We live in an ageing society where the number of older adults, including those living with dementia will increase forming a significant portion of the population in the next decades. As our population ages, the World Health Organization (WHO) has identified ageism as a significant global health issue. Negative attitudes towards older adults and people living with dementia are associated with negative health outcomes, loneliness, and poor quality of life. Stigmas associated with age and dementia begin in childhood driven by familial, societal, and media influences. Subsequently, the WHO has recommended addressing ageism through education and intergenerational connections. Our project aims to address age and dementia related stigmas by bringing together a diverse team to work collaboratively on the design and development of age and dementia learning activities aimed at students in grades K-5. Typically, intergenerational education has been developed outside of mandated curriculums. Our project addresses this important gap by aligning intergenerational education activities with the BC curriculum objectives, making it easier for classroom teachers to find opportunities to incorporate these activities within their educational planning.
Award Partner: Alzheimer Society of B.C.
Addressing stigma of dementia on social media: Collaboration, innovation, and knowledge translation
Stigma of dementia is a critical issue that reduces the quality of life of people living with dementia and their family care partners. Existing research shows that dementia education and awareness campaigns are urgently needed to address stigma of dementia on social media. More specifically, our research found that dementia-related stigma on social media fosters stereotypes, misinformation, and discrimination. How we talk about dementia shapes how policymakers, health professionals, and the public value the lives of people with dementia.
The purpose of this project to enhance dementia awareness and education to target dementia-related stigma on social media. Working in collaboration with our B.C. community partners, healthcare professionals, student trainees, and people living with dementia and their care partners, we will develop a hybrid Café Scientifique that will consist of both an in-person and online panelist discussion on stigma of dementia that is open to the general public. We will also create an infographic to counter dementia-related stigma on social media. This initiative will foster dementia awareness and education on social media to reduce stigma and enhance the quality of lives of people living with dementia.
Extending the Reach of the Flipping Stigma on its Ear Toolkit: Translating and Transforming the Toolkit for the Chinese Community
The purpose of this knowledge translation project is to extend the reach of the Flipping Stigma on its Ear Toolkit, a research output that is a web-based education and advocacy tool developed by an Action Group of people with lived experience of dementia. Currently this toolkit (flippingstigma.com), which is focused on addressing dementia-related stigma and discrimination, is only available in English. This project will focus on translating and transforming the toolkit for the Chinese community. We will do this by working closely with a Knowledge Translation Team (KTT) of people with lived experience of dementia, care partners, health care professionals, and other members of the Chinese community. We will first arrange for a translation of the toolkit into Traditional Chinese characters. A beta version of the Chinese toolkit will be created online. Then our team will meet with the KTT over a series of online meetings to review the beta version. The goal of these KTT meetings will be to explore the beta version (translated) of the toolkit and help to transform it into a culturally relevant and sensitive tool for the Chinese community. As a final outcome of this project, a Chinese version of the toolkit will be officially released.
Addressing inter-individual variability in aging: linking lifestyle factors to the brain and behaviour
Cognitive decline is associated with a variety of neurodegenerative disorders and is increasingly prevalent in Canada’s aging population. One of the most effective means to counteract cognitive decline is to maintain or enhance cognitive reserve. Lifestyle factors have been shown to impact cognitive reserve, but this impact varies highly across individuals. Most investigations into the effects of lifestyle factors on behavior and neural function do not capture this inter-individual variability and produced mixed, difficult to reproduce findings. This research aims to reduce this variability by clustering the population into sub-types based on their susceptibility to lifestyle changes before investigating the causal relationships between lifestyle factors, behaviour and neural function. The identified causal relationships will serve as promising targets for future clinical interventions in sub-types of our aging population that can limit the effects of cognitive decline and lower the rates of neurodegenerative diseases. In addition to the classical means of knowledge translation, this research will be shared through public presentations held by the Institute of Neuroscience and Neurotechnology at Simon Fraser University.
Engagement and citizenship in long-term care: An exploration of resident and family councils
Resident and family councils refer to groups within long-term care (LTC) homes composed of residents and/or family members who meet on a regular basis to discuss matters of concern. In B.C., LTC residents and their family members have the right to participate in these councils, providing a potential avenue to influence decision-making. However, little is known about these councils, how they work, and whether they enable residents and families to influence change.
My postdoctoral research aims to address this knowledge gap through a qualitative study exploring how LTC councils work, how they engage residents and families in decision-making, and the broader contexts in which they operate. First, we will analyze the legal frameworks governing resident and family councils across Canada and compare how they define councils and the specific rights they afford. To explore how councils operate in practice, we will conduct ethnographic fieldwork in two LTC homes. Researchers will observe council meetings and conduct in-depth interviews with residents, family members and staff. Findings from the study will be used to create user-friendly resources highlighting promising approaches and policy recommendations.
Co-Creating Age and Dementia-Friendly Communities: A Community Engaged Program of Research
Worldwide, there is increased interest in developing age and dementia-friendly communities. This is because communities, organizations, and policy makers recognize the need to make the community setting a place where people can “age in place” and experience quality of life, while living with conditions such as dementia. It is important that older people with dementia have a say in the development of communities meant to support them. As such, this community-engaged research program addresses this need, by engaging directly with people with lived experience. The goal of this research program is to build a Community Action Group (CAG) of people with dementia, and to conduct co-research with the CAG. This means that the CAG will collaborate with the research team to plan and take part in a variety of research activities (such as co-design workshops) that will inform development of age and dementia-friendly communities. This will not only lead to meaningful change in communities, but will empower people living with dementia. Research of this nature will also impact future research by demonstrating the possibilities of collaborating and co-researching with people with lived experience, in order to make meaningful social change happen.
Mapping the musical brain in dementia
Music is an important part of life for individuals with dementia and their loved ones. Numerous clinical studies have detailed music’s positive effects on quality of life in dementia care, however, much is still unknown about how music is processed in the brain, and how the brain adapts to neurodegeneration in dementia to maintain a connection to music. This is an important unanswered question as many assessment tools do not allow us to look at brain activity with persons with dementia in a way that is enjoyable and accessible to the individual. This project will record brain data during music listening and analyze the resulting brain network data for age- and diagnosis-related patterns. Music helps stimulate memories and promotes social interaction with loved ones, making it a beneficial addition to the lives of individuals with dementia. However, much still needs to be discovered about how and why music works. This study will provide information that can help improve access to music-based therapies for individuals with dementia in BC and will give researchers a greater understanding of brain adaptation in dementia.
Multisensory integration in aging and Alzheimer’s disease
As people age, their senses become less sharp. Healthy older adults can combine information from different senses, such as hearing and vision, to make up for this. Alzheimer’s disease attacks the areas of the brain that combine sensory information. Because of this, Alzheimer’s disease patients may lose the ability to compensate for reduced sensation. This could explain why Alzheimer’s disease patients have a much larger risk of serious falls.
For my project, I will study the brain activity involved in combining information across different senses. I will record brain activity from healthy young adults, healthy older adults, and Alzheimer’s disease patients. The participants will perform a task requiring them to quickly and accurately combine visual and auditory information. I will compare recordings from the different groups to see how aging and Alzheimer’s disease affect the brain activity.
The information I learn from my project will inform approaches to treatment and accommodation. My ultimate goal is to help people live fuller, more independent lives as long as possible.
Developing a Research Agenda to Address Stigma of Dementia in Rural Communities in Interior British Columbia
Stigma of dementia is one of the greatest barriers for people living with dementia and their care partners. It can lead to poor mental health, social isolation, and a reduced quality of life. Currently, there is a paucity of research on stigma of dementia within a rural context. Rural communities often face unique challenges to accessing dementia information compounded by limited finances, transportation, and geography. However, documenting challenges alone does not improve stigma of dementia. Addressing stigma requires rural collaboration and ingenuity at the individual, community, and policy levels.
This project’s purpose is to support collaboration between researchers and research users to develop a research agenda with identifiable research questions, action items, and deliverables. We will plan a knowledge exchange workshop with a specific focus on developing a research agenda to reduce rural stigma of dementia in Interior British Columbia. Our outcomes will include a research advisory team, a knowledge exchange workshop, and a collaborative research agenda with specific research questions and strategic recommendations to reduce stigma of dementia in rural communities in Interior BC.
Dementia Friendly Communities: Bringing to the Fore the Perspectives and Needs of People with Dementia Who Live Alone
The concept of Dementia Friendly Communities (DFCs) is becoming popular worldwide, as communities, organizations, and policy makers work to make our society a place where people living with dementia can live in comfort, strive for wellbeing, and feel connected to others. However, people with dementia who live alone have not really been included in conversations about and planning for DFCs. This is a significant gap, especially since people with dementia who live alone are a growing group of people. This project aims to address this gap, and to include people with dementia who live alone in co-designing an Action Plan that will lay the groundwork for future planning of DFCs, that takes into account their voices and perspectives. This work will involve an Action Group (AG) of people with dementia who live alone in different communities across BC. 8-10 people will join the AG, and will participate in 5 online co-design workshops to develop an Action Plan. The co-design workshops will be led by a team of designers from the Health Design Lab at Emily Carr University of Art + Design. The Health Design team will work in partnership with the project team and AG to co-design the Action Plan, and plan next steps for ongoing work.