her deteriorating mind slowed her response time to a sluggish crawl?
Jenny’s friend was not alone in this fear.
For the rising number of Australians living with dementia, feelings of isolation, embarrassment and worthlessness can become a daily burden.
And Jenny Kennon – the care manager at Warramunda Village’s aged care facility – said many of these feelings can stem from a lack of education in the wider community.
“A lot of the time people can think, ‘They’ve got dementia, they don’t remember – they’re not worth talking to,’” Ms Kennon said.
“While they might have lost their thinking, they have not lost their emotions.
“People with dementia still feel love and sadness, happiness and hurt. They may not remember the particulars of an event, but they can remember how it made them feel.”
Dementia is a broad term used to describe the symptoms of a cluster of illnesses which cause a progressive decline in a person’s functioning.
Alzheimer’s disease is the most common form, affecting up to 70 per cent of all people with dementia.
While it begins with short term memory loss, it will eventually progress to include myriad more symptoms.
Dementia has now been classed as a terminal illness.
And this year, 836 people are living with dementia in Campaspe Shire.
This is expected to jump by 3.5 per cent each year, with 2,564 residents expected to have the disease by 2050.
As Dementia Awareness Month comes to a close, Ms Kennon is urging locals to build awareness of the symptoms.
“It’s miles more than memory loss. You can have dementia blindness, where your eyesight is fine, but your brain doesn’t process what you’re seeing,” she said.
“This can lead to a lack of spatial awareness. People can have difficulty seeing stairs or experience double vision. A black mat on the floor can look like a huge hole.”
Touch, taste and smell can be affected, while hypersensitivity to noisy environments and information overload can also cause distress.
It is this hypersensitivity – as well as many other symptoms – which can eventually lead to social isolation.
A recent survey released by Alzheimer’s Australia, Dementia and the Impact of Stigma, has found people living with dementia and their carers often experience embarrassing situations, feel socially disconnected and less competent.
Ms Kennon cites Thomas Kitwood’s Flower of Emotional Needs as a resource for those looking to embrace those affected by dementia.
With “love” at its centre, the flower has five petals – comfort, identity, occupation, inclusion and attachment.
“Everybody needs to be loved. On top of that, they need to feel comfortable – warm, dry and clean with a full stomach and a comfy chair,” Ms Kennon said.
“They also need to feel included, occupied and surrounded by things they’re attached to.
“Finally, they need to have their identity intact. Reaffirm who they are and make sure they have things around them that are important to them.”
Ms Kennon urges locals to get behind carers.
“Give them time off. Understand them, talk with them – above all, listen to them,” she said.
“Just like those with dementia, carers can often feel isolated and lonely – and they are also completely exhausted.”
As the number of those living with dementia gradually rises in the shire, Ms Kennon hopes Kyabram will continue to develop as a dementia-friendly town.
“Kyabram is amazing already, but how can we be even more aware?” she said.
“It’s important to be aware of the environment. Avoid sensory overload such as loud noises and patterned carpets. People with dementia struggle to look up, so having signs at eye-level is beneficial.
“As for interactions, eye contact is important. Speak at a moderate rate, don’t ask difficult questions and give people time to respond. Don’t answer for them. Stay calm, slow down and just listen.”