International Psychogeriatrics

Research Article

Expectations, experiences, and tensions in the memory clinic: the process of diagnosis disclosure of dementia within a triad

Orit Karnieli-Millera1a2 c1 *, Perla Wernera3 *, Judith Aharon-Peretza4, Gary Sinoffa3a5 and Shmuel Eidelmana2a4

a1 Department of Community Mental Health, University of Haifa, Haifa, Israel

a2 Center for Excellence in Patient–Professional Relationships in Health Care Professions, University of Haifa, Haifa, Israel

a3 Department of Gerontology, University of Haifa, Haifa, Israel

a4 Rambam Medical Center, Haifa, Israel

a5 Carmel Medical Center, Haifa, Israel

ABSTRACT

Background: Health communication studies emphasize the importance of addressing the needs and expectations of patients and families with the disclosure of grave medical conditions. However, little attention has focused on their expectations and experiences of the clinical encounters in diagnosis disclosure of dementia.

Methods: In-depth post-encounter interviews with ten patients and 17 companions from two memory clinics in Israel were analyzed using grounded theory. The analysis focused on identifying their expectations, their experiences, and their perceptions of the process and outcomes.

Results: Major differences exist between patients’ and companions’ expectations. Patients’ expectations were an expression of the lack of knowledge/understanding of the visit's purpose and of insight into the memory deterioration. Companions had more clear-cut expectations: some desired confirmation of the legitimacy and pertinence of their concerns about their relatives’ memory problem, whereas others hoped to allay their concerns. Patients’ dissatisfaction stemmed mostly from their perceptions of the process, communication, and outcome. Companions’ dissatisfaction stemmed from lack of information or of tailored follow-up processes for implementing recommendations provided by the clinic.

Conclusions: Our findings expose two main issues challenging fulfillment of the different and frequently opposing expectations of patients and companions. The first is a consequence of the multi-participant nature of the encounter and the second relates to the character and severity of the disease itself. The discordance between the expectations of the two participants generates conflicts that interfere with meeting their diverse needs within the encounters – with consequent disappointment. The implications of these issues merit consideration in the planning of dementia management.

(Received January 02 2012)

(xxxJanuary 24 2012)

(xxxApril 17 2012)

(Accepted April 17 2012)

(Online publication June 12 2012)

Key words:

  • breaking bad news;
  • triadic communication;
  • tailored communication;
  • Alzheimer's disease

Correspondence:

c1 Correspondence should be addressed to: Orit Karnieli-Miller, PhD, Department of Community Mental Health, Room No. 1111, University of Haifa, Har HaCarmel, Haifa, 31905, Israel. Phone: +972-4-8288643; Fax: +972-4-8288723. Email: oritkm@gmail.com.

Footnotes

*  Equal contribution of the two authors