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    Home»Mental Wellness»Photovoice and the lived experience of dementia
    Mental Wellness

    Photovoice and the lived experience of dementia

    William MillerBy William MillerApril 15, 2026No Comments7 Mins Read
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    Photovoice and the lived experience of dementia
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    “A picture tells a thousand words”

    Imagery has been found to be an incredibly powerful and impactful way to tell a story or share an experience. There are many different types of people who are often not able to have their stories or experiences presented in research. Health care policy, clinical practice, and research priorities are often set by those who have the most access to research processes, rather than by those who need them most.

    Creative methods provide a way to make research more inclusive and empowering. In some methods, such as photovoice, images not only serve the dual purpose of answering a research question, but also have the potential to remain influential and drive change (Mooney et al., 2023).

    Many collaborative research methods arise from the framework or principles of participatory action research. However the ‘action’ part is often framed as simply dissemination, or sharing of findings, and is rarely evaluated. Sharing research findings in an accessible sustainable way not only has sustained impact, but also increases trust among communities and people participating in the research (Cornish et al., 2023). McIntyre and colleagues conducted research to better understand the impact on audiences who attended a photovoice exhibition that shared the experience of dementia.

    A picture says a thousand words: creative research methods enable participation to be more inclusive and empowering.

    A picture says a thousand words: creative research methods enable participation to be more inclusive and empowering.

    methods

    Photovoice is a methodology that evolved from feminist psychology and participatory action researchers to empower communities to influence policy. Photovoice combines imagery and narrative to allow participants to share their experiences without being limited to the researcher’s perspective (Wang & Burris, 1997). This methodology privileges lived experience as valid knowledge and data. Participants are encouraged to take images that reflect their experiences and add captions to provide context, and to refrain from reinterpreting or reusing their images.

    The team conducted a photovoice study with people who had memory loss. They used a mixed methods approach to better understand the impact of the dissemination of photovoice outputs and their potential to reduce stigma around memory loss.

    the author says so “Qualitative surveys are an underutilized tool, offering both a ‘wide angle’ lens and the potential for rich and focused data, even when responses are brief”. A qualitative survey was distributed among people attending a photographic exhibition and interviews were conducted with members of the study team. Data were analyzed using reflexive thematic analysis.

    Result

    Of those who completed the survey, about half of the respondents had participated in the study that produced the images and about a third had participated because of professional or personal interest. The majority of those interviewed were women. Of the 9 interviews conducted, 6 were researchers, 2 were people with lived experience and one was a photographer/artist. Survey and interview data were combined for analysis, resulting in three themes.

    Seeing through another’s eyes: fostering empathy and insight

    The first theme relates to the ability of the displayed images to share the participants’ perspective, and actually provide those who interact with it a lens to better understand their experiences. This new insight was often described as ‘thought-provoking’ and ‘inspirational’, and for many attendees it created space for empathy and led to consideration of what it must be like for people suffering from memory loss with whom they had personally interacted.

    Visual research in action: communicating findings and building community

    The second theme highlighted the impact of using visual methods to communicate research findings. Participants also shared that the process of creating the exhibit had impact and learned lessons. The exhibition also provided an area where people associated with the exhibition could discuss and interrogate the findings among themselves. This often provides opportunities to connect and reduce stigma.

    Emotional impact: hope and inspiration for change

    The final theme shared among participants was the potential for emotional activation. Hope was often expressed along with new motivations for reducing their risk of dementia in the future.

    Viewing images created as part of the photovoice study helped participants gain a deeper understanding of the experience of memory loss.

    Viewing images created as part of the photovoice study helped participants gain a deeper understanding of the experience of memory loss.

    conclusion

    This research demonstrated the power in visual methods to convey unique experiences, providing an opportunity to truly ‘Walk a mile in someone’s shoes’Or see the world through your lens.

    In advocating for change, people are often limited to grim numbers or statistics that need to change, but a better understanding of lived experience can help gauge the impact of such information in motivating people to make changes, engage in preventive actions, and be more empathetic.

    This photovoice study allowed members of the public to

    This photovoice study allowed members of the public to ‘walk a mile’ in the shoes of someone experiencing memory loss.

    Strengths and limitations

    This work is unique because it considers the impact of data beyond the lifespan of the funded research. This type of data is rarely considered or collected, but it is incredibly important when considering the continuing impact of lived experience data. This is especially important when we consider the burden on participants and researchers to generate data, especially in areas where traditional systems that facilitate research are not inclusive of those who need it most. Therefore an integral part of maintaining ethical research practices should be related to ensuring that data have maximum impact, and are shared and accessible beyond the funding cycle. However, it is often rarely possible to assess the real long-term impact of sharing life experience data due to lack of funding.

    It would also be interesting to interview people who attended the exhibition but were not included in the study, and perhaps collect more data from the same group a year or two after the exhibition, to determine whether their attendance inspired them to change anything in their professional or personal practice.

    This study provides a rare insight into the impact of lived experience data beyond the life course of funded research.

    This study provides a rare insight into the impact of lived experience data beyond the life course of funded research.

    Implications for practice

    Future research on the impact of visual methods should not only include marginalized groups in contributing their experiences, but also consider how experiences are shared and communicated with policy makers and the general public. Fiction has great potential to reduce stigma and effectively communicate difficult traumatic experiences.

    The use of visual imagery can encourage people to think differently and take a different perspective, truly understanding the impact within often hidden communities.

    In conducting inclusive research, researchers are often told that research findings are not well communicated to the communities it aims to benefit or that have contributed to the research. Visual methods make research tangible and accessible; Promoting dialogue, building trust and bringing the voices of communities to bear on the evidence that shapes policy and practice.

    Future research on the impact of visual methods should not only include marginalized groups in contributing their experiences, but also consider how experiences are shared and communicated with policy makers and the general public.

    Future research on the impact of visual methods should not only include marginalized groups in contributing their experiences, but also consider how experiences are shared and communicated with policy makers and the general public.

    Statement of Interests

    Roisin Mooney is a co-investigator of three studies that use the photovoice method.

    Editor

    Edited by Laura Hemming.

    Link

    primary paper

    Sinead McIntyre, Claudia Cooper, Natalia Chamas, Suki Parnell Johnson, Paul Higgs, Wendy Martin, Sarah Morgan-Trimmer, Alexandra Burton, Michaela Pope, Ellie Whitfield (2025). ‘Memories we cherish’: Evaluating the impact on co-designers and audiences of a photographic exhibition by participants with memory problems.. dementia14713012251338551.

    Other references

    Cornish, F., Breton, N., Moreno-Tabarez, U., Delgado, J., Rua, M., De-Graft Aikins, A., and Hodgetts, D. (2023). participatory action research. Nature Reviews Methodology Primer, 3(1), 34.

    Mooney, R., Dempsey, C., Brown, B.J., Keating, F., Joseph, D., and Bhui, K. (2023). Using participatory action research methods to address epistemic injustices within mental health research and the mental health system.. Leader in Public Health, 111075363.

    Wang, C., & Burris, M.A. (1997). Photovoice: Concept, methodology and use for participant needs assessment.. health education and behavior, 24(3), 369-387.

    photo Credits

    dementia experience Lived Photovoice
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