Références pour les directives nationales

Références utilisées dans les Directives nationales sur la communication d’un diagnostic de trouble neurocognitif.

Many medical scans of the human brain

Revue rapide

Alzheimer’s Disease International. (2017). Dementia friendly communities: Global developments. https://www.alzint.org/resource/dementia-friendly-community-resources/

Alzheimer’s Disease International. (2018). Dementia facts & figures. https://www.alzint.org/about/dementia-facts-figures/

Alzheimer’s Disease International. (2019). World Alzheimer report 2019: Attitudes to dementia. https://www.alzint.org/resource/world-alzheimer-report-2019/

Alzheimer’s Disease International. (2021). World Alzheimer report 2021: Journey through the diagnosis of dementia.

Alzheimer’s Disease International. (2022). World Alzheimer report 2022: Life after diagnosis: Navigating treatment, care and support.

Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A. et Kudelka, A. P. (2000). SPIKES-A six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist, 5(4), 302–311. https://doi.org/10.1634/theoncologist.5-4-302

Bailey, C., Dooley, J. et McCabe, R. (2019). ‘How do they want to know?’ Doctors’ perspectives on making and communicating a diagnosis of dementia. Dementia (London, England), 18(7-8), 3004–3022.https://pubmed.ncbi.nlm.nih.gov/29658306/

Bennett, C. E., De Boos, D. et Moghaddam, N. G. (2019). Developing a tool to support diagnostic delivery of dementia. Dementia (London, England), 18(7-8), 2505–2525.

Carpenter, B. et Dave, J. (2004). Disclosing a dementia diagnosis: A review of opinion and practice, and a proposed research agenda. The Gerontologist, 44(2), 149–158.

Carpenter, B. D. et Gooblar, J. (2018). Disclosing a neurodegenerative diagnosis: The complexities of telling and hearing. In G. E. Smith & S. T. Farias (Eds.), APA handbook of dementia (pp. 487–500). American Psychological Association.
https://psycnet. apa.org/record/2018-19589-026

Caruana-Pulpan, O. et Scerri, C. (2014). Practices in diagnosis, disclosure and pharmacotherapeutic management of dementia by general practitioners--a national survey. Aging & Mental Health, 18(2), 179–186. https://pubmed.ncbi.nlm.nih.gov/23869797/

Derksen, E., Vernooij-Dassen, M., Scheltens, P. et Olde-Rikkert, M. (2006). A model for disclosure of the diagnosis of dementia. Dementia, 5(3), 462-468.

Dooley, J., Bass, N. et McCabe, R. (2018). How do doctors deliver a diagnosis of dementia in memory clinics? The British Journal of Psychiatry: The Journal of Mental Science, 212(4), 239–245.
https://www.cambridge.org/core/journals/the-british-journal-of- psychiatry/article/how-do-doctors-deliver-a-diagnosis-of-dementia-in-memory-clinics/749EE7909A8B1F1C88C35DA8E66A8 3C7

Foley, T., Boyle, S., Jennings, A. et Smithson, W. H. (2017). “We’re certainly not in our comfort zone”: A qualitative study of GPs’ dementia-care educational needs. BMC Fam Pract, 18(1), 66. https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-017-0639-8

GRADE CERQual. (2018). Confidence in the evidence from reviews of qualitative research. https://www.cerqual.org/

Hesemann, H., Petermann, F. et Reif, K. (2013). Diagnosemitteilung und Aufklärungsgespräch bei Demenz : Retrospektive Wahrnehmung aus der Sicht von Angehörigen [Annonce et consultation informative après le diagnostic de trouble neurocognitif : rétrospective sur la perception selon les proches]. Zeitschrift fur Gerontologie und Geriatrie, 46(7), 658–662.
www.researchgate.net/publication/263568696_Diagnosemitteilung_und_Aufklarungsgesprach_bei_Demenz_ Retrospektive_Wahrnehmung_aus_der_Sicht_von_Angehorigen

Innes, A., Szymczynska, P. et Stark, C. (2014). Dementia diagnosis and post-diagnostic support in Scottish rural communities: Experiences of people with dementia and their families. Dementia (London, England), 13(2), 233–247. https://pubmed.ncbi. nlm.nih.gov/24599816/

Lewin, S., Bohren, M., Rashidian, A., Munthe-Kaas, H., Glenton, C., Colvin, C. J., Garside, R., Noyes, J., Booth, A., Tunçalp, Ö., Wainwright, M., Flottorp, S., Tucker, J. D. et Carlsen, B. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 2: How to make an overall CERQual assessment of confidence and create a Summary of Qualitative Findings table. Implementation Science, 13(1), 10. https://doi.org/10.1186/s13012-017-0689-2

Low, L. F. et Purwaningrum, F. (2020). Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma. BMC Geriatrics, 20(1), 477. https://bmcgeriatr.biomedcentral.com/articles/10.1186/ s12877-020-01754-x

Mastwyk, M., Ames, D., Ellis, K. A., Chiu, E. et Dow, B. (2014). Disclosing a dementia diagnosis: What do patients and family consider important? Int Psychogeriatr, 26(8), 1263-72. https://pubmed.ncbi.nlm.nih.gov/24784005/

NEJM Catalyst. (2017). What is patient-centered care? NEJM Catalyst. https://catalyst.nejm.org/doi/full/10.1056/CAT.17.0559

Neil-Sztramko, S. E., Belita, E., Traynor, R. L., Clark, E., Hagerman, L. et Dobbins, M. (2021). Methods to support evidence-informed decision-making in the midst of COVID-19: Creation and evolution of a rapid review service from the National Collaborating Centre for Methods and Tools. BMC Med Res Methodol, 21(1), 231.

Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372, n71. https://doi.org/10.1136/bmj.n71

Peixoto, V. G. M. N. P., Diniz, R. V. Z. et Godeiro, C. O. (2020). SPIKES-D: A proposal to adapt the SPIKES protocol to deliver the diagnosis of dementia. Dementia & Neuropsychologia, 14(4), 333–339. https://doi.org/10.1590/1980-57642020dn14-040001

Poyser, C. A. et Tickle, A. (2019). Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: A systematic review and Meta-ethnographic synthesis. Aging Ment Health, 23(12), 1605-1615. https://pubmed.ncbi.nlm.nih.gov/30430858/

Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S. et 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. https://pubmed.ncbi.nlm.nih.gov/23625551/

Vince, A., Clarke, C. et Wolverson, E. L. (2017). The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: A qualitative study. International Psychogeriatrics, 29(1), 93–104. https://pubmed.ncbi.nlm.nih. gov/27745556/

Werner, P., Karnieli-Miller, O. et Eidelman, S. (2013). Current knowledge and future directions about the disclosure of dementia: A systematic review of the first decade of the 21st century. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 9(2), e74–e88. https://pubmed.ncbi.nlm.nih.gov/23098912/

Wollney, E. N., Armstrong, M. J., Bedenfield, N., Rosselli, M., Curiel-Cid, R. E., Kitaigorodsky, M., Levy, X. et Bylund, C. L. (2022). Barriers and best practices in disclosing a dementia diagnosis: A clinician interview study. Health Services Insights, 15, 11786329221141829. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9729996/

Wollney, E. N., Bylund, C. L., Bedenfield, N., Rosselli, M., Curiel-Cid, R. E., Kitaigorodsky, M., Levy, X. et Armstrong, M. J. (2022). Clinician approaches to communicating a dementia diagnosis: An interview study. PloS one, 17(4), e0267161. https://pubmed.ncbi.nlm.nih.gov/35421205/

Wynn, M. J. et Carpenter, B. D. (2019). Discourse features among providers, patients, and companions and their effect on outcomes of dementia diagnosis disclosure. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 74(5), 756–763. https://pubmed.ncbi.nlm.nih.gov/29244125/

Xanthopoulou, P. et McCabe, R. (2019). Subjective experiences of cognitive decline and receiving a diagnosis of dementia: Qualitative interviews with people recently diagnosed in memory clinics in the UK. BMJ Open, 9(8), e026071. https://pubmed.ncbi.nlm.nih.gov/31375604/

Yates, J., Stanyon, M., Samra, R. et Clare, L. (2021). Challenges in disclosing and receiving a diagnosis of dementia: A systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. International Psychogeriatrics, 33(11), 1161–1192. https://pubmed.ncbi.nlm.nih.gov/33726880/

Revue de la littérature grise

Anantapong, K. et Davies, N. (2021). Talking about future decision-making capacity and advance care planning in diagnosis disclosure of dementia. International Psychogeriatrics, 33(11), 1119–1121. https://pubmed.ncbi.nlm.nih.gov/33926599/

Bhatt J. (2020). The influence of stigma on disclosure decision-making in people affected by dementia. [Doctoral dissertation, University College London]. UCL Discovery. https://discovery.ucl.ac.uk/id/eprint/10113352/ 

Chiong, W., Tsou, A. Y., Simmons, Z., Bonnie, R. J., Russell, J. A. et Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society). (2021). Ethical considerations in dementia diagnosis and care: AAN position statement. Neurology, 97(2), 80–89. https://pubmed.ncbi.nlm.nih.gov/34524968/

Collette, C. et Robitaille, G. (2015). Repérage et processus menant au diagnostic de la maladie d’Alzheimer et d’autres troubles neurocognitifs. INESSS.

Dementia Australia. (2022). Communicating the diagnosis. https://www.dementia.org.au/information/for-health-professionals/clinical-resources/communicating-the-diagnosis

Dooley, J. M. B. (2016). Communicating a diagnosis of dementia [thèse de doctorat, Université d’Exeter]. Open Research Exeter. https://ore.exeter.ac.uk/repository/handle/10871/27939

Dooley, J., Bailey, C. et McCabe, R. (2015). Communication in healthcare interactions in dementia: a systematic review of observational studies. International Psychogeriatrics, 27(8), 1277–1300. https://pubmed.ncbi.nlm.nih.gov/25697909/

Frank, C. C., Lee, L. et Molnar, F. (2018). Disclosing a diagnosis of dementia. Canadian Family Physician, 64(7), 518. https://pubmed.ncbi.nlm.nih.gov/30002028/

Frederiksen, K. S. et Waldemar, G. (2021). Disclosure of diagnosis in MCI and dementia. Dans Frederiksen, K. S., Waldemar, G.(dir.), Management of patients with dementia (p. 57–72). Springer. https://doi.org/10.1007/978-3-030-77904-7_4

Guidelines and Protocols Advisory Committee, Medical Services Commission, Government of British Columbia. (2016). Cognitive impairment: Recognition, diagnosis and management in primary care. https://www2.gov.bc.ca/gov/content/health/ practitioner-professional-resources/bc-guidelines/cognitive-impairment

Grover, S. (2023). Disclosing the diagnosis of dementia: Is it something to bother about? Journal of Geriatric Mental Health 9(2), 63- 65.
https://journals.lww.com/jgmh/fulltext/2022/09020/disclosing_the_diagnosis_of_dementia is_it.1.aspx

Milby E., Murphy G. et Winthrop A. (2017). Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis. Dementia (London, England), 16(5), 611-628. https://pubmed.ncbi.nlm.nih.gov/26493235/

Murphy, G. et Gair, E. (2013). Communicating a diagnosis of dementia: Briefing paper for Faculty for Psychology of Older People and Dementia Action Alliance. Dementia Action Alliance.

National Dementia Office, HSE. (2019). The National Dementia Office clinician survey: Dementia diagnostic processes and practices in Ireland. https://www.lenus.ie/handle/10147/626843

Nielsen, T. R., Svensson, B. H., Rohr, G., Gottrup, H., Vestergaard, K., Høgh, P. et Waldemar, G. (2020). The process of disclosing a diagnosis of dementia and mild cognitive impairment: A national survey of specialist physicians in Denmark. Dementia (London, England), 19(3), 547–559. https://pubmed.ncbi.nlm.nih.gov/29806491/

Yates, J., Stanyon, M., Samra, R. et Clare, L. (2021). Challenges in disclosing and receiving a diagnosis of dementia: A systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. International Psychogeriatrics, 33(11), 1161–1192. https://pubmed.ncbi.nlm.nih.gov/33726880/


Alzheimer’s Disease International. (2021). World Alzheimer report 2021: Journey through the diagnosis of dementia. https://www.alzint.org/resource/world-alzheimer-report-2021/

Association médicale canadienne. (2022). Le système de santé du Canada à l’agonie : les travailleurs de la santé demandent une mobilisation urgente pour répondre aux pénuries, à l’épuisement professionnel et aux retards dans les services. https://www.cma.ca/fr/propos-nous/notre-role/salle-presse/systeme-sante-canada-lagonie-travailleurs-sante-demandent-mobilisation-urgente-repondre-aux-penuries

BC Centre for Palliative Care. (2019). Serious illness conversations. https://www.bc-cpc.ca/serious-illness-conversations/

de Vugt, M. E. et Verhey, F. R. (2013). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62. https://pubmed.ncbi.nlm.nih.gov/23689068/

Dupuis, S. L., Gillies, J., Carson, J., Whyte, C., Genoe, R., Loiselle, L. et Sadler, L. (2012). Moving beyond patient and client approaches: Mobilizing ‘authentic partnerships’ in dementia care, support and services. Dementia, 11(4), 427–452. https://doi.org/10.1177/1471301211421063

Emploi et Développement social Canada. (2023). Le Canada répond à la demande de main‑d’oeuvre actuelle et émergente dans le secteur des soins de santé. https://www.canada.ca/fr/emploi-developpement-social/nouvelles/2023/06/le-canada-repond-a-la-demande-de-mainduvre-actuelle-et-emergente-dans-le-secteur-des-soins-de-sante.html

Haut-Commissariat aux droits de l’homme des Nations Unies. (2023). Déclaration des droits des personnes appartenant à des minorités nationales ou ethniques, religieuses et linguistiques. https://www.ohchr.org/fr/instruments-mechanisms/instruments/declaration-rights-persons-belonging-national-or-ethnic

Hult, J. R., Wrubel, J., Bränström, R., Acree, M. et Moskowitz, J. T. (2012). Disclosure and nondisclosure among people newly diagnosed with HIV: An analysis from a stress and coping perspective. AIDS Patient Care and STDs, 26(3), 181–190. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3286804/

Jacobs, P., Watchman, K., Wilkinson, H., Hoyle, L. et McGenily, L. (2023). Experiences of people with intellectual disability and dementia: A systematic review. Journal of Applied Research in Intellectual Disabilities: JARID, 36(2), 241–258. https://pubmed.ncbi.nlm.nih.gov/36562340/

Khangura, S., Polisena, J., Clifford, T. J., Farrah, K. et Kamel, C. (2014). Rapid review: An emerging approach to evidence synthesis in health technology assessment. International Journal of Technology Assessment in Health Care, 30(1), 20–27. https://pubmed.ncbi.nlm.nih.gov/24451157/

Martin, L. (2021). Dementia in the Asian community: Prevalence, stigma, and more. Healthline Media UK. https://www.medicalnewstoday.com/articles/dementia-in-the-asian-community

Merl, H., Veronica Doherty, K., Alty, J. et Salmon, K. (2022). Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician. Dementia (London, England), 21(3), 1050–1068. https://pubmed.ncbi.nlm.nih.gov/35134305/

National Institute on Aging. (2021). Data shows racial disparities in Alzheimer’s disease diagnosis between Black and white research study participants. 
https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers- disease-diagnosis-between-black-and-white-research

Pizzimenti, A., Gori, M. C., Onesti, E., John, B. et Inghilleri, M. (2015). Communication of diagnosis in amyotrophic lateral sclerosis: stratification of patients for the estimation of the individual needs. Frontiers in Psychology, 6, 745. https://www.frontiersin.org/articles/10.3389/fpsyg.2015.00745

Restall, G., Ripat, J. et Stern, M. (2003). A framework of strategies for client-centred practice. Canadian Journal of Occupational Therapy, 70(2), 103–112. https://pubmed.ncbi.nlm.nih.gov/12704974/

The Cochrane Collaboration. (2023). Cochrane Methods Rapid Reviews. https://methods.cochrane.org/rapidreviews/

Vitto, C., Del Buono, B., Daniel, L., Rivet, E., Cholyway, R. et Santen, S. A. (2022). Teaching toolbox: Breaking bad news with virtual technology in the time of COVID. Journal of Cancer Education, 37(5), 1429–1432.

Younas, A. (2020). Relational inquiry approach for developing deeper awareness of patient suffering. Nursing Ethics, 27(4), 935- 945. https://pubmed.ncbi.nlm.nih.gov/32249677/

Zheng, Y., Lei, F. et Liu, B. (2019). Cancer diagnosis disclosure and quality of life in elderly cancer patients. Healthcare (Basel), 7(4), 163. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6956195/

Références pour les déclarations de bonne practique

Dewidar, O., Lotfi, T., Langendam, M., Parmelli, E., Saz Parkinson, Z., Solo, K., Chu, D. K., Mathew, J. L., Akl, E. A., Brignardello- Petersen, R., Mustafa, R. A., Moja, L., Iorio, A., Chi, Y., Canelo-Aybar, C., Kredo, T., Karpusheff, J., Turgeon, A. F., Alonso- Coello, P., … eCOVID-19 recommendations map collaborators. (2022). Which actionable statements qualify as good practice statements in Covid-19 guidelines? A systematic appraisal. BMJ Evidence-Based Medicine, 27(6), 361–369. https://doi.org/10.1136/bmjebm-2021-111866

Dewidar, O., Lotfi, T., Langendam, M. W., Parmelli, E., Saz Parkinson, Z., Solo, K., Chu, D. K., Mathew, J. L., Akl, E. A., Brignardello- Petersen, R., Mustafa, R. A., Moja, L., Iorio, A., Chi, Y., Canelo-Aybar, C., Kredo, T., Karpusheff, J., Turgeon, A. F., Alonso- Coello, P., …eCOVID-19 recommendations map collaborators. (2023). Good or best practice statements: Proposal for the operationalisation and implementation of GRADE guidance. BMJ Evidence-Based Medicine, 28(3), 189–196. https://doi.org/10.1136/bmjebm-2022-111962