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P18.Ethics of care and assistive technologies

Detailed programme and abstracts

P18.1. Opportunities and risks of supported decision-making in dementia research: An ethical analysis

SCHOLTEN Matthé, GATHER Jakov, VOLLMANN Jochen

According to the interpretation of the Committee on the Rights of People with Disabilities (the Committee), article 12 of the United Nations Convention on the Rights of People with Disabilities (CRPD) represents a radical departure from the widely accepted functional approach to competence assessment, along with acknowledged procedures of substitute decision-making, in favor of a new paradigm of supported decision-making. Although we share the Committee’s concerns about the discrimination of persons with mental disabilities and welcome the development of new capacity-enhancing tools, in this presentation we express several reservations regarding the model of supported decision-making proposed by the Committee.

Our main worry is that on the proposed model supported decision-making runs the risk of turning into masked substitute decision-making. This in turn renders persons with dementia vulnerable to abuse and exploitation. In particular, we show that supported decision-making without capacity assessment (1) increases the risk of undue influence, (2) exempts support persons from responsibility for the decision to take part in research along with its possible consequences and hence fails to provide proper checks and balances and (3) fails to specify criteria for the allocation of decision-support. To forestall these adverse consequences, we propose and alternative model of supported decision-making that involves a more limited and case-specific application of decision-support combined with a clear idea of the individual competence of persons participating in clinical dementia research.

P18.2. Make-believe, make-experience, make-play

KAMPHOF Ike, HENDRIKS Ruud

Three main developments lead to a wealth of low- and high-tech material innovations in dementia care that either actively create or passively respond to ‘alternative realities’ often experienced by people with dementia: 1. The rise of person-centered care that requires to move beyond offering basic physical care to providing comfort, intimacy, meaningful experiences and -occupations; 2. The growing awareness that people with cognitive disabilities may be fruitfully supported by care interventions that transform their environment and address them on the level of sensual-emotional experience; 3. The emergence of an industry that markets ever new products to respond to needs emerging from 1 and 2. Examples include sociable robots, interactive dolls and pets that offer people with dementia company; film- and virtual-reality installations for enrichment; architectural and other interventions that make environments more transparent for navigation and support the use of everyday objects; and interventions for safety such as electronically controlled doors or camouflaged exits. Ethical assessment of these material interventions is urgently needed. Under which conditions are they supportive of people with dementia as persons and when they do they become deceptive and manipulative? The research project Make-Believe Matters. The Moral Role Things Play in Dementia Care (ZonMW, 03/2016-02/2018) addresses this question in close co-operation with professionals in care and design and people with dementia. Where we discussed some initial case studies at Alzheimer Europe in Copenhagen, we are now ready to present the outline of the ethical guidelines and educational module that form the main objectives of the project. In this outline, existing ethical frameworks dealing with deception in dementia care, are supplemented with guidance that particularly addresses how objects co-shape users, experiences and interactions. Relevant values move beyond autonomy and beneficence to authenticity, dignity, trustworthiness, shared play and others indicating what makes live with dementia worth living.

P18.3. Assistive technologies to address capabilities of people with dementia: from research to practice

KENIGSBERG Paul-Ariel, AQUINO Jean-Pierre, BÉRARD Alain, BRÉMOND François, CHARRAS Kevin, DENING Tom, DROËS Rose-Marie, GZIL Fabrice, HICKS Ben, INNES Anthea, NGUYEN Mai, NYGÅRD Louise, PINO Maribel, SACCO Guillaume, SALMON Eric, van der ROEST Henriëtte, VILLET Hervé, VILLEZ Marion, ROBERT Philippe, MANERA Valeria

Assistive technologies (AT) became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyse how AT can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where AT can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This presentation summarizes how these concepts took momentum in professional practice and public policies in the past fifteen years (2000-2015), discusses current issues in the design, development and economic model of AT for people with dementia, and covers how these technologies are being used and assessed.

P18.4. The ethics of restraint in care homes

STRAIN Joanne, MITCHELL Gary, SHEERAN Colin, ROYSTON Claire

Broadly speaking, restraint is something that is unacceptable in healthcare.  This is because, by its very nature, it deprives the patient of their liberty which is a fundamental human right.  Furthermore, there have been a range of media reports on the detrimental impact of restraint in healthcare practice.  However healthcare professionals must also be aware that sometimes, as a last resort, restraint practises may serve to protect some people living with dementia.

The aim of this presentation is to critically examine existing literature on the use of restraint for people living with dementia in care home settings.  The review considers the use of physical, psychological, mechanical, technological and chemical restraint.  The literature will be framed with reference to human rights, bioethics and person-centred practice through case-studies.

This presentation will provide the audience with three case-study accounts (based on the empirical literature).  The case-studies will relate to chemical restraint, technological restraint and mechanical restraint.  These cases will be analysed with reference to human rights, bioethics and person-centred practice framework.  Importantly, all three cases will present delegates with different dilemmas that may be contradicted depending on one’s interpretation of human rights, bioethics or person centred care.  The presentation will conclude by highlighting the importance of rights-based approaches to care, safeguarding and shared decision-making.  This will be illuminated by providing consideration to FSHC’s dementia care framework which provides a template when considering restraint for people living with dementia within care homes.

Importantly restraint may be justified in some circumstances in dementia care, usually when a person is putting themselves or others at risk. BUT restraining people living with dementia is usually something we should never do and certainly not without input from a multidisciplinary team of experts, the family and care partners of the individual. 

P18.5. Swiss national ethical guidelines on dementia care

BOSSHARD Georg, SALATHE Michelle

In 2014, the Swiss National Government has launched the “National Dementia Strategy” (NDS). Its main objective is to support those affected by dementia and promote their quality of life while consistently taking into account their individual circumstances.

One explicit goal of the NDS is that care for people with dementia should be based on ethical guidelines. The NDS entrusted the Swiss Society for Gerontology together with the Swiss Academy of Medical Sciences (SAMS) with this task. The SAMS is an institution supported by the federal government acting as a bridge builder between science and society. It has established a number of widely acknowledged medical-ethical guidelines in recent years on issues such as end-of-life care, ethics support, organ transplantation, research ethics, and vulnerable patient groups.

In February 2015, an interdisciplinary commission composed of experts from medicine, nursing, ethics, gerontology, and law, started to elaborate specific medical-ethical guidelines on dementia care. These guidelines will be published in June 2017, first as a preliminary version that will, as any SAMS guidelines, undergo a process of public consultation.

In this paper, some key points of these guidelines with a focus on end-of-life care will be presented and discussed as follows:

  • Appropriate treatment: Are there circumstances in which people with dementia are at risk of undertreatment, and sometimes also overtreatment? What means appropriate treatment in the context of advanced dementia?
  • Decision-making: What is the importance of advance directives and shared-decision making in the context of advanced dementia? Where are the strength and the limits of the model of advance care planning?
  • Life-sustaining treatment and hydration and nutrition: Are some types of life-sustaining treatment futile in end-stage dementia? Feeding tubes are causing more harm than good in end-stage dementia – but how to handle ethical problems of oral feeding and hydration at this stage?

P18.6. The problem of the lie in caring for people with dementia

FRETER Björn

The discussion of whether it is acceptable to lie when caring for people with dementia tends to suffer from a lack of clarity.

When using the term “lie”, we refer to claims made about reality which do not concur with the understanding of reality held by the person making them (the liar). The lie is primarily problematic for someone considering themselves to be in the same reality as the person lying to them. Following the lie, the victim lives in a reality which does not exist.

However, what happens when the person being lied to can no longer share my understanding of reality and when I am unable to access their perception of reality, which possesses its own validity? It is precisely this situation in which we find ourselves in dementia-care.

Now the lie is no longer a problem existing between the liar and the person being lied to, but instead purely an ethical problem for the liar.

The question of whether it is acceptable to lie concerns the ethical problem of the person who depicts the reality in which they live as being different from their own experience; it does not concern the person being lied to.

Even if a person with dementia can no longer process reality the way we do, they nevertheless have existential interests: Things remain important for them. Here, we can enter into direct contact with the person with dementia. The person with and the person without dementia both find themselves in the same reality in an existential sense.

We believe that with this existential activity, it is acceptable to do that which is viewed critically as a lie: We are not actually lying in this situation, we are grasping one of the few remaining possibilities to be close to the person with dementia.

 

 
 

Last Updated: Monday 23 October 2017

 

 
  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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