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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