The psychological impact of the disclosure of the diagnosis of Alzheimer's disease on informal caregivers

Abstract

Introduction: Receiving an Alzheimer's disease (AD) diagnosis can be a distressing experience, for both the individual with the condition and the family. This cross-sectional study explored whether the disclosure of AD diagnosis generated post-traumatic stress symptoms (PTSSs) in caregivers and how this affected their psychological well-being.

Methods: Seventy-nine caregivers completed the Impact of Event Scale to assess any PTSSs related to the memory of AD disclosure and clinical scales to assess current psychological distress.

Results: After a mean of 3 years, 46% of caregivers showed moderate-to-severe PTSS (mean ± SD = 35.4 ± 6.8) related to the memory of AD disclosure. Compared to caregivers with subclinical/mild PTSSs, they reported significantly higher levels of burden, anxiety, and depressive symptoms, mainly related to intrusive thoughts.

Discussion: Diagnosis disclosure is a watershed point in caregivers' career and might have a long-term effect on their mental health. Effective communication strategies should be developed to mitigate its stressful impact.

Trial registration: Registered in ClinicalTrials.gov: NCT05780476.

Highlights: The AD diagnosis disclosure could lead to developing PTSSs. Higher PTSSs were associated with greater caregivers' psychological distress. PTSSs could foster long-term negative psychological vulnerability.

Keywords: Alzheimer's disease; caregiver; caregiver burden; disclosure; post‐traumatic stress symptoms.