Prof. Mary Donnelly, School of Law, University College Cork
New technologies have enormous potential to improve the quality of life and to extend the available options and choices for older people. Devices such as smart phones can provide memory aids, automated reminders (eg. around the need to take medication) and alarms. Locator devices such as electronic tags may help locate mislaid objects and/or allow lost or wandering people to be found. Homes can be adapted to monitor for dangers and/or falls or accidents and to automatically turn off electricity, water or gas. These ‘smart’ homes can facilitate older people, including older people with dementia, to continue living independent lives (Alzheimer Europe, 2010; Alzheimer Society, 2015). Technology can also provide a measure of reassurance to family members or carers, which in turn can reduce the pressures placed on older people to take the ‘safer’ option of nursing home admission.
The potential of technology is only starting to be tapped in Ireland and a great deal more can be done by clinicians and other healthcare professionals as well as by supporters/carers and support organisations to help older people to access the benefits of technology. Ensuring access to assistive technology is increasingly recognised as a human rights issue (Bennett, 2018). However, in providing access to technology, it is also essential to recognise and respect the privacy rights of the older person. Under Irish law, everyone has a right to privacy which is protected by both the Constitution of Ireland and the European Convention on Human Rights. This right is not lost because a person is older or because s/he has reduced decision-making capacity, eg because of dementia. The privacy of personal data of EU citizens is also protected under the General Data Protection Regulation (GDPR) which came into force in May 2018. ‘Personal data’ includes photographs and recordings. However, the GDPR does not apply to the processing of personal data in the course of a ‘purely personal or household activity’. This ‘household exemption’ means that family photos or videos are not subject to the GDPR. It also means that CCTV/video recording when used within the home falls outside the GDPR.
The importance of privacy rights means that the starting point for any engagement with technology must be the informed consent of the older person. Older people, including older people with dementia, are presumed to have capacity to consent. Capacity in this context means the capacity to understand, retain, use and weigh and communicate a decision about the use of the technology in question. This means that the first step when considering the use of technologies must be to explain the technology and its implications to the older person and to seek consent to its use. This may give rise to tensions if, for example carers/family members wish to use certain technologies, such as a monitoring device or video camera/CCTV, without the knowledge of an older person. However, where the older person has the capacity to make decisions about using a monitoring device or other technology, the requirement that his or her informed consent must be obtained is not negotiable.
Informed consent in this context includes an explanation of the benefits and risks of the technology in question. The benefits include safety but also possibly greater autonomy and independence. The risks include individual invasions of privacy eg. one’s family will be able to monitor one’s movement and also the most wide-ranging threats to privacy which come from ‘big data’ and ‘surveillance capitalism’ (Zuboff, 2018).
For people with a progressive condition like dementia, the use of advance decision-making may also be helpful. Advance instructions about the use of monitoring or other technologies which invade privacy do not have a formal legal status. However, they are an important record of the person’s will and preferences and so they provide valuable guidance as to how to respond if a person has subsequently lost decision-making capacity.
Finally, where a person lacks the capacity to make decisions about consent to the use of technology, a call has to be made as to whether technology which is invasive of privacy may be used. The Assisted Decision-Making (Capacity) Act 2015, which has been enacted but not yet commenced, provides valuable guidance in this regard. This Act sets out principles which direct decision-making where a person lacks capacity. These include respect for the person’s past and present will and preferences. This requires consultation and involvement of the person even if s/he does not have decision-making capacity and also engagement with any advance instructions. Also central are the requirements to minimise interference with the person’s rights to dignity and privacy and also to adopt a proportionate approach. So, for example, sensors are preferable to CCTV or videos because they minimise the degree of interference with the person’s privacy.
At the end of the day, technology presents both potential benefits and challenges for those who provide care for older people. In this complex and fast-evolving context, there are few neat answers. However, the immutable principle at the heart of decision-making in this context is that the older person must be central to all decisions made.
Alzheimer Europe (2010) The Ethical Issues Linked to the Use of Assistive Technology in Dementia Care. Alzheimer Europe.
Alzheimer’s Society (2015) Assistive Technology - Devices to Help with Everyday Living: Fact Sheet. Alzheimer’s Society UK.
Bennett, B. (2018) Technology, Aging and Human Rights: Challenges for an Aging World. International Journal of Law and Psychiatry. 66 /doi.org/10.1016/j.ijlp.2019.
Zuboff, S. (2018) The Age of Surveillance Capitalism: The Fight for a Human Future at the New Frontier of Power. New York: Hachette Books.
Mary Donnelly is a Professor and Vice Dean of the School of Law at University College Cork. She researches in the fields of mental capacity/mental health/health law. Her books include Healthcare Decision-Making and the Law: Autonomy, Capacity and the Limits of Liberalism (Cambridge: Cambridge University Press, 2010) and she is co-author of End-of-Life Care: Ethics and Law (Cork University Press, 2011) and co-editor of Ethical and Legal Debates in Irish Healthcare: Confronting Complexities (Manchester University Press, 2016). She was a member of the Expert Group to review the Mental Health Act 2001 (2013-2015) and is a member of the Mental Health Commission Legislation Committee. She was Chair of the Technical Expert Group to develop Codes of Practice under the Assisted Decision-Making (Capacity) Act 2015 and is the joint chair of the Health Service Executive National Consent Advisory Group/Assisted Decision Making Steering Group and the Chair the Ministerial Working Group on Advance Healthcare Directives.