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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

Thoughts on being at home with someone with dementia

By: Eva S. van der Ploeg

Whilst some countries are slowly thinking about opening up society, other countries are still very much in the heart of the storm. It still seems relevant to write about the pandemic, social isolation and social distancing. For this month, I’d like to focus on living at home with someone with dementia during this time. There is so much to say about this, but I’ll try to limit myself to some general thoughts. Everyone’s story is different and by now, many of you will have established new routines.

A most pressing issue seems to be that people with dementia do not remember the new situation. Hence, they may display ‘dangerous’ behaviours, such as walking out, unprotected, forgetting to wash their hands, wear a mask, keep distance. This of course causes significant stress for the family carer, who is trying to keep them safe. The standard line is ‘I keep explaning to him, but he just does not remember (the next day or an hour later)’. And additional consequences may be that the person with dementia becomes aggressive towards the person who prevents them from going out.

I think an important first step to make, is to put yourselves into the shoes of the person with dementia. Imagine that you wake up to a world were everything is different from yesterday. People are wearing masks. The streets look empty. Shops are closed, some may be empty. For some elderly this may have negative associations with times when the world looked the same. And when you are just about to go about your normal business, your partner blocks the door telling you that you cannot go out. You do not understand the news. You do not understand what your partner is telling you about a so-called pandemic that changed the world overnight. You just know that even though the world looks kind of the same (blue skies, singing birds), you have to stay indoors with virtually no visitors. It is not a long stretch to even understand an aggressive response towards the person who’s word you have to take for it that these are the new rules, no exceptions granted.

Now from here, there are two options: finding a way to relay the information or distracting the person with dementia from what’s is going on. Now to share the information, we may need to use a ‘Cognitive Ramp’ (Original Montessori for Dementia – dr Cameron Camp). Instead of repeatedly trying to provide the information in the hope that it will be processed, stored, remembered, use an external ‘brain’ to make the information accesible. With this, I mean a ‘Memory Book’: a simple notebook in which you record together with the person with dementia what is going on. ‘Together’ is key in this sentence. I would suggest the following steps:

  1. first of all ask the person with dementia what they think is going on? In this way you will know what is on their minds. Do they think it is war-time? Do they hold a grudge towards you for limiting their freedom?
  2. Address these concerns one by one.
  3. Find a way, using pictures or animation, to explain what is going on. Make sure that they understand every step. There may be online resources available to assist you, for example there are illustrated books for children that may be helpful, but please target your family member as they like.
  4. Talk through this information. Double check.
  5. Now record this information in the Memory Book using words, images etc. that the person with dementia understands. Even better: use their words. Let them tell the story back at you. If they can write it down themselves, this is great. If not, please let them sign their name at the end of each page that you have written. Tomorrow, they may not remember making this book with you, but seeing their own handwriting and signature is undeniable proof that you have worked on this together.
  6. You can choose to keep a diary together on the consecutive pages. You could record news, events of the day, activities. Anything of interest for the person with dementia. Again when they sign off, it is proof tomorrow of their participation in this project.

The other option is to distract the person from all the things they are not allowed to do. Basically, this means finding meaningful activities to get through the day. I am sure, many of you living with a person with dementia have established some routine during this time. If it works, it is great. If you like some fresh ideas consider this:

-everything is an activity (from preparing, to doing, to cleaning up);

-make the person part of your activities – it will be slower, but if they are engaged (instead of displaying ‘behaviours’) and you still get things done, this is probably a win;

-break their tasks in small steps – so do not ask to do a complicated sequence of steps, but choose one step in a process that will be their job. Let them repeat this step. When completed, they move on to the next step.

For example, think about making a cake together. A first step is: giving all ingredients to the person for them to move together in the kitchen; let them open every package; let them measure all ingredients and pour those in bowls; let them stir or mix; pour the mixture in the oven dish, etc. Be aware of all the small jobs that make a big job. Explain, demonstrate, let them repeat, until understood. The first time, this will be a lengthy, slow process, but if you repeat the activity again and againg giving them the same jobs to do. It will become more routine.

Other jobs may be: setting the table (design templates together of what goes where), cleaning together, drying dishes etc. It is infinite really and they smaller you think, the more you realise there are little jobs everywhere. I know I make it sound easy, whereas it is not always easy. Not at all. I just want to invite you to remain creative and resourceful when you can. And to accept yourself, if today you cannot.

 

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.


Bahasa Indonesia:

Berdiam di Rumah bersama Orang Dengan Demensia

Ditulis oleh Eva S. van der Ploeg

Ketika beberapa negara berencana untuk membuka kembali kehidupan masyarakat seperti semula, ada pula beberapa negara yang masih berada dalam keadaan darurat akibat pandemi virus COVID-19. Sepertinya relevan apabila saya menulis mengenai pandemi ini, isolasi sosial, dan social distancing. Untuk bulan ini, saya akan fokus mengenai hidup di rumah bersama Orang Dengan Demensia (ODD) dalam situasi seperti ini. Cerita masing-masing orang pastinya berbeda dan tentunya banyak dari Anda yang sekarang telah mempunyai rutinitas sehari-hari yang berbeda dari sebelumnya.

Satu hal yang paling penting untuk dibahas adalah bahwa ODD tidak mempunyai kemampuan untuk mengingat hal-hal baru. Oleh karena itu, mereka dapat melakukan tindakan-tindakan yang “berbahaya”, seperti berjalan ke luar rumah tanpa ditemani oleh orang lain, lupa untuk mencuci tangan mereka, mengenakan masker, menjaga jarak, dan lain sebagainya. Ini tentunya dapat menimbulkan stres bagi keluarga ODD tersebut yang berusaha untuk menjaga keluarga mereka untuk tetap aman. Kalimat yang sering mereka ucapkan adalah, “Saya telah menjelaskan kepadanya berulang kali, namun dia tetap tidak bisa mengingat penjelasan yang telah saya berikan (keesokan harinya atau satu jam kemudian.” Akibat lain yang mungkin terjadi adalah ODD tersebut menjadi agresif terhadap orang-orang yang berusaha untuk mencegahnya keluar rumah.

Saya pikir hal pertama yang harus Anda lakukan adalah memposisikan diri Anda sebagai ODD. Coba bayangkan di pagi hari, Anda bangun ke dalam sebuah dunia yang berbeda dari hari sebelumnya: orang-orang memakai masker, jalanan terlihat sepi, toko-toko ditutup, dan beberapa bahkan benar-benar kosong. Untuk beberapa orang tua, hal-hal ini dapat membuat mereka mempunyai pandangan yang negatif terhadap masa di mana dunia terlihat seperti biasanya. Kemudian, ketika Anda bergegas untuk keluar rumah untuk menjalankan rutinitas sehari-hari, keluarga Anda menutup pintu dan mengatakan kepada Anda bahwa Anda tidak boleh keluar rumah. Anda tidak memahami apa yang diberitakan. Anda tidak memahami apa yang dijelaskan oleh keluarga Anda terkait dengan pandemi yang telah mengubah dunia dalam waktu semalam. Anda hanya tahu bahwa meskipun dunia terlihat sama seperti biasanya (langit biru, burung-burung bernyanyi), Anda harus tetap berdiam di dalam rumah tanpa adanya tamu yang berkunjung. Dengan berpikir seperti ini, tidak akan sulit untuk memahami sikap agresif yang ditunjukkan oleh ODD kepada orang-orang yang mengharuskan mereka untuk mematuhi aturan baru ini tanpa terkecuali.

Oleh karena itu, ada dua pilihan yang bisa Anda lakukan: menemukan cara yang tepat untuk menyampaikan informasi terkait pandemi kepada ODD atau mengalihkan perhatian mereka dari apa yang sebenarnya terjadi. Dalam hal penyampaian informasi, kita sepertinya membutuhkan sebuah “Cognitive Ramp” (Original Montessori for Dementia – dr. Cameron Camp). Daripada kita menyampaikan informasi secara berulang-ulang dan berharap agar informasi tersebut dapat diproses, disimpan, dan diingat oleh ODD, kita menggunakan ‘otak’ eksternal untuk mempermudah mereka dalam mengakses informasi tersebut. Salah satu caranya adalah dengan menggunakan sebuah “Memory Book” (Buku Memori), yakni sebuah buku catatan sederhana yang mana Anda bersama dengan ODD dapat menyimpan segala macam informasi di dalamnya. Kebersamaan adalah kunci dari cara ini. Saya menyarankan beberapa tahapan berikut:

  1. Ajukan pertanyaan kepada ODD mengenai apa yang menurut mereka sedang terjadi pada saat ini. Dengan cara ini, Anda akan mengetahui apa yang ada di dalam pikiran mereka. Apakah mereka berpikir bahwa kita sedang berada dalam masa perang? Apakah mereka menyimpan dendam terhadap Anda karena membatasi kebebasan mereka?
  2. Tanggapi setiap hal yang mereka pikirkan satu per satu.
  3. Temukan sebuah cara, bisa dengan menggunakan gambar atau animasi, untuk menjelaskan mengenai apa yang sedang terjadi. Pastikan mereka memahami penjelasan Anda secara keseluruhan. Terdapat alat-alat daring yang dapat membantu Anda, seperti buku bergambar bagi anak-anak. Mohon tetap menyesuaikan alat-alat bantu tersebut dengan sifat dan karakteristik dari ODD tersebut.
  4. Setelah menjelaskan informasi tersebut, pastikan kembali bahwa informasi yang disampaikan adalah benar dan dapat dipahami oleh ODD.
  5. Simpan informasi ini di dalam Buku Memori menggunakan kata-kata, gambar, atau metode lainnya yang dapat dipahami oleh ODD. Lebih baik apabila ODD tersebut dapat menulis sendiri menggunakan kata-katanya. Biarkan mereka menjelaskan kembali informasi yang telah Anda berikan. Apabila mereka dapat menulis sendiri informasi tersebut, sangat baik. Apabila tidak, mintalah mereka untuk menandatangani atas nama mereka setiap halaman yang telah Anda tulis. Keesokan harinya, mereka mungkin tidak dapat mengingat bahwa mereka telah membuat buku ini bersama Anda, tetapi adanya tulisan mereka sendiri dan tanda tangan mereka di dalam buku tersebut adalah bukti yang tidak terbantahkan bahwa Anda dan mereka telah membuat buku itu secara bersama-sama.
  6. Anda kemudian dapat membuat catatan harian di halaman-halaman selanjutnya. Anda dapat menyimpan berita, peristiwa dalam suatu hari, kegiatan, atau apapun yang menarik bagi ODD. Tanda tangan mereka akan kembali menjadi bukti partisipasi mereka dalam kegiatan ini untuk keesokan harinya.

Pilihan lain yang dapat Anda lakukan adalah mengalihkan perhatian ODD dari hal-hal yang tidak boleh mereka lakukan. Sederhananya adalah mencari aktivitas yang dapat dilakukan pada hari itu. Saya yakin bahwa banyak dari Anda yang hidup bersama dengan ODD telah menemukan rutinitas sehari-hari yang dilakukan dalam masa ini. Apabila rutinitas itu berhasil, sangat baik. Apabila Anda membutuhkan ide-ide baru, coba pertimbangkan hal-hal berikut:

  1. Kegiatan apapun adalah sebuah aktivitas, mulai dari menyiapkan, melaksanakan, sampai membereskan.
  2. Jadikanlah ODD sebagai bagian dari aktivitas Anda. Aktivitas tersebut akan menjadi lebih lambat, namun selama mereka melakukan aktivitas tersebut ketimbang menunjukkan “kebiasaan-kebiasaan” tertentu, hal tersebut dapat menjadi satu poin kemenangan untuk Anda.
  3. Susunlah aktivitas mereka menjadi langkah-langkah kecil. Jangan meminta mereka untuk langsung melakukan serangkaian langkah yang sulit, namun tentukan satu langkah dari rangkaian tersebut yang dapat mereka lakukan, kemudian biarkan mereka mengulangi langkah ini. Setelah mereka selesai, mereka dapat masuk ke langkah selanjutnya.
  4. Contohnya adalah ketika membuat kue bersama. Langkah pertama adalah memberikan semua bahan kepada ODD untuk dipersiapkan di dapur; biarkan mereka membuka setiap bungkusan atau kotak; biarkan mereka mengukur sendiri bahan-bahan yang digunakan dan memasukkannya ke dalam mangkuk; biarkan mereka mencampuradukkan olahan bahan tersebut, lalu memasukkannya ke dalam oven, dan seterusnya. Perhatikan langkah-langkah kecil yang nantinya akan menjadi langkah yang besar. Jelaskan, berikan contoh, dan biarkan mereka mengulanginya sampai mereka mengerti. Saat pertama kali, proses ini akan memakan waktu yang lama, namun apabila Anda mengulangi aktivitas yang sama dan memberikan mereka tugas-tugas yang sama, hal ini akan menjadi rutinitas yang baru.

Aktivitas lain yang dapat dilakukan dapat berupa mempersiapkan meja (menentukan di mana barang-barang tertentu diletakkan), melakukan bersih-bersih rumah bersama, mengeringkan alat makan, dan sebagainya. Sebenarnya apa yang bisa Anda lakukan tidaklah terbatas dan semakin kecil yang Anda pikirkan, semakin banyak Anda menyadari aktivitas-aktivitas kecil yang dapat dilakukan. Saya menyadari bahwa saya membuat seluruh proses ini terlihat mudah, padahal tidak selalu demikian. Bukan begitu maksud saya. Saya hanya ingin mengajak Anda untuk tetap kreatif dan tidak kehilangan akal selagi Anda bisa. Saya juga ingin mengajak Anda untuk menerima diri Anda sendiri, seandainya hari ini Anda tidak dapat berpikir demikian.

Dr. Eva van der Ploeg memiliki gelar PhD di Kesehatan Masyarakat (Public Health) dari Erasmus Medical Centre di Rotterdam. Dia telah bekerja dan tinggal di Amerika Serikat, Belanda, dan Australia. Beliau sekarang berdomisili di Indonesia. Dia bekerja di dunia internasional sebagai peneliti, konsultan dan pelatih “Original Montessori for Dementia” dengan tujuan untuk mengembangkan hidup ODD dan mereka yang merawatnya. Dia juga memiliki spesialisasi dalam bidang “Mindfulness” dan baru saja mendirikan perusahaannya, Soulful Brain.

Sumber:

Eva S. van der Ploeg, “Thoughts on being at home with someone with dementia,” https://alzined.org/2020/05/12/thoughts-on-being-at-home-with-someone-with-dementia/, diakses pada tanggal 20 Mei 2020.

Translated by Stanislaus Demokrasi Sandyawan

 

Blazing Melodies of Hope in a Corona Induced Darkness

It has been several months since the world first suffered from the devastating effects of the coronavirus, the deadly pandemic leaving behind great misery and suffering in its wake. Not a single soul is exempt from it’s deathly grasp. It is in these times of need that the importance of unity and solidarity becomes much more apparent, for how else could we prevail over this immense invisible force if not together?

It is ironic that during this time when human connection is needed most, we are all forced to remain self-isolating within the boundaries of our own homes. But it is also during these difficult times when we discover the true extent of our likeness; the bonds we are able to form without any use of physical contact. One medium that has already connected millions of people all around the globe is music, the world’s greatest universal language.

Music has played an essential part in the lives of humans for centuries. Especially now, when technology has enabled us to simultaneously listen to the same tunes across continents, the enormity of its influence over us truly is astonishing. There have already been multiple occurences during this pandemic where music has been used to rally hearts and bring people together. In Italy, where neighbours first  banded together on their balconies to sing hymns of independence, joy, and togetherness, sparking a large number of ‘balcony-gatherings’ all over Europe and the United States. In the halls of an empty Cathedral, where Andrea Bocelli’s angelic renditions amassed immense awe from online viewers both young and old. In social media platforms, where artists sing songs of hope to spread comfort and express their gratitude for the thousands of healthcare and frontline workers who risk their lives for us everyday. In the confinements of our own homes, where we sing along and dance to the same rhythms that echo through  the hearts of our brother and sisters wherever they may be.

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In the spirit of all this, we at Stichting Alzheimer Indonesia Nederland organised our second online session last Saturday. The session was an intergenerational sing-along held through Zoom, with the exceptional Eve Trio from Jakarta providing the music to a number of songs from a long playlist of notorious throwback pieces. The success of this event is another testament to the extent of music’s influence, with 24 participants consisting of the elderly, the Stichting Alzheimer Indonesia Nederland community, volunteers, and millenials from Indonesia, the Netherlands and Switzerland all singing their hearts out to the wonderful arrangements available courtesy of the band. The Risk Reduction and Meaningful Engagement event was intended to help caregivers, people living with dementia, the elderly and their families bond over the nostalgic tunes and relax during this otherwise straining period. The intergenerational gap, with the youngest participant being 14 years old and the oldest 90, did not hinder the enjoyment of all those who participated. For music truly does have the ability to make us forget our differences, and instead remember the strength of the ties that bind us together.

 

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Sabina KZ, 14 years old
MYP5 International School of Groningen

How mindfulness can help in times of COVID

 

By: Eva van der Ploeg

How much has changed globally in the past month? Mid-March, I wrote a blog about Mindfulness and how it may help when caring for a person with dementia. Barely four weeks later, the editor and I feel we can only write about COVID. It is not specific to people with dementia and those living or caring for them. What I am going to write may be helpful to other people too. I will try to add something to the (social) media stream that we are all exposed to and I’ll definitely end on a positive note!

 

This is my attempt to look at the current situation from a mindful perspective. What small changes can we make to assist ourselves to be ok. And everything starts with accepting all of it just as it is: COVID, the overwhelming and negative media coverage, the horrible stories and strong opinions on social media, your response to it all.

 

COVID is a magnifying glass

Mind you, I am not saying, you should ignore or trivialize any of this. We live in unprecedented times. Nothing is the same as one month ago. We have no idea what tomorrow brings, let alone next week, month, year. Everything feels uncertain and it is. Being at home, with too little or too many activities, too little or too many people, will amplify this feeling of insecurity.

 

But look at the previous paragraph closely; is any of the things I say new? Or is it a magnified version of ‘normal’ life? Are realities revealed that we are normally good at covering up? We never really know what tomorrow brings, but there is a general assumption that it will be similar to today. Unless it is Friday and it is the weekend tomorrow! But we still think we know what we will be doing, namely what is in our diary.

 

Terror Management Theory (Greenberg, Solomon & Pyszczynski) describes how people have created a way of thinking and behaving that is aimed at (subconsciously) suppressing the knowledge that we will die. The authors stipulate that this knowledge produces feelings of terror (intense fear) “and the terror is then managed by embracing cultural beliefs, or symbolic systems that act to counter biological reality with more durable forms of meaning and value”. COVID has shattered our Terror Management. See Figure 1. for a list of things that you may have experienced as a consequence and that are completely normal!

 

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Try not to overrate your judgments, opinions, thoughts

So now that we have established that our responses, feelings, thoughts, behaviors are nothing out of the ordinary considering this novel, daunting situation, let’s look at what we can do! Here, I will refer to Mindfulness (Kabat-Zinn). Remember the core of Mindfulness is aware-nessing or observing? Especially when strong emotions occur and we experience a tsunami of negative opinions and stories, it is hard not to get caught up in our judgments and thoughts (and emotions, but I’ll address those later).

It may help to evaluate your opinions and thoughts for what they are: opinions and thoughts. They are not necessarily true and they are definitely not you. They are part of you. They do not need to be covered up, but they should also not be allowed to take over. An honest response to the current situation would, for example, be: ‘I am terribly upset by what is happening and I am afraid of what the future might bring, but I do not know what the future will bring and even now good and bad things are happening in the world’. And the accurate answer to most questions is ‘I don’t know’.

 

Look for other (positive) opinions than your own, google the opposite of what you might fear, always read the positive news stories, about; the people that have recovered; communities that come to life and collectively sing from their balconies; people that connect and deliver groceries to those most at risk; the natural world that seems so keen and so able to recover. Imagine those dolphins in Sardinia, the clear waters of Venice. Observe the animals that come out in your neighborhood. The bluer skies, the starry night. Listen to the newfound silence. Realize there is good and beauty in the world, in people, it was always there and it will always be. And know that whatever you feel has meaning and can contribute to preserving the positives that are revealed.

 

It’s ok not to be ok

Regarding what you may feel, we are used to emotions being labelled positive or negative. Where ‘joy’ is the only positive emotion and all other things you may experience are labeled as ‘bad’ or even ‘wrong’. We tell young boys that they cannot cry in response to falling over, but being scared, startled or in pain after a fall is a natural response and crying is an excellent expression of these feelings.

 

Let’s re-evaluate our emotions: they all have important meaning, especially as a means of communication. Fear tells you that you are in danger or are overwhelmed, once you acknowledge this, you can for example limit your (social) media intake in general and especially when you experience a deep fear. Anger draws a line for others, not necessarily because they are doing something wrong, but also because we feel overstimulated. Many people will experience angry outbursts atm, the message is: ‘It is too much for me!’. Lastly, sadness, often frowned upon as weakness, is the courage to show your vulnerability and ask help from others!

 

See your emotions, opinions and thoughts as they are, communicate honestly about them (‘I am having an off-day’ suffices), but know that you do not have to act on them. Sharing that you feel down, angry, anxious, may well prevent you from lashing out later. And if you do lash out, it’s ok too. You can always reconnect and apologize. This is the time for honesty, kindness and forgiveness! In the first place to yourself!

 

If you have any specific things you’d like to share with or ask me, please contact me through Stichting Alzheimer Indonesia Nederland.

 

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 and a mindfulness practitioner.

 

How mindfulness can help when caring for people with dementia

By: Eva van der Ploeg

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Picture: http://www.yogalifestyles.com

Mindfulness. Did you cringe a little when you saw the word in the title of this blog? I think a lot of people may have. I know I used to, because when I heard about mindfulness fleetingly I understood it to mean ‘having an empty mind’. Now that troubled me, because that seemed like a state of mind that was 1) impossible to achieve, and; 2) did not seem desirably. However, when I looked into it, mindfulness turned out to be something that helps me a lot, both when working with people with dementia as well as in daily life. I’ll give you a brief description of how I see mindfulness and then an example of how we can apply it in our care for people with dementia.

I now see mindfulness as noticing what is going on in your mind. Observing which thoughts, emotions, (action) tendencies pop up and how you react to those in turn. Sometimes there is no filter between our brain and our behavior, especially when strong emotions occur. It almost feels like someone else takes over and acts before we know it. Quite often we regret our actions later, for example when we have a yelled at a young child, because we were terrified that they would hurt themselves. Mindfulness is like putting a filter between our brain and actions. Jon Kabat-Zinn who came up with the idea of mindfulness, uses the word awarenessing. Being aware what is happening, mainly on the inside.

There are 7 Mindfulness Attitudes that can help with putting in the filter. I’ll describe them, using the case that I introduced in my previous blog (Why stories are not enough). To refresh your memory: Eddie was a man in his 80’s, living with dementia in a nursing home. He was renown for ‘disruptive behavior’: moving all the furniture in the living room, with screeching sounds and some verbalizations. He contributed to a restless environment, frequently unsettling his co-inhabitants and sometimes staff and visitors too.

  1. Non-judging

The first attitude we can use is called non-judging. If that sounds like an impossible step, you may start with noticing the judgments that automatically pop into your mind and then realizing that this is an actual judgment and that you do not have to act on it. So that it becomes a choice if you act on this preconception. Please know, that having instant opinions is absolutely normal, even more so it fulfills the essential task of making a quick scan and selection of our environment, for example of good and bad, leave or stay. You may call this another filter and this filter should definitely stay in place. This attitude is more about noticing this immediate judgment and how it influences you. A question to ask is: did my acting on my judgment help me?

Let’s look at Eddie. A typical reaction when he would start pushing furniture around, may be ”Oh my, he is having one of his bad days” or “he is up to no good”. Now you could act on this judgment and feel agitated, behave irritated etc. You can see why this will not help the situation, even though your judgment may be ‘right’. It is not about right and wrong. It is about creating a more peaceful environment for everyone. So how about you ‘park’ your judgment and you go up to Eddie and ask ‘May I ask what you are doing?’. As you may remember, Eddie told us, he was preparing his workplace. With that information in mind: is he displaying bad behavior? Is he intentionally trying to disrupt everyone around him?

  1. Patience

When you have latched onto your judgment, probably your next thought would have been “I want Eddie to stop now”. This may escalate quickly, because we now know, Eddie is on a mission: he has to prepare his workplace before shop opens. Our first patient step was to ask him what he was doing. The next step would be to look for a way that Eddie may continue what he is doing without disrupting his environment. On the longer term, that could mean creating a space that he can actually use as a workplace (or him going to a workplace to help out). On the short term, it may be explaining to others what he is doing or offering him another meaningful activity.

Mind you, do not forget to apply Patience (and all other attitudes) to yourself also. If you are in a hurry, have other people who need your assistance etc., be patient with yourself. You can alert someone else or you may return to the situation later. It all begins with you. We all know that when we are stressed or feel forced, we respond in different ways than we wish.

  1. Beginner’s Mind

This attitude asks that you do not only notice your judgments, but acknowledge all the information and emotions that you have regarding a particular person or situation. To notice this backpack that you carry around and again to stow this away for a moment. Not disregarding it, but saying: hey, it is a new day, let’s start over. With Eddie one might think ‘Here we go again!’ if we have a negative association with his behavior (or him in general). In Social Psychology terms, this may lead to a ‘self-fulfilling prophecy’: how you appraise a situation will influence your response to it and your appraisal may very well come true. You have a negative association with Eddie, you respond to this negativity with more negativity and things spin out of control quickly. Taadaa: Eddy is a very disrupting person!

Now with a Beginner’s Mind, again you would have noticed your negative thoughts and feelings to Eddie’s behavior, but you do not act on them. You ask ‘Why is this happening?’, which brings us back to Attitude 1 where this question was answered by Eddie himself.

  1. Trust

I find this Attitude quite difficult to understand. I am not sure if it is about trusting yourself or something like ‘I trust the universe/ God that all will be good in the end’. For Eddie’s case, I look at it this way, if we forget to be mindful we will get ahead of ourselves adding to our feelings of frustration or panic: “Eddie will trigger everyone else, this is going to be a horror shift”. Immediately the ‘problem’ at hand has become so much bigger, in your head. With the added potential danger of triggering a self-fulfilling prophecy. In this case, we are trusting things to spiral out of control and this may well come true. If we take a big breath and tell ourselves “I can do this, if I take some time (or ask some help)”, something else may transpire.

  1. Non-striving

For me, there is some overlap between the attitudes, but I see non-striving as putting pressure on yourself (to be perfect) or feeling real (or imagined) pressure from others. Again, this will make the ‘problem’ so much bigger and again this is only happening in your mind. Did Eddie’s daughter just walk in? And have you been keen to show her how well Eddie is after your last conversation with her about her concerns? Or are you hoping to get a promotion and is this putting even more pressure on you to be perfect? Or are you a perfectionist in general? Now, when you answer these questions, try to steer away from any judgments that pop in your head. There is nothing wrong with being a perfectionist. It comes in handy in so many situations. But if you feel it is limiting you in this moment, if it is putting too much pressure on you, it is again time to say ‘Perfection, I am parking you for the moment’. I am going to do what I can without burdening myself. So when non-striving, you basically park your own and other people’s expectations, ambitions etc., you just zoom in on the situation on hand.

  1. Acceptance

When Eddie starts playing up, you may find yourself thinking “This is the last thing I needed today – I do not want this to happen”. Resistance! But hey, it is already happening. Anything that may have avoided this from happening (like Eddie having a meaningful place or activity) has unfortunately not been put in place yet. And that is ok. You can work on that in the future. It is what it is.

You may remember that with Eddie, we did a sorting activity looking at photos of motor bikes. He would sit down for this activity, engage, smile. He would not move furniture and create mayhem. Moreover, after 20 minutes he would feel tired and take a nap after the cognitive stimulation. Staff reported that he never played up after these meetings for the rest of the day. Anyone have 20 minutes to spare?

  1. Let it be

For me this attitude is the summary of all of the above. It does not mean a passive(-aggressive) acceptance, but an active choice. This is happening, if I fight with it things will not improve.

From a Mindfulness perspective, I would say: Whatever happens, stop for a moment, notice all the big and small responses in your head and choose what may help you or the situation, never force yourself, ask all the help you may need. Then see what happens and repeat.

 

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.

Belajar tentang Demensia secara Online? Gratis dan Dapat Sertifikat!

Ketertarikan saya untuk belajar tentang demensia secara online berawal saat mendapat informasi dari Mw.  Amalia Fonk-Utomo  (Chairperson Stichting Alzheimer Indonesia Nederland) di Group WA.  Saya mencoba mengunjungi situs pembelajaran online yang diselenggarakan oleh Universitas Tasmania, Australia (https://mooc.utas.edu.au/). Awalnya saya ragu tentang model pembelajaran seperti ini, tapi karena ada rasa penasaran juga, akhirnya saya mencoba untuk mendaftar.   Seperti biasa, jika kita akan bergabung ke suatu situs kita diharuskan mendaftar dengan mengisi form profil biodata dan mencantumkan email serta password. Selanjutnya kita akan menerima email untuk konfirmasi. website utasmania

Saya memilih topik pembelajaran online yang akan segera dimulai yaitu “Understanding Dementia”. Pembelajaran ini gratis dan dilaksanakan dalam 7 minggu. Di situs tersebut disebutkan bahwa peserta diharapkan dapat meluangkan waktu 3 jam per minggu untuk mendapatkan hasil yang maksimal. Topik ini berisi 5 modul, mencakup tentang materi dasar sistem saraf, anatomi dan patologi terkait demensia,  faktor resiko, diagnosa dan penanganan demensia, komunitas yang ramah demensia, serta materi–materi terkait demensia lainnya.

Metode pembelajaran ini didesain secara fleksibel dan mudah, sehingga siapapun bisa dengan mudah menyerap ilmu dan informasi yang disampaikan. Bagi yang tidak mempunyai latar  belakang di bidang kesehatan, mungkin akan merasa asing dengan istilah-istilah medis saat mempelajari materi anatomi dan fisiologi. Namun dengan sedikit konsentrasi, selanjutnya akan terbiasa dan mudah memahami.

Materi berupa video bisa langsung ditonton secara streaming atau juga bisa di-download. Begitu juga materi yang berupa teks bisa kita download untuk dibaca saat senggang. Selain itu kita juga bisa berdiskusi dalam forum yang disediakan dan bertanya kepada pemateri apabila ada hal yang kurang jelas. Ketika jadwal tiap modul dimulai, kita akan mendapat pemberitahuan lewat email. Ketika kita menyelesaikan  satu modul, akan ada quiz singkat sebagai evaluasi dan syarat untuk mengakses modul berikutnya.  Untuk lulus quiz, nilainya minimal 70%. Bagaimana kalau nilai kita kurang dari 70%?  Kita bisa mengulangi menjawab quiz tersebut dan tidak ada batasan berapa kali untuk mengulang.  Dan yang memudahkan lagi, soal quiz berupa pilihan ganda!

Bagaimana kalau kita terlewat satu modul, misalnya pada saat jadwal modul ke-2 kita sibuk dengan urusan lain dan saat kita sempat membuka situs ternyata sudah jadwal modul ke-4? Hal ini pun sempat saya alami. Kita masih mengakses modul yang terlewat dan menyelesaikan kuisnya. Bahkan setelah 7 minggu, kita masih diberi tambahan 3 minggu lagi dalam mengakses topik ini secara online. Setelah menyelesaikan semua materi dan quiz, kita akan mendapat sertifikat.

Contoh sertifikat :

Contoh sertifikat online

Setelah menyelesaikan pembelajaran pertama ini, saya mencoba mencari situs lain yang menyelenggarakan pembelajaran demensia secara online, gratis, dan menyediakan sertifikat. Berikut beberapa link yang sudah pernah saya coba :

Selamat mencoba!

 

dr. Budi Darmawan

Relawan Alzheimer Indonesia Nederland

Coronavirus disease: Let’s Take Action

Recent publication from researchers of the Chinese Center for Disease Control and Prevention has reported the findings of more than 72,000 coronavirus disease (COVID-19) cases in mainland China, which revealed 2.3% case-fatality rate and suggested that older people and those who sick are most at risk although most cases have found to be mild1. This urge us, especially when we are living with or taking care of elderly people, to take the necessary precautions even if coronavirus has not arrived in our community. Herewith some advices based on the World Health Organization (WHO) guidelines:

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What is Coronavirus disease?

Coronavirus disease (COVID-19) is an infectious disease caused by the new (novel) coronavirus (nCov-2019). It was first identified in December 2019 after an outbreak in Wuhan, Hubei Province, China. Within 3 months, COVID-19 outbreaks have been reported in some countries around the world.

What are the symptoms?

  • Most common symptoms are fever, tiredness and dry cough. Others may have aches, runny nose, nasal congestion, sore throat or diarrhea.
  • The symptoms are usually mild and some people can have no symptom even though they are already infected by the virus.
  • People with fever, cough and breathing difficulties should contact their doctor or health provider.
  • 80% of people who have COVID-19 can recover from the disease without needing special treatment.
  • Around 17% may become seriously ill and experience breathing difficulties.

“Older people and people with underlying medical conditions such as high blood pressure, heart problems or diabetes, are more likely to develop serious illness”

How does COVID-19 spread?

  • Mostly, the spread is through contact with respiratory droplets from the nose or mouth of a person with COVID-19. The transmission can occur when people touch objects or surfaces that have been exposed to droplets from a person with COVID-19, then touch their eyes, nose or mouth where there can be the entry point of the virus.
  • Other way can be through air, from a person with COVID-19 who coughs or exhales to people who breathe in the droplets.

The WHO is still investigating the ways of spreading and will continue to share the updated findings.

How to protect yourself and prevent the spread?

  • Wash your hands frequently

Keep your hands clean and hygienic by washing your hands with soap and water frequently or using hand sanitizers. Bring a small bottle of alcohol-based hand rub in your bag if there is a limited access to wash your hands.

  • Wear a mask

If you have a runny nose or are coughing or sneezing, follow good respiratory hygiene (e.g. cover your mouth and nose with tissue when you cough or sneeze), or wear a face mask. Before wearing a mask, don’t forget to wash your hands with soap or use hand-sanitizers. The mask need to cover your nose and mouth completely. Avoid touching the mask while using it and replace the mask with a new one when it’s damp or dirty. Lastly, don’t forget to dispose tissue or used mask properly to a closed bin. Remember: Do not reuse single-use masks!

If you are healthy, you only need to wear a mask if you are taking care of a person with the suspected infection. However, try to maintain at least 1 meter distance between yourself and anyone who is coughing or sneezing to avoid the droplets from their nose or mouth which may contain virus.

  • Stay at home

If COVID-19 starts to spread in the community, people who has mild cough or low-grade fever needs to stay at home, even after taking medications.

  • Travel advice

If you want to travel, find the updated information on areas where COVID-19 is spreading2.

  • Stay informed

Follow advice from your healthcare provider and stay updated with more advice and guidance from WHO3.

Sources:

1 Wu Z, McGoogan JM. Characteristics of and Important Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China: Summary of a Report of 72 314 Cases From the Chinese Center for Disease Control and Prevention. JAMA. Published online February 24, 2020. doi:10.1001/jama.2020.2648

2https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports/

3https://www.who.int/emergencies/diseases/novel-coronavirus-2019

4https://www.kemkes.go.id/article/view/20012900002/Kesiapsiagaan-menghadapi-Infeksi-Novel-Coronavirus.html

 

By:

dr. Tania Setiadi

Science Coordinator Alzheimer Indonesia Nederland

PhD Student – Cognitive Neuroscience Center

Department of Biomedical Sciences of Cells and Systems

University Medical Center Groningen / University of Groningen

 

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