References and citations for our National Dementia Guidelines

From the rapid review

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.
https://www.alzint.org/resource/world-alzheimer-report-2021/

Alzheimer’s Disease International. (2022). World Alzheimer report 2022: Life after diagnosis: Navigating treatment, care and support.
https://www.alzint.org/resource/world-alzheimer-report-2022/

Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & 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., & 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., & Moghaddam, N. G. (2019). Developing a tool to support diagnostic delivery of dementia. Dementia (London, England), 18(7-8), 2505–2525.
https://pubmed.ncbi.nlm.nih.gov/29378425/

Carpenter, B., & Dave, J. (2004). Disclosing a dementia diagnosis: A review of opinion and practice, and a proposed research agenda. The Gerontologist, 44(2), 149–158.
https://doi.org/10.1093/geront/44.2.149

Carpenter, B. D., & 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., & 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., & Olde-Rikkert, M. (2006). A model for disclosure of the diagnosis of dementia. Dementia, 5(3), 462-468.
https://journals.sagepub.com/doi/10.1177/147130120600500313

Dooley, J., Bass, N., & 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., & 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., & Reif, K. (2013). Diagnosemitteilung und Aufklärungsgespräch bei Demenz : Retrospektive Wahrnehmung aus der Sicht von Angehörigen [Disclosure and informative consultation after diagnosis of dementia: retrospective perception from the point of view of relatives]. 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., & 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., & 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. & 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., & 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., & 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.
https://doi.org/10.1186/s12874-021-01436-1

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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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/

From the grey literature review

Anantapong, K., & 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., & 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., & Robitaille, G. (2015). Repérage et processus menant au diagnostic de la maladie d’Alzheimer et d’autres troubles neurocognitifs. INESSS.
https://numerique.banq.qc.ca/patrimoine/details/52327/2977350

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 [Doctoral dissertation, University of Exeter]. Open Research Exeter. https://ore.exeter.ac.uk/repository/handle/10871/27939

Dooley, J., Bailey, C., & 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., & Molnar, F. (2018). Disclosing a diagnosis of dementia. Canadian Family Physician, 64(7), 518. https://pubmed.ncbi.nlm.nih.gov/30002028/

Frederiksen, K.S., & Waldemar, G. (2021). Disclosure of diagnosis in MCI and dementia. In K. S. Frederiksen & G. Waldemar (Eds.), Management of patients with dementia (pp. 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., & 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., & 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., & 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/

Other

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

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

Canadian Medical Association. (2022). Canada’s health system is on life support: Health workers call for urgent mobilization to address shortages, burnout and backlog issues.
https://www.cma.ca/about-us/what-we-do/press-room/canadas-health- system-life-support-health-workers-call-urgent-mobilization-address-shortages-burnout

de Vugt, M. E., & 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., & 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

Employment and Social Development Canada. (2023). Canada is addressing current and emerging labour demands in health care.
https://www.canada.ca/en/employment-social-development/news/2023/06/canada-is-addressing-current-and-emerging-labour-demands-in-health-care.html

Hult, J. R., Wrubel, J., Bränström, R., Acree, M., & 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., & 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., & 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., & 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. National Institute on Aging.
https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers- disease-diagnosis-between-black-and-white-research

Office of the High Commissioner for Human Rights, United Nations. (2023). Declaration on the rights of persons belonging to national or ethnic, religious and linguistic minorities.
https://www.ohchr.org/en/instruments-mechanisms/instruments/declaration-rights-persons-belonging-national-or-ethnic

Pizzimenti, A., Gori, M. C., Onesti, E., John, B., & 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., & 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., & 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.
https://pubmed.ncbi.nlm.nih.gov/33851370/

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., & 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/

GRADE references (Rapid review articles used in GRADE table)

Bennett, C. E., De Boos, D., & Moghaddam, N. G. (2019). Developing a tool to support diagnostic delivery of dementia. Dementia (London, England), 18(7-8), 2505-2525.https://doi.org/10.1177/1471301217750936

Caruana-Pulpan, O., & 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://doi.org/10.1080/13607863.2013.819833

Dooley, J. M. B. (2016). Communicating a diagnosis of dementia [Doctoral dissertation, University of Exeter]. Open Research Exeter. https://ore.exeter.ac.uk/repository/handle/10871/27939

Dooley, J., Bass, N., & McCabe, R. (2018). How do doctors deliver a diagnosis of dementia in memory clinics? British Journal of Psychiatry, 212(4), 239–245. https://doi.org/10.1192/bjp.2017.64

Foley, T., Boyle, S., Jennings, A., & Smithson, W. H. (2017). “We’re certainly not in our comfort zone”: A qualitative study of GPs’ dementia-care educational needs. BMC Family Practice, 18(1), 66.
https://doi.org/10.1186/s12875-017-0639-8

Hesemann, H., Petermann, F., & Reif, K. (2013). Disclosure and informative consultation after diagnosis of dementia: Retrospective perception from the point of view of relatives. Zeitschrift für Gerontologie und Geriatrie, 46(7), 658–662. https://doi.org/10.1007/s00391-013-0474-z

Low, L. F., McGrath, M., Swaffer, K., & Brodaty, H. (2019). Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners. Dementia (London, England), 18(7–8), 2856–2905. https://doi.org/10.1177/1471301218761911

Mastwyk, M., Ames, D., Ellis, K. A., Chiu, E., & Dow, B. (2014). Disclosing a dementia diagnosis: What do patients and family consider important? International Psychogeriatrics, 26(8), 1263–1272.
https://doi.org/10.1017/S1041610214000751

Poyser, C. A., & 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 & Mental Health, 23(12), 1605–1615. https://doi.org/10.1080/13607863.2018.1506747

Werner, P., Karnieli-Miller, O., & 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, 9(2), e74-88. https://doi.org/10.1016/j. jalz.2012.02.006

Yates, J., Stanyon, M., Samra, R., & 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://doi.org/10.1017/S1041610221000119

Good practice statement references

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