Alzheimer’s and emotions

Abstract

BACKGROUND:
Despite the fact that Alzheimer’s disease (AD) afflicts millions of people in the United States, most Americans do not come into contact with anyone who has the disease. Due to this lack of firsthand experience with AD, the general public’s understanding about the experiences of individuals living with the disease, and their framework of expectations about it, are often built on social representations—such as films.

OBJECTIVE :
We examined representations of the lived experience of an individual with AD in the film Still Alice using qualitative methodology.

METHOD:
The authors applied Interpretative Phenomenological Analysis (IPA), guided by Socio-emotional Adaptation Theory, to the film Still Alice. Following multiple careful readings of the film transcript, the authors observed the film while following the transcript, and finally viewed the film without referring to the transcript. Researchers created a provisional codebook defining overarching and
subordinate themes as they emerged throughout the film.

RESULTS:
The experience of living with AD was represented in Still Alice by spanning the trajectory from pre-diagnosis through late-stage dementia. Overarching themes (and subordinate themes) emerged as the film progressed. They included:
• Premorbid Context and Foreshadowing (Familial Relationships; Self-concept)
• Questioning Identity (Preservation of Self; Shifting Identity)
• Coping and Family Role Shifts (Coping; Changing Caregiver/Family Dynamics)

CONCLUSION:
The film Still Alice offers a first-hand representation of the experience of declining cognitive and physical abilities associated with AD. The protagonist’s personal struggles with her inevitable decline are interwoven within a complex web of her social relationships and psychosocial resources.