Seeking collaboration with communities to raise awareness of Dementia

My name is Sadaf Murad-Kassam. I am a former Emergency nurse at Aga Khan University Hospital Karachi, Pakistan. I did a bachelor’s in nursing from [Aga Khan University School of Nursing] in Karachi, and came to the University of Alberta [Edmonton, Canada] in 2013 to pursue a master’s in nursing. I am a registered nurse and faculty lecturer at the University of Alberta.

I have vast experience working with older adult patients at acute and long-term care institutions. I am currently a doctoral student in the Faculty of Nursing at the University of Alberta. My doctoral work examines the hospitalization experience of ethno-racial older adults from South Asia and Arab communities with dementia and identifies the ways to create culturally sensitive dementia practices in hospital settings.

I recently received two prestigious awards from the Alzheimer’s Society of Canada and from Alberta Patient-oriented Research to support my doctoral study. I originally belonged to the South Asian community and had a family member who passed away due to dementia and negligence from healthcare workers. I am interested in gender diversity and racial equity in ethno-racial communities, most specifically in older adults. Older adults from ethnic communities often face various disparities and structural barriers in accessing equitable healthcare services. Discrimination and racism in healthcare practices towards ethnic individuals, especially older adults with dementia, create more barriers for them and their caregivers in accessing culturally sensitive care.

South Asians and Arabs are the fastest-growing racialized communities worldwide, migrating in greater numbers and living with dementia. However, the awareness related to dementia and acceptance of it within the community as a brain disease is limited. In South Asian and Arab communities, dementia is often considered a stigma and taboo, and family members are often denied to share the diagnosis of dementia with other community members due to fear of stigma.  Due to stigma, most often, ethnic communities avoid hospitalization until it is life-threatening. Lack of awareness related to dementia and the stigma associated with it creates hurdles for ethnic communities to seek dementia care. Ethnic communities often avoid taking their loved ones with dementia at religious and public gatherings due to the taboo attached to it. To improve the acceptance in ethnic communities related to dementia and raise awareness, there is a high need and demand to work collectively in research, practice and community. Ethno-racial communities face challenges in receiving.

I am interested in collaborating with the global Ismaili community, Aga Khan Health Board Canada and USA. I am also looking to collaborate with South Asian and Central Asian Ismaili communities to raise awareness about dementia within our community and global Jamat.  My goal is to create culturally oriented resources to help them access healthcare and community resources.