Why stories are not enough – the importance of the science

By: Eva van der Ploeg

Introduction Video:

Eddie had become an annoyance not to say a hazard to himself and his environment. Living with Alzheimer’s in a nursing home, staff would recognize his ‘bad days’ when he was standing up more than his usual bent posture. He would create chaos by starting to move around all the furniture in the shared living space, putting chairs on tables using the odd swearing word. In the process, he would agitate his co-habitants (imagine a snowball effect)and consequently the staff. Family members would arrive in a potentially chaotic and unpleasant environment. A depressing story for all those involved.

At the time, we were starting our research project about Original Montessori for Dementia (copyright dr Cameron Camp). We were looking for people who lived in a nursing home, had a diagnosis of a dementia and displayed agitated behaviors. Eddie fitted the profile perfectly. I went to interview staff to find out more, but I came back disheartened questioning if I could do anything for Eddie and somewhat frightened that he would attack me. I spoke to his daughter, and from a misunderstood and daunting disease, Eddie became a person again. A man with an interesting life story, some spunk and a sense of humor.

In the meantime, a colleague who knew Eddie and his family well, approached Eddie during one of his ‘moods’. We had just been schooled in Montessori for Dementia and she immediately applied the teachings by asking Eddie ‘Why are you moving all the furniture?’. ‘Well’, said Eddie, ‘I am preparing my workplace for the day’. Eddie used to be a car- and motor mechanic. Although his behavior looked odd, erratic from the outside, Eddie felt he was doing something useful, something he had done for most his life. And with his straightforward explanation, he communicated that he was looking for a role, activity, meaning in his daily life. He basically told us he was bored.

Taking all this information together, we designed an activity program for Eddie. And it was my pleasure to include Eddie as the first participant in my project and do activities with him. I spend time with Eddie doing so-called Montessori activities, which was a pleasure. Eddie sat down. He made contact with me. He smiled. Most importantly, he did not get up to redesign the living room. He stayed, was calm and we both had a good time. A staff member stopped in her tracks and stared at us. Later she told me she could not believe what she had seen. Before, I started my work, she had told me ‘there was no use’ to work with this man.

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Great success story right? Are your hands itching to try Montessori for Dementia? Did a specific person come to mind? Hold your horses! Here are a couple of questions, and imagine me sitting on the chair of your supervisor, general management, financial manager, policy maker:

  • Was Eddie not just happy to have some company?
  • Who says it works for other people?
  • Who is going to do this intervention? We don’t have time!
  • What does this cost? Why should I invest in this?

Now this is were science can support you. As I mentioned my ‘intervention’ was part of a research project. It was a great opportunity, as we were both helping people who needed it then and there, as well as trying to create scientific evidence to support Montessori for Dementia. We designed a randomized cross-over trial. A what? A trial is a specific, quite precise type of study where your try to control certain factors to help you to be able to give meaning to your results. For example, you choose clear criteria which people can and cannot participate in the trial. As I mentioned before our ‘participants’ had to have a diagnosis of dementia, live in a nursing home and display at least one ‘agitated behavior’.

Cross-over refers to the study conditions. All participants were offered the Montessori visits, but they were also offered what we called a series of normal visits. The frequency and duration of these two types of visits were exactly the same. During Montessori visits, we did Montessori activities especially tailored to the skills and needs of this individual. During normal (or control) visits, we just read a newspaper not tailoring to any skills or needs, so for example reading at normal speed and not focusing on topics that may capture their attention. Now why would we do this? Basically, to be able to answer question 1 (Was Eddie not just happy to have some company?). Control visits represented the added value of the study of having more company (than before). We were studying the added value of Montessori for dementia, not of increased contact. After 4 Montessori visits, I visited Eddie to read the newspaper. And let me tell you, it was not half as pleasant. During my first visit, he was happy to see me, smiled, held my hand and sat down for a while. After that it went downhill, Eddie got bored with this newspaper reading and would get up and start looking for something meaningful to do, which could be ‘preparing his workplace’. We were back to square one.

So in Eddie’s case Montessori visits performed much better than control visits, but I am still only presenting positive results with one individual. Which brings us to question 2 – does it work for other people? This is another characteristic of a trial: you study more than one person. In our case, we studied 40 people. And we tried to have a representative number of men and women in our study group. And every participant was ‘randomised’: they either started with Montessori visits and finished with control visits. Or they started with control visits to then switch to Montessori visits. We do this to make sure that the Montessori visits do not’ infect’ the control visits. The same facilitator would work with a participant for all study visits, so we needed to make sure that the Montessori principles and interests were not carried over into the control visits.

So in a nutshell, we compared people with themselves in how they responded to the two different kind of visits. And within in the group, we tried to make sure that the order of interventions did not impact on the results. It is getting technical now and I will stop here. I just wanted to give you some insight into the process of doing a research project.

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The results? Well, it is a nuanced story. Let me start with the good news and then continue with more good news. Firstly, Montessori activities reduced the time that participants were engaged in those agitated behaviors. By half! But: the control activities had a similar effect. Just keeping people company also led to a large reduction in agitated behaviors. Although it is not supporting the Montessori activities, this is good news too: a simple intervention can help to create a more calm environment. Imagine, volunteers coming to read the newspaper to people at that time of day that they are most agitated and disrupting others! We found further support for Montessori activities: they elicited much more active engagement, interest and positive emotions than the control activities. Meaning: that even though during control activities participants were not agitated, they were not terribly engaged or happy with the activity. So when looking for actively engaged, interested and joyful people the Montessori activities outperform the simple reading of a newspaper. A final interesting finding was, that when people had lost their English language fluency, they benefitted more from the Montessori activities than those who had maintained this ability. So Montessori activities can be helpful to target people who have referred back to their first language, like Indonesian immigrants in the Netherlands might do.

I have not answered questions 3 and 4, simply because we did not study this yet. Our impression was that this requires an investment and when everybody is doing this (staff, volunteers and family members), it will save time and money. Dr Camp is studying this atm, for example if the activities reduce the use of anti-psychotic medication (costly!).

Now, I will repeat my question: will you do this Montessori intervention? I’ll leave that to you. The evidence is mixed, but it is honest. It reveals the plot under the different story lines. You can choose the follow the plot or you can be happy and proud with the success stories. Every happy, peaceful moment for a person living with dementia counts. I would and I do. And I use the evidence (all of it, not only the convenient part) to share the whole story, so everyone can make their own decision about what to do.

 

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.

How To Cope on Natural Disasters with elderly and people with dementia – Tips Menghadapi Bencana Alam Untuk Orang Dengan Demensia dan para Caregivers

(In English & Bahasa Indonesia)

Some tips for people living with dementia and their caregivers.

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For the last couple of weeks, we have heard news about severe floods and landslides in Jakarta and other areas in Indonesia which has caused death of 66 people and displaced thousands of people from their home. This emergency situation not only have significant impacts on everyone’s safety, but it can be especially confusing for people living with dementia and their caregivers.

Here are some tips of how we can minimize the impact of natural disasters:

Be prepared

  • Check weather conditions regularly and be well informed, find information through social media of several trustable resources, such as Indonesia’s National Disaster Management Agency (BNPB) or The Indonesian Red Cross.
  • Prepare an emergency bag, including your essential needs (e.g., medications, important documents, easy-to-change outfits, shoes, recent picture of people living with dementia, ID bracelet / clothing tags, bottled water, dry food like biscuits, oxygen cans and a favorite item of the person living with dementia)
  • Keeping contact numbers of the doctor/ hospital for emergency case, local government authorities (Ketua RT/RW) and Yayasan Alzheimer’s Indonesia might be useful if you need information and need to be evacuated.
  • If you need to evacuate, don’t delay! The sooner the better.
  • Stay calm and focus on your safety and your loved ones.
  • Don’t forget to update your location regularly to your family.

During Evacuation

  • Be aware that changes in routine might cause confusion and anxiety in people with dementia, especially those are in the early stage of Alzheimer’s, and that will increase the risk of wandering and agitation.
  • If needed, inform other people in the shelter, your neighbor, other family members about the diagnosis, so they can help to assist better.
  • Do not leave the people living with dementia alone. They can easily get lost. Put the bracelet ID or tags with name and contact number.
  • Try to remain calm.

 

Tips Menghadapi Bencana Alam Untuk Orang Dengan Demensia dan para Caregivers

 

Sejak beberapa minggu terakhir, kita telah mendengar berita tentang banjir parah dan tanah longsor di Jakarta dan daerah lain di Indonesia yang telah menyebabkan kematian 66 orang dan ribuan orang mengungsi dari rumah mereka. Bahkan korban terbanyak dikabarkan kebanyakan adalah anak-anak dan lansia. Situasi darurat ini tidak hanya berdampak signifikan pada keselamatan orang banyak, tetapi dapat menjadi situasi yang membingungkan bagi orang dengan demensia (ODD) maupun caregivers (baik keluarga maupun pengasuh).

Berikut adalah beberapa tips tentang bagaimana kita dapat meminimalkan dampak bencana alam:

Bersiaplah!

  • Periksa kondisi cuaca secara teratur dan dapatkan informasi lengkap melalui media sosial dan sumber terpercaya seperti akun Badan Nasional Penanggulangan Bencana Indonesia (BNPB) atau Palang Merah Indonesia.
  • Siapkan tas darurat yang berisi kebutuhan penting Anda (misalnya: obat-obatan, dokumen penting, pakaian yang mudah diganti, sepatu, foto terbaru ODD, gelang identitas / label pakaian, botol air minum, makanan kering seperti biskuit, oksigen kaleng dan barang favorit ODD.
  • Simpan nomor kontak dokter / rumah sakit untuk kasus darurat, Ketua RT / RW dan hotline Yayasan Alzheimer Indonesia yang mungkin berguna jika Anda memerlukan informasi dan perlu dievakuasi.
  • Jika Anda perlu mengungsi, jangan menunda! Lebih cepat lebih baik.
  • Tetap tenang dan fokus pada keselamatan Anda dan orang yang Anda cintai.
  • Jangan lupa untuk memberi kabar lokasi terbaru kepada keluarga.

Selama Evakuasi

  • Sadarilah bahwa perubahan pada rutinitas dapat menyebabkan kebingungan dan kecemasan pada ODD, terutama yang berada pada tahap awal Alzheimer’s Disease sehingga akan meningkatkan risiko wandering pada ODD.
  • Jika perlu, beri tahu orang lain di tempat penampungan, tetangga Anda, atau anggota keluarga lainnya tentang diagnosis ODD sehingga mereka dapat membantu untuk menjaga ODD dengan lebih baik.
  • Jangan biarkan ODD sendirian. Dalam suasana baru mereka bisa dengan tersesat dengan mudah. Pakai gelang atau kalung yang berisi nama dan nomor kontak keluarga yang bisa dihubungi.
  • Tetap tenang, jangan panik.

 

Tania Marini Setiadi M.D – Champions Science Support 

Cerita dari Ruang Pusat Komunitas Buurthuiskamer di Zuidhorn, Groningen

Nama saya Imelda Tiekstra-Tatuhey dan saya tinggal di Zuidhorn (propinsi Groningen, Belanda Utara).

Tahun 1951 opa saya (korporaal dari tentara K.N.I.L- Koninklijk Nederlands Indisch Leger) datang ke Belanda dengan kapal laut bersama 12.500 militer-militer dan keluarga mereka dengan berbagai macam kapal. Ayah saya waktu itu berumur 14 tahun.

Saya lahir tahun 1975 di Assen, mempunyai adik perempuan (lahir di tahun 1977) dan adik laki (tahun 1978). Ayah saya meninggal tahun 1989 waktu saya berumur 14 tahun.

Tahun 2002 saya selesai sekolah ‘Pedagogisch Sosial dan tahun 2003 bulan Maret, saya bekerja sebagai pemimpin kelompok untuk anak-anak muda pencari suakaasylum seekers’, dari berbagai negara seperti Afrika dan Afhanistan). Setelah bekerja setahun, separuh dari pekerja dikurangi.

3 November 2004 saya mulai kerja di panti lansia orang-orang tua yg bernama Hunzerheem. Di dalam panti ada 1 ruangan khusus untuk orang-orang tua Indo dan Maluku. Sukarelawan-sularelawan orang-orang Indo dan Maluku di beri nama: SENANG BERSAMA. Saya bekerja sebagai pendamping aktivitas (activiteiten begeleider).

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Untuk penghematan (bezuiniging), pegawai-pagawai dikirim ke panti-panti lain dan diberi kesempatan untuk belajar menjadi perawat.

Tahun 2014 saya di kirim ke Zuidlaren, untuk bekerja di bagian perawatan mental (geestelijke gezondheidszorg) sebagai pendamping aktivitas.

Setelah 3 tahun saya berhenti kerja dan sejak tahun 2018 saya kerja sebagai huishoudelijk medewerkster (pekerja rumah tangga). Dan setiap hari Jumat saya kerja sukarela di buurthuiskamer Pand10A di Zuidhorn, dimana saya mengatur aktivitas-aktivitas untuk soos Indonesia yg bernama ‘Mari masuk’. Disana diadakan kegiatan berlatar belakang Indonesia dari jam 10 pagi sampai jam 12 siang.

Siapa saja bisa datang mampir, minum kopi/teh dan makan kue2 bersama, ngobrol-ngobrol. Sekali-kali diadakan kegiatan-kegoatan seperti: workshop obat-obat tradisional, cerita tentang bermacam-macam jenis kain ikat. Saya suka putar lagu-lagu Indonesia, tamu-tamu bisa bermain congklak/dakon. Sekali-kali tamu membawa album foto tempo dulu dan bercerita tentang album itu dan ada yang membawa alat/ bahan dari Indonesia waktu jaman dulu.

E. Impressie mari masukL5. Deelnemers workshop lemet maken

Pada bulan Juni 2019 kami mengadakan ‘Pasar Ketjil’. Cuacanya sangat bagus.           Banyak stand yang berjualan seperti sate, jajanan Indonesia, barang-barang dari Indonesia, cendol, rujak, pertunjukan tarian dari Bali dan Sumatera. Dan juga Alzheimer Indonesia-Belanda hadir untuk memberikan informasi tentang kegiatan mereka.

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Untuk anak-anak juga terdapat kegiatan: membuat topeng workshop angklung. Dan dua band yang saling berganti bermain. Bingo juga dilakukan secara spontan. Jurnalis dari koran datang pada hari itu meliput membuat acara Pasar Ketjil menjadi sukses dan banyak yang bertanya kapan akan diadakan kembali.

Dua bulan sekali saya masak makanan Indonesia. Yang berminat bisa mendaftarkan namanya di buku yang terletak di atas meja buurthuiskamer, atau hubungi saya (telpon/ email). Maksimal 12 orang dengan biaya €7.50.

M4M2- De ongenode gast Tim van StreekkrantL. Workshop lemet makenH. Indonesische maaltijd-gado2J1. Gezelligheid

Banyak sekali kegiatan yang kami laksanakan secara regular misalnya tanggal 18 Maret 2020 kami akan adakan workshop ‘Putar Ketupat’ di buat dari pita. Siapa yang berminat bisa daftar hanya dengan €6 sudah termasuk kopi/teh dan bahan. Untuk melihat berbagai macam kegiatan kami, bisa cek ke website: www.buurthuiskamerzuidhorn.nl

Kalau ada waktu, datang mampir ‘Mari Masuk’.

Sampai Jumpa!

Salam dari Imel.

 

Cerita Pak Indra dan Bu Tosri, sebagai angkatan pertama perawat Indonesia ke Belanda di tahun 90 an.

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Pada hari Sabtu 21 Desember 2019. Alzi Ned berkesempatan bersilaturahmi ke Pak Indra Tosri dan Bu Evi Helvia Hidayat. Beliau berdua sudah menjadi perawat lansia selama 27 tahun (14 tahun di Delft dan 13 tahun di Nijmegen). Beliau berdua berbagi pengalaman dan menjelaskan tentang sistem perawatan untuk pasien demensia Alzheimer di Belanda. Kami juga mensosialisasikan tentang kegiatan Stichting Alzi Ned. Tak lupa kami membagikan brosur tentang 10 gejala demensia Alzheimer

Sedikit cerita yang bisa kami petik dari obrolan kami adalah:
Di tahun 90an perawatan lansia dengan penyakit penyulit semua dilakukan di RS, salah satu pusatnya ada di Delft. Masing- masing bangsal ruangan berisi 6 orang. Asrama perawat ada di samping RS.

-Sejak tahun 2000an diganti dengan gedung-gedung perawatan yang lebih kecil merawat sekitar 8-10 orang dan perawatan homecare mulai digalakkan.

-Gedung perawatan merupakan milik swasta. Biaya perawatan ditanggung oleh asuransi, pemerintah dan mandiri dengan presentase yg berbeda-beda tergantung perhitungan penghasilan keluarga. Namun perawatan yg diberikan sama.

-Untuk lansia diberikan grade untuk penyakit penyulitnya (grade 10 untuk penyakit stadium akhir).

-Beberapa pusat lansia di Belanda menerapkan sistem terdiri beberapa gedung dengan bentuk melingkar dan diantaranya ada gedung untuk pasien dengan masing-masing penyulit.

-Perawatan diusahakan semanusiawi mungkin. Pasien-pasien masih banyak menyangkal kalo dirinya mengalami demensia.

-Berbagai fasilitas disediakan untuk pasien disesuaikan dengan latar belakangnya, semisal aktivitas sepeda-fix dengan layar lokasi pemandangan, area berkebun, kesempatan menjadi komite (untuk yang berlatar belakang pejabat/pengurus organisasi) dan sebagainya.

-Untuk pasien-pasien yang tetap menyangkal hidup dengan demensia dan tidak mau didampingi, maka ada perawat yang ditugasi mengawasi dari jauh.

Pak Indra dan Bu Evi merupakan angkatan pertama pengiriman tenaga perawat lansia ke Belanda. Program tersebut dihapus karena larangan untuk mengambil perawat dari luar Uni Eropa. Namun tahun ini sudah dimulai lagi pilot project untuk pengiriman kembali tenaga perawat dari Indonesia.

 

Salam Jangan Maklum Dengan Pikun!

 

dr. Budi Darmawan

Ristiono, S.Psi, CH., CHt., NNLP

Alzheimer Indonesia Nederland

Alzheimer Indonesia – Lombok Mengenalkan Demensia Alzheimer Pada Masyarakat Desa Taman Ayu

Minggu, 22 Desember 2019.

Bertempat di Kecamatan Gerung, Desa Taman Ayu diadakan kegiatan yang bertema “Festival Budaya Seribu Rengginang, Bersama Karang Taruna Semaiq Waye”. Kegiatan merupakan acara yang digagas oleh Kepala Desa Taman Ayu bersama Karang Taruna Semaiq Waye.

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Pada kegiatan “Festival Budaya Seribu Rengginang, Bersama Karang Taruna Semaiq Waye” di desa taman Ayu, Alzi Lombok dengan 11 relawan membuka stand sekaligus melakukan sosialisasi kepada masyarakat Desa Taman Ayu. Sosialisasi ini dilakukan utk mengenalkan demensia alzheimer kepada masyarakat Desa Taman Ayu yg hadir dalam kegiatan festival budaya seribu rengginang. Selain itu Alzi Lombok juga memberikan informasi seputar gejala umum demensia alzheimer dan bagaimana cara pengurangan resiko demensia alzheimer.

Kegiatan sosialisasi ini dilakukan untuk menambah pengetahuan masyarakat Desa Taman Ayu tentang demensia alzheimer. Di Desa Taman Ayu sendiri demensia alzheimer memang sangat jarang didengar oleh masyarakat, oleh sebab itu demensia alzheimer sangat harus untuk disosialisasikan. Tidak sedikit masyarakat desa taman ayu yg berkunjung menuju stand alzi lombok. Terlihat dalam kegiatan ini antusias dan keingin tahuan masyakarat Desa Taman Ayu sangat besar untuk demensia alzheimer.

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Ibu Maisah, salah satu masyarakat Desa Taman Ayu mengungkapkan bahwa “kegiatan sosialisasi demensia alzheimer ini sangat bermanfaat utk masyarakat Desa Taman Ayu secara umum, dan utk dirinya secara khusus. Besar harapan kegiatan ini dapat dilakukan lagi secara rutin dan berkelanjutan di Desa Taman Ayu dan di desa-desa lainnya lagi”.

Harapan yg sama juga dimiliki oleh teman-teman Alzi Lombok, semoga kita semua selalu bermanfaat untuk masyarakat

Salam Jangan Maklum Dengan Pikun!

Tim Alzi Lombok

Behavioral Changes in People Living With Dementia Some suggestions for the caregivers

Changes in personality and behavior are common in people living with dementia, even at the early stage of the disease. When your loved one started to be more anxious, aggressive, sad without any reason, or just sit on the couch for hours without doing anything, sometimes it can be overwhelming for you as their caregivers.

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It is always useful to rule out any physical problem that might cause changes in behavior, such as constipation, pain, fever, infection, etc. If you are not sure, you can check it out with their doctor. Caregivers meeting can also be a great place for caregivers to exchange experience with other caregivers and discuss how they deal with their loved ones.

Here are some tips how to handle this situation:

  1. Try to keep a daily routine. People with dementia often hardly cope with unplanned activities, they need to know what to expect.
  2. Try to reason the situation with your loved one often only create more frustration. So, don’t.
  3. You can offer new activity to your loved one, whether they want to play music, sing, listen to old records, making some crafts, or gardening. Yes, distractions sometimes work!
  4. Caregivers can feel tired too. If you feel overwhelmed, it’s okay, just take fresh air for a few minutes then come back and start over.
  5. Try to laugh about it! Laugh is always the best medicine, for your loved one and also for you!
  6. Do not complicate things. Keep everything simple.

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If the behavior persists or getting worse after you have tried all of this (especially when their behavior might harm themselves or other people), then it’s time to consult with their doctor again whether your loved one need special medication or need to consider assisted living options.

Tania Setiadi

Stichting Alzheimer Indonesia Nederland

29 November 2019

 

Caregiving and volunteering, inspired by my dementia parents.


💜Salam Ungu💜

Hope Love Care Seminar in Malang, October 2018

Exactly one month ago, my precious adventure as a Volunteer for the @ Stichting Alzheimer Indonesia Nederland has brought me to another level of understanding and concerning about what we call Alzheimer. As a Speaker at that time for more than 700 people , Presenting a presentation about Caregivers and presentation with the Dutch Team about The Dutch’s Point of views of Alzheimer that can be implemented in Indonesia has opened more feeling for me to help more people in giving information about this disease.

Sharing my knowledge in The Netherlands for my home country Indonesia

So , that is what I do even tho I have so little time in between my “crazy life” but I tried always in any time I have I manage to share the information. And one of wonderful feeling I got is when they came to ask me without I ask. It gave me a sense of meaningful life , that I am useful to spread the words. My house is always open for people that eager want to know more about Alzheimer and also how to manage our self in order to stay in our sanity while taking care of our family member with Alzheimer.

My lovely parents

Some of the pictures you see are the pictures where I gave information to some groups of women in Indonesia thru WA ( long live technology😊) and got helped from my sister in law, my aunty and my niece. Their enthusiasm in want to know more about this disease were really made my days even tho I am a thousands miles away from them.

Community Sharing 10 signs of dementia in Depok, Indonesia

And yet, even tho it saddened me with what happened with my parents but in the end I see a blessing more in my life how it leads my life to be more colourful and grateful and most of all I gain more lovely friends and wonderful networks and I received love of what I do with my heart.

My lovely parents whose both have dementia

I hope my story will inspire and motivate more people mostly young generation to be more concern about Alzheimer.

💜Salam Ungu💜

Fitri Gaylani Sabariah.

Her parents both have dementia in Depok, Indonesia and now she is working at Nursing Home Vivaldi in Zoetermeer. 

Visiting Professor in Yogyakarta

Visiting Professor in Yogyakarta

As a visiting professor I yearly visit the Gadjah Mada University (UGM) in Yogyakarta, Indonesia, since 2012. This is my contribution to the Indonesian-Dutch twinning programme. I am involved in teaching nursing and medical students, graduated nurses, staff of the department of neurology Sardjito hospital and in the supervision of PhD students. This year I also was keynote speaker at the third Asian conference in Nursing Education. My research and teaching topics are palliative and cancer care and dementia.

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With excitement I witness the development of dementia care and research in Indonesia. Six years ago I was told that dementia was not a problem in Indonesia. Water was the problem. Now UGM is studying experiences of family caregivers of people with dementia and we are preparing a research proposal on dementia together with Sardjito hospital for the European Joint Programming Neurodegenerative Diseases (JPND) call on healthcare and social care. Last November Alzheimer Indonesia (Alzi) and ADI organised a dementia conference in Jakarta, demonstrating the growing interest in dementia research and practice. This conference stimulated students and lecturers of the UGM School of Nursing to join Alzi Yogyakarta. Alzi and School of Nursing in Yogya initiated during my recent visit an (overbooked) seminar on dementia. A new Alzi activity in Yogyakarta is team home visits. I joined the visiting team. The nature of the problems we met were both medical and social.

A key issue in the Alzi seminar was social health. Social health relates to the influence of social factors on the use of people’s potentials and capacities. In the Q&A of the Alzi seminar we discussed cultural differences between Western and Indonesian attitudes related to social support. While in Western countries autonomy is an important value, in Indonesia people are more embedded in a social structure in which people like to help each other. However, there is a subtle but significant difference between helping as a social act and taking over tasks. For instance taking over the preparation of breakfast while the person is able to prepare breakfast. The letter prevents people from using their capacities

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Visiting Yogyakarta is not only working. In the evening we enjoyed Yogya life, especially. the vibrant Malioboro. It is a daily party with lots of food and music. Many young people are engaged in these activities. Outside life is not so much for older people. It is even hard to cross the road in the chaotic traffic. Since people with dementia are using their voice to tell what they need, not care but traffic is high on their agenda. Improving accessibility to transport enables them to join social life. When Indonesian people with dementia are going to raise their voices, traffic might be a major topic.

 

Prof.Dr. Myrra Vernooij-Dassen

Radboud University Medical Center, Nijmegen, the Netherlands

 

 

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