Working on the grassroots for Alzheimer’s alleviation in China

Experts declare Alzheimer’s disease as the coming epidemic of the 21st century. More than half of the sufferers live in countries without sufficient care. To alleviate impacts, immediate and coordinated action is necessary - particularly in aging countries like China. A people-centered approach is what Amity now advocates for this underprivileged group.

Former actor and president of the United States Ronald Reagan or African-American rights activist Rosa Parks have been affected, as well as English novelist Terry Pratchett is diagnosed with Alzheimer’s. Often the disease gains the center stage when celebrities are concerned.

But Alzheimer’s and its consequence dementia is a spreading condition that affects societies all over the world. Experts now declare Alzheimer’s disease as a coming epidemic of the 21st century. Most people are facing cases within their families, circle of relatives or friends.

Aging populations in comparison: Dementia will increase inevitably within aging societies. (Source: UNCTAD)

A disease not to be confused with aging

Dementia is not a single disease but rather a state of neural capacity. The outcomes are a loss of cognitive abilities. Affected areas are attention, language, logic and memory. This leads to a progressive decline of orientation and self-sufficiency. There are several causes of dementia. The most common form is Alzheimer’s disease, which contributes 60-70% of the cases. Therefore, it is important to recognize that dementia is not part of a normal aging process but a disease that can and should be arrested.

If Alzheimer’s disease is the cause of dementia, it cannot be cured and usually leads to death after 7 years on average. The earlier the disease is recognized and appropriately treated, the better and longer the quality of life and health of the patient can be maintained. Unfortunately, people still think that dementia is a normal part of the aging process and that nothing can be done to slow it down or bring improvements.

A global health challenge gets the center stage

WHO report classifies Alzheimer’s as a coming epidemic. (Source: WHO)

Increasingly there is media coverage and discussion about Alzheimer’s and dementia in the public domain. During the last few years, the topic starts to take center stage in politics. In 2012, the World Health Organization published an extensive study named “Dementia, a public health priority”.  Besides calling for further research efforts, experts nowadays agree that immediate actions are necessary as cases of dementia are expected to triple worldwide by 2050 from currently more than 40 million to more than 115 million.

Worldwide expenses for care are now estimated at US$ 600 billion. By 2030, this number is estimated almost to double to US$1,117 billion. Consequently, the costs of care for dementia threaten to burst the national budgets and health care systems. Hence, experts are calling for efforts and campaigns just like against AIDS. While risk factors for dementia as age, genetics and family history cannot be changed, a healthy lifestyle including physical and social activities, stress reduction and healthy diet may be the best strategy to lower the risk of an outbreak.

Urbanization level by comparison: China is catching up fast, but social security nets are still at a stage of emerging. (Source: UNCTAD)

Different and equal challenges

In Western Europe and North America 1.3% of the GDP is spent for the treatment of dementia patients while in Central Asia it is so far only 0.36% of the GDP. About 80% of the worldwide costs are spent in high-income countries. However, people of affluent countries facing similar strains as poor caregivers because the nature of the disease causes stigma and blame within all societies.

The consumption of time and high amount of costs caused by a care-depended patient leads to the situation that relatives have to shoulder a significant part of the care. In high-income countries, 45% of the care is informal and unpaid. Although, as part of a longer life expectancy and an aging population, Europe and China are facing the same problem, the scale, cultural implications and the remedial measures differ. In middle-income countries like China, the social safety net is just in the stage of being built up and almost all care burdens the family.

With economic reforms leading to migration and urbanization, family ties are weakening in China. The economic disparity between the East and West China, rural and urban provision and varying local policies are exacerbating the problem and make reliable figures hard to obtain.

The drawback of China’s success

In China, the retirement age is 60 for male and 50 for female workers. In 1951, the life expectancy was 46, while it went up to 73 at present. The 1950s to 1970s baby boomer come into the retirement age and now the other side of the coin of China’s success since the Opening-Up policy is seen. Soon China’s work force will decline and the question arises as to how a young working force can afford the care for a large aging society?

Workforce will decrease in China. Can the future workforce take care of the elderly?  (Source: UNCTAD)

In 2010, five workers supported one pensioner. In 2020, this figure will decrease to three. This dilemma is often associated with the concise question “Is China getting old before it is getting rich?” Considering the rising amount of intensive-care patients, we see this question as becoming increasingly urgent and important.

Overview and comparison of aging societies by regions

Population pyramids by comparison: The biggest imbalances between a young and an old population will occur in China and Europe. Just as low-income countries, China is in the urgent need to develop campaigns and strategies for social care of the elderly. (Source: Population Division, DESA, United Nations)

According to a document issued by the State Council on September 14th, there were already 194 million people in China aged over 60 in late 2012. Working on the estimate that 4-6% of these people will have Alzheimer’s means that in China there are more than seven million affected people. Nanjing is considered to have more than 100,000 sufferers of dementia.

Running an elderly home and a community center for the elderly, Amity staff experiences daily that Alzheimer’s places a heavy burden on patients and their beloved ones. Caring for Alzheimer’s patients is a long and arduous process. People who are affected ought to be especially recognized by society and their wider families.

Love doesn’t forget

Therefore, in September 2013 Amity worked in six city districts with a team of 30 work units putting together an ongoing charitable program called “Love doesn’t forget”. The work units were working hand-in-hand with several partner organizations conducting various activities. Thereby Amity did not simply present information about Alzheimer’s but also teach practical activities to alleviate the impacts to the affected families.

 

As part of Amity’s “Love doesn’t forget” - program the poster (left) tells the reader: “When memories slowly slip away, love becomes increasingly clearer.”

Getting the message out in the community

 A movie provides information about Alzheimer’s disease. People visiting Amity’s Home for the Elderly to inform themselves about Amity’s elderly care engagement.

Although, at the present stage there are no ways to cure the many causes of dementia, it is possible to prolong and eventually prevent it as well as to improve one’s ability to effectively avoid some distressing symptoms. Brain gym exercises are easy to understand and can be done anywhere at any time without requiring special equipment. This also reduces the pressure on the family members of sufferers or at least give them more time to interact with the patients as they help them do exercises.

 

Simple brain activity is said to impede Alzheimer’s onset. Physical fitness diminishes risk factors for the outbreak.

Alzheimer’s actually begins during the middle age with symptoms appearing and their related repercussions. If one does not realize and seek treatment early, it is impossible to treat it once it has progressed to a serious stage. Thus, Amity organized free medical services in the main square of Nanjing including measuring blood pressure and conducting simple intelligence tests. By knowing that cerebral vascular disease, high blood pressure and nutritional metabolic disorders can easily bring on Alzheimer’s, specific recommendation of nutrition, physical exercise and intelligence training were given to residents in the areas.

Early diagnostic enables to take necessary measures at an early stage. Exercise as a preventive measure prolongs the outbreak of Alzheimer’s.

Because family members often feel perplexed and helpless, experts were invited to give advice and support to the families of Alzheimer’s sufferers and give suggestions about treatment.

Families from Nanjing participated in person and by live interaction through the internet. This activity encouraged families to exchange their experience and to access medical help.

Families of Alzheimer’s patients discuss and exchange experiences. Parties concerned raising awareness about Alzheimer’s

The Amity Social Services Network, a social network of charitable and volunteering organizations in Nanjing were cooperating in social activities, organized volunteers to visit families with Alzheimer’s sufferers during Mid-Autumn Festival.

Volunteers visiting homes of Alzheimer’s patients helping to relieve the family’s burden.

Getting the attention of policy makers

Medical treatment is necessary and beneficial for controlling psychological symptoms of Alzheimer’s. The families of many patients choose to delay or give up medical intervention because it is too expensive. Studies show that only 14% of those in the early stages of Alzheimer’s in China are formally diagnosed as such, and there are only several thousand patients formally diagnosed with Alzheimer’s in Nanjing.

As part of the “Love Never Forgets” effort, there was a call for Alzheimer’s being added to the list of chronic diseases to be covered by health insurance. Participants included representative of family members of sufferers, a local broadcasting program and Amity Foundation members.

Together we took the initiative to the streets inviting people to join in calling on relevant government bodies add Alzheimer’s to the list of chronic diseases, thus guaranteeing medical treatment for sufferers. At first, residents did not understand what we were advocating, but they came along out of curiosity. After the teams of advocates explained to all passers-by by what the movement was about, residents signed their names on the banner.

Some older people said, “Although I don’t know how to write, I’d like to draw a heart to express my support. If I end up with Alzheimer’s one day, I very much hope that the medication I need will be on the list of approved medications.”

Amity hopes that the relevant government bodies will consider the petition and discuss it - not only to benefit people financially, but even more important, to give affected people the feeling that the society do care about Alzheimer’s sufferers and recognize and appreciate the efforts of their families and caregivers.

People signing a banner to advocate for the financial situation of Alzheimer’s patients. The sign says ‘Please add Alzheimer’s to the list of “chronic diseases”’.

Putting the people into the center

Amity will continue pushing this topic into the spotlight of modern societies, where striving for efficiency and functionality seems to stand in sharp contrast towards the physical and often disturbing outcomes of Alzheimer’s on women and men.

Developed countries have already accomplished high standards of institutionalizing and bureaucracy to cope with this challenge. Amity hopes to draw further on the support and exchange of our international partner’s expertise and experience on our efforts for the elderly in China. Amity wants to remind that behind the inconceivable figures of the disease and besides the needs for more institutionalized structures, we should not forget the fate of the individual people. They are served best with our sympathy, passion and love.

When memories slowly slip away, love becomes increasingly clearer

 

Memories disappear from your mind over time. Can you imagine this torment? Past experiences no longer exist. People you know slowly become strangers, to the point that you have no recollection of them at all. And nothing can be done about it.

Alzheimer’s sufferers are terribly fearful; loneliness fills the hearts of those who lose their memories. They desperately and even fiercely try to retrieve the tiniest wisp of a memory but lose hope after coming up with nothing.

Many sufferers put slips of paper everywhere to remind them of things in order to try to retain their rapidly fading memories; this is the start of a helpless battle. As the disease gets worse, people they see each day, faces they’ve known for years, streets they have traversed many times each day slowly slip from their memories…….  “Where are we? Where am I going?”  Places they knew so well change and become strange; a man may even look around and ask his wife, “Who are you? What is your name?”……

These are not just scenes from a movie. Family members of sufferers, workers in the community and volunteers all have similar stories about Alzheimer’s sufferers and their families. Perhaps they are the ones who best understand the phrase, “When memories slowly slip away, love becomes increasingly clearer.”

If you have read this article, if those close to you need this type of care and love or if you would like to offer such love yourself, please get in touch with us!

(Amity’s appeal on the Chinese website)

 

This article was also published in Amity Outlook No.7