It took two years for Jill to work out what was happening to her. Her husband, Mark, started noticing changes in her speech in 2012. Often it would be in the evenings when she was more tired, and after a glass of wine. Mark initially thought Jill’s speech disturbance was due to her having too much wine but her memory was fine and Jill knew that wasn’t the issue.
It set off a long search to uncover the cause of the speech problems she was experiencing. For the next few years, Jill went to specialist after specialist; was diagnosed with Sjogren's syndrome (which causes a dry mouth and some speech symptoms), had a partial thyroidectomy, followed several months later by complete removal of her thyroid and she also underwent a tonsillectomy. It was only in 2014 that a neurologist near their home in Newcastle diagnosed her with a form of FTD called primary progressive aphasia (PPA).
“We didn’t understand the implications of it,” said Mark, who now speaks on Jill’s behalf as she has lost the ability to communicate.
Any step forward
Jill and Mark were referred to the Brain and Mind Centre’s FRONTIER Research Clinic to participate in their research program on these rare forms of dementia. It is their fourth year with the program and the annual two days of testing and trip from Newcastle is getting more difficult. But Mark says they joined with the hope that it would improve the understanding of this little-known disease.
“Any step forward would help and there's not much we can do for this cruel disease at the moment.
“Awareness raising is something we can do." Mark says there were many points along the way that could be improved with awareness, from diagnosis, treatment, and support.
"I don’t think the medical community is very aware of these diseases, let alone being able to diagnose them.
"I’m certainly not persuaded those surgeries needed to happen for what was essentially an exploration. Speech therapy was recommended and our speech pathologist was wonderful—she helped us understand the disease more than anyone had until that point but treatment wasn't as helpful as it would be for people with brain injury. Our application for NDIS support was also rejected at first because this disease didn't fit into the categories for support but Dementia Australia took up the cause for us and we eventually managed to get support.
"Dementia is seen as something that happens to you in old age. PPA is just not heard of. We want to see the medical community alive to these conditions."
With World FTD Awareness Week from 26th September to 1st October, and Dementia Awareness Month throughout September, Jill and Mark's children have started a crowdfunding page to support the FRONTIER Clinic's research program. They describe their mum's loss of capacity to socialise with friends, to communicate with loved ones: "It's a special kind of grief...
"Our hope for the medical community is to find ways to slow and prevent it."
In the video released by the couple below Jill and Mark also share their story to offer others a glimpse of life with FTD, in the hope that raising awareness of the condition will help the community understand this invisible disease, inform a better path to earlier diagnosis among the medical community and spur on the search for treatments.
Professor Olivier Piguet, director of the FRONTIER FTD Clinic at the Brain and Mind Centre, says Jill and Mark’s journey of diagnosis is an added burden of this particular subset of dementia disorders.
There are many types of dementias. Frontotemporal dementia is a younger-onset dementia that often begins in the 50s or early 60s. The challenge with FTD is that the presentation varies markedly from person to person depending on which area of the brain is first affected. In general, changes take place subtly at first and can mimic a host of other disorders, making the journey to diagnosis a difficult process for patients, and a challenge for clinical research.
“For Alzheimer’s disease, the most common form of dementia, the average time from symptom onset to diagnosis is 18 months to two years” Professor Piguet said.
“For FTD, it’s double, so people are managing for a long time without proper support and management."
He says increasing awareness helps patients and carers with their health journey, and lists three key opportunities for research:
“Resourcing for clinical outreach would have a great impact for people living with FTD and families. Currently, we estimate that we capture 20 per cent of people with FTD and there are a lot of people struggling on their own. We would love to extend research and clinical care to indigenous and rural communities.
"Education upstream – for the medical and allied health professionals to reduce the delay between symptom onset and diagnosis would have a major impact on people living with FTD."
No registration required, join with the webinar link here: https://uni-sydney.zoom.us/j/85656694581
The annual carer information day is an opportunity for us to give back to the patients and their families who have selflessly contributed valuable time and effort towards our research. The webinar will also feature a presentation from a carer with lived experience of FTD. There is no registration required, and the webinar is open to anyone in Australia. Health professionals who are wanting to learn more about FTD are welcome to attend.
World FTD United will be releasing a video on their website featuring stories from those diagnosed with FTD, carers and families, health professionals and researchers from around the world. It will screen on Saturday 2nd October and features Olivier Piguet, Fiona Kumfor, Candy Cheung, Rebekah Ahmed, Kirrie Ballard, David Foxe, and a FRONTIER carer representing Australia.
Access the video here: https://www.worldftdunited.net/
Developing treatments for frontotemporal dementia