Obtaining consent for research from people with dementia: Do we try hard enough?

A/Prof. Deirdre Fetherstonhaugh1, Professor Elizabeth  Beattie2, Dr  Maria  O’Reilly3, Mr  Mitchell  McMaster4, Professor  Wendy Moyle5, Dr  Elaine Fielding2

1La Trobe University, Bundoora, Australia, 2Queensland University of Technology, Brisbane, Australia, 3Central Queensland University, Bundaberg, Australia, 4Australian National University, Canberra, Australia, 5Griffith University, Brisbane, Australia

The Australian National Statement recognises the right of people with dementia to participate in research. However, the assumption is often made that people with dementia cannot provide their own informed consent to participate in research and therefore historically researchers default to seeking consent from a proxy or substitute decision-maker. In so doing however the person with dementia is denied their right to exercise their autonomous choices, and there is disregard for their agency.

As part of a national study into quality of life of people with dementia living in Australian nursing homes we sought to determine how many of the potential participants with dementia could provide their own informed consent as determined by the ‘Evaluation to Sign Consent (ESC)’ instrument; a tool designed to measure understanding.

The ESC instrument was administered to three hundred and ninety two people with dementia. Informed consent for participation in the research was then obtained from those people who met the criteria of the ESC. Demographic information was collected about their age, gender and level of cognitive impairment.

Just over one fifth (22%) of the people with dementia who were administered the ESC were deemed capable of providing consent to participate in this specific research project. This demonstrates that assuming all people diagnosed with dementia are unable to provide informed consent for research potentially denies them the autonomy to make a decision that they may be capable of making.

This paper will discuss the ethics and practicalities of obtaining consent for research from people with dementia.


Biography: 

Deirdre Fetherstonhaugh is a researcher and academic ethicist. Her research focuses on: the translation of research evidence into practice; the ethical implications of clinical practice; decision-making for people with dementia; sexuality and dementia; and clinical risk in aged care. Deirdre also develops and delivers education to health professionals and aged care workers. She is an associate professor and director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University.