Families of dementia patients open up about the never-ending challenges of caregiving.

Growing up, Dewi “DY'' Suharya noticed strange behaviors developing in her mother, Tien. From temperamental attitudes to poor decision-making, the most heart-wrenching symptom arose in 2014, when Tien began forgetting that DY was her daughter, thinking she was a stranger instead.

Though DY did not know it for roughly 20 years, such behaviors were symptoms of dementia, a syndrome that progressively affects critical brain functions. With dire consequences such as memory loss and an inability to control thinking abilities, Tien eventually lost the capability to function independently, until she began requiring a caregiver to assist her with everyday needs.

DY and her 93-year-old father, Yaya Suharya, were Tien’s primary caregivers. Up until her death in 2017, they assisted her with eating, bathing, incontinence and other tasks throughout the day — all while being forgotten.

“There was [an occurrence] when my dad was accompanying my mom to help her bathe, and she said, ‘Don’t touch me; I have a husband,’” DY recalls.

Such anguish was only further augmented by confusion and frustration, given that there were no Indonesian organizations to provide information and training in dealing with dementia patients. As a result, DY established the Jakarta-based Alzheimer’s Indonesia in 2013, an organization dedicated to improving the lives of dementia patients and their caregivers through education and awareness.

“I basically vowed to be really committed to helping other families to not be as confused as I was,” the 50-year-old explained.

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