隨著人口迅速老齡化和失智症例逐年增加，澳門必須找到新的方法來支援失智症患者及其陷入困境的家庭。
根據 今年6 月澳門統計暨普查局發布的2022人口普查報告，澳門 65 歲以上的人口在過去十年中翻了一倍以上，佔現時人口的 12.7%， 比同期增加20%；相繼而之， 按照世界衛生組織所發佈報告，人口老齡化往往會導致更多的失智症病例。失智症是表示大腦損傷的症狀的總稱——本質上是指病患的記憶力、思維能力、方向感、語言技能和社交技能退化，阿爾茨海默病則是最常見的失智症類型之一；總括來說，目前沒有治愈這種會殺死腦細胞的神經系統疾病的方法。
根據澳門老年癡呆症協會 (MADA) 引用的 2021 年研究——澳門癡呆症患病率和發病率的人口趨勢分析”指出目前已有 6,000 多名澳門人被診斷出患有失智症並預計這一數字每年將增加 1,000 例。至於全球失智症病患的數字，阿爾茨海默氏病國際組織估計，截至 2020 年，失智症會影響全球超過 5000 萬人，並預測病例數每 20 年翻倍的升幅。 然而，根據 2011 年和 2021 年進行的研究，失智症在中國內地的患病率卻以在短短十年內翻了一倍多。失智症全球惡化量表將該綜合症分為七個階段，患者從第五階段開始，將無法在沒有任何幫助的情況下生活；到第七階段，患者將失去所有的語言能力、行動能力和排尿控制能力。綜觀來說，家庭成員為失智症患者提供絕大多數的家庭護理卻沒有得到相應的支援，故此亦被稱為「隱形第二患者」。
澳門明愛秘書長潘志明在一個採訪中表示，澳門大部分照顧者都低估了照顧患有失智症的長者親屬的壓力，也不知道何時該尋求專業幫助。 澳門大學和扶康會的一項研究發現，近三分之一負責照顧患有精神障礙（包括失智症）的家庭成員都經歷過中度至重度抑鬱症，近一半的人在照顧家人的過程中經歷過中度至重度焦慮症。失智症嚴重影響患者、他們的家庭和社會，這反映出一個重要問題：澳門是否準備好面對人口老齡化的社會轉變？
澳門面對的挑戰
目前全澳只有兩間安老院舍，分別是欣頤居護養院和筷子基綜合安老服務中心，是配備接收失智症患者入住的社福機構，而另外三間的日間護理中心有專門提供認知治療和起居訓練等服務，但據社工局的調查發現遠遠供不應求。目前需要大約兩個月的時間來確認失智症診斷，然後再花幾週時間進行後續家訪，以評估被患者者是否適合入住相應的機構。 但接下來卻是長達數年時間的等待，直至現有住院病人去世後，患者才有機會獲准進入設施，而在此段空窗期，患者必須在家中由家人或合格的家庭傭工照顧。
澳門明愛在 2021 年進行該課題的研究時發現，大部分受訪居家照顧者在照顧失智症患者時都感到壓力和孤獨。 該組織指出，由於社會大眾期望他們承擔大部分的照顧責任，心理崩潰在失智症護理人員中很常見；更重要的是，許多家庭因缺乏醫療保健專業人員的指導而感到無助。雖然已經有一些新的日託中心和住宿院舍即將開業，但澳門土地資源少使得建造任何類型的新設施都成為一項挑戰，將繼續深化供不應求的問題。
關於失智症世望屋有以下建議
在短期內，澳門可以通過實施一些措施來減輕居家護理人員的壓力並改善失智症長者的福祉：
- 將 MADA 的熱線擴展為全天候服務
MADA 現有的求助熱線在周一至週五由訓練有素的專業人員接聽，但下一步，該服務可以通過實時聊天選項、AI 支持的幫助台和 24/7 幫助的常見問題解答頁面在線擴展。 提供的幫助範圍也可以從目前的服務（包括一般失智症信息、護理技巧和醫療保健新聞）擴展到包括治療選擇、財務和法律資源以及危機諮詢等，為正在掙扎或需要支持的護理成員或患有失智症的病人提供了即時及全面的幫助。
- 提供暫息護理服務
暫息護理讓居家護理人員可以暫時擺脫照顧家人的束縛，並獲得急需的喘息的機會。 它一般可以透過志願者或付費專業人員到訪患者居住的家中，並照顧他們幾個小時、幾天甚至幾週；在某些情況下，亦可以由臨時護理在日託中心或住養院中進行。 在英國，暫息資金由地方議會、國家醫療服務體系和慈善機構提供。
- 改善照顧護理培訓課程
訓練有素或經過認證的失智症護理人員可以減輕醫療系統的壓力並提高所提供的護理水平； 在內地，自 2020 年起，專門針對失智患者的護理員培訓已成為職業認證體系的一部分。而澳門最近 亦推出一些針對家庭護理員的培訓，由鏡湖護理學院和澳門明愛分別提供專業及家居護理員的培訓課程，目前兩班各有 43 名和 30 名學額上限，增加學額可讓更多有志投身行業或有家庭需要的受眾受惠。 另外，澳門政府可以考慮將護理人員培訓納入勞工局開展的帶津培訓計劃，增加本地人就業機會。
從中期來看，澳門可以實施“智慧城市”計劃，透過利用各種科技和創新，提高失智症患者的獨立性從而改善他們的生活。例如，澳門政府可以將現病的交通應用程序升級為更適合老年癡呆症的版本，以幫助其無障礙出行：通過更簡單的界面顯示來簡化出行路線（只顯示從 A 點到 B 點的直接路線）將有助於順利出行並減少輕度失智症患者的困惑。 另外，具有實時位置的虛擬地圖、共享跟踪記錄的能力以及 999 自動撥號功能將使失智症患者的旅程更加安全。同時，澳門政府也可以補貼失智症患者家中的安裝智能家居設備，如感應照明、自動關閉的爐灶、水隔離器和跌倒檢測器也會有所幫助，增加患者的居家安全。
從長遠來看，澳門已經開始透過發展粵港澳大灣區（GBA）來幫助解決其土地稀缺問題； 珠海的澳門新街坊的開發便是一個好例子，澳門應將更多為失智症患者提供服務的日託中心和住宿設施納入新城市計劃中，滿足因人口老化而不斷增長的需求；另外，公營和私營機構都可以根據澳門發展醫療健康產業的政策，考慮更多利用大灣區資源的創新醫療模式。
政府可以考慮資助發展仿照荷蘭的 De Hogeweyk失智症友好社區， De Hogeweyk 是一座類似荷蘭村莊的失智症患者療養院，並內設商店、雜貨店、電影院等，所有工作人員均由訓練有素的失智症專家組成。 這個想法是讓患者在遠離公眾的安全空間的情況下過上相對正常的生活，而目前 De Hogewey 方法令患者在該環境中體驗到的高質量生活而廣受讚譽，目前已被多個歐洲國家採用，澳門借鑒國外的案例，發展一個符合國內文化的首個中國失智症村。
With a rapidly ageing population and dementia cases increasing year after year, the city must find new ways to support individuals and their struggling families.
The number of people over 65 years old in Macao has more than doubled in the past decade, according to the census report, released in June. This age group now makes up 12.7 per cent of the city’s population, which grew at a comparatively modest 20 per cent over the same period. As the World Health Organization has reported, ageing populations tend to see more cases of dementia.
Dementia is an umbrella term for symptoms that indicate brain impairment – essentially, the deterioration of someone’s memory, thinking ability, sense of direction, language skills, and/or social skills. One of the most common types of dementia, Alzheimer’s disease, for which there’s no known cure, is a progressive neurological disorder that kills brain cells.
More than 6,000 Macao people have already been diagnosed with dementia, according to a 2021 study cited by the Macau Alzheimer’s Disease Association (MADA). The authors of that study – “Population trend analysis of dementia prevalence and incidence in Macau”, published by the Macau Journal of Nursing – expect that number to rise by 1,000 cases each year.
Alzheimer’s Disease International estimates dementia affects over 50 million people worldwide as of 2020 and predicts a doubling of cases every 20 years. Dementia’s prevalence in mainland China, however, has more than doubled in just a decade, according to studies conducted in 2011 and 2021.
The Global Deterioration Scale for dementia breaks the syndrome down into seven stages. From stage five onwards, people can no longer live without some assistance. By stage seven, all verbal ability, mobility and urinary control is lost. Globally, family members provide the vast majority of in-home care for people with dementia – and have been dubbed “invisible second patients”.
As Secretary-general of Caritas Macao, Paul Pun, stated in an interview, most caregivers in Macao underestimate the pressure of taking care of elderly relatives with dementia and fail to recognise when to seek professional help. A study by the University of Macau and the Fuhong Society found almost a third of people responsible for looking after a family member with mental disabilities, including dementia, experienced moderate to severe depression, and almost half experienced moderate to severe anxiety in the course of their caretaking.
Dementia profoundly affects those who have it, their families and society, which raises an important question: Is Macao ready to care for its ageing population?
Challenges to overcome
There are currently only two residential care facilities in Macao – Cheerful Home and Fai Chi Kei Integrated Elderly Service Center that accept people with dementia as live-in patients and three daycare centres offering services like cognitive therapy and “daily living” training. This is not enough, according to the Social Welfare Bureau.
It usually takes around two months to confirm a dementia diagnosis, followed by another few weeks for a follow-up home visit to assess the diagnosed person’s condition for admission to a dementia facility. After that, it can take years to finally be admitted into a facility. Beds often aren’t available until an existing in-patient dies. During this time, the patient must be cared for at home by family and qualified domestic workers.
When conducting research on the topic in 2021, Caritas Macao found that the majority of the home caregivers interviewed felt stress and loneliness while looking after loved ones with dementia. The organisation noted that psychological breakdowns were common amongst dementia caregivers due to the demanding responsibilities expected of them. What’s more, many families struggled with a lack of guidance from healthcare professionals.
While there are some new general day-care and residential centres opening, land scarcity in Macao makes building new facilities of any kind a challenge – demand continues to outstrip supply.
Genervision House’s vision for dementia care
In the short term, Macao can take pressure off home caregivers and improve the well-being of seniors with dementia by implementing a few support strategies:
– Expand MADA’s helpline to become a 24/7 service
This provides immediate help for caregivers (or those with dementia) who are struggling or need support. MADA’s existing helpline is manned by trained professionals from Monday to Friday. The service could be expanded online with a live chat option, an AI-powered helpdesk, and an FAQ page for 24/7 assistance. The help offered could also expand from the current services (which include general dementia information, caring skills, and healthcare news) to include treatment options, financial and legal resources and crisis counselling.
– Provide respite care services
Respite care gives home caregivers a break from looking after their family members, and a much-needed chance to re-energise. It usually involves volunteers or paid professionals visiting homes where people with dementia live, and looking after them for a few hours, days, or even weeks. In some cases, respite care takes place in day centres or residential facilities. In the UK, funding for respite is provided by local councils, the National Health Service and charities.
– Improve caregiver training
Well-trained and/or certified dementia caregivers take pressure off the medical system and improve the levels of care provided. In mainland China, caregiver training specifically for dementia patients has been part of the country’s vocational certification system since 2020. While there is some training for home caregivers in Macao – offered by Kiang Wu Nursing College and Caritas Macau – with 43 and 30 student enrollment caps annually, the career path could be more accessible. For example, the Macao government could incorporate caregiver training into its Employment Orientation Training Program.
In the medium term, Macao could implement so-called “Smart City” initiatives, which harness technology and innovation, to improve the lives of people with dementia by boosting their independence.
For example, the Macao government could upgrade the city’s transportation app into a more dementia-friendly version that aids accessibility. Simpler interfaces showing streamlined commuting routes (direct trips from Point A to Point B) would streamline journeys and reduce confusion for people with mild dementia. A virtual map with real-time locations, the ability to share tracking records, and a 999 auto-dial function would make journeys for people with dementia a lot safer.
Smart home devices such as motion-sensitive lighting, stoves with that automatically shut-off, water isolators, and fall-detection monitors would also help. Meanwhile, the government could subsidise the installation of such safety devices in homes where people with dementia reside.
In the long term, Macao is already starting to look to the Greater Bay Area (GBA) to help solve its land scarcity issues; the Macao New Neighbourhood residential development in Zhuhai is one example. More daycare centres and residential facilities catering to dementia patients should be incorporated into such plans to accommodate growing demand for such services. Both public and private organisations could consider more creative healthcare models that make use of the GBA’s resources, in accordance with Macao’s policy of developing its healthcare industry.
The government could consider funding dementia-friendly communities, modelled on De Hogeweyk in the Netherlands. A nursing home for dementia patients that resembles a Dutch village, De Hogeweyk has shops, a grocery store, a cinema and more – all staffed by trained dementia specialists. The idea is to let patients live relatively normal lives in a safe space (where no money is used) away from the general public. The Hogewey approach has been widely praised for the high quality of life patients experience in that environment. The model has been adopted in several European countries already – and Macao has a chance to build the first dementia village in China.