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References

2019: Overcoming ethical challenges affecting the involvement of people with dementia in research

Andorno R, Gennet E, Jongsma KR, Elger B. (2016) Integrating Advance Research Directives into the European Legal Framework. Eur J Health Law, 23, 49–64.
Aguilar LR (1981). Insider research: an ethnography of a debate. In DA Messerschmidt (ed.) Anthropologists at home in North America (Cambridge: Cambridge University Press, p. 15–26.)
Alzheimer’s Disease International (2012). Overcoming the stigma of dementia. Alzheimer’s Disease International
Alzheimer Europe (2016). Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease. Alzheimer Europe
Alzheimer Europe (2018). The development of intercultural care and support for people with dementia from minority ethnic groups. Alzheimer Europe
Alvesson M & Sköldberg K (2009). Reflexive methodology: new vistas for qualitative research. London: Sage.
Appelbaum PS & Roth LH (1982). Competency to Consent to Research: A Psychiatric Overview. Archives of Gen Psychiatry, 39(8), 951.
Appelbaum PS & Grisso T (2001). MacArthur Competence assessment tool for clinical research (MacCAT-CR).
Professional Resource Press: Toronto, Canada. Appelbaum PS. (2007). Assessment of patients’
competence to consent to treatment. The New England Journal of Medicine, 357, 1834–40.
APPGD (All-Party Parliamentary Group on Dementia) (2013). Dementia does not discriminate: The experiences of black, Asian and minority ethnic communities.
London: The Stationery Office.
Arnstein SR (1969). A Ladder of Citizen Participation, J Amer Insti of Planners, 35(4), 216–24.
Ayalon L & Tesch-Römer C (2017). Taking a closer look at ageism: Selfand other-directed ageist attitudes and discrimination. Eur J of Ageing, 14(1), 1-4.
Baldwin JN, Napier S, Neville S & Wright-St Clair V A (2018). Impacts of older people’s patient and public involvement in health and social care research: A systematic review. Age and Ageing, 47(6), 801-9.
Ball S, Harshfield A, Carpenter A, Bertscher A & Marjanovic S (2019). Patient and public involvement in research.
Enabling meaningful contributions. Santa Monica, CA: RAND Corporation, 2019. https://www.rand.org/pubs/ research_reports/RR2678.html
Barber S J (2017). An Examination of Age-Based Stereotype Threat About Cognitive Decline: Implications for Stereotype-Threat Research and Theory Development. Perspectives on Psychol Science, 12(1), 62-90.
Barth F (1998). Ethnic groups and boundaries: The social organization of culture difference. Waveland Press Inc: Long Grove, Illinois.
Baumgarten M (2012). Paradigm Wars – Validity and Reliability in Qualitative Research. Grin Verlag
Beauchamp T & Childress JF (2012). Principles of biomedical ethics (7th edition). Oxford and New York: Oxford University Press
Beattie A, Daker-White G, Gilliard J & Means R (2005). ‘They don’t quite fit the way we organise our services’— Results from a UK field study of marginalised groups and dementia care. Disability & Society, 20(1), 67-80.
Beattie E (2009). Research Participation of Individuals with Dementia. Res in Gerontol Nurs, 2(2), 94-102.
Berdai Chaouni S & De Donder L (2018). Invisible realities: Caring for older Moroccan migrants with dementia in Belgium. Dementia, 147130121876892.
Berdai Chaouni S, Claeys A & De Donder L (2018). How to (qualitatively) involve older people with dementia
and their informal carers with a migration background in research? Insights from a longitudinal project in Brussels. Proceedings from the European Congress of Qualitative Inquiry, 63–71.
Berghmans RLP (2000). Advance directives and dementia.
Annals of the New York Academy of Sciences, 913,105–10.
Beresford P (2019). Public Participation in Health and Social Care: Exploring the Co-production of Knowledge. Frontiers in Sociology, 3.
Beswick A, Burke M, Shlomo YB & Dieppe P (2008). Predict: increasing the participation of elderly in clinical trials. Work package 1: literature review. PREDICT
Bhattacharyya S & Benbow SM (2013). Mental health services for black and minority ethnic elders
in the United Kingdom: A systematic review of innovative practice with service provision and policy implications. Int Psychoger, 25(3), 359-73.
Bhopal R & Sheikh A (2009). Inclusion and exclusion of ethnic-minority populations in research on the
effectiveness of interventions. Diversity in Health and Care, 6, 1–4.
Bian L (2015). Medical Individualism or Medical Familism?
A Critical Analysis of China’s New Guidelines for Informed Consent: The Basic Norms of the
Documentation of the Medical Record. J Med and Philosophy, 40(4), 371-86.
Black A, Strain K, Wallsworth C, Charlton SG, Chang W, McNamee K & Hamilton C (2018). What constitutes meaningful engagement for patients and families as partners on research teams? J Health Serv Res & Policy, 23(3), 158-67.
Black BC, Rabins PV, Sugarman J & Karlawish JH (2010). Seeking assent and respecting dissent in dementia research. Am J Psychiatry, 18(1), 77–85.
Blakemore A, Kenning C, Mirza N, Daker-White G, Panagioti M & Waheed W (2018). Dementia in UK South Asians: a scoping review of the literature. BMJ Open, 8(4), e020290.
Blum NS (1991). The management of stigma by Alzheimer’s family caregivers. J Contemp Ethnography, 20, 263–84.
Bourke B (2014). Positionality: Reflecting on the Research Process. The Qualitative Report, 19(33), 1–9.
Brach C, Keller D, Hernandez LM, Baur C, Parker R, Dreyer B, Schyve P, Lemerise AJ and Schillinger D (2012). Ten Attributes of Health Literate Health Care Organizations: Discussion paper. https://nam.edu/ perspectives-2012-ten-attributes-of-health-literatehealth-care-organizations/
Brayne C & Davis D (2012). Making Alzheimer’s and dementia research fit for populations. The Lancet, 380(9851),1441-3.
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C & Suleman R (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637-50.
Buchanan AE & Brock DW (1990), Deciding for others: the ethics of surrogate decision making. Cambridge University Press
Casarett DJ & Karlawish JHT (2000). Are special ethical guidelines needed for palliative care research? J Pain and Symptom Management, 20(2), 130–9.
Chaaya M, Phung TKT, El Asmar K, Atweh S, Ghusn H, Khoury RM … Waldemar G (2016). Validation of the Arabic Rowland Universal Dementia Assessment Scale (A-RUDAS) in elderly with mild and moderate dementia. Aging & Mental Health, 20(8), 880-7.
Cheffey J, Hill L, McCullough C & McCullough C (2017). “Can I facilitate a project when my memory lets me down?”: The challenges and rewards of co-producing a “living well with dementia” course. FPOP Bulletin, 137, 19–25.
Cherubini A, Del Signore S, Ouslander J, Demla T & Michel J-P (2010). Fighting against age discrimination in clinical trials. J Am Geriatrics Soc, 58(9), 1791–6.
Cipriani G, Danti S, Carles C & Di Fiorino M (2018). Aging With Down Syndrome: The Dual Diagnosis: Alzheimer’s Disease and Down Syndrome. Am J Alz Dis & Other Dem, 33(4), 253-62.
Condon L, Bedford H, Ireland L, Kerr S, Mytton J, Richardson Z & Jackson C (2019). Engaging Gypsy, Roma, and Traveller Communities in Research: Maximizing Opportunities and Overcoming Challenges. Qual Health Res, 1–10.
Corrigan PW & Watson AC (2007). The stigma of psychiatric disorders and the gender, ethnicity, and education of the perceiver. Community Mental Health Journal, 43(5), 439-58.
Council for International Organization of Medical Societies (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects, Commentary on Guideline 13. Available from: www. cioms.ch
Crenshaw K (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. University of Chicago Legal Forum, 1, Article 8. Available at: http://chicagounbound. uchicago.edu/uclf/vol1989/iss1/8
Creswell JW (2009). Research design. Qualitative, quantitative and mixed methods approaches. Third Edition. Thousand Oaks, California: Sage Publications Inc
Daigle K (2019). Public trust that scientists work for the good of society is growing. Science News, August edition.https://www.sciencenews.org/article/ public-trust-scientists-work-good-society-growing
Daly RL, Bunn F & Goodman C (2018). Shared decisionmaking for people living with dementia in extended care settings: A systematic review. BMJ Open, 8(6), e018977.
Davis DS (2017). Ethical issues in Alzheimer’s disease research involving human subjects. J Med Ethics, 43(12), 852-6.
Denscombe M (2010). The Good Research Guide: for smallscale social research. McGraw Hill.
Dewing J (2007). Participatory research: a method for process consent for people who have dementia, Dementia, 6(1), 11–25.
Di Lorito C, Birt L, Poland F, Csipke E, Gove D, Diaz-Ponce A & Orrell M (2017). A synthesis of the evidence on peer research with potentially vulnerable adults: How this relates to dementia: Peer research with potentially vulnerable adults. Int J Ger Psych, 32(1), 58-67.
Dobson C (2008). Conducting research with people not having the capacity to consent to their participation A practical guide for researchers. British Psychological Society
Doody O (2018). Ethical challenges in intellectual disability research. M J Nurs, 1 (1), 1–11.
Dresser R (1986). Life, death, and incompetent patients: conceptual infirmities and hidden values in the law. Arizona Law Review, 28, 373–405.
Dresser R (1995). Dworkin on dementia: elegant theory, questionable policy. Hastings Center Report, 25(6): 32–8.
Dresser R (2001). Advance directives in dementia research. Promoting Autonomy and Protecting Subjects. IRB Ethics & Human Research, 23(1), 1–6.
D’Silva MU, Smith SE, Della LJ, Potter DA Rajack-Talley TA & BestL (2016). Reflexivity and Positionality in Researching African-American Communities: Lessons from the Field Intercultural Communication Studies, XXV: 1
DuBois JM (2008). Ethics in mental health research: principles, guidance and cases. Oxford University Press
Dunham CC & Cannon JH (2008). “They’re still in control enough to be in control”: Paradox of power in dementia caregiving. J Aging Studies, 22 , S. 45–53.
Dworkin R (1994). Life’s dominion; an argument about abortion, euthanasia and individual freedom, 1st Vintage Books
Diener L, Hugonot-Diener L ….. & the European Forum for Good Clinical Practice Geriatric Medicine Working Party (2013). Guidance synthesis. medical researchfor and with older people in europe: proposedethical guidance for good clinical practice: ethical considerations. J Nutrition Health Aging, 17(7), 625–7.
Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, Cording E, Tomson D, Dodd C, Rollnick S, Edwards A & Barry M. (2012). Shared Decision Making: A Model for Clinical Practice. J Gen Int Med, 27(10), 1361–7.
EMA (European Medicines Agency) (1994). ICH Topic E7 – studies in support of special populations: geriatrics (CPMP/ICH/379/95), European Medicines Agency
Emanuel E J, Wendler D & Grady C (2000). What Makes Clinical Research Ethical? JAMA, 283(20), 2701.
Eurobarometer (2012). Special Eurobarometer 386.Europeans and their languages report. European Commission, DG COMM “Research and Speechwriting” Unit EuropeanCommission/EACEA/Eurydice(2016). Compulsory Education in Europe – 2016/17.
Eurydice Facts and Figures. Luxembourg: Publications Office of the European Union.
European Parliament and Council Regulation on clinical trials on medicinal products for human use, and repealing Directive 2001/20/EC. 2014. http://www. europarl.europa.eu/sides/getDoc.do?type=TA&langua ge=EN&reference=P7-TA-2014-0273#BKMD-37
EUROSTAT (2017) Statistics on Ageing society – people livingalone.http://ec.europa.eu/eurostat/ statistics-explained/index.php?title=People_in_the_ EU_-statistics_on_an_ageing_society
Eurostat (2018). Archive: Internet access and use statistics – households and individuals – 2016 edition. https:// ec.europa.eu/eurostat/statistics-explained
Faber J & Fonseca LM (2014). How sample size influences research outcomes. Dental Press J of Orthodontics, 19(4), 27-9.
Faden RR & Beauchamp TL (1986). A History and Theory of Informed Consent. New York/Oxford: Oxford University Press
Fisher CB (2009), Paper three: relational ethics and research with vulnerable populations. https://www.onlineethics. org/cms/9004.aspx
Frisoni GB, Ritchie C, Carrera E, Nilsson P, Ousset P-J, Molinuevo JL., … Minoshima S. (2019). Re-aligning scientific and lay narratives of Alzheimer’s disease. The Lancet Neurology, 18(10), 918–9.
Froehle C (2016). The Evolution of an Accidental Meme: How one little graphic became shared and adapted bymillions.https://medium.com/@CRA1G/the- evolution-of-an-accidental-meme-ddc4e139e0e4#. tm1cbg2vn
Garand L, Lingler JH, Conner KO & Dew MA (2009). Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment. Research in Gerontol Nurs, 2(2), 112-21.
Gillon R (1994). Medical ethics: four principles plus attention to scope. BMJ, 309, 184.
Goffman E (1963). Stigma: Notes on the Management of Spoiled Identity. Penguin
Gove D, Diaz-Ponce A, Georges J, Moniz-Cook E, Mountain G, Chattat, R., … The European Working Group of People with Dementia. (2017). Alzheimer Europe’s position on involving people with dementia in research through PI (patient and public involvement). Aging & Mental Health, 22(6), 723-9.
Gradinger F, Britten N, Wyatt K, Froggatt K, Gibson A, Jacoby A, … Popay J (2015). Values associated with public involvement in health and social care research: A narrative review. Health Expectations, 18(5), 661-75.
Grant R & Sugarman J (2004). Ethics in Human Subjects Research: Do Incentives Matter? J Med and Philosophy, 29(6), 717-38.
Greiffenhagen Ch, Mair M & Sharrock W (2011). From methodology to methodography: a study of qualitative and quantitative reasoning in practice, Methodological Innovations Online, 6(3), 93–107.
Guba NK & Lincoln YS (199). Handbook of Qualitatitve Research. Sage Publications.
Habets MG, van Delden J J & Bredenoord AL (2014). The social value of clinical research. BMC Medical Ethics, 15(1), 1–7.
Hank K & Erlinghagen M (2010). Dynamics of Volunteering in Older Europeans. The Gerontologist, 50(2), 170-8.
Hardavella G, Bjerg A, Saad N, Jacinto T & Powell P (2015). How to optimise patient and public involvement in your research: Doing science. Breathe, 11(3), 223-7.
Harré R & van Langenhove L (Eds) (1999). Positioning theory: Moral contexts of intentional actions. Oxford: Blackwell
Hayes G, Costello H, Nurock S, Cornwall A & Francis P (2018). Ticking boxes or meaningful partnership – The experience of lay representation, participant and study partner involvement in Brains for Dementia Research. Dementia, 17(8), 1023-34.
Head E (2009). The ethics and implications of paying participants in qualitative research. Int J Social Res Methodol, 12(4), 335-344.
Heiat A, Gross CP & Krumholz HM (2002). Representation of the Elderly, Women, and Minorities in Heart Failure Clinical Trials. Archives of Int Med, 162(15).
Hellström I, Nolan M, Nordenfelt L & Lundh U (2007). Ethical and methodological issues in interviewing persons with dementia. Nurs Ethics, 14(5), 608-19.
Hérault É, Bravo G & Trottier L (2018). Advance Directives for Research: How Do They Compare with Surrogates’ Predictions of Older Adults’ Preferences? IRB: Ethics & Human Res, 40(5), 11-19.
Holzer JC, Gansler DA, Moczynski NP & Folstein MF (1997). Cognitive functions in the informed consent evaluation process: A pilot study. J Am Acad Psychiatry and the Law, 25(4), 531-40.
Horsfield J (2017). Defining Showmen Travellers and all the fun of the fair. Working paper (see ResearchGate)
Howe E (2012). Informed consent, participation in research, and the Alzheimer’s patient. Innov in Clin Neuroscience, 9(5-6), 47-51.
Hubbard G, Downs MG & Tester S (2003). Including older people with dementia in research: Challenges and strategies. Aging & Mental Health, 7(5), 351-62.
Hunter D (2007). Proportional ethical review and the identification of ethical issues. J of Med Ethics, 33, 241–5.
Hussain-Gambles M (2003). Ethnic minority underrepresentation in clinical trials: Whose responsibility is it anyway? J Health Org and Management, 17(2),
138-43.
International Organization for Migration (2019). Glossary on migration. International Migration Law. https:// publications.iom.int/system/files/pdf/iml_34_ glossary.pdf
INVOLVE (2012). Briefing notes for researchers: public involvement in NHS, public health and social care research.www.invo.org.uk/resource-centre/ publications-by-involve
INVOLVE (2016). What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health
or social care research. National Institute for Health Research.
INVOLVE (2017). Starting out. (Revised in 2019) Please see:https://www.invo.org.uk/wp-content/ uploads/2019/10/Starting-Out-Revised-FINAL.pdf
INVOLVE (2018). Guidance on co-producing a research project. NIHS.
Institute of Medicine of the National Academies (2009), Initial national priorities for comparative effectiveness research. The National Academies Press, Washington DC
Ives J, Damery S & Redwod S (2013). PI, paradoxes and Plato: Who’s sailing the ship?: Table 1. Journal Med Ethics, 39(3), 181–5.
Jongsma K & Schweda M. (2018). Return To Childhood? –    Against The Infantilisation Of People With LateOnset Dementia. Bioethics, https://doi.org/10.1111/ bioe.12458I:10.1111/bioe.12458
Jongsma KR & van de Vathorst S (2015). Beyond Competence: Advance Directives in Dementia Research. Monash Bioethics Review, 33(2),167–218.
Jongsma KR, Bos W & van de Vathorst S (2015). Morally relevant similarities and differences between children and dementia patients as research subjects –    Representation in legal documents and ethical guidelines. Bioethics, 29(9), 662–70.
Jongsma KR & van de Vathorst S (2015). Dementia research and advance consent: it is not about critical interests. J Med Ethics, 41(8), 708–9.
Jongsma K (2016). Advance directives in dementiaresearch: a medical ethical inquiry. Erasmus University Rotterdam
Jongsma KR, van Bruchem-Visser RL, van de Vathorst S & Mattace Raso FUS (2016). Has dementia research lost its sense of reality? A descriptive analysis of eligibility criteria of Dutch dementia research protocols. The Netherlands J of Med, 74(5), 201-9.
Jongsma K, Spaeth E & Schicktanz S (2017). Epistemic injustice in dementia and autism patient organizations: An empirical analysis, AJOB Empirical Bioethics, DOI: 10.1080/23294515.2017.1402833
Jubany O, Güell B & Davis R (2011). Standing up to Intersectional Discrimination: a Multi-dimensional Approach to the Case of Spain, Droit et cultures, 62, 197–217.
Karlawish J, Rubright J, Casarett D, Cary M, Ten Have T & Sankar P (2009). Older Adults’ Attitudes Toward Enrollment of Non-competent Subjects Participating in Alzheimer’s Research. Am J Psychiatry, 166(2), 182-8.
Kenning C, Daker-White G, Blakemore A, Panagioti M & Waheed W (2017). Barriers and facilitators in accessing dementia care by ethnic minority groups: a metasynthesis of qualitative studies. BMC Psychiatry, 17(316), 1–13
Khan F (2011). Being monolingual, bilingual or multilingual: pros and cons in patients with dementia. Int Psychiatry, 8(4), 96–8.
Kim SY, Karlawish J, Kim HM, Wall IF, Bozoki A & Appelbaum PS (2011). Preservation of the capacity to appoint a proxy decision maker: implications for dementia research. Arch Gen Psychiatry, 68, 214–20.
Kim SYH, Kim HM, Ryan KA, Appelbaum PS, Knopman DS, Damschroder L, and De Vries R. (2013). How Important Is “Accuracy” of Surrogate Decision-Making for Research Participation? PLoS ONE, 8(1), e54790.
Kitwood T (1990). The dialectics of dementia: With particular reference to Alzheimer’s disease. Ageing and Soc, 10, 177–96.
Kitwood T (1997). Dementia reconsidered: The person comes first. Buckingham: Open University.
Knowles S, Voorhees J & Planner C (2015). Participatory research vs PI – What can we learn from each other? NIHR News Blog. https://www.spcr.nihr.ac.uk/news/ blog/participatory-research-vs-PI-2013-what-can-welearn-from-each-other
Knudsen SV (2006). Intersectionality – A Theoretical Inspiration in the Analysis of Minority Cultures and Identities in Textbooks. In Éric Bruillard et al. (eds.). Caught in the Web or Lost in the Textbook? Caen: IARTEM, stef, Iufm (61–76).
Konkel L (2015). Racial and Ethnic Disparities in Research Studies: The Challenge of Creating More Diverse Cohorts. Environ Health Perspec, 123(12).
Kuhn TS (1970). The structure of scientific revolutions.
Chicago: University of Chicago Press
Kvale S & Brinkmann S (2009). Interviews: learning the craft of qualitative research interviewing. Sage Publications.
Lakew Y (2016). Statistical Tales: Bringing in Reflexivity to Make Sense of Quantitative Data. http://www.
researchingcommunication.eu/book12chapters/C17_ LAKEWS201617.pdf
LaMorfe WW (2016). Selection bias. Boston University School of Public Health – http://sphweb.bumc.bu.edu/ otlt/MPH-Modules/EP/EP713_Bias/EP713_Bias2.html
Landau R, Auslander GK, Werner S, Shoval N & Heinik J (2010). Families’ and Professional Caregivers’ Views of Using Advanced Technology to Track People With Dementia. Qual Health Res, 20(3), 409-19.
Largent EA, Karlawish J & Grill JD (2018). Study partners: essential collaborators in discovering treatments of Alzheimer’s disease. Alzheimer’s Res & Therapy, 10, 101.
Lawrence V, Samsi K, Banerjee S, Morgan C & Murray J (2011). Threat to Valued Elements of Life: The
Experience of Dementia across Three Ethnic Groups.
The Gerontologist, 51(1), 39–50.
Lepore M, Shuman SBm Wiener JM and Gould E. Challenges in involving people with dementia as study participants in research on care and services. Background paper. https://aspe.hhs.gov/basic-report/ challenges-involving-people-dementia-studyparticipants-research-care-and-services
Levine C, Faden R, Grady C, Hammerschmidt D,
Eckenwiler L & Sugarman J (2004). The Limitations
of “Vulnerability” as a Protection for Human Research Participants. The Amer J Bioethics, 4(3), 44–9.
Lewens T (2006). Distinguishing treatment from research: A functional approach. J Med Ethics, 32(7), 424-9.
Liégeois J-P (2007). Roma in Europe. Strasbourg, France: Council of Europe
Link BG & Phelan JC (2001). Conceptualizing Stigma.
Annual Rev Sociol, 27(1), 363-385.
Link BG & Phelan JC (2006). Stigma and its public health implications. The Lancet, 367(9509), 528-9.
Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, … Mukadam N (2017). Dementia prevention, intervention, and care. The Lancet, 390(10113),2673-2734.
MacRae H (1999). Managing courtesy stigma: the casefor Alzheimer’s disease. Soc of Health and Illness, 21(1), 54–70.
Maier K (2001). Citizen participation in planning: climbing a ladder? Eur Planning Studies, 9(6), 707–19.
Malterud K (2001). Qualitative research: Standards, challenges and guidelines. The Lancet, 358, 483–8.
Manthorpe J, Samsi K, Joly L, Crane M, Gage H, BowlingA & Nilforooshan R. (2019). Service provision for older homeless people with memory problems: a mixedmethods study. Health Serv Deliv Res, 7(9).
McCall L (2005). The Complexity of Intersectionality. Signs: J of Women in Cult and Soc, 30(3), 1771-1800.
Mersha TB & Abebe T (2015). Self-reported race/ethnicity in the age of genomic research: its potential impact on understanding health disparities. Human Genomics, 9(1), 1.
Merriam SB, Johnson-Bailey J, Lee MY, Lee Y, Ntseane G & Muhamed M (2001). Power and positionality:
Negotiating insider/outsider status within and across cultures. Int J of Lifelong Educ, 20(5), 405–16.
Miah J, Dawes P, Leroi I, Parsons S & Starling B (2018). A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study. Res Involvement and Engagement, 4(1).
Miles MB & Huberman AM (1994). Qualitative Data Analysis. An expanded Sourcebook. Second Edition. Thousand Oaks, California: Sage Publications Inc
Millum J & Garnett M (2019). How Payment for Research Participation Can Be Coercive. The Amer J of Bioethics, 19(9), 21–31.
Mohammed (2017). A fragmented pathway: experienceof the South Asian community and the dementia care
pathway – a care giver’s journey. University of Salford: Manchester
Moore DS & McCabe GP (2006). Introduction to the Practice of Statistics, Fifth edition, Freeman
Morrow E, Ross F, Grocott P & Bennett J (2010). A model and measure for quality service user involvement in health research: Service user involvement in health research. Int J Consumer Studies, 34(5), 532-9.
Mukadam N, Cooper C & Livingston G (2011). A systematic review of ethnicity and pathways to care in dementia. Int J Ger Psych, 26, 12–20.
Naci H & Ioannidis JPA (2015). Evaluation of Wellness Determinants and Interventions by Citizen Scientists. JAMA, 314(2), 121.
Nash C, Hawkins A, Kawchuk J & Shea SE (2012). What’s in a name? Attitudes surrounding the use of the term « mental retardation ». Paed & Child Health, 17(2), 71-4.
Nash JC (2008). Re-thinking intersectionality. Feminist Rev, 89(1), 1-15.
National Bioethics Advisory Commission (2001), Ethical and policy issues in research involving human participants. Bethseda, MD: National Bioethics Advisory Commission
National Health Service (2018). NHS workforce. https:// www.ethnicity-facts-figures.service.gov.uk/workforce- and-business/workforce-diversity/nhs-workforce/ latest#methodology
Newton L (2009). Reflexivity, Validity and Roses. Complicity: An Int J of Complex and Educ. 6 (2), 104–12.
NHS Health Scotland (2016). Dementia and equality – meeting the challenge in Scotland Recommendations of the National Advisory Group on Dementia and Equality. NHS Health Scotland
Nielsen TR, Andersen BB, Kastrup M, Phung TKT & Waldemar G (2011). Quality of Dementia Diagnostic Evaluation for Ethnic Minority Patients: A Nationwide Study. Dem and Geriat Cog Disord, 31(5), 388-96.
Nielsen TR, Antelius E, Spilker RS, Torkpoor R, Toresson H, Lindholm C, … on behalf of the Nordic Research
Network on Dementia and Ethnicity. (2015). Dementia care for people from ethnic minorities: A Nordic perspective: Dementia care for people from ethnic minorities: a Nordic perspective. Int J Ger Psychiat, 30(2), 217-8.
Nielsen TR & Jørgensen K (2013). Visuoconstructional Abilities in Cognitively Healthy Illiterate Turkish Immigrants: A Quantitative and Qualitative Investigation. The Clin Neuropsych, 27(4), 681-92.
Nielsen TR, Vogel A, Riepe MW, de Mendonça A, Rodriguez G, Nobili F, … Waldemar G (2011). Assessment of dementia in ethnic minority patients in Europe: A European Alzheimer’s Disease Consortium survey. Int Psychoger, 23(1), 86-95.
Nordentoft HM & Kappel N (2011). Vulnerable participants in health research: Methodological and ethical challenges. J Soc Work Pract, 25(3), 365-76.
Nuffield Council on Bioethics (2009). Dementia: ethical issues. Cambridge: Cambridge Publishers Ltd. http:// nuffieldbioethics.org/wp-content/uploads/2014/07/ Dementia-report-Oct-09.pdf
Office for National Statistics (2014). Internet Access Quarterly Update: Q1 2014. https://www.ons.gov.uk
O’Reilly-de Brún M, de Brún T, Okonkwo E, BonsengeBokanga JS, De Almeida Silva MM, Ogbebor F, Mierzejewska A, Nnadi L, van Weel-Baumgarten E,van Weel C, van den Muijsenbergh M & MacFarlane A (2016). Using Participatory Learning & Action research to access and engage with ‘hard to reach’ migrants in primary healthcare research. BMC Health Serv Res.16, 25.
Orwig D, Rickles NM & Martin LG (2011). Methodological Issues in Pharmacotherapy Research in Older Adults. The Am J Geriat Pharmacotherapy, 9(3), 173-89.
Palm R, Jünger S, Reuther S, Schwab CGG, Dichter MN, Holle B & Halek M (2016). People with dementia in nursing home research: A methodological review of the definition and identification of the study population. BMC Geriatrics, 16(1).
Parfit D (1984). Reasons and Persons. Oxford: Clarendon Press.
Parveen S, Peltier C & Oyebode JR (2017). Perceptions of dementia and use of services in minority ethnic
communities: a scoping exercise. Health and Soc Care in the Comm, 25(2), 734–42.
Parveen S, Barker S, Kaur R, Kerry F, Mitchell W, Happs A, … Oyebode JR (2018). Involving minority ethnic communities and diverse experts by experiencein dementia research: The Caregiving HOPE Study. Dementia, 17(8), 990-1000.
Patino CM & Ferreira JC (2018). Inclusion and exclusion criteria in research studies: Definitions and why they matter. Jornal Brasileiro de Pneumologia, 44(2), 84.
Patterson S, Trite J & Weaver T (2014). Activity and views of service users involved in mental health research: UK survey. Brit J of Psychiat, 205(1), 68-75.
PCORI (2015). Financial compensation of patients, caregivers, and patient/caregiver organizations engaged in pcori-funded research as engaged research partners. Patient-Centered Outcomes Research Institute
Peisah C, Burns K, Edmonds S & Brodaty H (2018).
Rendering visible the previously invisible in health care: the ageing LGBTI communities, MJA, 3, 106–8.
Pierce R (2010). A changing landscape for advance directives in dementia research. Soc Science & Med, 70, 623–30.
Poland F, Mapes S, Pinnock H, Katona C, Sorensen S, Fox C & Maidment ID (2014). Perspectives of carers on medication management in dementia: Lessons from collaboratively developing a research proposal. BMC Res Notes, 7(1), 463.
Poland F, Charlesworth G, Leung P & Birt L (2019). Embedding patient and public involvement: Managing tacit and explicit expectations. Health Expect, hex.12952.
Porter L (2010). Unlearning the colonial cultures of planning.
Surrey: Ashgate Purdie-Vaughns, V., & Eibach, R. P. (2008). Intersectional Invisibility: The Distinctive Advantages and Disadvantages of Multiple Subordinate-Group Identities. Sex Roles, 59(5-6), 377-91.
Porteri C (2018). Advance directives as a tool to respect patients’ values and preferences: discussion on the case of Alzheimer’s disease. BMC Med Ethics, 19, 9
Post SG (2006). The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying. John Baltimore: Hopkins University Press
Pyett P (2002). Working together to reduce health inequalities reflections on a collaborative participatory approach to health research. Austral and New Zeal J of Pub Health, 26(4), 332-6.
Richardson HS (2008). Incidental findings and ancillarycare obligations. J Law, Med and Ethics, 36, 2: 256–70.
Right to Education (2018). Persons with disabilities.
Accessed online on 8 August at: https://www.rightto-education.org/issue-page/marginalised-groups/ persons-disabilities
Ritchie J & Lewis J (2009). Qualitative research practice.
London: Sage Publications.
Rose D & Kalathil J (2019). Power, Privilege and Knowledge: The Untenable Promise of Co-production in Mental “Health”. Frontiers in Sociol, 4.
Rosner ID (2015). From exclusion to inclusion: involving people with intellectual disabilities in research. Tiltai, 72(3), 119-28.
Ryan L, & Golden A (2006). “Tick the Box Please”: A Reflexive Approach to Doing Quantitative Social Research. Sociology, 40(6), 1191–1200.
Sagbakken M, Spilker RS & Ingebretsen R (2018). Dementia and Migration: Family Care Patterns Merging With Public Care Services. Qual Health Res, 28(1), 16-29.
Savulescu J & Hope T (2010). The ethics of research. In The Routledge companion to ethics. (Ed. Skorupski J), Routledge.
Scottish Dementia Working Group Research Sub-Group, UK (2014). Core principles for involving people with dementia in research: Innovative practice. Dementia, 13(5), 680-5.
Shah A (2007). Demographic Changes among Ethnic Minority Elders in England and Wales: Implications for Development and Delivery of Old Age Psychiatry Services. Int J Migr, Health and Soc Care, 3(2), 22-32.
Sharkey K, Savulescu J, Aranda S & Schofield P (2010). Clinician gate-keeping in clinical research is not ethically defensible: An analysis. J Med Ethics, 36(6), 363–6.
Shaw R, Howe J, Beazer J & Carr T (2019). Ethics and positionality in qualitative research with vulnerable and marginal groups, Qualitative Research, 1–17
Simmons MB & Gooding PM (2017). Spot the difference: shared decision-making and supported decisionmaking in mental health. Irish J of Psychol Med, 34, 275–286.
Simundic A-M (2013). Bias in research. Biochemia Medica, 12-15.
Sin CH (2005). Seeking Informed Consent: Reflections on Research Practice. Sociology, 39(2), 277-94.
Smedley A & Smedley BD (2005). Race as biology is fiction, racism as a social problem is real: Anthropological
and historical perspectives on the social construction of race. Amer Psychol, 60(1), 16-26.
Smiley M (1993). Feminist Theory and the Question of Identity. Women & Politics, 13(2), 91-122.
Smith LJ (2008). How ethical is ethical research?
Recruiting marginalized, vulnerable groups into health services research. J Adv Nurs, 62(2), 248-57.
Snowdon DA (2003), Healthy aging and dementia: Findings from the nun study. Ann Intern Med, 139, S Pl2, 450–4.
Sox HC (2009). Comparative Effectiveness Research: A Report From the Institute of Medicine. Annals of Int Med, 151(3), 203.
Staley K (2013). There is no paradox with PI in research. J Med Ethics, 39(3), 186-7.
Stangor C & Crandall CS (2000). Threat and the social construction of stigma. In T. F. Heatherton, R. E. Kleck,
M.    R. Hebl, & J. G. Hull (Eds.), The social psychology of stigma (pp. 62–87). New York, NY, US: Guilford Press.
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, … Tysall C (2017). GRIPP2 reporting
checklists: Tools to improve reporting of patient and public involvement in research. BMJ, j3453.
Staniszewska S, Brett, J, Mockford C & Barber R (2011). The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. Int J of Techn Assess in Health Care, 27(4), 391–9.
Tashakkori A & Teddlie C (1998). Mixed methodology.
Combining qualitative and quantitative approaches. London: Sage Publications
Taylor GT & Wainwright P (2005). Open label extension studies: research or marketing. Brit Med Jour, 331, 572–4.
Taylor J (2019). Reporting research findings to participants is an ethical imperative: Dissemination must
become the default expectation for all research, BMJ, 367(l6324), 1–2.
Tembo D, Morrow E, Worswick L & Lennard D (2019). Is Co-production Just a Pipe Dream for Applied Health Research Commissioning? An Exploratory Literature Review. Frontiers in Sociol, 4, 50.
Thorogood A, Mäki-Petäjä-Leinonen A, Brodaty H, Dalpé G, Gastmans C, Gauthiere S, Gove D Harding R, Knoppers BM, Rossor M, Bobrowi M, on behalf of the Global Alliance for Genomics and Health,
Ageing and Dementia Task Team (2018). Consent recommendations for research and international data sharing involving persons with dementia. Alzheimer’s
& Dementia, 14, 1334–43.
Tinetti ME & Studenski SA (2011). Comparative Effectiveness Research and Patients with Multiple Chronic Conditions. New Engl J of Med, 364(26), 2478-81.
Torres S (2015). Expanding the gerontological imagination on ethnicity: Conceptual and theoretical perspectives. Ageing and Society, 35(5), 935-60.
Trochim WMK (2006). Probability sampling. Accessed on 24 July 2019 at: https://socialresearchmethods.net/kb/ sampprob.php
Tromp K, Zwaan CM & van de Vathorst S (2016). Motivations of children and their parents to participate in drug research: a systematic review. Eur J Pediatr, 175(5), 599–612.
Tromp K & van de Vathorst S (2015). Gatekeeping by professionals in recruitment of pediatric research participants: Indeed an undesirable practice. Am J Bioeth, 15(11), 30–32.
Tromp K & van de Vathorst S (2018). Patients’ trust as fundament for research ethics boards. Am J Bioeth, 18(4), 42–4.
Tyack D (1995), “Schooling and social diversity: historical relations. In W.D. Hawley and A.W. Jackson (eds.), Toward a common destiny: improving race and ethnic relations in America, Jossey-Bass Publishers, 3–38
United Nations (2019). Refugees and migrants: definitions. https://refugeesmigrants.un.org/definitions
Uppal GK, Bonas S & Philpott H (2013). Understanding and awareness of dementia in the Sikh community. Ment Health, Relig & Cult, 17(4), 400–14.
Uppal G & Bonas S (2014). Constructions of dementia in the South Asian community: A systematic literature review. Ment Health, Relig & Cult, 17(2), 143-60.
Uysal-Bozkir Ö, Parlevliet JL & de Rooij SE (2013). Insufficient cross-cultural adaptations and psychometric properties for many translated health assessment scales: A systematic review. J of Clin Epidem, 66, 608–18.
Vertovec S (2007). Super-diversity and its implications. Ethnic and Racial Studies, 30, 1024–54.
Vollmann J (2001). Advance directives in patients with Alzheimer’s disease. Med, Health Care and Philos, 4, 161–7.
Watchman K (2014). Intellectual disability and dementia: research into practice. London, Jessica Kingsley Publisher.
Weijer C (2000). ETHICS: Protecting Communities in Biomedical Research. Science, 289(5482), 1142-4.
Weiner MW (2010). About ADNI. Accessed online on 26 October 2011 at: http://adni.loni.ucla.edu/about/
Wendler D, Kington R, Madans J, Wye GV, … Emanuel E (2005). Are Racial and Ethnic Minorities Less Willing to Participate in Health Research? PLoS Med, 3(2), e19.
Werner P & Heinik J (2008). Stigma by association and Alzheimer’s disease. Aging & Ment Health, 12(1), 92-9.
Wilson J (2000). Volunteering. Annu Rev Sociol, 26, 215–40.
Witham G, Beddow A & Haigh C (2015). Reflections on access: Too vulnerable to research? J Res in Nurs, 20(1), 28-37.
Woods B, Arosio F, Diaz A, Gove D, Holmerová I, Kinnaird L, … Georges J (2019). Timely diagnosis of dementia? Family carers’ experiences in 5 European countries. Int J Geriat Psychiat, 34(1), 114-21.
World Health Organisation (2019). Ageing and life course: ageism. Accessed on 7 August at: https://www.who. int/ageing/ageism/en/
World Medical Association (2013). Declaration of Helsinki. www.wma.net/policies-post/
wma-declaration-of-helsinki-ethical-principles-formedical-research-involving-humansubjects.
Young A, Ferguson-Coleman E & Keady J (2018). Authentic public and patient involvement with Deaf sign language users: It is not just about language access. Dementia, 17(8), 1001-1010.
Young A, Ferguson-Coleman E & Keady J (2018).
Understanding the personhood of Deaf people with dementia: Methodological issues. J of Aging Stud, 31, 62–9.
Zion D, Gillan L & Loff B (2002). The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations. Nature Medicine, 6, 615–17.
Zulman DM, Sussman JB, Chen X, Cigolle CT, Blaum CS & Hayward RA (2011). Examining the evidence: a systematic review of the inclusion and analysis of older adults in randomized controlled trials. J Gen Intern Med, 26(7), 783–90.

 

 
 

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