Emotional experience in patients with advanced Alzheimer's disease from the perspective of families, professional caregivers, physicians, and scientists

ABSTRACT

Objectives: The objective of this qualitative study was to gain insight into families’ and professionals’ understanding of the emotional experience in patients with advanced Alzheimer's disease.

Method: A total of ten focus group interviews were carried out with 63 participants (relatives n = 20; caregivers n = 17; physicians n = 12; scientists n = 14) recruited using purposive sampling strategies. Each focus group was audiotaped, transcribed and analysed using the method of structured qualitative content analysis.

Results: Study findings show that for all groups with the exception of relatives, emotionality is one of the most important characteristics retained despite the illness. Indicators are patient's continued ability to produce emotional signals, be responsive to others, and retain emotional information despite memory loss. In the spectrum of emotions, professional caregivers emphasize positive emotional states more strongly than physicians or scientists. In contrast, relatives emphasize the loss of emotional experience. Critical indicators denying subjective emotional experience are impairment of (autobiographical) memory (especially the non-recognition of relatives), the reduction of means of verbal expression with simultaneous uncertainty in interpreting nonverbal expression as well as the perceived discrepancy between present emotional experience and behaviour and that of the premorbid personality.

Conclusion: When relatives anchor on the premorbid personality, the perceived discontinuity of emotional reactions to stimuli triggering an emotional response in contrast to their own expectations gives rise to an extremely ambiguous situation. Training programmes should be developed for families to help them comprehend and respond to nonverbal emotional expression.

KEYWORDS:

• Alzheimer's disease
• psychological and social aspects
• caregivers
• focus groups
• emotions

Acknowledgments

The study was part of the joint research project ‘Person and Dementia’ in the research priority programme ‘Ethical, Legal and Social Aspects of Modern Life Sciences’ (BMBF). The author would like to thank all relatives, professional caregivers, physicians, and scientists who participated in the study. Special thanks are due to Christian Roy-Pogodzik, who was involved in rating the focus group interviews.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by the Bundesministerium für Forschung und Technologie [grant number 01GP1002C].