Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees

O'Connor, Claire M.; Liddle, Jacki; O’Reilly, Maria; Meyer, Claudia; Cartwright, Jade; Chisholm, Marita; Conway, Erin; Fielding, Elaine; Fox, Amanda; MacAndrew, Margaret; Schnitker, Linda; Travers, Catherine; Watson, Karen; While, Christine; Bail, Kasia

doi:10.1111/ajag.13023

Cited by 13 publications

(17 citation statements)

References 18 publications

(21 reference statements)

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“…Workshop participants underscored that research processes must be continuously person‐centred and engage a person who has cognitive impairment in decisions about themselves. When a person who expressed willingness for research participation in a directive has an opportunity to take part in a particular research activity, it is essential to elicit their current perspectives 1 . As the National Statement provides ‘ [r]efusal or reluctance to participate in a research project by a person with a cognitive impairment … should be respected ’ 18 .…”

Section: Resultsmentioning

confidence: 99%

“…When a person who expressed willingness for research participation in a directive has an opportunity to take part in a particular research activity, it is essential to elicit their current perspectives. 1 As the National Statement provides '[r]efusal or reluctance to participate in a research project by a person with a cognitive impairment … should be respected'. 18(4.5.11) Consistent with the ethical principle of justice, people should not be excluded from opportunities to take part in research because they do not have a research directive.…”

Section: Core Values and Personcentred Approachesmentioning

confidence: 99%

“…The denial of opportunities to participate in research is a human rights issue for people living with dementia. Research inclusion at all stages of dementia is necessary to build the evidence for care and support, 1 yet there are longstanding problems with the under‐representation of people with dementia in research, and in particular those with more advanced cognitive impairment 2 . In circumstances where potential participants are unable to give their own consent to research, other people are involved in decisions in formal and informal ways.…”

Section: Introductionmentioning

confidence: 99%

“…Through this process, people have an opportunity to consider their wishes at a time when they have the capacity to do so. Having conversations with family members and other key people in the person's life can prepare those who are often ‘ a vital component to support participation ’ 1 (p311) to know and advocate for the person's wishes. An advance research directive can strengthen authentic decision‐making by those exercising legal authority, where authenticity ‘ is informed by knowledge of the person's values and is motivated by respect for the person ’ 6 .…”

Section: Introductionmentioning

confidence: 99%

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Advance planning for research participation: Time to translate this innovation into practice

et al. 2022

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Objectives Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health‐related research, policy‐making, advocacy and service delivery in health and aged care. Methods An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. Results Raising awareness of advance research planning requires multi‐faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person‐centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. Conclusions As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

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Section: Resultsmentioning

confidence: 99%

Section: Core Values and Personcentred Approachesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Advance planning for research participation: Time to translate this innovation into practice

et al. 2022

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“…Dementia researchers have a long history of exerting power by limiting options and information and not ensuring that circumstances uphold the moral agency of participants. 17,18 In contrast, relational understandings of autonomy encourage examination of inherent power dynamics and the tacit ways that the agency of people with dementia and their carers' is supported or undermined.…”

Section: Development Of the Virtual Art Exhibitmentioning

confidence: 99%

Co-creating an Art Exhibition on Living Well With Dementia

Puurveen

Cox

Damiano

et al. 2022

AMA Journal of Ethics

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This article considers ethical questions raised during development of an online art exhibit for and with people with dementia and their care partners. This article also describes a participant engagement process emphasizing patient autonomy as a means of dismantling stigma, promoting personhood, and stimulating community engagement. This cocreative project suggests the potential for patients' art to spark attitude change and promote reciprocal, regenerative care practices.Including People With Dementia By 2030, Alzheimer's Disease International estimates that 74.7 million people will be living with dementia worldwide. 1 The illness is a major and increasing cause of disability associated with impairment and deterioration of memory and other mental abilities, communication and behavior disruptions, and decreased capacity for everyday activities. 1 With no known cure and limited efficacy of pharmacological treatments in ameliorating cognitive decline, 2,3 dementia significantly influences individuals', families', and communities' health and well-being. There is mounting interest in forms of psychosocial care, including arts-based interventions, which aim to facilitate "living well" with the dementia. 4,5 Moreover, there is now recognition that perspectives of people living with dementia should be included in effective care intervention development. 6 Historically, this population has been omitted from conversations about care and from research owing to assumptions that they are unreliable narrators of their own stories. 7 Despite ethical and methodological challenges, the benefits of involving people with dementia in research far outweigh such challenges. 8,9,10,11 Participatory research, particularly qualitative and arts-based approaches, has demonstrated the efficacy of first-person perspectives in promoting agency and autonomy through aligning research methods with persons' capabilities and experiences, 10,11 which can help temper participants' feelings of shame, anxiety, and fear of being open about their condition. For the wider public, hearing the voices of those with lived experience of dementia can call into question false assumptions about what the diagnosis means and diminish stigma related to a fear of the unknown.

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Legally Effective but Ethically Inadequate: Institutional Review Board Policies for Consent from Legally Authorized Representatives

Harrison

2023

Ethics & Human Research

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The prevailing approach to enrolling decisionally impaired adults in clinical research is to rely on permission from a default surrogate, one identified by law rather than by the prospective research participant. Reliance on a surrogate transfers the focus of ethical protection from a researcher-participant relationship to a researcher-surrogate relationship; the selection and role of the surrogate are therefore important. The Common Rule defers to state law governing default surrogate consent to research, but most states have no such law; for those states, the Common Rule defers to institutional policy. I reviewed twenty-five of the study sites with the highest National Institutes of Health funding levels to elaborate the content of institutional review board (IRB) policies and compare those to a suggested paradigm for ethically defensible policies. My findings suggest that IRB policies provide inadequate protection because they recognize surrogates who lack knowledge of the subject's current values and preferences without imposing adequate additional safeguards.

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Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees

Cited by 13 publications

References 18 publications

Advance planning for research participation: Time to translate this innovation into practice

Advance planning for research participation: Time to translate this innovation into practice

Co-creating an Art Exhibition on Living Well With Dementia

Legally Effective but Ethically Inadequate: Institutional Review Board Policies for Consent from Legally Authorized Representatives

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