Getting a Needed but Unwanted Answer: The Meaning and Impact of a Dementia Diagnosis for Spousal Caregivers

Abstract

Current recommendations by the Scottish Intercollegiate Guidelines Network (Guideline 86) emphasise the need for diagnostic and post-diagnostic information and support provided to people with dementia and their family members to be tailored to meet their needs. Whilst there is a wealth of literature quantifying attitudes towards diagnosis disclosure and satisfaction with practice, there is a lack of research which looks at the impact and meaning of a dementia diagnosis for familial caregivers, despite recognition that psychological reactions to a diagnostic disclosure are critical to understand to provide appropriate information and caregiver support (Carpenter & Dave, 2004). Using a qualitative methodology, the aim of the present study was to explore the meaning of a dementia diagnosis in a spousal partner and living with the early, post-diagnostic stage. Method Individual semi-structured interviews were carried out with 8 spouses of older adults, recently diagnosed with a dementia condition. All interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis (Smith, 1996). Findings Five super-ordinate themes emerged from the interviews: Getting an Answer ( You just need to get a name put to it ); Losses and Changes for Self; Changes in the Marital Relationship (Threats to Coupledom); Limiting the Emotional Impact of Diagnosis, and Preserving Normality. Conclusions Participant accounts suggest a dementia diagnosis is something viewed as needed but is associated with unwanted implications; posing a threat to the self and the marital relationship. Post diagnosis, spouses engage in a process of making sense of and protecting themselves against the impact of changes and sensed losses. It is recommended that post-diagnostic services should aim to support spousal caregivers 2 as they manage these experienced and anticipated losses. Appropriate support at this time may lessen the risk of psychological distress and carer difficulties at later stages. Suggestions for future research include the need for longitudinal research starting at the time of diagnosis to explore whether the meaning and impact of a dementia diagnosis for spousal caregivers shift over time.