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Ceritaku mengikuti Alzheimer Europe Conference 2020 bersama ALZI Nederland

Oleh: Manik Kharismayekti – Science Team Alzheimer Indonesia Nederland

Alzheimer Europe Conference (AEC) yang diadakan secara online pada tanggal 20 – 22 Oktober 2020 telah selesai. Saya sangat senang bisa mengikuti agenda besar yang mendukung gerakan peduli demensia di Eropa ini. Untuk itu, kali ini saya akan membagikan pengalaman saya dari persiapan hingga bisa mengikuti konferensi ini.

Sejak tahun 2019 saya menjadi sahabat Yayasan Alzheimer Indonesia Nederland (ALZINed). Banyak program bermanfaat yang dilakukan oleh ALZINed yang sesuai dengan passion saya, terutama dalam hal memuliakan orang tua. Setelah saya menyelesaikan program master Vitality and Ageing dari Universitas Leiden, saya memutuskan untuk bergabung mendukung science team di organisasi ini. Mbak Amalia dan Mbak Tania pernah membagikan foto-foto keikutsertaan dan keceriaan mereka saat mengikuti AEC 2019 yang diadakan di Den Haag, Belanda. Mereka bercerita banyak hal seperti: bagaimana mereka bisa terlibat dalam konferensi tersebut, bagaimana cara mengirimkan abstrak penelitian/project, berkomunikasi dengan pemerhati demensia dari berbagai negara di Eropa; memperkenalkan budaya Indonesia kepada peserta konferensi dengan berdansa Poco-Poco bersama dan lain sebagainya. Cerita mereka menginspirasi saya untuk ikut terlibat di konferensi serupa pada tahun 2020.

Selain berpartisipasi dalam kegiatan yang diselenggarakan oleh ALZINed, team science juga mempunyai tanggung jawab mempersiapkan materi yang bisa kami tulis baik menjadi abstrak, laporan kegiatan maupun bahan blog. Ketika informasi bahwa registrasi abstrak AEC 2020 telah dibuka, kami sangat antusias. Mengikuti kegiatan seperti AEC menjadi salah satu wadah ‘quality time’ antara team ALZINed dan pemerhati demensia di Eropa. Lima buah abstrak pada akhirnya berhasil kami kirim.

Kebahagiaan kami sedikit terganggu ketika Covid-19 menjadi pandemi. Beberapa kegiatan fisik tatap muka sebagai salah satu bentuk cara untuk menjalin silaturahmi dan wadah untuk mengumpulkan data bagi ALZINed harus dibatalkan. Penyesuaian perlu dilakukan, seperti mengganti agenda fisik menjadi online, mengubah paper questionnaire menjadi online questionnaire. Tidak mudah, tetapi ternyata kami mampu dan bisa melakukan penyesuaian tersebut (Program Online Series ALZINed sudah masuk seri ke-29😊). Disamping itu, kami juga bersyukur 5 abstrak yang telah dikirimkan, diterima di program AEC 2020. Kelima abstrak tersebut adalah:

  1. The PROKAA Project: Measuring the impact of Stichting Alzheimer Indonesia Nederland programs;
  2. Involving Indonesian students and association in The Netherlands;
  3. The responses of Pasar Indonesia Raya visitors after experiencing dementia virtual reality in The Netherlands;
  4. Well-being from an ageing and migration perspective of older persons with Indonesian background in The Netherlands;
  5. Adapting Alzheimer Nederland handbook ‘Dementie en nu?’ to Bahasa Indonesia.

AEC 2020 pada akhirnya diselenggarakan online. Di satu sisi kami sedih karena tidak bisa pergi bersama team ke Rumania mengikuti konferensi. Namun di sisi lain, kami bersyukur karena dengan diubahnya konferensi ini menjadi online, kami tidak perlu mengkhawatirkan travelling issue terkait pandemi,  bisa mengikuti konferensi dimanapun kami berada dan pastinya menghemat budget. Walaupun kami mengikut konferensi dari rumah masing-masing (team ALZINed mengikuti konferensi dari Groningen, Zoetermeer dan Bali), tetapi kami tetap berkomunikasi dengan team, seperti: membahas sesi mana yang akan diikuti, mana presentasi yang menarik, diskusi singkat setelah mengikuti sesi.  

Ada banyak topik menarik yang dibahas dalam konferensi 3 hari tersebut. Topik besar yang menjadi fokus AEC antara lain: layanan perawatan, aspek medis dan kesehatan masyarakat, orang dengan demensia dan kebijakan. Diskusi dan presentasi yang memperluas wawasan tentang pencegahan-diagnosis-terapi demensia, support post-diagnostic, minority ethnic group, komunitas ramah demensia, kesadaran publik hingga inovasi terkait Covid-19 dapat diikuti oleh partisipan. Karena saya tertarik dengan isu lansia migran, di blog selanjutnya akan saya ceritakan khusus tentang program-program untuk grup minoritas😉.

Apresiasi saya berikan kepada penyelenggara AEC 2020. Walaupun ada perubahan format acara (dari fisik menjadi online), acara dapat berlangsung tetap menarik. Ada live streaming diskusi panel yang kadang diselingi live music, live pooling, cerita inspiratif dari orang dengan demensia, presentasi melalui zoom meeting dan penampilan poster. Di setiap sesi acara, peserta konferensi bisa mengajukan pertanyaan/opini melalui chat box. Ingin membuat janji temu online dengan peserta lain atau berkirim email dengan pembicara juga mungkin dilakukan melalui platform online AEC 2020. Bagi saya, format online konferensi kali ini cukup mudah, nyaman untuk diikuti dan bisa mengakomodasi proses interaksi antar peserta, pembicara maupun sponsor.

Setelah mengikuti konferensi 3 hari tersebut, sebagai diaspora Indonesia yang ada di Belanda, saya semakin tertantang untuk berkontribusi di dalam gerakan peduli demensia ini, untuk Indonesia sekaligus untuk negeri Belanda. Terima kasih ALZINed, Alzheimer Indonesia dan Alzheimer Nederland yang telah memberi kesempatan yang berharga ini bagi saya.

Salam Jangan Maklum dengan Pikun!

Letter from Bali, Indonesia: Secondary consequences of the pandemic

By: Eva van der Ploeg

While Indonesia as a whole has over 64,000 confirmed cases of Covid19 and more than 3,000 deaths, the island of Bali suffers from secondary consequences that will be representative of many other regions around the globe that rely on tourism as the main source of income.

As is to be expected of the number 1 tourist destination in the world, the local Balinese government responded quickly and scrupulously. Soon after the first cases in China emerged, everyone entering Bali through the airport and other entry points was screened; where necessary, incomers were quarantined. The result has been impressive: Bali has seen less than 1,500 cases until this day and never more than 800 active cases at the same time. Only 20 people have reportedly died of the new virus. Apparently, Covid19 presents with similar symptoms as dengue fever, of which there is an increased number of cases. But even when adding the fatalities attributed to dengue, the number of deaths would be less than 40 in a population of 4 million.

Unfortunately, the “Island of Gods”, as it is known in Indonesia, suffers badly from secondary consequences of the pandemic. Tourism is currently down 100% compared to one year ago. This is devastating, as around 55% of the population depends on tourism as their main source of income. 2,400 employees have been laid off and another 70,000 are furloughed. Many others have been put on reduced hours (and thus income) for the past three months. Some workers responded fast and returned to their home villages either around Bali or on Java, Timur and Flores. However, many remained and then became stuck when domestic travel was banned by the national government during May out of fear that the pandemic would be spread at an increased rate during ‘mudik’ – the outflux of people during Ramadhan to their places of origin.

Balinese families traditionally live together in a large family context. Usually at least one son remains living with his parents and is joined by his wife and children. Older people are cared for by all family members, usually also those living elsewhere. On the one hand this means that elderly people are looked after well and are not alone. On the other hand it means that this vulnerable group is hit as hard as anyone else when their adult children lose their jobs. And the few older people who are alone are in immediate danger of losing work, income and housing, too. We hear heartbreaking stories of people being removed from their ‘kos’ (shared rental living) when they cannot afford the monthly rent. Take the older man who sells donuts along one of the main roads of Denpasar: these days he only brings out a small number of donuts to sell and is frequently seen sleeping on the pavement.

 

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Photo 1. The man selling donuts in Denpasar (Photo: Winda Wulandari)

 

Reports from the ‘kampungs’ (villages) are less depressing. While observing new regulations like wearing face masks and frequent hand cleaning, older people, like others, are reported to still go out. The markets are open and the elderly will go there to sell and buy produce. They are looked after by their families, stimulated to maintain their usual activities and at the same time ‘more protected’ by younger family members as well. The geriatric ward at Sanglah hospital has currently 4 people admitted, which is below average. Thus, the nursing staff focuses on giving older people and their families in the community education about how to handle the covid situation. Many older people report that they forget to use their mask, or are lazy to put it on or find it difficult to breathe when wearing one. The Sanglah staff urges them to stay home and reminds them every day to use a mask if they do need to go out. On Fridays, they offer an exercise class and nutritional advice to maintain fitness during this time.

All in all, the rapid changes over the past four months also have some beautiful ‘side effects’. Not only do families look after each other, the ‘banjar’ (local community) keeps track of people who may need help. There are numerous pop-up ‘restaurants’ where people can pick up free meals. This sense of solidarity has extended beyond the Balinese looking after their own. Immigrants from Europe, America and Australia have started projects to support families, both Balinese and those who have not been able to return to where they’d like to be. ‘Sembako’ are distributed to families in need: these are food packages with 9 basic ingredients, including rice, cooking oil, sugar and instant noodles. Some expats have set up random sembako outlets along the main roads to share with those on the road. This sometimes leads to a rush by those interested.

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Photo 2. Alternative Sembako, including not only basics, but also pain killers, soap, tooth brushes and paste and fresh fruit. (Photo: Eva van der Ploeg)

 

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Photo 3. This man and his family in Singaraja, north Bali, have just received Sembako. (Photo: Kembar Tembau)

People are inventive: social media are full of people advertising their rice, fruits, vegetables, chickens for sale etc. Many people have started buying directly from the source, instead of going to expensive, usually foreign-owned supermarkets. And amongst these new initiatives and reconnections, amid the sharing and caring, Bali still has the same serene feeling to it. Everyone hopes to welcome back tourists soon to share the beauty and spirituality of the Island of Gods, but in a new way, where locals do not entirely depend on tourism for their income and wellbeing. A seed has been planted.

(Supporting data and written on early June 2020)

 

Dr. Eva van der Ploeg has a PhD in Public Health from the Erasmus Medical Centre in Rotterdam. She has worked and lived in the U.S.A., the Netherlands and Australia. She is now based in Indonesia. She works internationally as a researcher, consultant and trainer of ‘Original Montessori for Dementia’ hoping to improve the life of people with dementia and those caring for them. She also specialises in Mindfulness and has recently established her company Soulful Brain.

 

Cerita Cucu Oma Lalita tentang hobi mewarnai Oma.

Pada tanggal 17 April 2020, Oma mengikuti kelas mewarnai bunga matahari (program dari Alzheimer Indonesia Nederland bertema ALZI NED Online Session #4). Mewarnai Bersama Keluarga (Dementia Care Coloring Session). Sungguh tidak disangka teknik mewarnai oma sangat baik. Dari hasil mewarnai tersebut terlihat Oma menikmati sekali. satu gambar demi gambar Oma kumpulkan. Tanpa terasa Oma sudah mewarnai  51 gambar.

Saya sebagai Caregiver merasa sangat bahagia setelah mengikuti acara mewarnai dari Alzi Nederland, Oma termotivasi untuk menyalurkan waktunya dengan mewarnai gambar-gambar yang saya cetak dari Google atau Pinterest.

 

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Oma hidup dengan alzheimer (demensia) sejak ditinggal Almarhum Opa pada tanggal 20 Februari 2016 pukul 19:47 WIB di RS MT Elizabeth Singapore (meninggal karena sudaht tua) dan selang 6 bulan ditinggal oleh Almarhumah Tante  pada tanggal 5 Agustus 2016 di Rumah (meninggal dengan tiba-tiba). Sejak ditinggal Opa, Oma tidak bisa menerima kepergian Opa. Padahal ketika masih bersama mereka sering kali berargumen dan beda pendapat. Begitu juga pada saat Tante masih hidup sering kali marah dengan Oma (karena sifat konsumtif Oma yang tidak boleh lihat tas dan sepatu yang bagus di mall).

Awal-awal Oma hidup dengan demensia saya sebagai Caregiver (Cucu Oma) merasa sangat sedih dan terpukul dan belum bergabung dengan Whatsapp Group Caregiver Indonesia. Karena sebelum hidup dengan demensia, Oma adalah sosok perempuan yang sangat baik kepada semua orang. Setelah hidup dengan demensia Oma cenderung memendam perasaannya sendiri dan tidak suka cerita kepada orang terdekat, menjadi anti sosial, mudah curiga terhadap orang, serasa berubah 180 derajat perubahan kepribadian Oma.

Pukulan terbesar Oma pada saat Tante meninggal, karena Oma kerap sekali memukul kepala dan membeturkan dahinya ke tembok karena merasa gagal tidak bisa menjaga Tante dengan baik. Kami sudah yakinkan, kami akan menyayangi Oma, meskipun tidak sehebat Tante. Tapi Oma tidak bisa menerima kepergiannya juga.

Bahkan sampai sekarang ini Oma tetap tidak bisa menerima kepergian Opa dan Tante. Dengan ingin mengangkat foto mereka dari Altar (Meja Abu). Dalam tradisi Cina meja tersebut dikhususkan untuk anggota keluarga yang telah meninggal.

Akhir kata kami sebagai caregiver Oma Lalita saya banyak mengucapkan terima kasih Kepada Tim Alzheimer Indonesia yang (Ibu DY Suharya, Pak Yaya Suharya, Ibu Amalia Fonk Utomo, Ibu Tuty, dll) telah menyelenggarakan berbagai macam kegiatan virtual (via aplikasi Zoom, Instagram Live, Facebook Live) selama masa pandemic Covid 19 ini yang bisa diikuti oleh Caregiver dan Orang Dengan Demensia. Karena setelah mengikuti kegiatan virtual ini Oma mempunyai semangat kembali untuk berkarya dan semakin  hari semakin baik hasil karya nya. Harapan kami sebagai Caregiver, Alzheimer Indonesia mengadakan acara-acara yang makin beragam untuk Caregiver dan ODD. Dan Oma makin bahagia dengan kegiatan yang dilakukan setiap harinya.

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Jakarta, Juni 2020

Novianty, Cucu Oma Lalita

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Foto dan cerita oleh: Novianty (cucu Oma Lalita)

Video oleh: Pri Hadi

(Komunitas Caregiver Alzheimer Indonesia)

 

 

 

 

 

 

‘Dilemmas during Covid-19’

 

Dilemma …

 

Have you ever experienced this situation?

You have your parents in your house during this Covid-19 situation.

You love them so much and that’s why you ask them not to go out during this crisis.

You do the groceries for them. You don’t receive guests at home.

You do your best to protect them.

However, have you ever asked if they are OK?

They are probably not OK. Maybe they are unhappy or feeling lonely or useless.

Your Dad might lose your hug on his 70-year birthday because you are practicing social distancing.

You are afraid to go home after working in the hospital while your 72-years old mother misses you.

Your mom, who has had cognitive impairment since a couple months ago, is unhappy because she could not meet her grandchildren.

If you have experienced or are still in those situations now, don’t worry, you are not alone.

It is now happening worldwide. Covid-19 changes our lifestyle, changes our society. The data that we have read from WHO or our government states that older persons are the most vulnerable population in this situation. We are responsible for protecting our loved ones, our parents. But at the same time, we want to give them a good quality of life.

I participated in a webinar session for long-term (LT) care that was organized by LUMC, Leyden Academy and GGD Hollands Midden. Through a panel discussion with elderly physicians, medical ethics, chairman and staffs of LT care institution, public health doctors and researchers, the webinar participants were invited to follow the discussion from different perspectives on how this Covid-19 situation changes LT care; how the regulation for closing nursing homes from visitors (this also applies for the family member) impacts the clients; what is the quality of life of older persons during isolation. Covid-19 affects many aspects of LT care in The Netherlands, and I believe it also influences many aspects in Indonesia, my native country.

I remember a couple weeks ago when I spoke to my mother through a video call. She said softly with a big smile, ‘I feel like I am in jail. Your brother strictly prevents me from going outside. I understand that he wants to protect me, but I am bored.’ I try to understand my mom and also my brother. If she is with me, I will do the same. I appreciate my brother who not only supports his own family but also takes care of my parents, especially during this rare situation. Another story during Ramadhan 2020 is when a friend of mine chatted in a WhatsApp group, ‘I really want to visit my Dad but I will not. He is old and alone. He may not be happy with my decision, but I am also considering his health.’ We tried to address the dilemma: showing interest in others or ourselves; freedom or safety; being protective or taking risks, etc.

Apart from the dilemma of this situation, some good news are being heard, e.g. people becoming creative to take advantage of online platforms; the improvement of telemedicine in health care; people take the opportunity to share their empathy, through their creativity; Eid al-Fitr, which is one of the moments to meet and share love with our family, becomes a meaningful isolation and self-reflection, and many more.

You are not alone. If you have a dilemma about your decision as a caregiver, as a child caring for parents, share your dilemma with people you trust or would want to listen. You can also share with Sahabat Alzi. We hope that in this rare situation, no matter how small our actions are, we will still benefit our loved ones, our parents, and others.

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Manik Kharismayekti

Science Team Alzheimer Indonesia Nederland

Cerita Mas Ristiono menjadi Relawan di Alzi Ned.

Jangan Maklum Dengan Pikun
Slogan diatas merupakan kampanye yang dipopulerkan oleh lembaga Alzheimer Indonesia. Kampanye tersebut ditujukan kepada semua lapisan masyarakat. Anak-anak, remaja, dewasa dan yang utama adalah para orang tua (lansia) dengan gejala demensia.
Kenapa kampanye tersebut ditujukan kepada semua orang? Apakah semua orang pasti mengalami kepikunan? Untuk menjawab pertanyaan-pertanyaan tersebut mungkin butuh waktu lama untuk menjelaskan dengan detail tentang gejala demensia dan bagaimana solusinya. Jadi pelan-pelan saja ya, semoga saya bisa memberikan informasi pada pembaca, sehingga sedikit banyak memahami tentang gejala demensia alzheimer. Awal perkenalan saya dengan lembaga alzheimer adalah saat ada event olahraga yang diadakan oleh PPI (Perhimpunan Pelajar Indonesia ) di Groningen.
Groningen sendiri adalah salah satu kota pelajar di Belanda bagian Utara. Kotanya bersih, nyaman dan ramah. Cerita tentang kota Groningen lain waktu aja ya saya tulis, Insya Allah banyak spot-spot indah yang bisa menjadi inspirasi kita bersama. Kembali ke alzheimer. Ya, di Belanda lah awal perkenalan saya dengan lembaga yang dikenal dengan AlziNed (Alzheimer Indonesia Nederland). Kebetulan di event olahraga PPI Groningen, Alzi Ned juga membuka stand konsultasi dan promosi kegiatan. Saya curi-curi pandang, baca-baca buku kecil yang menjelaskan 10 gejala demensia. Saya bolak balik tuh buku kecil, semakin dibaca makin membuat saya tergugah dan tertai untuk bergabung dengan AlziNed. Kebetulan saya juga lulusan S1 Psikologi, jadi ada panggilan jiwa untuk mengabdikan sedikit ilmu psikologi saya. Cie sok bijak, Hehehe.
Saya menemui mbak Amalia, menceritakan maksud dan tujuan saya tentang keinginan menjadi relawan di AlziNed. Gaung bersambut, alhamdulillah saya disambut dengan tangan terbuka. Ohya Mbak Amalia inilah penggerak sekaligus ketua lembaga Alzi Ned. Sebagai sesepuh tentu saya harus sungkem dulu pada beliau. Peace mbak.☺.
Akhirnya resmilah saya menjadi relawan di Alzi Ned. Sejak awal tahun 2019 sampai hari ini saya tetap aktif berkegiatan bersama AlziNed. Bulan Oktober tahun lalu bertepatan dengan hari kesehatan mental dunia, saya kebagian tugas memandu senam otak saat ada sosialisasi tentang AlziNed bersama para diaspora di Den Haag. Sebenarnya masih banyak kegiatan-kegiatan AlziNed yang lain. Insya Allah di tulisan berikut nya saya bahas ya. Semoga bermanfaat dan tidak bosan membacanya.
Kalau ada yang kasih kritik dan saran sangat diharapkan, sebagai penyemangat saya untuk tetap semangat menulis. Amin.
Ristiono

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