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Patient and companion concerns when receiving a dementia diagnosis: an observational study of dementia diagnosis feedback meetings

Published online by Cambridge University Press:  16 April 2018

PENNY XANTHOPOULOU Open the ORCID record for PENNY XANTHOPOULOU [Opens in a new window] ,
JEMIMA DOOLEY ,
ILARIA MEO ,
NICK BASS  and
ROSE MCCABE
PENNY XANTHOPOULOU*
Affiliation:
Medical School, University of Exeter, UK.
JEMIMA DOOLEY
Affiliation:
Medical School, University of Exeter, UK.
ILARIA MEO
Affiliation:
Faculty of Medicine and Psychology, Sapienza University, Rome, Italy.
NICK BASS
Affiliation:
Division of Psychiatry, University College London, UK.
ROSE MCCABE
Affiliation:
Medical School, University of Exeter, UK.
*
Address for correspondence: Penny Xanthopoulou, University of Exeter Medical School, College House, St Luke's Campus, Exeter EX1 2LU, UK E-mail: [email protected]
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Abstract

Receiving a diagnosis of dementia is a life-changing event and can cause strong emotional reactions. The aim of this study was to examine patient and companion concerns expressed during dementia diagnosis feedback meetings. Sixty consultations between 19 health-care professionals (HCPs), 60 patients and 59 companions were video-recorded and transcribed. Concerns were identified from the transcripts and were (a) content analysed, (b) coded as elicited by the HCP or volunteered by the patient or companion, and (c) coded according to whether the HCP encouraged or discouraged elaboration of the concern. A total of 249 concerns were identified (average four concerns per consultation). There were three areas of findings: (a) patients and companions were concerned about the symptoms of dementia and receiving a diagnosis; other concerns related to patients’ mental and physical health, and prognosis, (b) HCPs elicited more patient than companion concerns and mostly elicited concerns aligned with the agenda of diagnosis feedback, and (c) HCPs were more likely to encourage elaboration when they elicited the concern. Nearly 40 per cent of concerns were discouraged by the HPC changing topic, with concerns about prognosis most commonly discouraged. The findings suggest that there were a wide variety of concerns at dementia diagnosis, many extending beyond the experience of dementia symptoms. HCP avoidance of concerns about prognosis demonstrated delicacy in discussing the deteriorating course of dementia.

Keywords

dementiaconcerncommunicationmedical consultation
Type
Article
Information
Ageing & Society , Volume 39 , Issue 8 , August 2019 , pp. 1782 - 1805
Copyright
Copyright © Cambridge University Press 2018 

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References

Abley, C., Manthorpe, J., Bond, J., Keady, J., Samsi, K., Campbell, S., and Robinson, L. 2013. Patients’ and carers’ views on communication and information provision when undergoing assessments in memory services. Journal of Health Services Research and Policy, 18, 3, 167–73.Google Scholar
Alzheimer Europe 2016. National Dementia Strategies. Available online at http://www.alzheimer-europe.org/Policy-in-Practice2/National-Dementia-Strategies [Accessed 13 January 2017].Google Scholar
Alzheimer's Society 2014. Factsheet 426: Assessment Process and Tests. Available online at https://www.alzheimers.org.uk/info/20071/diagnosis/95/assessment_process_and_tests [Accessed 3 September 2017].Google Scholar
Aminzadeh, F., Byszewski, A., Molnar, F. J. and Eisner, M. 2007. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging and Mental Health, 11, 3, 281–90.Google Scholar
Bailey, C., Dooley, J. and McCabe, R. 2018. “How do they want to know?” Doctors’ perspectives on making and communicating a diagnosis of dementia. Dementia: The International Journal of Social Research and Practice. Published online 15 April 2018. https://doi.org/10.1177/1471301218763904.Google Scholar
Bamford, C., Lamont, S. and Eccles, M. P. 2004. Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19, 2, 151–69.Google Scholar
Black, B., Brandt, J., Rabins, P. V., Samus, Q. M., Steele, C. D., Lykestsos, C. G. and Rosenblatt, A. 2008. Predictors of providing informed consent or assent for research participation in assisted living residents. American Journal of Geriatric Psychiatry, 16, 1, 83–91.Google Scholar
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C. and Samus, Q. M. 2013. Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the Maximizing Independence at Home study. Journal of the American Geriatrics Society, 61, 12, 2087–95.Google Scholar
Blair, M., Marczinski, C. A., Davis-Faroque, N. and Kertesz, A. 2007. A longitudinal study of language decline in Alzheimer's disease and frontotemporal dementia. Journal of the International Neuropsychological Society, 13, 2, 237–45.Google Scholar
Brandes, K., Linn, A. J., Smit, E. G. and van Weert, J. C. 2015. Patients’ reports of barriers to expressing concerns during cancer consultations. Patient Education and Counseling, 98, 3, 317–22.Google Scholar
British Psychological Society 2008. Conducting Research with People Not Having the Capacity to Consent to Their Participation. A Practical Guide for Researchers. Available online at http://www.ed.ac.uk/files/atoms/files/bps_guidelines_for_conducting_research_with_people_not_having_capacity_to_consent.pdf [Accessed 20 September 2017].Google Scholar
Brooker, D. 2003. What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 3, 215–22.Google Scholar
Brown, J. 2015. Advance care planning in dementia. Lancet Psychiatry, 2, 9, 774–5.Google Scholar
Brown, R. F., Butow, P. N., Dunn, S. M. and Tattersall, M. H. 2001. Promoting patient participation and shortening cancer consultations: a randomised trial. British Journal of Cancer, 85, 9, 1273–9.Google Scholar
Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L., McNeilly, E. and Iliffe, S. 2012. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLOS Medicine, 9, 10, p.e1001331.Google Scholar
Bunn, F., Sworn, K., Brayne, C., Iliffe, S., Robinson, L. and Goodman, C. 2015. Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study. Health Expectations, 18, 5, 740–53.Google Scholar
Cahill, S. M., Gibb, M., Bruce, I., Headon, M. and Drury, M. 2008. ‘I was worried coming in because I don't really know why it was arranged’: the subjective experience of new patients and their primary caregivers attending a memory clinic. Dementia, 7, 2, 175–89.Google Scholar
Chrisp, T. A. C., Thomas, B. D., Goddard, W. A. and Owens, A. 2011. Dementia timeline: journeys, delays and decisions on the pathway to an early diagnosis. Dementia, 10, 4, 555–70.Google Scholar
Clague, F., Mercer, S., McLean, G., Reynish, E. and Guthrie, B. 2017. Comorbidity and polypharmacy in people with dementia: insights from a large, population-based cross-sectional analysis of primary care data. Age and Ageing, 46, 1, 33–9.Google Scholar
Del Piccolo, L., Goss, C. and Zimmermann, C. 2005. The third meeting of the Verona Network on Sequence Analysis: finding common grounds in defining patient cues and concerns and the appropriateness of provider responses. Patient Education and Counseling, 57, 2, 241–4.Google Scholar
Department of Health 2008. Guidance on Nominating a Consultee for Research Involving Adults Who Lack Capacity to Consent. Department of Health, London. Available online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_083131 [Accessed 6 August 2015].Google Scholar
Derksen, E., Vernooij-Dassen, M., Gillissen, F., Olde Rikkert, M. and Scheltens, P. 2006. Impact of diagnostic disclosure in dementia on patients and companions: qualitative case series analysis. Aging and Mental Health, 10, 5, 525–31.Google Scholar
Dooley, J., Bailey, C. and McCabe, R. 2015. Communication in healthcare interactions in dementia: a systematic review of observational studies. International Psychogeriatrics, 27, 8, 1277–300.Google Scholar
Fallowfield, L. J., Jenkins, V. A. and Beveridge, H. A. 2002. Truth may hurt but deceit hurts more: communication in palliative care. Palliative Medicine, 16, 4, 297–303.Google Scholar
Guss, R., Middleton, J., Beanland, T., Slade, L., Moniz-Cook, E., Watts, S. and Bone, A. 2014. Clinical Psychology in the Early Stage Dementia Care Pathway. The British Psychological Society, London.Google Scholar
Hancock, K., Clayton, J. M., Parker, S. M., Wal der, S., Butow, P. N., Carrick, S., Currow, D., Ghersi, D., Glare, P., Hagerty, R. and Tattersall, M. H. 2007. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliative Medicine, 21, 6, 507–17.Google Scholar
Hasselkus, B. R. 1994. Three track care: older patient, family member and physician in the medical visit. Journal of Aging Studies, 8, 3, 291–307.Google Scholar
Heritage, J. 2005. Revisiting authority in physician-patient interaction. In Duchan, J. F. and Kovarsky, D. (eds), Diagnosis as Cultural Practice. Mouton De Gruyter, New York, 83–102.Google Scholar
Hodge, S. and Hailey, E. 2015. Second English National Memory Clinics Audit Report. Royal College of Psychiatrists. Available online at http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/nationalclinicalaudits/memoryclinicsaudit.aspx [Accessed 10 August 2016].Google Scholar
Jones, D., Drew, P., Elsey, C., Blackburn, D., Wakefield, S., Harkness, K. and Reuber, M. 2016. Conversational assessment in memory clinic encounters: interactional profiling for differentiating dementia from functional memory disorders. Aging & Mental Health, 20, 5, 500–9.Google Scholar
Karlawish, J. 2008. Measuring decision making capacity in cognitively impaired individuals. Neurosignals, 16, 1, 91–8.Google Scholar
Karnieli-Miller, O., Werner, P., Aharon-Peretz, J., Sinoff, G. and Eidelman, S. 2012. Expectations, experiences, and tensions in the memory clinic: the process of diagnosis disclosure of dementia within a triad. International Psychogeritrics, 24, 11, 1756–70.Google Scholar
Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J. and Iliffe, S. 2013. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. British Journal of General Practice, 63, 606, e69–75.Google Scholar
McCabe, M., You, E. and Tatangelo, G. 2016. Hearing their voice: a systematic review of dementia family caregivers’ needs. Gerontologist, 56, 5, 70–88.Google Scholar
McCabe, R., Skelton, J., Heath, C., Burns, T. and Priebe, S. 2002. Engagement of patients with psychosis in the consultation: conversation analytic study. Commentary: understanding conversation. BMJ, 325, 7373, 1148–51.Google Scholar
McHugh, M. L. 2012. Interrater reliability: the kappa statistic. Biochemia Medica, 22, 3, 276–82.Google Scholar
McLean, M. and Armstrong, D. 2004. Eliciting patients’ concerns: a randomised controlled trial of different approaches by the HCP. British Journal of General Practice, 54, 506, 663–6.Google Scholar
Paddison, C. A., Saunders, C. L., Abel, G. A., Payne, R. A., Campbell, J. L. and Roland, M. 2015. Why do patients with multimorbidity in England report worse experiences in primary care? Evidence from the General Practice Patient Survey. BMJ Open, 5, 3, p.e006172.Google Scholar
Perry-Young, L., Owen, G., Kelly, S. and Owens, C. 2018. How people come to recognise a problem and seek medical help for a person showing early signs of dementia: A systematic review and meta-ethnography. Dementia, 17, 1, 34–60.Google Scholar
Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M. and Karagiannidou, M. 2016. World Alzheimer report 2016: improving healthcare for people living with dementia: coverage, quality and costs now and in the future. Alzheimer's Disease International. Available online at https://www.alz.co.uk/ [Accessed 15 December 2016].Google Scholar
Robinson, L., Bamford, C., Briel, R., Spencer, J. and Whitty, P. 2010. Improving patient-centered care for people with dementia in medical encounters: an educational intervention for old age psychiatrists. International Psychogeriatrics, 22, 1, 129–38.Google Scholar
Robinson, L., Clare, L. and Evans, K. 2005. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health, 9, 4, 337–47.Google Scholar
Sabat, S. R. 2005. Capacity for decision-making in Alzheimer's disease: selfhood, positioning and semiotic people. Australian & New Zealand Journal of Psychiatry, 39, 11/12, 1030–5.Google Scholar
Sakai, E. Y. and Carpenter, B. D. 2011. Linguistic features of power dynamics in triadic dementia diagnostic conversations. Patient Education and Counseling, 85, 2, 295–8.Google Scholar
Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S. and Bond, J. 2014. Negotiating a labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia. International Journal of Geriatric Psychiatry, 29, 1, 58–67.Google Scholar
Schreier, M. 2012. Qualitative Content Analysis in Practice. Sage, Thousand Oaks, CA.Google Scholar
Schubert, C. C., Boustani, M., Callahan, C. M., Perkins, A. J., Carney, C. P., Fox, C., Unverzagt, F., Hui, S. and Hendrie, H. C. 2006. Comorbidity profile of dementia patients in primary care: are they sicker?. Journal of the American Geriatrics Society, 54, 1, 104–9.Google Scholar
Silverman, D. 2006. Interpreting Qualitative Data: Methods for Analyzing Talk, Text and Interaction. Sage, Thousand Oaks, California.Google Scholar
Speechly, C. M., Bridges-Webb, C. and Passmore, E. 2008. The pathway to dementia diagnosis. Medical Journal of Australia, 189, 9, 487–9.Google Scholar
StataCorp 2015. Stata Statistical Software: Release 14. StataCorp LP, College Station, Texas.Google Scholar
Stevenson, F. A., Barry, C. A., Britten, N., Barber, N. and Bradley, C. P. 2000. HCP–patient communication about drugs: the evidence for shared decision making. Social Science & Medicine, 50, 6, 829–40.Google Scholar
The, A. M., Hak, T., Koëter, G. and van der Wal, G. 2000. Collusion in HCP–patient communication about imminent death: an ethnographic study. BMJ, 321, 7273, 1376–81.Google Scholar
Trahan, M. A., Kuo, J., Carlson, M. C. and Gitlin, L. N. 2014. A systematic review of strategies to foster activity engagement in persons with dementia. Health Education & Behavior, 41, 1 supplement, 70S–83S.Google Scholar
van der Roest, H. G., Meiland, F. J. M., Comijs, H. C., Derksen, E., Jansen, A. P. D., van Hout, H. P. J. and Dröes, R. M. 2009. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 5, 949–65.Google Scholar
Zaleta, A. K. and Carpenter, B. D. 2010. Patient-centered communication during the disclosure of a dementia diagnosis. American Journal of Alzheimer's Disease and Other Dementias, 25, 6, 513–20.Google Scholar
Zimmermann, C., Del Piccolo, L., Bensing, J., Bergvik, S., De Haes, H., Eide, H., Fletcher, I., Goss, C., Heaven, C., Humphris, G. and Kim, Y. M. 2011. Coding patient emotional cues and concerns in medical consultations: the Verona coding definitions of emotional sequences (VR-CoDES). Patient Education and Counseling, 82, 2, 141–8.Google Scholar
Zimmermann, C., Del Piccolo, L. and Finset, A. 2007. Cues and concerns by patients in medical consultations: a literature review. Psychological Bulletin, 133, 3, 438–63.Google Scholar