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Here 4U is an information hub dedicated to educating and relieving family caregivers from daily stress by providing accessible resources.
For this project, I wanted to focus on a personal issue I have been enduring—coping with a mentally ill elder. I experienced many distressing feelings during the summer while I was living with my parents. My grandpa recently passed away after his long battle with cancer rendering him physically disabled. My grandma was recently diagnosed with Lewy body dementia—a very progressive disease that affects her entire self. My Abuelita continues to struggle with physical and mental health. It is hurtful to see at first hand the decline of my elder’s health. The group I worked with were individuals and families who have taken on the role as caregivers to mentally ill elders. I observed Facebook Alzheimer’s, dementia, and memory impairment support and awareness groups that were dedicated to providing caregivers a safe space. These Facebook groups do not talk about miracle cures or false remedies. Rather, the members share their different realities regarding memory impairment. Through support and education, the members find the ability to take another step each day in this rough journey.
The two problems I encountered during my general observations and semi-structured survey were 1) lack of unpreparedness and external resources and 2) feelings of distress. I found both to go hand-in-hand.
Many respondents recorded that they struggled financially and emotionally. Due to the paucity of education, a handful of people felt unqualified to take on the role and also felt rushed into the role. The caregivers did not know what they were getting themselves into. Many struggled to find affordable help. struggled to understand the healthcare system. Additionally, caregivers did not know or what the diagnosis was.“How might we develop a learning tool centered around family caregiving that is accessible and comprehensible to different generations?”
Internal feelings of distress is an inevitable consequence of the lack of resources and knowledge. The feeling of not doing enough or not being the best version of oneself is very prevalent throughout my survey and observations. Caregivers want to provide effective care to their loved one; however in doing so, the caregivers feel mentally drained from not having enough spare time. Alongside the downfall of the relationship, both the caregiver’s and care recipient’s way of living changes. Care recipients want to feel in control again and want to gain some independence. “How might we provide caregivers with some downtime to relieve some stress?”