Journal de la maladie d'Alzheimer et du parkinsonisme

Abstrait

Fear, Guilt and Shame in the Pre-Senior Offspring of Individuals Suffering from MidStage Dementia and Beyond

Nelson Pahl

Objectives: With this study, we looked to resolve three primary questions: 1. Do the offspring of individuals suffering from dementia feel guilty about their parent’s circumstances and the steps that offspring have taken in order to deal with the parent’s caregiving needs? 2. Does the offspring fear that they, too, will inevitably develop the disease? 3. Do they, the offspring, feel shame in regards to this genetic tendency? Methods: Fifty-three participants took part in an online Likert-scale survey that asked each to gauge the intensity of their fear of developing dementia themselves, their guilt in deciding their parent needed formal full-time caregiving aid, and the shame associated with their genetic tendency toward the disease. The questionnaire scored each answer on a scale of 1-5, with 1 being “not at all” and 5 being the most intense fear, guilt and/or shame. Results: Per fear, participants averaged a 3.30 score. Sixty-nine percent of those individuals replied “occasionally” or greater. In addition, the DLB subgroup averaged a score of 4.36. Per guilt, participants tallied an average score of 3.60. Seventy-four percent answered “occasionally” or greater. Also, the EOD offspring group recorded an average score of 4.19. Per shame, 15% of the overall group answered “occasionally” or higher, with the overall group averaging a score of 1.72. Conclusion: Our findings suggest that a majority of people with a parent suffering from mid-stage dementia and beyond are quite fearful they, too, will develop the disease. These individuals also feel significant guilt in regards to their parent’s disease and the caregiving decisions they, the offspring, have made in regards to that parent. And while the shame associated with genetic tendencies is not as intense as the fear or guilt, this study finds that stigma surrounding dementia does still exist.