"I am not dementia" : Lived Experiences of Younger People with Dementia and their Spouses

Abstract

Context: An estimated 70,000 people in New Zealand (NZ) have dementia. Most of these people are over 65, but a significant number, approximately 5,000, of younger people are in the early stages of building a life with a partner and family. Aim and Objectives: This study describes the lived experiences of younger people with dementia and their spouses. Objectives: 1) Provide a space for younger people with dementia and their spouses to talk about their thoughts and feelings and share the meanings they give to their lived experiences. 2) Describe the couples’ relational dynamics and discover how their relationship evolves. 3) Present evidence of individual and shared adjustments for coping with dementia and translate this information into social and health service provisions for young people with dementia (YPWD) and their carers. Methods: The participants were young people with dementia and their partners who live in Auckland, New Zealand. Their lived experiences were portrayed using Interpretative Phenomenological Analysis (IPA). Four couples were recruited from a local dementia support service. They were interviewed twice, in a dyad and individually, using a semi-structured interview approach. The interview transcripts were analysed inductively for common themes. Member validation confirmed and clarified the researcher’s interpretation of the data. Results: Three themes were: 1) Factors that affected the couples’ lives the most, 2) Coping with dementia, and 3) Changes in spousal dynamics. Conclusion: YPWD and their carers have unique experiences distinguishing them from older adults with dementia (OAD). These differences must be carefully considered to enable age-appropriate services for this minority group.