KARACHI: Dementia affects more than 35 million people worldwide. This number is expected to almost double every 20 years as populations age, according to a new WHO report.
WHO Director-General Dr Margaret Chan said that she could think of ”no other condition that places such a heavy burden on society, families, communities, and economies.” In some big cities in China, the lives of people with dementia and their caregivers have been improved through caregiver support groups that assist families who take care of dementia patients at home.
When she was 71, Sun Yuhua started to lose her memory. She kept forgetting what she had just said or done. She would repeat the same question again and again and fail to remember the answer. Worst of all, she could no longer manage to perform simple household chores.
Yuhua knew that all this was happening, but could not bring herself to go to a doctor. Fortunately, her husband was more ready to seek help. He heard about a caregiver support group for dementia sufferers, and was finally able to persuade Yuhua to make an appointment with a memory clinic.
Dementia is a progressive brain disorder that makes it increasingly difficult to remember things, think clearly and communicate with others. It is one of the major causes of disability and dependency among older people worldwide. An estimated 9.19 million people in China suffer from the disorder, more than any other country in the world.
Most people who have dementia in China are taken care of at home. Caregiver support groups are an important resource for both patients and their families.
Zhensheng’s support group at the Peking University Institute of Mental Health in Beijing was the first to be established in China. Since 2000, people have come together with professional volunteers to share experiences and receive support and advice. The groups offer caregivers an opportunity to vent frustrations and provide a platform to explore different ways to help and cope with dementia patients.
However, caregiver support groups still only exist in bigger cities. Elsewhere, resources are few and far between. The number of memory clinics with well-trained neurologists and psychiatrists is limited and only a few are able to provide integrative care including medication and psychosocial interventions for people with dementia. This means that many cases go undetected and unsupported.
“We are shocked at the great numbers of old people who develop dementia”, says Li Tao, the director of the Qinglongqiao Community Health Centre. “They live among us but our doctors do not know how to identify them and detect them during routine medical checkups.”
In order to improve early detection and home care of dementia patients, efforts are under way to better link specialized and community services. A pilot project in Beijing is exploring whether group training and support for family caregivers can help relieve the burden on caregivers and slow down the decline in patients’ daily activity. The project is also trying to find out whether moving services from medical hospitals to community centers could improve access and affordability.
“If we work together with communities, we may be able to keep more older adults engaged”, says Yu Xin, the Director of the WHO Collaborating Centre for Research and Training in Mental Health in Beijing. “When services are within walking distance, it is easier for older adults to get their mental health status checked and receive support.” Since July 2013, the WHO Collaborating Centre has been running a training programme for community doctors to teach them the basics of dementia care and improve their screening skills.
Life is certainly much brighter for Sun Yuhua and Zhou Zhenshen thanks to the support group. “Joining the group, learning from the mini-lectures and other families’ experiences, I am picking up ideas and becoming more confident that I can help my wife live with her dementia, and I feel more hopeful,” says Zhou Zhenshen.