Younger onset dementia, also known as early-onset dementia, is any form of dementia in people under the age of 65.
While many of the symptoms and problems posed by the disease are similar to other forms of dementia, the impact of these challenges on individuals and their families is often heightened as people under the age of 65 are more likely to still be financially responsible for their family.
In Australia alone, there are an estimated 28,800 people with younger onset dementia and that number is expected to rise to 29,350 people by 2028 and 41,250 people by 2058.
Speaking at Thursday’s National Dementia Conference in Melbourne, Dr Brigid Ryan, who is the Chair of the Younger Onset Dementia Aotearoa Trust in New Zealand and Leader of the New Zealand Genetic Frontotemporal Dementia Study, sat down with HelloCare to outline what sparked her interest in researching this form of dementia and her hopes for reducing the lengthy timeframes that it can take to diagnose.
“I became interested in young-onset dementia because my major project that I’m working on involves a family with genetic Frontotemporal dementia. That’s a less common cause of dementia. But it does usually occur in people when they’re under 65,” said Dr Ryan.
“From talking to that family and getting to know them, and hearing about their experiences, it became really clear to me that their experience of living with dementia was quite different from the stories that you usually hear, just because they were at a younger age.”
After broadening her research from Frontotemporal dementia to younger onset dementia, Dr Ryan quickly became fascinated with the wide variety of reasons that younger onset dementia occurs and why younger onset dementia takes more than twice the amount of time to diagnose when compared to people who develop the disease over the age of 65.
Although all forms of dementia can be difficult to diagnose, Dr Ryan reveals that diagnosing dementia for people under the age of 65 can often be a very frustrating and lengthy experience.
“International literature suggests that on average, diagnosis takes about one-and-a-half years for people who are older than 65. So that’s from when the person notices symptoms to when they get a diagnosis. But that increases to four-and-a-half years for people who are under 65,” she said.
“As you can imagine, for patients and families, there’s a lot of uncertainty during that time.”
When a person is over the age of 65, Alzheimer’s disease accounts for the main cause of dementia for two-thirds of people. Whereas Alzheimer’s disease is only the main cause of dementia in one-third of people under the age of 65.
According to Dr Ryan, this leaves a lot of people with much rarer causes of dementia, which can be harder to diagnose and harder to distinguish from one another.
These causes include Frontotemporal lobar degeneration, stroke, Parkinson’s disease, Lewy bodies and multiple concussions.
“There is quite a high proportion of people who have dementia that’s related to alcohol misuse. So that’s called alcohol-related dementia. And that is quite an important cause of dementia in the younger age group,” said Dr Ryan.
“I think from a public health perspective, we’re starting to understand that that’s probably something that we need to focus on more in that younger age group than in the old age group.”
With Alzheimer’s disease being the main cause of dementia for people over the age of 65, changes in memory are often the most obvious symptom associated with dementia.
But with Alzheimer’s accounting for only one-third of younger onset dementia diagnosis, symptoms for people under the age of 65 are often more unusual.
“People can become quite irresponsible with their behaviours, and that sort of thing can be really difficult for families to pick up on because it’s not always a very clear change all of the time.”
She continued, “It can be quite subtle changes. And people just think, ‘Is my partner’s personality just changing? Or are we just drifting apart?’ And it’s hard to pinpoint those as an actual disorder.”
Memory loss, confusion, repetitive behaviour and language problems can also be symptoms of younger onset dementia, as can withdrawing from family and friends, which can easily be misdiagnosed as depression.
As part of her ongoing research, Dr Ryan and her colleagues are currently putting the finishing touches on a study that they hope will help pinpoint commonalities between younger onset dementia diagnoses that can inform why making an accurate diagnosis takes so much longer in younger age groups.
Dr Ryan believes that increasing awareness amongst GPs of what to look out for in regards to younger onset dementia may reduce the number of misdiagnoses and lead to shorter wait times for younger onset dementia to be diagnosed.
“It does seem that it’s more likely in the younger group that people are misdiagnosed initially with things like depression because that can manifest in quite a similar way,” explained Dr Ryan.
“It takes a while after that misdiagnosis for doctors to realise that’s the wrong diagnosis. And by that time, you might be a year down the track. And that seems to be part of the delay in diagnosing younger onset dementia.”
While the official findings from Dr Ryan were not available at the time of writing this article, she expects that she will be able to share these findings with attendees at the National Dementia Conference in Melbourne this Thursday.