“Most people lack capacity here”. The ethical and methodological challenges of conducting research in care homes for older adults

Abstract

Recent figures suggest that in excess of 80% of care home residents have dementia or significant memory problems (Alzheimer’s Society, 2013), presenting researchers with significant challenges when designing and conducting research in these settings. Whilst not everyone included in this figure will necessary fall under the remit of the Mental Capacity Act, any research planning to take an inclusive approach will have to: (1) justify the inclusion of people who might lack capacity to give their own consent and (2) address the ethical and methodological challenges that this presents. This paper reflects on our own experiences of conducting research in care homes for older people and reports on the challenges we have faced over the last year, as well as the strategies we have adopted to overcome them. We begin by considering the frequently used term “they lack capacity” and relate this back to the Mental Capacity Act and how it is implemented by Research Ethics Committees. After considering the ethical issues, we move on to discuss the practicalities of complying with the requirements of the Act in a care home environment. We share our own experiences of involving ‘consultees’ and discuss the burden this places on care home staff and the implications this has for the design of future research