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P31. Rights and dementia-friendly society: Consent and decision-making

Detailed programme, abstracts and presentations

P31.1. Supporting legal capacity of people with dementia


University of Eastern Finland, Valkeakoski, Finland

Objectives: The primary aim of the study was to scrutinize the autonomy and legal capacity of people with dementia. The aim was also to assess the utilisation of later life legal planning, and how the legal capacity of people with dementia is supported.

Methods: The primary data consists of individual interviews of 16 people with mild dementia. Every person was interviewed twice, six months apart. The secondary data was gathered in a project of Society for Memory Disorders Expertise in Finland where 98 professionals were interviewed in 25 group interviews. The participants were from different social and health care units, legal aid offices, banks, local register offices and the third sector. The material as whole was analyzed using abductive content analysis.

Results: People with dementia didn’t consider later life planning relevant at the moment and different options were unfamiliar. They had rarely made advanced directives, powers of attorney or continuing powers of attorney. They wished to receive basic legal counselling from the familiar social or health care professional close to them and also emphasized the importance of being encouraged to plan for their future – being given information is not sufficient in itself.

However, the professionals felt that it was not their responsibility to give counselling on matters of legal planning, even though Finnish legislation stipulates that social and health care professionals do have the obligation to provide such guidance and advice. They also lack knowledge and felt bringing up the issue of legal planning difficult or uncomfortable.

Conclusion: People with dementia are not well-informed of the available measures supporting their autonomy when they still have enough legal capacity to plan for their future. Legal means are reported complicated and the terminology complex. Social and health care professionals’ role in supporting legal planning is crucial: giving basic guidance and encouragement.

P31.2. Early dementia diagnosis and planning later life: Preliminary results of an empirical-ethical study


Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Germany

Background: Predictive medicine promotes early diagnosis and prediction of dementia. New research for early detection and prediction focuses on the physiological and neurological biomarkers. Though promising, the possibility of predicting the probability of late-onset dementia can be a double-edged sword: Biomarker tests can identify at-risk persons, but there is yet no known cure for dementia. Hence, the desirability and value of such risk information raise concerns.

Objectives: In this presentation, we will examine the perspectives of affected and lay people regarding early and predictive diagnosis of dementia. Our focus will be on their moral and practical assessments of risk information and life planning as well as the effects of such tests on family and other social relationships. 

Methods: In 2017, we conducted nine focus groups in Germany with affected persons (especially with caregivers and relatives of the early-diagnosed dementia patients) (N = 27) and laypeople (N = 43). We analyzed the main topics by qualitative content analysis. Then, by comparative analysis, we discussed the similarities and controversies within the groups.

Results: Our analysis showed that there is a need for public awareness regarding dementia. Overall, laypeople considered an early diagnosis of dementia rather as a burden, whereas affected persons described it as a relief counteracting the feeling of insecurity. However, affected persons mentioned also important critical issues for improvement and ethical consideration. This concerns medical communication and psychological counseling, support in care as well as new approaches to avoid conflicts between caregivers and those affected. Planning later life appeared as a critical, but highly valued issue.

Conclusion: The comparison sheds light on differing understandings of dementia and its prediction or early diagnosis. Current clinical and public communication strategies only partly address patients’ perspectives and public needs.

P31.3. The ‘Who to tell, how and when’ intervention

BHATT Jem1, SCIOR Katrina1, RUFFELL Tamatha1, HIGGS Paul2, CHARLESWORTH Georgina1

1Research Department of Clinical, Educational and Health Psychology, University College London, London, United Kingdom, 2Division of Psychiatry, University College London, London, United Kingdom

Background: Receiving a diagnosis of dementia is life changing. Between receiving a diagnosis and getting the right support, an important step has been overlooked: diagnostic disclosure by the person with dementia to their social networks. The aim of this presentation is to describe the development, and content, of a manualised decision-making intervention. The ‘Who to Tell How and When’ intervention seeks to support people living with dementia who are fearful of disclosing their diagnosis to others.

Method: The “Who to Tell, How and When” intervention has been developed through an iterative process involving: the adaptation of an existing mental health disclosure intervention; a systematic review of decision making in dementia; a large-scale public consultation, Patient and Public Involvement (PPI) with people with dementia and a small feasibility study with qualitative evaluation.

Results: The results will describe the outcomes from a multi-faceted approach used to develop the ‘Who to Tell, How and When’ intervention. The presentation will outline the influence of the literature review and consultation on the revised content of the disclosure decision-making intervention comprising of three sessions (1. Considering the pros and cons of disclosing, 2. Various ways in which to disclose 3. Telling ones story in a personally meaningful way), and participant responses to the intervention

Conclusion: This is the first intervention specific to disclosure decision-making for people living with dementia and their main supporter. Next steps are to explore the feasibility of quantitative evaluation and evaluate the impact of the intervention on disclosure-related distress.

P31.4. Specialist dementia units’ improvement programme: guidance on legal and ethical issues for participating teams


1Healthcare Improvement Scotland, Glasgow, United Kingdom, 2HIS, Glasgow, United Kingdom

The Focus on Dementia Team is part of the Improvement Hub (iHub) within Healthcare Improvement Scotland (HIS). It carries out pieces of improvement work commissioned by the Scottish Government around the commitments included in the 3rd Scotland National Dementia Strategy.

One of such pieces of work is around improvements in specialist dementia units across the country: "Specialist Dementia Units Impriovement Programme". For this, 4 specialist units for people with dementia were selected as pilot sites: 3 wards in National Health Service (NHS) premises and 1 in a specialist care home unit. The improvement methodology chosen for this piece of work is called Experience Based Co-Design (EBCD). EBCD is an approach that enables, staff, people with dementia and their families to co-design services and/or care pathways, together in partnertship. EBCD involves gathering experiences and opinions from such stakeholders through in-depth interviewing, observations and group discussions.

The aim of this presentation is to share our experience in putting together guidance on the ethical and legal issues that need to be considered and adhere to when carring out interviews and observations to gather data used for the subsequent improvement work with people that lack capacity to consent to take part in the process. This is the first time that such guidance has been produced in the Quality Improvement (QI) arena in Scotland taking into account not only previous national guidance on such issues and the international Human Rights legislation but also the specific Scottish context (the Scottish incapacty legislation and the Scottish Goverment's health and socail care standards).

This guidance was designed for those health and social care professionals in Scotland that engage in QI projects with adults who lack capacity to consent. It offers both principles to apply to and practical advice on requirements during the QI process.

P31.5. Foreign guardianship decisions: Pitfalls of recognition


University of Eastern Finland, Joensuu, Finland

Safeguarding the interest of a vulnerable adult requires without a doubt mobility of cross-border guardianship decisions. It is in the interest of adult that his or her representative appointed in one jurisdiction can act on behalf of the adult in another jurisdiction where this need emerges. This is both cost-effective and time-saving compared to the need to re-give the decision in another jurisdiction. Thus, the 2000 Hague Convention on International Protection of Adults provides, and rightly so, that in principle a decision given in one contracting state is directly applicable in another contracting state. Nevertheless, the direct recognition of foreign guardianship decisions is somewhat problematic due to significant differences in material guardianship laws which can be seen when comparing, for instance, the Finnish and Spanish guardianship norms. They clearly show that at worst the direct recognition might lead to a result in which the adult´s competency is not limited due to his or her need of protection, but because the guardianship decision was made abroad in a state which guardianship system is based on a different starting point. Corresponding problems stemming from the material law dimension emerge especially in relation to representation in personal and health care matters. Therefore, despite the obvious benefits of direct recognition, it can be claimed that some information regarding the starting points of the judicial system in which the original protective measure was given should perhaps be required in the receiving system. In certain circumstances, it should also be possible to adapt the foreign decision in order to fulfil the requirements of necessity and proportionality and to avoid unequal treatment of vulnerable adults.

P31.6. Agency in dementia care: Systematic review and meta-ethnography

BOSCO Alessandro1, SCHNEIDER Justine1, COLESTON-SHIELDS Donna Maria1, JAWAHAR Kaanthan1, HIGGS Paul2, ORRELL Martin1

1University of Nottingham, Nottingham, United Kingdom, 2University College London, London, United Kingdom

Background: Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia.

Objectives: This review explores the experience of agency in people living with dementia.

Methods: A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioural mechanisms underlying the process of decision making and looked at how the support of carers comes into play in making deliberate choices. 

Results: The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.

Discussion: Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making-process, and therefore which mechanisms need to be promoted or discouraged through training.



Last Updated: Friday 24 August 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche