Sarah Dankochik

Home Away From Home: Holistic Design for ALS Patients and their Families

Is it possible to design a temporary sanctuary offering support and a sense of familiarity for family members faced with a paralyzing disease? This design thesis will explore how architecture can create a Home Away from Home for Amyotrophic Lateral Sclerosis (ALS) patients and their families. ALS is a terminal disease which slowly paralyzes the patient, eventually losing their ability to walk, talk, eat, and breathe. This means their world becomes smaller each day; no longer able to participate in family meals, communicate with their loved ones, or move around their home. I experienced this, as ALS not only took parts of my grandfather’s life away, but also took parts of our family’s life away, eventually restricting us to use only parts of their home.

ALS affects each patient differently, although 80% of patients pass two to five years after diagnosis.¹ While this terrible disease is taking your loved one from you, the family is forced to quickly make major decisions; “Do we go through with major surgeries?” and “Do we extensively modify our home to make it more accessible, or do we put it up for sale?” My family decided to renovate my grandparent’s family room into a bedroom and washroom for my grandfather. In the end, he was only able to use this space for two weeks before he passed, and we unfortunately lost a great family space which held many memories. These memories include Christmas day with extended family, and non holidays playing with Grandma and Grandpa.

This thesis will explore what a Home is for an ALS patient, pulling from my own experiences, meeting with other families, and mapping out existing and renovated spaces. Can architecture create a space for ALS patients and their families to experience their last moments together?

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From the research, two Homes, and a support home were designed together. Two Homes grouped together will provide the potential for the families to support each other through the disease. Each Home was designed so that when a family moves in, they have the opportunity to make the Home theirs, this was achieved through built in shelves. Each Home also has areas both for family gathering, and areas to reflect on your emotions in private.  The Accessible Park located adjacent to the Homes will fosters and grow a bound between the existing community and the residents of the Homes which will come and go as the years go on. The existing natural beauty of the site, paired with the thoughtful design of the Homes, creates a space where families can spend their last moments together.


¹“About ALS.” ALS Society of Manitoba, 2014. Accessed September 10, 2019. https://alsmb.ca/about-als/.