Ethical Issues in Dementia Research

Abstract

Dementia is a global public health issue with an urgent need for developing newer and more effective treatment strategies. Research in the area of dementia, however, poses unique ethical and legal challenges. Epidemiological studies, studies on pharmacological and non-pharmacological interventions have to deal with obtaining consent from persons with cognitive impairments, those from diverse cultural groups and need to contend with privacy and confidentiality issues. The caregiver support intervention research has not yet translated into policy change and effective clinical care. Biomedical research that involves invasive procedures may not translate into short- or long-term therapeutic benefits but is necessary research. Palliative care research in dementia has to deal with ethical issues involving people at end-of-life research. Proposed research may not receive approval, citing necessary safeguards to the vulnerable older people against invasive studies even when it is least invasive. This article aims to review the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective. Some of the safeguards for ethical research include determining capacity to consent, obtaining advanced directives in early stages and proxy consent from caregivers, obtaining informed consent in cognitively impaired individuals. Future research policies need to consider the logistics of involving older people in research, enhancing caregiver support, and encouraging supportive decision-making. It will also need to address developing capacity assessment tools while addressing advanced care planning that will ensure the well-being of subjects in research. Background: Dementia has become a global public health issue, with hospitalization rates being 65% higher in seniors with dementia than others. 1 , 2 The pressures on healthcare systems mean an urgent need to develop robust preventive and treatment strategies for dementia, which requires multidisciplinary research. However, the patient’s stage of illness and ability to engage in discussions around the merits of participating in research and caregiver concerns is an important aspect of dementia research. Hence, dementia research poses unique ethical challenges compared to populations with other diseases, which has led to the evolution of an ethical framework for dementia research. This article aims to review and give a viewpoint on the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective.

The use of technology by seniors with neurocognitive disorders in long-term care: a scoping review

“…It is crucial to consider the distinct challenges associated with various stages of NCD, particularly found in individuals with major NCD. This clientele, which is prevalent in LTC, is often excluded from research studies, due to ethical concerns [ 60 ]. This creates a knowledge void in understanding the specific needs of these residents and the care required to meet them.…”

Measuring the success of programmes of care for people living with dementia: a protocol for consensus building with consumers to develop a set of Core Outcome Measures for Improving Care (COM-IC)

“…The potential involvement of people with cognitive impairment carries additional ethical considerations. 25 26 Involvement of people living with dementia is actively encouraged and supported to maximise inclusivity, with levels of influence and support tailored to individual capabilities. People with a lived experience of dementia will be involved with all aspects of research design and implementation.…”

Understanding, experiences and attitudes of dementia in India: A qualitative study

“…Consent from the person with dementia was sought and in the case that the person with dementia was unable to provide informed consent (this was judged by the research team, which consisted of a dementia psychologist), proxy consent was taken from the family member that accompanied them. During the interviews with people with dementia, the caregiver was present (Chandra et al, 2021).…”