The understanding of Dementia Alzheimer improves life quality of ODDs and families

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The book ‘The Journey of Caring’ by DY Suharya and Yuda Turana, supported by multi-discipline professionals, provides practical guidance for caregivers to support and take care of people with Dementia Alzheimer (ODD)

The lack of public understanding about ODD may cause degeneration of life qualities of not only ODDs but also their families. Concerned about this condition, the founder of Alzheimer Indonesia (ALZI), DY Suharya (DY) and Dr. Yuda Turana, a neurologist of Atma Jaya Faculty of Medicine and a counselor in ALZI, released a book titled “The Journey of Caring”, a guidance for ODDs’ caregivers (24/4/2019). The writing process of the book was supported by Ficky Yusrini as the editor and more than 20 multi-discipline professionals.

Dementia Alzheimer affects people’s cognitive ability. Myths, stigma, lack of information, and gradual development of the symptoms often make families frustrated in accepting the condition of ODDs. As a result, many ODDs do not receive appropriate care and support.

“Taking care and living with ODDs need physical and mental strengths and its own art. My family learn this “art” through our 10-year experiences of taking care of my mother who was diagnosed with Vascular Dementia in 2009,” said the writer, DY Suharya. “Through this book, I want to share information about Dementia Alzheimer, including symptoms, treatment, and prevention,” DY further added.

In Indonesia, it is estimated that there are 1.2 million ODDs. Considering its development, it is predicted that the number of ODDs will keep increasing more than 10 times in the next 30 years.

“The degeneration of cognitive ability in ODDs results in cognitive and behavioral changes, including emotion and sensitivity towards many things. Understanding those changes help families take right action and communicate effectively, including setting up suitable environment for ODDs,” said Yuda Turana, a neurologist who specializes in dementia and was also the Head of Neurogeriatric Study Group, Association of Indonesian Neurologist.   

Each chapter in this book provides answers to various questions received by the writers in their interactions with various people, especially family members and caregivers. The information provided is the results of consultations with various experts such as neurologists, geriatric and mental health experts, sports experts, nurses, therapists (physiotherapy, art and music), social workers, and even storytellers. This book also includes experiences from caregivers.

“Dementia Alzheimer can happen to anyone, anytime. This book explains how family members should act towards ODDs,” said Erwin Parengkuan, an Indonesian famous presenter. “When my father-in-law was diagnosed with Dementia Alzheimer, family is the key support in taking care of him well,” added Erwin.

The Journey of Caring was initiated from the wish of DY Suharya to express his respect to his mother, Tien Suhertini Suharya, who passed away on April 21, 2017. Mrs. Tien Suharya showed symptoms of Dementia Alzheimer when DY was still a teenager. All profits gained from the books will be donated to ALZI in its effort to support life quality improvement of ODDs and caregivers in Indonesia.

To know further about ALZI’s activities in your area or to join as volunteers, please visit their website at http://www.alzi.or.id.