• National Neuroscience Institute (NNI) sees more than a three-fold increase in number of patients with Young Onset Dementia (YOD)
• Economic burden for YOD patients is almost two times more than older dementia patients
• Findings highlight need for more welfare and financial assistance programmes to support patients and families

Researchers from the National Neuroscience Institute (NNI) have reported increasing numbers of patients diagnosed with Young Onset Dementia (YOD), with data suggesting that they are likely to face significant social challenges and lifestyle changes brought upon by high economic burden. Their findings highlight the need for special programmes that offer employment and financial assistance to support patients and their families.

Data over the last five years demonstrate that the number of patients diagnosed with YOD has risen significantly. The greatest increase was in 2014 and 2015, and is likely related to the increasing awareness and availability of dedicated clinical services for this condition at NNI.

YOD refers to the onset of dementia before the age of 65 years. Patients are presented with cognitive and behavioural problems, and majority of them have language deficits along with altered behaviour. Due to the younger age of onset, many are still in employment and have young families when the disease sets in.

YOD has been seen in adults who are economically productive and socially active. While the cost related to dementia in the elderly has been widely studied, the cost related to YOD had been largely unknown. NNI clinician-researchers embarked on a cross-sectional study to uncover the costs incurred by YOD patients as compared to Late Onset Dementia (LOD) sufferers, and how disease etiology affects this.

What the Findings Show

Their findings reveal that YOD patients face substantial health, social and financial problems, as well as a decreased quality of life. Patients are reported to have shorter survival, more rapid cognitive deterioration, greater frequency of language disturbance, as well as early and more severe behavioural changes as compared to older patients with dementia.

For younger dementia patients, the lack of dedicated social-financial support systems is also a major concern. As symptoms emerge, patients go through subsequent loss of employment, causing economic hardship to their families. Furthermore, the cost of caring for their dependents such as young children and aged parents, and the psychosocial impact of YOD on the community, is likely to be significant.

Associate Professor Nagaendran Kandiah, Senior Consultant, Department of Neurology, NNI and principal investigator of the study said, “The prevalence of YOD is increasing worldwide. In this study, which is the first of its kind, our findings clearly demonstrate that the total cost related to YOD is almost twice that of dementia in older patients.”

The study demonstrated that the median annual cost among community-dwelling patients with YOD was SGD 21,391 (approximately USD 15,815 as of 31 January 2015), and SGD 11,356 (approximately USD 8,396) for elderly patients with dementia. Indirect cost such as loss of income and cost related to care needs contributed heavily to cost related to YOD. Young patients suffering from Frontotemporal dementia (FTD) had the highest cost, followed by those with vascular dementia and Alzheimer’s disease.

43.2 per cent of YOD patients reported loss of employment due to dementia, as compared to 2.4 per cent in elderly patients. From the study’s YOD cohort, 38 patients were out of jobs because of symptoms directly related to dementia. Among them, 40 per cent lost their jobs despite being in the mild disease stage. The major contributor to indirect cost among YOD patients was related to loss of productivity, where patients faced symptoms such as gait dysfunction, language impairment, or difficulties performing job-related tasks.

Welfare for the Afflicted

As the disease burden may rise with the increasing population, researchers hope that health authorities in Singapore and other countries will look into providing essential welfare, rehabilitative and financial assistance to the affected individuals and their families. This will offer comfort and minimise the socioeconomic burden and harsh lifestyle changes caused by this devastating disease. Research into specific brain changes in YOD as well as genetic and vascular contributions will be required. In this respect, NNI is currently conducting comprehensive research into YOD. A project entitled, “Singapore Young Onset Dementia Cohort Study (SYNC) was funded by the National Medical Research Council in 2015 and is currently in progress.

“To ensure that YOD does not result in entire families being socially and economically disadvantaged, policies to assist young children and dependents of YOD to cope with this disease will need to be put in place”, says A/Prof Nagaendran.

Editor’s Note

Known as “Cost Related to Dementia in the Young and the Impact of Etiological Subtype on Cost” this study has been published in the Journal of Alzheimer's Disease, an international multidisciplinary journal to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behaviour, treatment anhttp://content.iospress.com/articles/journal-of-alzheimers-disease/jad150471d psychology of Alzheimer's disease. More details of this study: http://content.iospress.com/articles/journal-of-alzheimers-disease/jad150471