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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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