“May I ask you something?” she says towards the end of the interview. “I’m going to conduct thirty interviews along the way. I’ve never done that before – do you have any tips for me?” Golnaz Atefi has certainly set herself a challenge. On 1 September, the Iranian research fellow at the Limburg Alzheimer’s Centre embarked on a roller-skating journey of a thousand kilometres. Her route, divided into stages of thirty to forty kilometres per day, will take her from the Netherlands to Geneva, Switzerland, where the Alzheimer Europe Conference will be held in early October.
Not a holiday
The distance is considerable – “If I make it, it’ll be a women’s world record” – but it isn’t the hardest part. Atefi, who previously completed a 250-kilometre roller-skating fundraiser in 2021, spent months training for the journey. After submitting her PhD dissertation (on the effectiveness of online support for informal caregivers) in early August, she increased her training to about four hours per day, the estimated duration of a single stage. “I enjoy the physical aspect. Skating is relaxing for me.”
The main challenge lies in the work she’s carrying with her. “This isn’t a holiday or time off.” Atefi will be creating social media content every day, documenting her journey online to raise awareness of dementia and its impact on people’s lives. “I also hope to show people with dementia, informal caregivers and the general public how important it is to participate in research. It can improve care for yourself and others. Recruiting participants for studies is often a challenge.”
Diverse dataset
And then there are the interviews. Every day, she will speak with a fellow researcher or healthcare professional. It’ll be a learning experience for her – “I’ll be discussing the data I’ve collected so far during my fellowship with them” – and hopefully just as valuable to her interviewees and online followers. “During my PhD research, I noticed that datasets often aren’t diverse enough. For example, much of my own research focuses on Alzheimer’s disease [the most common form of dementia], so we’re not sure if the results apply to people with other forms of dementia and their informal caregivers. Or a study will say, ‘One hundred participants in this country have benefited from this innovation.’ But what are their backgrounds? Do they live in urban or rural areas? Are they retired or not? Do they have families or not? And don’t forget the factor of educational attainment. For example, people with higher levels of educational attainment are more likely to participate in online support interventions for informal caregivers than people with lower levels of educational attainment. I hope to make researchers more aware of the importance of rich, diverse datasets and inclusive care.”
A life on inline skates
And she’s doing it on inline skates. This wasn’t a random choice; Atefi has been skating for most of her life. “I was seven when I got my first pair of roller skates, from my grandparents”, she says. “When my grandfather later developed dementia, it took a while for me to understand he wasn’t joking around – he was ill. And I saw my grandmother’s dedication to caring for him. Every time I put on my skates, I feel connected to them and my childhood.” It was her grandparents’ story that sparked Atefi’s research interest in the condition. “There’s still so much we don’t know about this disease.”