'A conversation about informal care always feels premature, until it is too late...'

'You think to yourself: we'll do that over the Christmas holidays, or on a rainy day. Inevitably, however, you end up too busy doing other things.' Talking to your parents in a timely manner about their care situation in the future is very difficult. But it is important, as a lot of things can come at the same time when parents suddenly need care. Researcher Eefje Ernst designed and tested a method that helps families and informal caregivers on this front.

‘Countless people are walking around with questions about care in the future as they see their parents ageing. But having a conversation about it often never happens because it always feels 'too soon', said Eefje Ernst, who is a researcher at TU Delft's Faculty of Industrial Design Engineering. 'Directly or indirectly, everyone is confronted with informal care at some point in their lives. But how do you engage your family members in a conversation about caring for each other before the need actually arises? A conversation about informal care always feels premature, until it is too late.'

This is why we developed and tested a tookit in our research project 'MyFutures' that facilitates this conversation and helps family members learn a lot from and about each other regarding care in the future.' The toolkit is called ‘20 Jaar samen opgroeien & ouder worden’ ('20 Years of Growing Up and Older Together') and consists of a set of cards with icebreaker questions for a family conversation. 'Questions include: "How do you imagine yourself living in 2020?" or "Share something that no one knows about you." or "What are your experiences with care so far?".'

One family member initiates the conversation and invites the others to fill in the cards ahead of time. Later, during the conversation, everyone compares their answers: what was your answer? This helps things get going. 'Six families were involved in the study, which has been completed in the meantime. Response was positive from all six families.'

'With MyFutures, we are looking for ways to support people in thinking about the future: Tools to Support Thinking about Personal Futures  The methods used are based on context mapping, a method of research for designers with which we are well-acquainted in our faculty.  

'Our study revealed that when it comes to topics such as living and care in the future, adult children often have a lot of questions. Although their ageing parents often do have ideas on the matter, they don't share these with their children. During the family conversations conducted using the MyFutures tool, we see that family members spell out their personal expectations for the future and share and discuss them with each other. Family members get an idea of where the other stands. We see that the personal ideas regarding the future become more detailed, realistic and nuanced after the conversation.'

'Family members also feel that this conversation will enable them to easily bring up the matters discussed with each other again at a later date. The family conversation also opens the door to talking with friends, other family members or colleagues about care and living in the future. This way, family members have already started talking with one another before it is suddenly too late.'

'Our insights and methods can be tremendously valuable to prospective informal caregivers. Consequently, I think it's great if our study gets publicity as a result of Informal Care Day (on Friday 10 November). Especially because we can talk about the phase that comes before providing informal care. And because we have a positive message about that phase: that you can go ahead and start talking with family members now, and that it's worthwhile.'

With this project, Eefje Ernst hopes to reach parties that stand to benefit from the tool. These include major employers, for example, municipalities and general practitioners. And players on a smaller scale, too, such as coaches and counsellors for senior citizens. In addition, we want people with ageing parents to know that they are most certainly not the only ones with questions, and that they can go ahead and start engaging in conversation with their parents. At the same time, we want ageing parents to know that their children may have a lot of questions.

A number of major parties are already involved in this MyFutures case, including CZ (as health insurance provider), the municipalities of Rotterdam, Eindhoven and The Hague, Zorggroep Almere, informal care organisation Mezzo and Amsterdam University of Applied Sciences, which is conducting research on support for informal caregivers.