Supporting Informal Caregivers of Alzheimer’s Patients
Role
UX Researcher & Designer
Team
4 Designers
Timeframe
4 months
Methods
The Opportunity
As the global population ages, the number of individuals over 65 is expected to double in the next 25 to 50 years. This demographic shift will place an unprecedented demand on caregivers, particularly informal caregivers of Alzheimer’s patients—often family members who provide unpaid care.
In the U.S., caregivers save the government an estimated $350 billion annually, yet their contribution comes at a steep personal cost. With the rising number of Alzheimer’s patients, the strain on caregivers will only intensify, leading to a sharp increase in healthcare expenditures.
“About 45% of caregivers die before the care recipients because they forget to take care of themselves”
- Head of Alzheimer’s and Dimentia Unit, Indiana University Hospital
This urgent issue highlights the need for immediate, impactful solutions that support caregivers' well-being. By addressing their challenges, we can ensure sustained care, improve caregiver health, and enhance the quality of patient care, ultimately fostering a system that sustains both caregivers and those they care for.
The Problem
Both informal caregivers and Alzheimer's patients face significant challenges that impact their emotional well-being, daily functioning, and overall quality of life.
We conducted 6+ interviews with informal caregivers as well as healthcare providers followed by affinity mapping to uncover the key pain points affecting both caregivers and Alzheimer’s patients.
Caregiver Pain Points
Balancing Caregiving and Work
Caregivers struggle to juggle caregiving with work and personal lives, leading to stress, burnout, and job-related consequences.
Changing Relationship Dynamics
The shift from family member to primary caregiver creates emotional strain, with caregivers grappling with guilt, grief, and frustration over their loved one's cognitive decline.
Neglecting Self-Care
Caregivers often neglect their own health, leading to high stress and burnout, which negatively affects both their well-being and the quality of care they provide.
Care Recipient Pain Points
Feeling Like a Burden
Alzheimer’s patients often feel like a burden on their caregivers, leading to guilt, depression, and diminished self-worth.
Frustration and Loss of Control
Patients face frustration from memory loss and cognitive decline, resulting in anxiety, confusion, and a reduced sense of self-worth.
Triggered by Environmental Changes
Changes in environment or routine can trigger confusion, anxiety, and a loss of control in Alzheimer’s patients, causing distress and emotional instability.
Our Approach
Through semi-structured interviews with caregivers and healthcare providers, we mapped a Day in the Life Journey, uncovering ground-level issues such as emotional strain, logistical challenges, and stress fluctuations throughout the day. This revealed key moments where targeted interventions could alleviate burden and improve care quality.
This visual stress heat map highlights a crucial insight: caregivers can only focus on their well-being when they are fully assured that the patient is safe and cared for.
Throughout the day, their stress levels peak during moments of uncertainty, patient distress, and lack of support. This pattern reveals that before addressing caregiver burnout, we must first design an intervention that prioritizes the patient’s needs, ensuring their safety, stability, and routine.
By establishing this foundation, caregivers can then find space to manage their own emotional well-being, reducing stress and enabling better care for both themselves and their loved ones.
How might we create a support system that ensures Alzheimer’s patients receive consistent, high-quality care while also alleviating the emotional and physical burden on informal caregivers?
Design Goals
Ensure continuous, high-quality patient care
Alleviate caregiver stress and prevent burnout
Help caregivers balance work and caregiving
Ease emotional strain in caregiver-patient relationships
Create accessible and scalable support solutions
The Solution
Key Features
This complex, multifaceted problem requires a comprehensive solution. Here, we focus on urgent, easy-to-implement solutions that seamlessly integrate into patients' lives while reducing caregiver stress, preventing burnout, and strengthening relationships with loved ones.
Assisting Caregivers
Indoor Navigation
Alzheimer’s patients often struggle to recognize rooms in their own homes, leading to confusion and dependence on caregivers for navigation. CareBit addresses this by guiding patients through their space, fostering independence while easing the caregiver’s workload.
Medicine Reminders
Alzheimer’s patients may forget their medication or take multiple doses by mistake. CareBit ensures safe medication management by dispensing one dose at a time while keeping other medicines locked. Its built-in camera detects whether the patient takes or discards the medicine, tracking compliance and alerting caregivers only when needed—reducing stress and ensuring proper medication intake.
Remote Monitoring
Alzheimer’s patients are prone to falls and may struggle to call for help. CareBit’s remote monitoring and fall detection instantly alerts caregivers in case of an accident, ensuring timely assistance. By tracking patient activity and providing real-time updates, it offers peace of mind to both patients and their loved ones, allowing caregivers to step away without constant worry.
Protecting Caregiver- Patient Relationship
Cognitive Activities
Alzheimer’s patients often struggle with memory loss, which can strain their relationships with loved ones. CareBit’s cognitive games use personalized photos and memory-based questions to stimulate recall and strengthen connections. By engaging patients in familiar and meaningful interactions, it helps preserve their cognitive abilities while allowing caregivers to re-bond with them, fostering a sense of closeness and shared moments.
Proactive Conversation Analyzer
This feature provides a supportive space for caregivers by actively listening to their concerns and responding with comforting words, practical tips, and expert-backed advice. By offering a therapeutic outlet for stress and frustration, it helps caregivers feel heard, understood, and emotionally supported, ultimately improving their mental well-being.
Communication Alert
This feature enhances video calls by guiding caregivers to slow down their speech and use gestures, ensuring clear and effective communication. This helps prevent misunderstandings and frustration, making interactions more engaging and reassuring for Alzheimer's patients while strengthening their connection with caregivers.
Visual Design
The screen UI is designed to be exceptionally clean and simple, featuring clear buttons and intuitive CTAs to minimize confusion for Alzheimer's patients. The layout prioritizes ease of navigation, ensuring that users can interact with CareBit without frustration. Every element is thoughtfully placed to provide a seamless, user-friendly experience that aligns with the cognitive needs of patients.
The color scheme incorporates high contrast and soothing tones to enhance readability and reduce visual strain. Large, legible text and well-defined interactive elements help users engage with the system effortlessly. By following accessibility principles tailored to memory impairments and cognitive decline, CareBit ensures a stress-free and intuitive experience, empowering patients while reducing caregiver intervention.
Outcomes
Due to the sensitivity of Alzheimer’s, we were unable to test our solution directly with patients and caregivers. However, we conducted usability tests in two rounds to evaluate the UI design, ensuring clarity and accessibility for Alzheimer’s patients. Additionally, we demoed our solution to healthcare providers at the Alzheimer’s and Dementia Unit of Indiana University Hospital, gathering expert feedback on its feasibility and effectiveness.
Using these insights, we performed a predictive analysis to estimate CareBit’s impact. By creating a revised "Day in the Life" and Stress Map, we projected a measurable reduction in caregiver stress, reinforcing the value of integrating a home companion robot with a mobile application.
Key Takeaways from Stress Reduction
Significant stress reduction throughout the day.
Improved caregiver well-being and mental health.
Enhanced patient independence reduces caregiver workload.
Peace of mind through smart monitoring and fall detection.
Stronger family collaboration and shared responsibilities.
Better work-life balance with fewer distractions.
More predictable and structured daily routines.
Caregiving becomes a manageable and supported experience.
Reflections
Designing for Emotional Support
Addressing the emotional needs of Alzheimer's patients and caregivers proved challenging. We had to ensure our solution was not only functional but also empathetic, providing comfort through features like proactive conversations and cognitive games.
Balancing Simplicity and Functionality
The need for a user-friendly design for Alzheimer's patients meant focusing on simplicity without sacrificing key features. Striking the right balance between intuitive interfaces and functionality was essential for the app’s success.
Estimating Impact Through Predictive Tools
Without direct testing, we used expert feedback and predictive analysis to estimate the potential reduction in caregiver stress. This experience showed how to use creative methods like stress mapping to project outcomes when traditional testing isn’t feasible.
