His eyes begin to fill with tears, he’s trembling as he’s speaking. “She took all of his savings, she took advantage of him and his dementia.” He says as a tear rolls down his cheek.
I stare back at him, frozen, covered in goosebumps, shaking a little. Silence.
You try interviewing users and uncovering insights from somebody as they pour their heart out to you. As they reminisce and recount happier times they shared with a loved one. As they tell you how much they miss their pre-dementia dad. It’s not easy, or pleasant.
This is the situation I’ve found myself in recently while conducting user research with people living with dementia and their carers. It’s been an enlightening experience and one I wanted to share.
“I tell people a lot about his dementia. I’m not ashamed, I love him as much as I ever did.”
Moderating two people
I’ve moderated hours of user research. From C-Suite executives of Fortune 500s to school teachers to first time home buyers. But this audience proved to be the most challenging.
Some challenges I expected and tried well to prepare for. Others took me by surprise, I would never have guessed they would occur. One of which was the carer, commonly family members, taking control of the user interview inadvertently.
From answering the question that I asked the person living with dementia, to, taking my questions and asking them in a way to the person living with dementia that they thought they would better understand.
Carers are used to helping the person living with dementia with everything they do. Therefore I suppose it was only natural they intervened regularly, in their eyes they were helping.
At times it was useful, the carers know the person better than I ever will, they know how to word things in a certain way to glean a response. But most of the time, their efforts as well meaning as they were, were to the detriment of the interview.
It would interrupt the flow, having to suddenly stop and listen as the carer asked my question in a slightly different way. At times the carers would ask leading questions, or make leading comments that inevitably led the person living with dementia.
To overcome this I would politely remind the carer that we would like to hear the view of the person living with dementia, rather than what they think they would say. I also made it very obvious who I was asking my questions to. Engaging fully in the conversation and making eye contact throughout with the person living with dementia, it made it feel like we were the only people in the room, like it was a private conversation.
“Social services wanted to take him away from me. It was the first time I saw my dad cry.”
Walking a fine line
I love digging away at an attitude, comment or belief of a user, truly uncovering what they mean, and asking the 5 Whys to get to the essence of it.
But this was tough when a participant was speaking about deeply emotional topics, and recalling quite frankly heartbreaking stories. You end up walking a fine line between probing further to get more value from the conversation, but then risk probing too much and pushing the person too far. Thus making them feel uncomfortable, and close up. The last thing I want to do.
Body language is your friend in these situations. Observe and spot the tells that giveaway the participant is uncomfortable disclosing more information, or telling you certain things.
I also feel it’s empathy and common sense to know when to push further ahead with a certain topic, and when to shut down the conversation and move swiftly on. Offer the participant a break before continuing if they’ve discussed a particularly harrowing topic.
“Grandma doesn’t know her reality anymore, so we have to live in hers.”
Keeping the conversation focussed
Carers are opinionated people. Which is great, rather that than somebody who is shy and not forthcoming about how they truly feel.
But because they care so much, because they have so many opinions, so many ideas on how improvements can be made, at times it was tough to keep the conversation focussed and ensure it met the research objectives.
In user interviews you can expect participants to go off on tangents unrelated to the conversation topic, it’s my job to bring them back on track. I’ve found no problem doing that in the past.
But during this research it was different. The participants were sharing deeply personal and emotional matters, who was I to cut them off and bring them back onto what I wanted to talk about? It didn’t seem like the right thing to do, and I judged during the interviews it would be the wrong approach to take, it may lead to negative consequences.
Instead I let them talk it out. Let them get their complaints and suggestions off their chest early and out of the way. I took their comments on board and explored them deeper if I felt they would add value.
To overcome this problem cropping up during the rest of the interview I ensured my questions were short, specific and direct regarding the topic I wanted to discuss. It seemed to do the trick.
“Yes, I’m a carer for Charlie. But first and foremost I’m Charlie’s wife, I always will be.”
This was the first time I had conducted user research on such an emotional and personal topic, it was a tough and often uncomfortable experience.
Throughout my colleague and I learnt by doing, trying new things and taking the learnings into the next interview and so on and so on.
“You’re 76 shortly.”
“Yes, you are!”
My grandma lived with dementia before she passed away, it’s a horrible disease to see someone you love live with.
This project and research was therefore extra special for me.
I hope our work improves the lives of those living with dementia and their carers, even just a little.