User researchers can engage better in interviews with people with dementia by doing what should seem obvious: treating them like any other normal human being.
In the Carelink AAL* project, U-Sentric and Akademie Berlingen have focused on ensuring a future-proof concept by gathering insights of the needs and wants of people with dementia and their (informal) caretakers. The result will be an adaptive solution that monitors people with dementia and helps bring a positive outcome to wandering events.
Currently, the research has been carried out in Belgium and Switzerland, by U-Sentric and Akademie Berlingen respectively. To ensure validation of the findings and pinpoint differences and similarities in the countries of the other partners, the research will be carried out there as well. The next challenge will therefore be to get the more technically oriented project partners in Ireland (TSSG) and Portugal (Uninova) acquainted with U-Sentric’s interview techniques and especially with the way to approach people with dementia in an interview.
A key finding is that there’s still not enough understanding and awareness of the challenges people with dementia go through but also how to interact with them when conducting an interview. U-sentric aims to outline a ‘specialized’ approach for its partners to enable them to conduct these interviews in the best way possible.
In this case, ‘specialized’ means a stronger emphasis on a normal approach. Why is this important? Although, these people suffer from light or severe memory-loss, they’re still very much adult human beings and should be treated as such. This can’t be forgotten, both within and outside of a research context.
From the interviews with (research) experts on dementia and experience gathered through this process
, these are the most important pointers when conducting interviews with people with dementia (many of these pointers are also valid for any other interview):
Go as a human being.
Although it is important to be transparent about why you are doing an interview, don’t approach people with dementia as ‘a researcher’ but as a human being. Introduce yourself, talk about yourself (a bit) and look for touch points such as matching interests, that will get you both talking.
Always treat people with dementia as grown ups.
Seems obvious, doesn’t it? But it often isn’t respected in practice. Because people with dementia will gradually lose some of their abilities there is a tendency to approach them as children rather than grown ups. Depending on how much their condition has progressed, they still maintain much of their own opinions and preferences. Therefore, it is important to involve them directly and not to belittle them.
Positively reinforce what people with dementia are capable of.
Although you might be interested in both the capabilities they still have and the ones they have lost, make sure not to rub in what they have lost or what is coming. Many people with dementia naturally have a hard time accepting these losses in terms of capabilities or even the fact they’re living with dementia. Therefore, they will often avoid talking about this or denying it altogether. As such, it is important to focus more on what people with dementia are still capable of so we can leave them with a positive feeling after the interview.
Use personas as a tool for projection.
To get past those uncomfortable subjects, we have introduced people with dementia to personas of other people with dementia to stories similar to theirs. This allows them to talk about uncomfortable subjects (such as loss of capabilities, wandering, etc.) in the third person, making it less confronting.
Make sure to get consent.
An obvious point, but it’s important to get their consent, directly from them or via an informal caretaker acting as their legal guardian.
Bring a gift or sweets.
This is a way of thanking your participants for their time and effort but it also creates a more familiar, informal setting for the interview to take place in. And who doesn’t like sweets?
What challenges do or did you experience in the daily life of people with dementia?
We’d like to warmly thank the following partners for the enthusiasm and help during our insight gathering track in Belgium: Dementielab (Niels Hendriks), Hogevijf, lokale dienstencentra Hasselt , Samana regio Limburg, Het ontmoetingshuis Leuven, De Pottelberg Kortijk, De Wingerd, Ocura, Zorg Leuven, Qaly, Woonzorgcentrum De Ruyschaert, Het Booghuys, ECD Contact en Expertisecentrum dementie MEMO.