Alzheimer's Support Platform

Exploring & validating product concepts in a new market

Role
Lead UX Researcher

Methods
Interviews, Field study, Personas, User journeys

Type
Foundational Research

Date
2016 - 6 months

A bit of context…

Alzhup was a healthcare startup that was building an app for which they planned to launch in Spain and came to us seeking to expand the release to the US.

The team consisted of the a lead strategist, a lead interaction designer, and 3 user researchers. My responsibility as lead user researcher in this project consisted of designing and executing studies, as well as, managing supporting user researchers.

Our challenges

  1. Gaining an understanding of cultural nuances in the lives of people with Alzheimer’s in the US that might affect the reception of the app.

  2. Gaining an understanding of the Alzheimer’s medical ecosystem in the US.

  3. Proposing changes to ensure a successful launch of a beta product into the US market.

Our approach

While our initial approach looked like this…

After preliminary research we adapted it to this…

An preliminary research phase...

  • to capture any cultural differences that might impact the US version of the app

  • as a litmus test of the therapeutic activities in the app

A exploratory research phase to...

  • uncover the different needs & behaviors of people with Alzheimer’s and their caregivers in the US

  • gain a deeper understanding of the feasible opportunities

A synthesis phase to...

  • map the journeys of Alzheimer’s patients and caregivers through different stages of the disease

  • highlight the US-centric opportunities of at each stage

And finally, a presentation to...

  • transfer the knowledge & provide recommendations for a US launch

Preliminary Research

Due to the sensitive nature of Alzheimer’s, I expected some resistance. However, I was not prepared to the level of pushback I received.

After many failed hours reaching out to organizations, daycare facilities, and non-profits. I changed my approach.

I started to reach out support groups for caregivers, sending over a pamphlet with the information of the study.

 

A support group facilitator suggested I join one of her sessions.

We sat and listened to 12 caregivers, of all different stages of the disease, talk about their most intimate struggles.

We were given the opportunity to share our prototype for the last 5 minutes of the session.

 

We were way off mark!

U.S.

 

E.U.

No concrete diagnosis of the disease

Disease progression tracked through the Global Dementia Scale

 

Caregivers’ main concern is financial support

Caregivers receive medical and financial support from government

 

Caregivers distrust in treatment led them to seek comfort and joy to their loved ones on their last years

Caregivers’ trust in treatment led them to seek more therapies and activities to slow the progress of the disease

 

The results from this one study were enough to prove the need for exploratory research.

Exploratory Research

Field study

I was able to observe 30 patients from every stage of the disease in a care facility over the course of 2 weeks. And was lucky enough to run a small study with five diagnosed with mild and moderate Alzheimer’s patients on the actual prototype.

None of them were able to perform the therapeutic activities in the app. In fact, most of them struggled interacting with the iPad.

It became clear that the product was mis-matched for this demographic.

Med staff interviews

In light of this new information, I conducted 4 interviews with medical staff which provided a bigger insight into the disconnect between the US and European Market.

Everything about the treatment of the disease was different here in the US. They were diagnosed at a later state, the progress was tracked subjectively, and they seemed to be more concerned with the well-being of the patient instead of focusing on slowing the progress of the disease.

"There is no 100% way to diagnose someone with Alzheimer’s Disease, until the person passes away and they can do a brain autopsy. Doctor’s generally will wait until the patient is showing CLEAR signs of Alzheimer’s Disease before diagnosing them to avoid misdiagnosis." 

Doctor. Full-time Facility.
Patient's Disease Stages: Mild - Advanced.

Caregiver interviews

We conducted 20 semi-structured interviews with caregivers, which further validated that the product was way off the mark for the US market. The only feature that resonated with caregivers was the photo albums. They cherished the moments that they had shared with their loved ones while viewing old photos.

This shed light into the unaddressed needs of the caregivers. Caregivers face emotional, financial, and physical stress. Caregiving is an all consuming job. On top the emotional pain of grieving a person that’s physically still there, they feel guilt and shame for missing their independence and their old lives.

"What would make my situation better with her? Death. It’s hard to say but it’s the truth you know? It doesn’t get any better, it gets worse."

Daughter. Caregiver. 
Patient's Disease Stage: Moderate.

"It consumes you. You know? It’s your whole life. You’re watching them 24 hours. It’s kind of like you’re a new mom, but it’s not. You just kind of need to, you kind of have to have something normal in your life."

Daughter. Main Caregiver. 
Patient's Disease Stage: Mild.

Synthesis

We mainly analyzed the data through affinity mapping, and prepared user personas and journeys for both people living with Alzheimer’s and their caregivers.

Additionally, we created personas for people diagnosed with MCI with the disclaimer that these were based on the recall of three caregivers, and further research was necessary.

 

Alzheimer’s Patients

 

Alzheimer’s Caregivers

Results

We were able to halt the development of a US version of the app and beta testing and instead reallocate the cost.

The recommendation was to do an additional research study with those diagnosed with MCI to better understand the product market-fit.

We strongly believed the product would have to substantially change due to the general skepticism of the US general public about this specific therapeutic approach to slowing down cognitive decline (their main value proposition) and the general availability and popularity of brain training games.

The CEO decided to halt the development of the app in the US.

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