Legal and ethical issues

In this part of the review you will find any grey literature linked to legal and ethical issues in dementia. Currently it includes three book chapters, one of which provides a broad overview on legal aspects on dementia, whilst the second focuses more specifically on driving and the most recent considers the legal and ethical issues raised when someone is admitted to long term care either against their wished or on a “quasi-voluntary basis.” It also includes a report by the Commissioner for Older People in Northern Ireland that reviews law, policy and experience of adult social care in Northern Ireland, and includes a case study related to dementia.

Legal and ethical considerations in involuntary admissions to long term care

O'Keefe, S.
O'Keefe, S.
2015
In this chapter O’Keefe considers the legal and ethical issues raised when someone is admitted to long term care either against their wishes or on a “quasi-voluntary” basis.
He describes the lack of involvement of the person concerned that is often evidenced in planning for such a move, the lack of real choice and the pressure often placed on the person where the problem may in fact be a lack of resources within the system to support them at home or lack of capacity within a family. O’Keefe argues that current practice provides no safeguards and is in fact both unethical and unlawful. He describes practices where an element of subterfuge is involved in admission, for example the pretence that the admission is for respite or convalescence and in retention, where locked doors and lack of support for the person to make arrangements to return home mean they are unable to leave. O’Keefe describes the current legal framework covering involuntary admissions in Ireland, highlighting the differences between those detained under the Mental Health Act 2001 who have a right to legal representation and review, and those admitted to nursing homes who are not entitled to the same protections. He points out that the age of many admitted to nursing homes in this way means they may be detained for the rest of their lives with no review. New capacity legislation has the potential to impact on this situation but only when it is fully understood and acted upon by Healthcare staff. Most involuntary admissions to nursing homes are motivated by genuine concern and sometimes fear for a person’s safety but O’Keefe cautions against generalisation or exaggeration, where for example judgements are made based on the worst possible scenario or on a one off safety issue rather than on a person’s usual or best experience or behaviour. He also discusses the conflict that can occur between meeting the needs of carers and those of the person with dementia. He concludes that healthcare professionals are key when decisions on where someone is going to live are being considered and while they have professional expertise, they do not have expertise on an individual’s understanding of what constitutes a good life and how acceptable a nursing home is in their understanding of that life. He urges us to be mindful of the seriousness of the decision to admit someone on an involuntary basis, even when the circumstances seem to justify the decision and argues that it is completely unacceptable that these decisions are not scrutinised in the same way as detentions under Mental Health Legislation.

COPNI Prepared to Care: Modernising Adult Social Care in Northern Ireland

Commissioner for Older People for Northern Ireland
Commissioner for Older People for Northern Ireland
2015
This report provides a review of law, policy and experience of adult social care in Northern Ireland, and includes a case study related to dementia. The commissioner finds that legislation and policy in this area is fragmented and confusing.
There is a lack of clarity on how to access services and a lack of availability of suitable services. The commissioner calls for modernisation and reform recommending a new single legislative framework for Adult Social Care with accompanying guidance for implementation. The report also recommends preventative support measures for older people and argues that future funding must not discriminate against older people with higher levels of need.

The Law and Ethics of Dementia

Donnelly, M, D
Hart Publishing Ltd
2014

Two authors from ROI contributed to this book discussing the many complex legal and ethical issues associated with dementia. The book is written from the perspectives of clinicians, lawyers, ethicists, those living with dementia and caring for someone with dementia.

Donnelly’s chapter introduces the section on legal perspectives providing a general overview that sets the scene for the chapters to follow; the section discusses issues as diverse as assessing capacity, proxy decision making, being lost and the use of new technology with people who have dementia.  O’Neill contributes a chapter on dementia and driving in a section on social perspectives that considers a range of issues, namely, discrimination, physical, financial and other abuse, driving, voting and political participation.