A new clinic at RPA's neurology department is helping patients with younger-onset dementia and their families.
When Jo Holland's beloved dog died, she asked her husband Rod to sit with her.
“He said no, and went to bed, and I thought, well that’s odd,” Jo said.
Rod, then 53, had been displaying other worrying behaviours: at social events he wouldn’t talk to people and he was restless at night and barely sleeping.
Thinking her partner of 23-years had depression or restless leg syndrome, Jo took Rod to his GP, who ultimately referred him to a neurologist.
A battery of tests, including an MRI scan, confirmed a diagnosis of frontotemporal dementia.
“It was such a shock. I never thought it would be dementia,” Jo, who has worked in aged care and community nursing, said.
“I thought, what happens now? You can’t just say my husband has dementia and that’s it. I felt like I was going down a deep, dark hole.”
Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. The frontal lobes are involved in mood, social behaviour, attention, judgement, planning and self-control. Damage can lead to reduced intellectual abilities and changes in personality, emotion and behaviour.
FTD is Australia’s second most common degenerative disease that causes dementia in younger adults. Symptoms typically begin in the 50s or 60s, and sometimes younger. There is no cure or any disease modifying treatment.
Rod and Jo were referred to the Memory and Cognition Clinic, a new sub-specialty clinic within the Neurology Department at Royal Prince Alfred hospital.
The Clinic is a specialist outpatient service for people who are experiencing changes in their memory and/or cognition and thinking. Patients and their families are seen by a multidisciplinary team of neurologists, geriatricians, nurses, social workers, neuropsychologists and occupational therapists.
Neurologist Dr Rebekah Ahmed says the clinic provides assessment, care planning and monitoring as well as education, support and information on diagnosis and managing day-to-day issues, including referrals to other services.
People experiences changes in their memory and cognition may require assistance and supervision, placing strain on families and relationships, Dr Ahmed said.
“The frontal lobe is what stops us from doing inappropriate things, and helps us plan and organise things… there can be good days and bad days.”
Just months before Rod’s diagnosis in June 2017, the couple had bought a winery in Mudgee, in central west NSW. The news of FTD meant Rod, a farmer and long-haul driver, had to stop work, give up driving and he can no longer be left alone. A network of family and friends help Jo keep an eye on Rod, but they are selling the property and moving into town.
Jo says the clinic has provided her with much needed support and advice on issues such as navigating the National Disability Insurance Scheme (NDIS), superannuation and social security.
“It’s like a big family – we come to RPA and I can talk about everything,” she said.
“It’s a lifesaving clinic – I can’t imagine where we’d be without it.”