Creating change: the experiences of women living with young onset dementia

Abstract

People with dementia have typically been treated as homogenous groups with little recognition of unique aspects of identities, including age and gender. The purpose of this paper is to illuminate the experiences of women living with young onset dementia which led them to take up advocacy roles as a result of their experiences. Five women from Canada who were diagnosed with young onset dementia and had then taken on advocacy roles were interviewed. Two main themes emerged–Moving In (the challenges of a diagnosis) and Moving On (into a new life). They described the challenges of a diagnosis as stopping work, being taken seriously, fighting for support, failing to meet requirements for programs and services, and changing relationships with friends. The challenges led them to move into a new life, accepting their diagnosis, and moving into new roles of advocacy and supporting others with dementia in their journey. Further research should seek to explore diversity, rather than treating people with dementia as the same.

Points of interest

• The experience of dementia is different for everyone. From getting a diagnosis to living a life with dementia, these experiences are unique.

• Based on interviews with five women living with dementia diagnosed before age 65, it was found that the challenges of getting a diagnosis led the women to become advocates for supporting others with dementia in their journey.

• The challenges of a diagnosis included stopping work, being taken seriously, fighting for support, not meeting requirements for programs and services, and changing relationships with friends.

• As a result of their experiences, the women moved on into a new life, accepting their diagnoses, and taking on advocacy roles to create change for others living with dementia.

• The advocacy roles undertaken by these women demonstrate the need to recognize the unique aspects of people with dementia, in particular women with young onset dementia, without making assumptions that the experience of dementia is the same for everyone.

Keywords:

• Young onset dementia
• women
• gender
• advocacy
• dementia

Acknowledgements

The authors would like to thank Dr. Philip Caffery and David Harvey for their assistance and contributions to this project. The authors would also like to acknowledge Dr. Ruth Bartlett, University of Southampton, and her inspiration for this work. Most importantly, the authors would like to thank the women who shared their stories.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This project was funded by a grant from Women’s College Hospital–Women’s Xchange.