The quality of life of people with dementia at a young age needs to be improved

Early recognition and the right help and support can improve the quality of life of people with dementia at a young age

People with dementia at a young age already had symptoms in the five years before diagnosis that could indicate their developing dementia. That’s one of the important findings of epidemiologist Stevie Hendriks, who spent four years researching dementia at a young age. Researching him has taken knowledge of this condition a step further.

Hendriks conducted his research within the national PRECODE consortium led by Alzheimer Center Limburg, a collaboration between Maastricht UMC+ and various other health institutions in Limburg. She was led in this by Marjolein de Vugt, professor of psychosocial innovations in dementia, Sebastian Köhler, associate professor of neuroepidemiology, and Kirsten Peetoom, postdoctoral dementia researcher.

Disadvantaged child
Dementia is getting more and more attention, but dementia at a young age is a neglected child, explains Hendriks: “When you think of dementia, you think mainly of the frail elderly, while dementia can develop even before the age of 65. We call it dementia juvenile-onset dementia. In my research, we calculated that there are almost 4 million people worldwide with early-onset dementia and that there are 370,000 new cases every year. For the Netherlands, this means 14,000 to 17,000 people affected from dementia at a young age, with 1,250 new cases a year.’

Unraveling dementia at a young age
There has also been relatively little scientific research into this form of dementia. That is why Hendriks has conducted research into the causes, diagnostics and course of care of these patients. It is important for Hendriks and his colleagues at the Alzheimer’s Center Limburg to unravel dementia at a young age: Understanding the disease can improve the outlook for people who develop dementia at a young age. Early recognition and the right help and support can improve the quality of life of people with dementia at a young age.

Risk factors
In his research into the causes of dementia at a young age, Hendriks found that genes play a bigger role than dementia later in life. In his thesis he also describes 14 other, partly modifiable risk factors, which are associated with the risk of developing dementia at an early age: lifestyle factors, such as alcohol consumption, disorders such as diabetes and stroke, environmental factors such as the lack of a social network and genetic factors. Hendriks: ‘More research is needed to better understand the mechanisms behind these factors. It is hoped that this will ultimately lead to a better understanding of how dementia can develop at this young age and which people might benefit from lifestyle advice that can reduce the risk of dementia in general, but also of dementia at a young age. ‘

Signs before diagnosis
In order to be able to help patients with dementia at a young age, it is crucial that they receive a diagnosis in time. In practice, however, it seems that patients sometimes have different complaints for years, without it being clear that it is dementia. Hendriks analyzed the medical records of patients with dementia at a young age and made an important discovery: Patients made complaints to their GP as early as five years before their diagnosis. Five years before the diagnosis, it mainly concerns cognitive impairments, such as problems with concentration and memory. Three years before the diagnosis, there are often social complaints, such as problems with relationships or at work. A year before the diagnosis, patients often have problems in their daily functioning.

‘Obviously it’s not easy for a general practitioner to link these types of disorders to dementia,’ explains Hendriks, ‘often people think of something else, like stress or a burnout. This is understandable: they often only see someone with dementia at a young age once or twice in their career. It is hoped that this research will be a step towards greater awareness and faster recognition by general practitioners.’

Care after diagnosis
Finally, Hendriks looked at the course of care after people are diagnosed. For example, 43% of patients received some form of daytime activity after diagnosis and 44% were admitted to a nursing home. At the same time, Hendriks saw that some of the patients and their informal carers were initially reluctant to accept treatment: ‘This may have to do with a need to remain independent for as long as possible. Or with the fact that people simply find it difficult to accept help or find appropriate help. It is important that general practitioners and healthcare professionals realize this so that they can discuss it with patients and their loved ones.’

Follow-up research
It was recently announced that a national consortium, including researchers from Maastricht UMC+, led by Radboud UMC received a grant of 6 million from ZonMw for research on dementia at a young age. Stevie Hendriks will have a role in this research after his PhD: ‘We have been able to investigate many aspects with my research, but we are not there yet. That’s why it’s so important to continue research into early diagnosis, risk factors, and appropriate care and support in early-onset dementia. I am delighted that this grant gives us the opportunity to do this and that I can play a part in that.’