Exploring the Lived Experiences of Male Spouse Caregivers Providing Care for a Female Partner with Younger Onset Dementia- An Interpretative Phenomenological Analysis

Anne E Matthews

Background Providing care for a person with dementia is challenging, particularly for a spouse caregiver who lives with a person with Younger Onset Dementia (YOD). Most people with YOD are cared for by their partners and there are noted to be gender differences in caregiving which are believed to impact the caregiving experience. As the incidence of dementia is slightly higher in females moving forwards, there will be more males in a caregiving role for a female partner. Purpose The purpose of this study was to explore and describe the lived experiences of male spouse caregivers who provide care for a female partner with Younger Onset Dementia in Western Australia (WA) with a focus upon preparedness for caregiving, spousal relationship, community support and complexity of diagnosis. The research question was what is the experience of males providing care to their female partner with YOD in Western Australia? The specific objectives were to: • To explore male spouse caregivers’ experience of feeling prepared for the caregiving role. • To explore male spouse caregivers’ experience regarding their partner’s YOD diagnosis. • To explore the experiences of the male spouse caregiver regarding the spousal relationship and perceptions of potential support mechanisms. • To explore the male spouse caregiver’s experience of accessing community services and their considerations for future support to improve their caregiving experience. Methodology A qualitative design with Interpretative Phenomenological Analysis (IPA) was used. Male spouse caregivers of female partners with YOD were recruited from three research settings in Western Australia using purposive sampling. Semi- structured one – to - one interviews were audio - recorded and transcribed verbatim for manual data analysis, guided by an IPA framework. Findings Six males in a caregiving role for their female partner with YOD participated in this study. Four themes were identified from the data analysis which described the male caregivers’ experiences: The Experience of Diagnosis and Beyond, The Protector, The Navigator of Systems, Processes, and People, and Being a Caregiver. The males revealed that the journey to diagnosis and beyond was stressful and full of uncertainty and they increasingly took on a protective role for their partner, as their own caregiver needs became lower priority. Although the males recognised a need for assistance to care for their partner, accessing this assistance posed challenges. Conclusion The findings from this study revealed that the males had taken on many aspects of caregiving and were trying to care for their female partner with the support of friends, family, and formal support. Although they recognised the need to maintain their own wellbeing, their priorities had changed, and their needs ranked lower than that of their female partner. Overall, the findings from this study recognise that whilst formal support is available, support for males caring for their female partner with YOD specifically, is limited and the males would benefit from increased emotional support throughout the journey and beyond. There is future opportunity to raise awareness, inform change to practice, and enhance opportunity for future research aimed at the development of gender specific interventions tailored to the needs of male spouse caregivers in WA. The six study participants in their role as caregivers, gave willingly of their time and were eager to share their experiences. Given that they were at various stages in their journeys as a caregiver for their female partner with YOD, their stories elicited both negative and positive responses. Some participants expressed emotion, crying at certain points in the interview, whilst others described their feelings of sadness, frustration, and anger. All the participants expressed gratitude for the chance to share their personal stories with a number saying they had never previously had this opportunity. Throughout the duration of this study, it has become apparent that each participant’s experience of the dementia journey is unique.

Exploring the Lived Experiences of Male Spouse Caregivers Providing Care for a Female Partner with Younger Onset Dementia- An Interpretative Phenomenological Analysis

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