A review of ethical issues in dementia

Abstract

Dementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementia's progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementia's symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimer's to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

Informed Consent to Research with Cognitively Impaired Adults: Transdisciplinary Challenges and Opportunities

“…Trials testing the effect of interventions to improve adherence post-surgery have also excluded cognitively impaired older adults (Rosal et al, 2011) meaning the field also lacks evidence to inform best-practices in post-op care. Although there is ample evidence that cognitively impaired older adults can report their preferences and quality of life (Jefferson et al, 2012; Johnson & Karlawish, 2015; S. Y. Kim, Appelbaum, et al, 2011; Miller, Whitlatch, & Lyons, 2014; Palmer et al, 2013; Reamy, Kim, Zarit, & Whitlatch, 2011, 2013), researchers’ often believe these patients cannot accurately and reliably report quality of life outcomes and choose to exclude them based partly on this assumption (Hebert-Davies, Laflamme, Rouleau, Health, & investigators, 2012; Mundi, Chaudhry, & Bhandari, 2014).…”

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice

“…On a macro level, there is a set of interventions regarding the legal and normative aspects of care to protect and promote the possibility for the person with dementia to be part of the process of decision-making and regarding mental competencythe ability to make decisions for oneself -(Bahar-Fuchs, Caddell & Clare, 2011;Galeotti et al, 2012;Johnson & Karlawish, 2015;Mariani et al, in press;Sabat, 2005;Span et al, 2014;Woods et al, 2012), social inclusion (Innes, Archibald, & Murphy, 2004), and issues related to human rights and ethics (Johnson & Karlawish, 2015).…”

The Effect of the Association between Donepezil and Choline Alphoscerate on Behavioral Disturbances in Alzheimer’s Disease: Interim Results of the ASCOMALVA Trial

“…The impact of BPSD on direct and indirect costs of AD [7] leads to higher institutionalization rate [8,9]. BPSD impair the quality of life of the caregivers [10], contributing to AD intangible costs, an aspect which is still overlooked, but which deserves attention and should thus be accurately evaluated [7].…”

“…For instance, a reasonable question is what interventions and treatments could be recommended for dementia-related behaviors and if anti-psychotic medications are an acceptable therapy for the treatment of dementia-related behavioral disturbances. This due to the reported increased risk of mortality associated with antipsychotics in patients with BPSD [8][9][10]. Several other ethical concerns come from the use of electronic tracking for AD individuals at risk for wandering [11].…”