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.
