The Dementia Diagnostic Process: The Caregiver’s Role and the Challenges Faced

TL;DR

This study explores the challenges caregivers face when seeking a dementia diagnosis for their spouse and the roles they take on during the process.

Contribution

The study identifies specific caregiver roles and challenges in the dementia diagnostic process, which are often overlooked in research.

Findings

Eight challenges were identified, including doctor-related and personal barriers during the diagnostic process.

Seven dynamic caregiver roles were identified, such as Fierce Advocate and Determined Investigator.

The study highlights the need to streamline the dementia diagnostic process for better caregiver and patient support.

Abstract

The objective of this study was to explore the role of the caregiver when seeking a dementia diagnosis for their spouse, as well as identify the challenges they faced. The process of seeking a dementia diagnosis can be a long and complex task, with numerous barriers along the way. Familial caregivers are deeply involved in this process, yet the role and challenges faced by caregivers are not often the focus of this type of research. Thematic analysis was used to explore caregivers’ experiences of seeking a dementia diagnosis for their spouse. This qualitative study included interviews from 18 caregivers. A number of challenges emerged consisting of both doctor-related barriers: (1) Doctors dismissing or ignoring concerns, (2) Unclear disclosure or miscommunication from doctors, (3) Long, complicated, many step process, (4) Misdiagnosis or mistreatment, (5) Lengthy and frustrating evaluations; and personal or disease-related barriers: (6) Misattribution of symptoms, (7) Fear of hurting their spouse’s feelings, and (8) Denial or hesitancy from their spouse. Seven fluid and dynamic caregiver roles were also identified: Fierce Advocate, The Bad Guy, Determined Investigator, Team Player, Secret Agent, Fearful Fighter, and Pragmatic Realist. These findings provide insight into the complex role caregivers play when seeking a dementia diagnosis for their spouse, and may provide both healthcare professionals and fellow caregivers with an understanding of what this process entails. This study highlights the urgent need to streamline the diagnostic process for people with dementia and their caregivers.