Skip to main content
    • Aa
    • Aa

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

  • Orit Karnieli-Miller (a1) (a2), Perla Werner (a3), Judith Aharon-Peretz (a4), Gary Sinoff (a3) (a5) and Shmuel Eidelman (a2) (a4)...

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.

Corresponding author
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:
Linked references
Hide All

This list contains references from the content that can be linked to their source. For a full set of references and notes please see the PDF or HTML where available.

W. F. Baile , R. Buckman , R. Lenzi , G. Glober , E. A. Beale and A. P. Kudelka (2000). SPIKES – a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist, 5, 302311.

C. Bamford , S. Lamont , M. Eccles , L. Robinson , C. May and J. Bond (2004). Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19, 151169.

B. Carpenter and J. Dave (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. Gerontologist, 44, 149158.

B. D. Carpenter et al. (2008). Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment. Journal of the American Geriatrics Society, 56, 405412.

L. Clare (2004). The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models. British Journal of Clinical Psychology, 43, 155175.

P. F. Cornett and J. R. Hall (2008). Issues in disclosing a diagnosis of dementia. Archives of Clinical Neuropsychology, 23, 251256.

I. Draskovic , M. Vernooij-Dassen , F. Verhey , P. Scheltens and M. O. Rikkert (2008). Development of quality indicators for memory clinics. International Journal of Geriatric Psychiatry, 23, 119128.

J. D. Fisk , B. L. Beattie , M. Donnelly , A. Byszewski and F. J. Molnar (2007). Disclosure of the diagnosis of dementia. Alzheimer's & Dementia, 3, 404410.

S. Z. George and M. E. Robinson (2010). Preference, expectation, and satisfaction in a clinical trial of behavioral interventions for acute and sub-acute low back pain. Journal of Pain, 11, 10741082.

R. P. Hayes and A. N. Naegeli (2010). The contribution of pretreatment expectations and expectation–perception difference to change in treatment satisfaction and end point treatment satisfaction in the context of initiation of inhaled insulin therapy in patients with type 2 diabetes. Diabetes Technology Therapy, 12, 447453.

M. Kaplan (2010). SPIKES: a framework for breaking bad news to patients with cancer. Clinical Journal of Oncological Nursing, 14, 514516.

O. Karnieli-Miller , P. Werner , J. Aharon-Peretz and S. Eidelman (2007). Dilemmas in the (un)veiling of the diagnosis of Alzheimer's disease: walking an ethical and professional tight rope. Patient Education and Counseling, 67, 307314.

O. Karnieli-Miller , A. Taylor , A. H. Cottingham , T. S. Inui , R. T. Vu and R. M. Frankel (2010). Exploring the meaning of respect in medical student education: an analysis of student narratives. Journal of General Internal Medicine, 25, 13091314.

R. L. Kravitz (2001). Measuring patients’ expectations and requests. Annals of Internal Medicine, 134, 881888.

M. L. Laakkonen et al. (2008). How do elderly spouse companions of people with Alzheimer disease experience the disclosure of the dementia diagnosis and subsequent care? Journal of Medical Ethics, 34, 427430.

J. Lecouturier et al. (2008). Appropriate disclosure of a diagnosis of dementia: identifying the key behaviors of “best practice.” BMC Health Services Research, 8, 95.

C. J. Main , R. Buchbinder , M. Porcheret and N. Foster (2010). Addressing patient beliefs and expectations in the consultation. Best Practice & Research: Clinical Rheumatology, 24, 219225.

C. Monaghan and A. Begley (2004). Dementia diagnosis and disclosure: a dilemma in practice. Journal of Clinical Nursing, 13, 2229.

S. J. O'Connor , H. Q. Trinh and R. M. Shewchuk (2000). Perceptual gaps in understanding patient expectations for health care service quality. Health Care Management Review, 25, 723.

A. L. Robinson , C. G. Emden , J. A. Elder , E. J. Lea , J. C. Vickers and P. A. Turner (2008). Multiple views reveal the complexity of dementia diagnosis. Australian Journal of Aging, 27, 183188.

R. Ruiz-Moral , L. A. Perula de Torres and I. Jaramillo-Martin (2007). The effect of patients’ met expectations on consultation outcomes: a study with family medicine residents. Journal of General Internal Medicine, 22, 8691.

E. Y. Sakai and B. D. Carpenter (2011). Linguistic features of power dynamics in triadic dementia diagnostic conversations. Patient Education and Counseling, 85, 295298.

H. Van Hout , M. Vernooij-Dassen , W. Hoefnagels and R. Grol (2001). Measuring the opinions of memory clinic users: patients, relatives and general practitioners. International Journal of Geriatric Psychiatry, 16, 846851.

M. F. Vernooij-Dassen , H. J. Van Hout , K. M. Hund , W. L. Hoefnagels and R. T. Grol (2003). Information for dementia patients and their companions: what information does a memory clinic pass on, and to whom? Aging Mental Health, 7, 3438.

H. Villars et al. (2010). The primary care physician and Alzheimer's disease: an international position paper. Journal of Nutrition, Health & Aging, 14, 110120.

C. Wald , M. Fahy , Z. Walker and G. Livingston (2003). What to tell dementia caregivers – the rule of threes. International Journal of Geriatric Psychiatry, 18, 313317.

P. Werner , A. Gafni and E. Kitai (2004). Examining physician–patient–companion encounters: the case of Alzheimer's disease patients and family physicians in Israel. Aging & Mental Health, 8, 498504.

P. Werner , O. Karnieli-Miller , A. Adler and S. Eidelman (2010). How neurologists tell their patients with Alzheimer's disease about their diagnosis: a short communication about another side to Tarek et al.'s paper. Alzheimer Disease & Associated Disorders, 24, 115117.

E. Zebiene , I. Svab , J. Kairys , M. Dotsenko , S. Radic and M. Miholic (2008). Agreement in patient–physician communication in primary care: a study from Central and Eastern Europe. Patient Education and Counseling, 73, 246250.

Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Altmetric attention score

Full text views

Total number of HTML views: 6
Total number of PDF views: 36 *
Loading metrics...

Abstract views

Total abstract views: 169 *
Loading metrics...

* Views captured on Cambridge Core between September 2016 - 19th September 2017. This data will be updated every 24 hours.