Dr. Hirst and Dr. LeNavenec are registered nurses. Both have retired from university teaching but remain committed to scholarly activities. They have worked together, for over three decades, to promote the quality of care for older adults in general and those experiencing dementia in particular. They recognize the importance of family in their conversations with older adults. Their collaboration includes undergraduate and graduate teaching, peer reviewed publications, scholarly research, and community service. The thread that flows through all their activities remains the health and well-being of older adults and those important to them.
Older Adults with Dementia: Their Stories Tell their Journeys
Sandra Hirst, University of Calgary, Canada
Carole-Lynne LeNavenec, University of Calgary, Canada
As humans we are narrative beings. Stories about our experiences are of enormous importance because they create our identities. Telling our stories is not an end in itself. We tell our stories to transform ourselves; to tell our experiences to transcend them; to use our stories to make a difference in our world.
Historically, the voices of older adults with dementia have been silent. It was often their families who spoke for them. However, recently the public literature has seen as increase in the number of personal narratives specific to the experience of dementia. These are stories told by those who have been diagnosed with dementia and wish to share their stories with others. They write to inform us, to help themselves on their journeys, and to inspire others who have also received a dementia diagnosis.
What are the journeys of older adults diagnosed with dementia?
Method: A scoping review of the narrative public literature was carried out to search for relevant books. Search terms used included: “personal story”, “dementia”, and “family”. Inclusion criteria: primary author diagnosed with dementia and written in the English language. Location strategies included searches of Google, Amazon, and the world Wide Web (WWW). In addition, the web sites of organizations found on the WWW specific to the needs of persons living with dementia and their families were searched. A list of books was compiled and reviewed by the research team, to date 32.
Descriptive data (gender of author, age of diagnosis, specific diagnosis) was compiled to facilitate understanding of personal dementia journeys. Thematic analysis was used to identify and categorise themes related to self-described experiences.
Themes that emerged included: self- advocate, suggestions, humour helps, and the travelled journey. It was interesting to note that a number of primary authors wrote several books as they travelled on their journeys.
The findings in this review provide a contribution towards understanding and supporting individuals diagnosed with dementia and their families.