About 10,000 young people with dementia have been forgotten by long-term care services, haven’t they?
About 10,000 young people with dementia have been forgotten by long-term care services, haven’t they?

▲ Yea-Ing Lotus Shyu, a professor of the School of Nursing at Chang Gung University, expresses hopes that long-term care services won’t forget young people with dementia. (CNEWS information photo / photo reporter Hu Chao-hsin)

CNEWS reporter Chen Yu-kai / Taipei report

Dementia is not for elderly people only. Although the prevalence rate of dementia is only about one-thousandth, there are about 10,000 young people living with dementia in Taiwan. At a time when the incidence rate (the rate at which new cases of disease are being added to the population) is its peak, this population of young people with dementia who are forced to leave the workplace and live with a decreased revenue are at risk of being forgotten during the implementation of the Long-term Care Policy 2.0.

Yea-Ing Lotus Shyu, a professor of the School of Nursing at Chang Gung University, said that the needs of this group of young people with dementia are completely different from the elderly ones. They are at the peak of their working careers, so the question is how to re-design their working environment so that they can continue to work, have an income and even a sense of accomplishment. This is far more important than medical treatment, but completely absent from today’s policies. Contrary to all expectations, young people with dementia usually have to wait until after their disabilities further aggravate to be eligible for long-term care services.

In fact, some young people with dementia can be aged between 48 and 49 years old. Although their ability to work begins to decline, they are desperately eager to wait until they can retire so that their declining health doesn’t impact their family’s finance. They definitely need access to not only long-term care services.

The “House of Memory” of Taiwan Alzheimer’s Disease Association is the only center in Taiwan that provides services to young people with dementia from Monday to Saturday. More than 50 families rely on it, but the self-supporting budget of the three-year plan has been exhausted. When the time is up, there are concerns that the NGO won’t be able to provide such services anymore.

Dr. Ming-Jang Chiu, director of the Department of Neurology at National Taiwan University Hospital, said that the Long-term Care Policy 2.0 has included people under 50 living with dementia. This is an important achievement, but Taiwan’s government must step up its efforts and resources for the soaring needs of persons with dementia, especially whose who are under 65 years old. For instance, some countries have exclusive services for young people with dementia that assist them in redesigning their working environment. The services also allow people with dementia to work in diverse and less complex ways based on their functional level.

Another concern, according to Yea-Ing Lotus Shyu, is the absence of large-scale research projects on the increase in the number of people with dementia over the past eight years, even though the Ministry of Health and Welfare commissioned Taiwan Alzheimer Disease Association to conduct a survey on the prevalence of dementia since 2011. With so many challenges and such dire situation, the budget of the country’s overall research for dementia needs to increase simultaneously.

Yea-Ing Lotus Shyu remarked that the Taiwan Dementia Plan 2.0 has listed research and innovation as one of the seven strategies. The government should also invest sufficient funds for state-based dementia research projects or even establish state-level research center like in other advanced countries. Such center would conduct a comprehensive investigations from the epidemiological investigation, early diagnosis, long-term care models and even the impact on the national economy to find affordable quality care models that can meet the needs of people with dementia and their families.


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Photo source: CNEWS information photo / photo reporter Hu Chao-hsin

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