Introduction
Centring the lived experience of dementia within policy, practice, and community development (The EnACT-Dem project) is a global collaboration led by the University of Stirling, working hand in hand with partners from London, Greenwich University, Canada, British Columbia University, Lakehead University, and Germany, the University of Giessen, to bring about a positive change in the lives of those living with dementia.
The EnACT-Dem project aims not only to understand the day-to-day experiences of living with dementia but also to use this understanding to enhance community transformation and the policy and practice that support it. By impacting both the process and outcomes of dementia, the project will enable community development, strengthen an international network of community initiatives, and demonstrate the potential of coordinated community action to enable people to live well with dementia. The research will generate data to inform practice and service delivery and also to guide policy development, particularly in the creation of ‘dementia-friendly communities.’
An inclusive dementia-friendly community is a place where people with dementia can be understood, respected, and supported and feel confident about contributing to the community. It is also designed with their needs in mind, such as accessible public spaces, clear signage, and supportive social environments (Wu et al., 2019) 1. The notion of a dementia-friendly community, which is at the heart of the EnACT-Dem project, has been drawn from the Age-Friendly Cities initiative of the World Health Organisation and has emerged as an idea with the potential to contribute to cultivating social inclusion (Hung et al., 2021) 2. Your support and involvement in this goal are crucial and greatly appreciated.
The EnACT-Dem project uses a mix of qualitative methods to explore people’s experiences in their local communities and the enabling features and barriers to social and physical participation. One key method we are using is the walking interviews, which provide a unique perspective on how people with dementia, individually and within their networks and neighbourhoods, work to overcome exclusion and participate in their communities. This blog will focus on the insights gained from these walking interviews with people living with dementia and their carers.
Walking interviews
We have asked people living with dementia to keep a diary of how they spend their time daily for seven days, and then we usually meet them for in-depth interviews. Some have done it alone, and some with the help of family members, mainly spouses. When conducting the walking interviews, we want to understand how people feel about their community: whether they feel supported, whether they feel they belong, who they see, what they like about their communities, and what could be improved.
Below is a sample of a diary. Some people add pictures of their activities or when out and about, and others don’t. Some write the chronology of their day, but as we see in this diary, the participant expresses their feelings too, for example, through emojis. He also uses humour, ‘I did not know Santa took pleasure in people’s misery’ describing the challenging jigsaw he received as a Christmas present.
Diary as a reminiscence tool
As a researcher, I noticed the participants were more animated during the walking interview in the natural environment. These familiar outdoor settings helped and encouraged them to explore topics inspired by what they were viewing outdoors, topics they were unlikely to discuss in an indoor sitting interview. For example, one participant discussed a key relationship in his younger life triggered by a rowan tree, a tree his girlfriend liked when he was 21 years old, now 88 years old. Therefore, walking interviews allowed me, as a researcher, to gain some contextual insights by observing participants interacting with their environment. This provided valuable context and insights into their experiences, especially regarding place, space, memory, past or daily life. I also found that for people living with dementia, being in a familiar or meaningful environment triggered memories and associations that enriched the interview content. For example, one participant reminisced about his career as a Medical Laboratory Scientist officer, especially when he found bird droppings. He said, ‘It is crap to you, but this was my bread and butter when I worked in the laboratory.’ This was an interesting way to explore his interests and what he had done in life.
Walking interviews were more flexible, easy, and adaptable to participants’ pace, interests, and preferences. Being able to adjust to suit participants’ comfort levels helped reduce pressure on the participants compared to sit-down interviews, which felt formal and probably more intimidating. However, with the walking interviews, they felt more relaxed and at ease in casual conversation, and they could enjoy the process more.
Practicality of walking
I found that walking, as a physical activity, stimulated conversations about the benefits of exercise, fresh air, and creativity in an informal setting, which was mutually beneficial. The participants felt more engaged and willing to share their thoughts and experiences when they were in motion, pointing out things that were important to them, such as wildlife, plants, water bodies and features of historical significance.
The act of walking promoted reflection, allowing participants to think more deeply about their experiences and articulate their thoughts in a more nuanced way. For example, one participant talked about how walking is her time to talk with her family living abroad, which makes her feel connected despite the distance. This prompted conversations about a sense of belonging where, although physically grounded in Scotland, she said during these conversations that her mind is back ‘home’ in her country of origin. She added that these walking phone calls enable this reconnection, and through her descriptions, her family know the paths and routes she takes and what she likes about them.
While walking interviews encouraged exercise, I found that as a researcher, I had to be mindful of participants’ abilities. For example, one participant in his mid-80s said he was enjoying the walk and wanted to walk 6 miles. I advised him we walk about 2 miles since he had mentioned he gets tired easily and can be unstable on his feet. Therefore, this can be part of the risk assessment when planning a walking interview.
Partnership and collaboration
The informal nature of the walking interview helped build rapport between the researcher and participants, fostering a sense of partnership and collaboration in the research process. They also provided a more holistic understanding of participants’ lives as they discussed their experiences while interacting with their surroundings.
Walking interviews also allowed me as a researcher to be reflective and consider my own biases, the dynamics of the interview, and how these may have influenced the data collected. For example, one participant had a great depth of knowledge of medicinal plants, which is a particular interest of mine, and I encouraged him to give more details from my personal curiosity. Therefore, there were more conversations on this than if he were walking with a researcher with less interest in this area. The participants commented that it had been very enjoyable walking with someone with similar interests in plant botany.
Some participants became very submerged in the experience and were very stimulated by what they were observing and experiencing. The gentleman in the picture below talked about his love for nature and the need to ‘stop and smell the roses’ literally and metaphorically.
Sensory overload
Some participants discussed how sensory overload can be a significant challenge for them when outdoors. This happens when the brain receives more sensory input than it can process, leading to feelings of confusion, anxiety, and distress. One participant highlighted that during the school run, when many school children occupied the walkway, it was particularly difficult for him to go for a walk. Another example was when there were too many dog walkers with dogs that jumped on the participant. Their coping mechanism was creating a familiar routine that provided a sense of security and predictability, such as avoiding going out during busy times to reduce anxiety and stress. Another one said he avoids busy local parks and goes further a field where he can find peace and quiet and manage the sensory input more effectively. Therefore, professionals and caregivers who understand sensory overload can help create a more quiet, peaceful and supportive environment for individuals living with dementia, enhancing their overall well-being.
Conclusion
Timeline diaries incorporated with walking interviews highlight how those reflections can reveal hidden needs, desires, achievements and challenges faced by people with dementia in everyday situations, which connects to spatial design, social interactions, or communication methods. Some of these highlight the importance of everyday life outside of health and social care provision. Therefore, it should also be more visible in the policy development and service design process.
Overall, walking interviews can be a powerful method for gathering qualitative data, especially in a study like EnACT-DEM that focuses on lived experiences, community engagement, use of time, social support and how people interact with their environment. It gives us insights into environmental aspects that promote participants’ well-being, how they are trying to remain connected within their neighbourhood, and how this may help reduce experiences of loneliness and isolation.
By remaining engaged, researchers can conduct respectful, insightful, and beneficial walking interviews to benefit both the participants and the broader understanding of dementia and what matters to people.
EnACT-DEM offers various opportunities for greater collaboration and understanding of ageing and dementia in a Western global context, especially in the notion of age-friendly communities. This enables us to understand what changes could be made to support people living with dementia in continuing to enjoy their communities in a safe and supportive way.
If you would like to take part in our research, do not hesitate to contact us. For further information, you can email Research Fellow Mary Njoki at mary.njoki1@stir.ac.uk.
Thank you for reading.
References
- Wu S., Huang H., Chiu Y., Tang L., Yang P., Hsu J., Liu C., Wang W., Shyu Y. L. (2019). Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers. Journal of Advanced Nursing, 75(11), 2878–2889. https://doi.org/10.1111/jan.14123 ↩︎
- Hung L, Hudson A, Gregorio M, et al. Creating Dementia-Friendly Communities for Social Inclusion: A Scoping Review. Gerontology and Geriatric Medicine. 2021;7. doi:10.1177/23337214211013596. ↩︎