Dementia doesn’t care what age you are

September is World Alzheimer’s Month and 21 September is World Alzheimer’s Day. This international campaign is held each year to raise awareness of dementia and challenge the stigma that goes with the condition. While most of us associate dementia with the elderly, it can affect people of all ages, Dr Brigid Ryan of the Centre for Brain Research explains.

Dementia is a disease that doesn’t discriminate. No matter your race, religion, gender, rich or poor there is a chance you may develop dementia. And it doesn’t even care if you’re young or old: dementia can strike in middle age. 

When dementia develops before the age of 65 we call it ‘younger onset dementia’ and it’s estimated to affect 5000 New Zealanders. But the common belief that dementia only affects older adults means there is a massive gap in resource and support for those diagnosed at a younger age. The needs of this group are vastly different to those who develop it decades later. Most are still working, many are raising children or teenagers, and some are on the verge of planning retirement, which will now be very different to what they had hoped for. 

I have first-hand knowledge of how dementia impacts a family and how hard it is to adjust to a person taking ages to do simple tasks, appearing to disregard simple instructions, or forgetting conversations that happened minutes ago. These are public-facing, stereotypical effects of dementia, but they don’t adequately capture what is truly happening. 

I lost my grandmother to dementia after a long period of illness. It was very difficult to watch her slowly transform from my clever, confident Grandma into someone who needed help with daily tasks and struggled to recognise me. There had to be more to it than a shrug of the shoulders and acceptance that this was part of ageing. The experience inspired me to pursue a career in neuroscience and led to a fascination with the brain and all its curiosities. It’s also allowed me to better understand this debilitating disease. Although dementia currently has no cure, I am hopeful the more we learn, the more likely this is to change. 

Dementia itself is not a single disease. It is a set of symptoms caused by different diseases. The most common is Alzheimer’s, which is why we often think of Alzheimer’s and dementia as the same thing. But dementia can also be caused by many other conditions, for example, vascular dementia, Parkinson’s disease, Lewy body dementia, and frontotemporal dementia. It’s very important to identify the specific disease because dementia management varies depending on the cause. 

People commonly associate dementia with a loss of memory, but this is not always the case. Some experience different types of cognitive decline, for example, difficulty concentrating, disorientation, loss of spatial awareness, language impairment, or difficulty with planning or organisation. In these cases, it can be harder for families and doctors to recognise dementia, especially if the person is under 65, when it is less likely to be suspected. Many people with younger onset dementia experience profound personality change and start acting in ways that are unusual, inappropriate, or reckless, but they can be misdiagnosed with depression or ‘burnout’ because of their age. Public awareness that dementia can lead to these behaviours would help the families and supporters who deal with them daily. 

People with younger onset dementia are rarely prepared to deal with the insidious change in cognitive function that is its hallmark. Families and supporters often find it difficult to cope with the challenging behaviours, personality change, and cognitive impairment associated with the condition, and report a sense of grief and social isolation. People dealing with this disease at a younger age face additional barriers when seeking support, compared to their older counterparts. For example, many community organisations are only open during working hours, which means time off work. Support groups are often dominated by people having an entirely different experience of the disease. Questions and activities focus on an older generation and are not always relevant or appropriate for those who are younger. Some people face the challenge of figuring out how, or if, they can continue to work. The needs of carers are also different: suddenly they are responsible for far more than anticipated, often at a time when they’re not financially or mentally prepared for the huge task at hand. 

Everyone’s experience of dementia is different which means support systems must be diverse enough to cope with needs of all people, regardless of age. Wonderful facilities are beginning to emerge for this very specific group, but our understanding of dementia must change too, so the stigma is removed and there is greater awareness that dementia does not only affect older adults. This, in turn, will improve infrastructure for young dementia patients and their loved ones.

I work with a family that carries a genetic variant that pre-disposes them to younger onset dementia. Our goal is to identify a biomarker that allows us to perform a non-invasive test to identify the presence of dementia very early, when we think it’s most likely to be treatable. We identified that this family carried the genetic variant when a family member passed away and donated their brain to us here at the Centre for Brain Research. The family volunteered to be involved in research and together we established this long-term study. We report research progress back to the family to help them further understand the disease that affects them. This family is dealing with a serious inherited condition by focusing on their positive contribution to dementia research. 

But what is the point of developing a test to identify dementia early if there is no cure? We believe for treatment to be successful, it needs to be delivered early, so we need to be able to identify people at this early stage of dementia to test potential treatments.

Traditionally, potential treatments have only been tested in people well past this early stage, and they have all failed. By focusing on locating early biomarkers we will be best placed to test potential new treatments once identified. New Zealand researchers are part of the international research effort to identify these potential new treatments. Until a treatment is found, we can all support those affected by dementia by remembering that they are still the same person, and that the changes we see in them are the direct result of this dreadful disease and its effect on the brain.

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