Date of Award
Doctor of Philosophy (Ph.D.) Nursing
Approximately 5% of dementia sufferers are individuals younger than age 65. The majority of studies have focused on individuals with late-onset dementia. The limited studies conducted on caregivers of younger onset dementia individuals identify that they have a different set of needs based upon their unique experiences. Significant others such as spouses frequently fulfill the role of caregiver for a partner with younger onset dementia. Little is known about the lived experience of significant others caring for a partner with younger onset dementia in the context of relationship transition that occurs in this dynamic situation. This study illustrates the lived experience of that relationship transition as significant others care for a partner with younger onset dementia.
The purpose of this study was to explore and highlight the issues of concern for significant others caring for a partner with younger onset dementia, and discover the meanings significant others ascribe to the transition in their relationships.
A qualitative method and a phenomenological design were used to conduct this study and enhance what is known about the lived experience of the relationship transition in significant others caring for a partner with younger onset dementia. Institutional Review Board approval was granted by Molloy College. A phenomenological inquiry approach utilizing Parse’s method of dialogical engagement was the interview style (Parse, 1998). Face-to-face semi-structured interviews were conducted with nine women at a site of their choice during May 2016 through August 2016. Demographic data about the caregivers and their partners were collected. Interviews were digitally recorded and later transcribed. NVivo 11 software was used to organize data and support coding data for the development of themes.
All of the research participants were women married to their spouses for 8 to 51 years, living together at home. Five of the participants are currently employed outside the home, three are retired, and one is on a leave of absence because of her caregiving responsibilities. The participants ranged in age from 49 to 73 years old with a mean age of 59 (n=8, as one participant did not respond to the question). Educational levels varied as follows: three with master’s degrees, one with a bachelor’s degree, and five with high school diplomas. Race/ethnicity indicated by participants was eight white and one black. Three of the participants stated they had serious financial concerns, one reported occasional financial worries, and four selected secure and worry free.
The themes that emerged were: (1) The Way It Was Before Dementia, (2) A Maze of Uncertainty, (3) A Kaleidoscope of Feelings, (4) Shattered Dreams/Expectations, (5) A Solitary Journey, (6) The Struggle to Survive, and (7) Navigating Day-to-Day. Selected excerpts from the interview transcripts were used to illustrate the meaning of the themes as the subjects described their lived experience,
Summary and Recommendations
This study resulted in a greater understanding of the lived experience of relationship transition in significant others caring for a partner with younger onset dementia. Their stories were compelling as they conveyed their challenging daily experiences as caregivers, and permitted the readers to better understand their daily struggles. The voices of the participants described their challenges, fears, hopes, and satisfaction that others would hear their stories. The richness of data gleaned from this study provides inspiration to further explore this topic with subjects of both genders, and diversity in ethnicity, religion, and socio-economic status. An additional recommendation is to conduct a study with both members of the dyad to broaden the understanding of relationship transition in couples dealing with younger onset dementia
Peyser, Diane, "The Lived Experience of Relationship Transition in Significant Others Caring for a Partner with Younger Onset Dementia" (2017). Theses & Dissertations. 53.