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Discussing Dementia: An Academic Perspective

Posted by Carson Collaborator on

Today on our blog, we are joined by Dr. Kimberly Lopez from the University of Waterloo. She shares her academic perspective on dementia and how she approaches dementia in research.

Before we begin, can you please share a brief introduction about yourself?

Sure! I work as assistant professor in the Department of Recreation and Leisure Studies at the University of Waterloo in Ontario, Canada. I am interested in critiquing social structures and processes that reinforce difference and marginalisation (e.g., what it means to navigate the world living with a dementia diagnosis). As a community-engaged qualitative researcher, I sit on a diversity and inclusion in long-term care advisory board with the Centres of Learning, Research, and Innovation to advance the inclusion of all living in LTC homes in Canada. I value working collaboratively and creatively to amplify Othered meanings of identity, leisure, labour, care, aging, and well-being. I am inspired by all people and their passion stories and I look to influencers of anti-racist feminisms, decolonial/restorative practices, and post-identity literature/art to inform my work. I am interested in diverse forms of listening and telling story. For both work and leisure, I engage locally in human book clubs, digital storytelling, and porch chats. In my community, I am committed to social change and justice efforts through inclusive arts, organisation/activism, and transformational inquiry.

What does dementia mean to you?

Dementia is a biomedical label affixed to individuals who experience gradual changes in the brain that are associated with memory loss and other symptoms. This diagnosis has created dementia archetypes. For example, dementia is commonly associated with a loss of agency, increased dependence, and individuals who are older. This said, a lot of social stigma continues to surround the disease of dementia and individuals and families who live with a dementia diagnosis. When I think of dementia, I think of social impacts the diesease of dementia has on individual life stories, social relations, and our society as a whole and the ways individuals living with dementia challenge stereotypes and create hope for Others living with dementia.

How do you approach dementia in an academic setting and in research?

I approach dementia as a real biological disease with far-reaching social implications.

Well, I would say that my research related to dementia has changed a little over the course of my short career. Initially, I was interested in long-term care home resident wellness. With residents living in long-term care, including residents living with dementia, we created a shared understanding of what wellness looked like for residents by residents with perspectives from staff, family members, and volunteers. This co-created understanding of wellness facilitated conversations about how important one's relationships, perception of the home environment, self, and leisure were to feeling well in long-term care homes.

Now, I've shifted to understand wellness from a different perspective; that of care partners, specifically personal support workers employed in LTC homes. Often, individuals in helping professions, like care work, are overlooked despite intentions to care for all involved in caring relationships. I see that the issues that LTC homes have are systemic and care workers do all they can to support individuals living with dementia. Burnout and understaffing is common and, when incidents in LTC homes happen, PSWs are often scapegoated while systems - that create conditions for such issues to occur - are rarely critiqued harshly enough for the gaps in care that exist. I think everyone has a role to play in enhancing the social infrastructure of dementia care.

What have you learned about dementia in your academic and professional life?

Like anything else, an academic understanding of dementia (specifically, the label of dementia and its bio medical markers) is typically presented 2-dimentionally. Too often, academic understandings are valued as prevailing truth and do not reflect the breadth of lived experience and narratives of dementia as it is lived in our complex social world. Professionally, I've learned to know dementia as only one part of an individual's identity and see it as a label that effects family, friends, care workers, and society as a whole.

Are the supports and resources for persons with dementia and their care partners enough? Why or why not?

Historically dementia was largely left unseen due to the stigma associated with the disease. Now, through the culture change work happening in LTC homes across Canada, which aims to destigmatize dementia and further humanize LTC homes as places to live well, we are seeing more and more resources become available to individuals with dementia and their care partners. Through the newly released dementia care strategy in 2019, Canadians have a better understanding of ongoing dementia care efforts and where the gaps are.

What impact, if any, has dementia had on your life?

During my schooling, my time as a inclusive leisure practitioner, and now as a researcher I continue to learn from individuals living with dementia and their life stories. Teachings by individuals with dementia are profound and I continue to value the ways in which individuals living with dementia are their own advocates and continue forward justice movements on diagnoses related to memory loss. While I have not experienced immediate family affected by dementia, I've had first hand experience with the dementia journeys of individuals I've worked with and am aware of the amplified challenges faced by individuals living with dementia and their families in underprivilieged countries outside North America. Dementia affects society as a collective and we all have a responsibility to support efforts to reduce dementia stigma and support the fullest expression personhood for every individual, dementia diagnosis aside.

Thank you Dr. Lopez for sharing your perspective and weighing in on the conversation. Weigh in on our discussion in the comments below!

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