Summary

Filmed in an observational style, Before We Forget is the interwoven story of two Singaporean families and their year long journey with dementia.

The film tells the story of Joyce Fernandez, a 50-year-old woman caring for her mother Celine, who has had Alzheimer’s Disease for 7 years. Even as Joyce Fernandez devotes her life to care for her mother, Celine, who suffers from Alzheimerʼs Disease, she fights her fears with faith when her motherʼs health worsens rapidly. Meanwhile, Dr Irene Giam, who describes herself as an atheist who does not fear death, struggles to restrain her emotions in a relentless march with vascular dementia. Intimate and unflinchingly honest, Before We Forget is a film of two women with dementia who live in an Asian society where terminal illnesses and dying remain taboo.

About Jeremy Boo Lee Xian Jie

Jeremy Boo, 22, and Lee Xian Jie, 21, are humanitarian reporters and documentary filmmakers. They are Ngee Ann Polytechnicʼs Mass Communication graduates and were editors for the student newspaper and online lifestyle magazine. They have photographed and written stories about the Burmese community in Singapore, arsenic-contaminated waters in Cambodia, slums in Manila, among others. Their work have been published by The Straits Times Saturday Special Report and Readerʼs Digest Asia.

In 2010, The International Committee of the Red Cross (ICRC) selected Jeremy as a winner of the ICRC Young Reporter Competition, and flew him to Georgia to report on the decadelong conflict.

Jeremy and Xian Jie run Hachisu, a communication and production house that makes issues more human with good writing and design. In this way, they create conversations people remember and love.

Director’s Statement

We embarked on this project for two reasons. The first is that we believe that neurological disorders will be the cancer of our generation. While we have treatments for cancer today, we do not have any effective treatments for neurodegenerative diseases, which are chronic and terminal. To exacerbate matters, these disorders will only rise with an ageing population.

The second reason stems from Jeremyʼs personal experience of taking care of his mother who has Amyotrophic Lateral Sclerosis (A Motor Neurone Disease; ALS is also known as Lou Gehrigʼs Disease). Caregiving, he slowly realised, is not a one- dimensional affair. While he expected sorrow and grief, he was not prepared for anger, guilt, denial, and physical, mental, and emotional exhaustion. These emotions run in a circle, drawing in tighter and tighter, feeding off each other. Neurodegenerative diseases do not affect just the person with it, but also the loved ones of that person.

When we were looking for subjects for this story, we realised that many are not willing to come forward because of the stigma of mental illnesses (even though dementia is not a mental illness) and end-of-life issues. Out of about 20 potential subjects, only two families welcomed us into their private life. This stigma makes it more difficult for people to learn more about dementia and stifles conversation about end-of-life issues. Consequently, we hear of stories of people with dementia locked at home because their children do not understand why

their parents are wandering outside; people with dementia who have to be restrained to their beds because they keep pulling out feeding tubes that were inserted, even though there is no evidence that feeding tubes necessarily improve quality of life; people with dementia who are sedated and intubated, alive only because of machines that pump blood, and forces air into their lungs.

When we made this documentary, we wanted to observe, for a year, the lives of people with dementia and their caregivers. We merely wanted to tell the stories of these people so that others may understand and empathise with them. We are under no illusion that this documentary will provide a cure or a solution. But we are convinced that this documentary, coupled with www.beforeweforget.org, will foster conversations about dementia and end-of-life issues and it is these conversations that will make the lives of people with dementia and their families more comfortable.

The 48 shooting days produced intimate observational footage that ran close to 100 hours. We kept the documentary as observational as possible, with few titles and no background music or narration. We used only scenes that advanced the storyline and avoided stylistic supplemental footage, which are beautiful but essentially useless.

There is no contrived message, statement, or morale in this documentary. Whatever message or morale stems from the viewerʼs own experiences and we encourage the viewer to share these thoughts and feelings with others. 

About the Lien Foundation

The Lien Foundation is a Singapore philanthropic house noted for its model of radical philanthropy. It invests in innovative solutions, convenes strategic partnerships and catalyses action on social and environmental challenges. The Foundation drives institutional capacity building to address crucial community needs, and empowers individuals to reach their full potential. It seeks to enhance educational opportunities for the disadvantaged, excellence in eldercare and environmental sustainability in water and sanitation.

The Foundation advocates better care of the dying as part of its mission to advance eldercare. It first conceived and spearheaded the Life Before Death initiative in 2006 to create greater public awareness about end-of-life issues in Singapore. Since then, the Foundation has continued its drive to highlight the urgent need for improved care for the dying. It also sought to de-stigmatise death and dying by spurring ʻdie-loguesʼ amongst the public. In 2010, the Foundation commissioned the Economist Intelligence Unit to conduct the first-ever global Quality of Death index ranking 40 countries on their provision of end-of-life care.