Parkinson Disease Research | Ux Design Portfolio

Understanding the Hidden Burden:

Caregiving for Parkinson’s Disease in India

Independent Study (Ongoing)

Roles & Responsibilities

Human Factors & UX: Workflow mapping, observational studies.

UX Research: Usability Studies.

Tools Used

Figma

Medium

Collaboration

Human Factors Team

Subject Matter Experts

Duration

May 2025 - present

Background & Motivation

For over a decade, my grandmother cared for my grandfather as he lived with Parkinson’s.

Even when he grew weak, she ensured he stayed groomed, clean, and dignified.During the last time I saw them together, he briefly regained consciousness, touched her face, and shed a single tear as she smiled back at him.That moment shaped my understanding of caregiving: quiet, unpaid, continuous, and deeply human.This project is my way of contributing to people like her, caregivers who suffer silently while giving everything they have.

Overview

When James Parkinson first documented involuntary tremors, stooped posture, and difficulty walking in three elderly men in 1817, he laid the foundation for what we now know as Parkinson’s Disease (PD).

Nearly two centuries later, PD affects millions worldwide, yet much of the burden extends silently to caregivers.

This project explores the unique challenges faced by Parkinson’s caregivers in Indian towns and proposes user-centered interventions to support their emotional, informational, and social needs.

Objective

Identify pain points
Knowledge gaps and social isolation in caregivers
Ongoing ideation & design solutions to improve caregiver well-being, access to information, and support networks.

Phase 1: Empathize

Secondary Research

Parkinson’s disease is a progressive neurodegenerative disorder affecting movement, caused by the death of dopamine-producing neurons in the brain’s substantia nigra. Key symptoms include tremors, rigidity, slowed movement, and balance issues, with risk of falls.

In India:

PD prevalence is relatively low, but absolute numbers are high due to population size.
Rural populations have higher prevalence than urban ones.
Neuropsychiatric symptoms (depression, anxiety, sleep disturbances) are common.
Awareness about PD progression, medications, and surgical options is limited among both patients and caregivers.

Caregiver impact:

Informal caregivers (spouses, children) often work 12+ hours a day.
Social isolation is common, especially when patients reach advanced stages.
Emotional strain, psychiatric risks, and financial stress are significant.

Care team composition:

Neurologist, physical therapist, speech therapist, mental health therapist, informal caregivers.

Primary Research

Survey Insights

Surveyed 20+ participants across urban and semi-urban India
Knowledge gaps exist around:
Disease causes (dopamine decrease understood better than surgical options)
Timing of operations (most assume early intervention is required)
Psychoeducation and prognosis

Observational & Interview Insights

From interviews with caregivers and naturalistic observations:

Daily caregiving routines are physically and emotionally draining.
Small interventions like handles, grips, and water beds are critical adaptations.
Emotional moments, e.g., patients recognizing caregivers briefly, have profound meaning.
Caregivers often lack peer support and opportunities to share experiences.

Phase 2: Define

Based on secondary research, surveys, and observational studies, I identified key caregiver challenges:

Emotional burden: Caregivers often experience isolation, stress, and anxiety, particularly as the patient’s condition advances.
Information gap: Caregivers struggle with understanding PD progression, medication management, home adaptations, and available resources.
Limited social support: Most caregivers stop socializing once the patient reaches later stages, and there are minimal opportunities to connect with peers for advice or emotional relief.

Research Insight:

Any sort of help in the form of connections, support groups, physical/emotional assistance could bring a sense of relief to the caregivers, especially in regions like India where Parkinson’s disease is not commonly known and most people are not deeply aware about the disease, unlike Alzeheimer’s.

Key Takeaways:

Caregivers need both emotional support and practical guidance.
Awareness about disease progression, medication management, and home adaptations is low, especially in semi-urban and rural India.
Social connection opportunities are minimal, yet highly valued when available.
Observational studies revealed subtle, stage-specific caregiving challenges that are often overlooked in surveys or literature.

Next Steps (Research & Design Planning)

Recruit additional participants across urban and semi-urban areas for interviews and observational studies.
Conduct in-depth naturalistic observation to map caregiver routines, tools, and coping strategies.
Begin synthesis of research data to identify patterns and prioritize areas for intervention.
Explore early prototypes of digital or community solutions informed by caregiver feedback.

Conclusion

This ongoing research underscores that Parkinson’s caregiving extends far beyond physical assistance. Emotional, informational, and social support are critical for improving caregiver well-being. By focusing on evidence-based observations and understanding the lived experience of caregivers in Indian contexts, future interventions can be empathetic, culturally sensitive, and practically useful.

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