Diagnosis of dementia in under 65-year-olds often faces frustrating delay

If we say the word ‘dementia’, many will picture an older person struggling to remember the names of their loved ones, maybe a grandparent living out their final years in an aged care facility.

Dementia can also occur in people younger than 65, but it can take time before they are diagnosed as having the disease, a situation we need to change.

Young-onset, or early-onset dementia, refers to any form of dementia diagnosed in someone under the age of 65. It is a debilitating condition that affects 140 people per 100,000 aged 30-64 years in Aotearoa, approximately 3500 New Zealanders.

For these people, dementia presents unique challenges because they are at a different life stage when they’re diagnosed – often still working, supporting families, and being actively involved in their communities. Moreover, the lack of awareness of young-onset dementia can result in a delay in diagnosis and limited support for people living with it and their whānau.

Diagnosis of dementia at any age can be complex, as there is no single definitive test. Doctors make their assessment based on a combination of reported symptoms, on a physical examination, laboratory tests, cognitive tests, and medical history.

In our study, ‘Determinants of Time to Diagnosis in Young-Onset Dementia’, the first study to look at the diagnostic pathway of young-onset dementia in Aotearoa, we took a magnifying glass to the experiences of 40 people living with young-onset dementia and 39 of their care partners. Participants were aged 55 on average, with the youngest person being 42.

We found that on average, it took 3.6 years from the time symptoms began to when the formal diagnosis was made by a doctor. One participant summed up the experience of many when they described their journey to a diagnosis as “long and frustrating”.

This delay is burdensome for patients and families, who want an explanation for their symptoms, advice on managing, support, and to have time to plan for their future.

We found two main factors behind the delayed diagnosis. The first factor was if the GP suspected the symptoms were caused by depression or anxiety when they first saw the patient. It can be difficult to differentiate the early clinical presentation of young-onset dementia from psychiatric illnesses, such as depression and anxiety. They can manifest similar symptoms, such as subtle memory loss, changes in personality and social withdrawal.

The second factor that delayed the time to diagnosis was being diagnosed by a specialist who was not a neurologist, for example a psychologist or a geriatrician.

Our results suggest that doctors working in primary care need to be better-resourced and supported to differentiate psychiatric illnesses from young-onset dementia, and aware that referral to a neurologist for specialist diagnosis may be the most appropriate pathway.

What exactly is dementia? It is commonly misunderstood as a single illness, but it’s better understood as an umbrella term used to describe a range of symptoms caused by different diseases. The most common of these diseases is Alzheimer’s disease, but there are many others, for example: frontotemporal dementia, Lewy Body dementia and vascular dementia.

In our study, half of the participants were diagnosed with Alzheimer’s disease and half had other diagnoses. All these diseases can cause symptoms that diverge from the classic memory loss and confusion typically associated with dementia. In our study, the first symptoms noticed were memory problems, changes in personality, problems with paying attention, and impaired language.

About half of the patients in our study were not aware of their own symptoms, but had been encouraged to see a doctor by a loved one. Even healthcare workers can associate dementia with ‘old age’, a misconception which isn’t helpful for younger people living with dementia. This has meant there is a disparity in the support and resources available for younger people, compared to those diagnosed at an older age.

Dementia can be a devastating disease, impacting a person’s ability to do things that most of us take for granted. This loss of ability can be felt more acutely among younger people. In a short period of time, they can go from working in a full-time job, picking their kids up from school and playing tennis on the weekends to not being able to remember how to turn on a stove. The partner of a patient in our study described “feeling that your life is put on hold and there is no real future”.

We need to better recognise the reality of young-onset dementia, and understand the specific challenges faced by people with it, so that we can improve diagnosis and support for them. On a large scale level, this means mobilising healthcare resources, and on a smaller scale, it means raising awareness that dementia is not the preserve of the elderly.