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P11. Proxy decision making and advanced care planning

Detailed programme and abstracts

P11.1. Adults with Incapacity (Scotland) Act 2000: improving knowledge and compliance in acute hospitals in Tayside.


The Adults with Incapacity (Scotland) Act 2000 has been in used for over 16 years but working knowledge of this important piece of legislation continues to be patchy among health professionals.

Tayside, the 5th largest Health Board in Scotland, covers a population of over 400,000 people and has two General Teaching Hospitals in the cities of Dundee and Perth. Following recent inspections in the care of older people in acute wards, investigations and complaints, it became clear to the organisation that the knowledge and application of the requirements under the legislation was insufficient.

Taking into account the high numbers of older people in acute settings at any given time and the fact that there is a high proportion of them presenting with pathologies that can result in mental incapacity to consent to treatment (delirium, dementia and depression), improvement work is led by the NHS Tayside's Associate Medical Director for Older People and the Dementia Consultant Nurse.

The areas for improvement identified were: awareness raising and training of clinical staff, nursing and medical documentation, communication with decision-making proxies and assessment of capacity and completion of incapacity certificates (Section 47 certificates).

This presentation will explore the action plan resulting from the above areas including: creation of an on-line learning module on Capacity and Consent, inclusion of assessment of capacity and completion of Section 47 certificates and treatment plans in junior doctors' induction, improvement in the nursing documentation to prompt and complete tasks related to this piece of legislation in acute settings and design of an audit tool to monitor improvement.

P11.2. Advance Directives in Portugal: the impact of the law in the community

ZINCKE DOS REIS Maria Do Rosário

In Portugal, the Act of the Parliament nº 25/2012 of 16.07 creates and regulates the Advance Directives either in the form of a living will either under the form of a healthcare proxy.

It also creates the Living Will National Registration (Registo Nacional do Testamento Vital – RENTEV) that was implemented by the Health Ministry Ordinance nº 96/2014 of 05-05.

The Health Ministry Ordinance nº 104/2014 of 15-05, adopts the living will registration form.

Since 2012 Advance Directives are legally binding in our country. This means that people may decide, in advance, what kind of healthcare interventions want or don´t want to be submitted, in a future situation when and if the person are not capable of expressing his/her will.

Since 2014 people can make their Advance Directives registration, completely free of charge, at the Living Will National Registration. People may follow the official form (template) or write a different Advance Directive.

All the information about how to do and how to register an Advance Directive is available at the official National Health Service (

Although the above mentioned existing legal framework and the availability of adequate information on the steps that have to be done to subscribe and register an Advance Directive, the true is that only a small number of people did it till now.

The aims of this presentation are: to share some figures (how many people have, in Portugal, an Advance Directive, are they more women or men, in what region of the country are they living, for instance); to find some explanations for the apparent lack of interest from the community; to find some measures to increase awareness.

Finally, a brief reference to what have been done by Alzheimer Portugal to make people aware of the importance of making an Advance Directive and the right of being informed about this possibility while people still have the capacity to make informed decisions.

P11.3. Frail elderly people – earthquake emergency in Central Italy hotel project


The earthquakes have affected a lot of Municipalities of Macerata province (Marche Region) on 24 August 2016, 26 and 30 October 2016. Several small towns and villages have been destroyed as during World War II. At least 11 Municipalities of Macerata province have recorded significant damages. These areas were populated by 15.000 people, which have been forced to leave their homes. Of these 15.000 people, 5.000 (30% of the population) are over 65 years old.  We assume that about 400 persons out of 5.000 are suffering from dementia. In these areas, there are 5 elderly care facilities: 4 out of 5 are declared unsuitable for habitation. To deal with the emergency, Alzheimer Uniti Italia Onlus promptly set up a 24 hours dedicated emergency phone code for elderly people living in the four regions affected by the earthquake. Main constraint to assist elderly people was the lack of information where those people had been evacuated. During the emergency plan, people were moved to the sea area distributed in hotels accommodation along the Adriatic coast.  With a team of 5 psychologists of Alzheimer Uniti Italia Onlus we have tracked and assisted 373 people over 65 years old located in 40 hotels. Key themes that emerged were anxiety, griefness and frightness. Once we defined the scale of the problem and assessed the impact on old people involved, Alzheimer Uniti Italia Onlus is planning to put in place a project named Hotel Project for a pilot number of elderly people affected by Alzheimer with mild to moderate dementia. Our proposal will ensure a better management and coordination of care for older people, giving appropriate support and specialist assistance to elderly through our staff. This project will be studied as a model to be replicated in all emergencies for frail elderly people.

P11.4. Supportive decision-making in the case of citizens living with dementia in Sweden: rules and practice


An important part of claiming full citizenship is to be regarded and acknowledged as an independent individual with rights and also as an actor in the society. This does not stand in contrast to being in need of support from the welfare state. Rather it is within the idea of a welfare state. Since living with dementia implies increasing difficulties in taking charge of rights and to realise full citizenship, due to cognitive as well as communicative impairments, many people with dementia are vulnerable and thus in need of support by guardianship and/or by supported decision-making. In Sweden, all adult´s right to self-determination is strongly emphasised in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The aim of this project is to disentangle the borderland and practice of guardianship, supported decision-making and self-determination concerning people with dementia in Sweden, i.e. the tension between the welfare state’s responsibility to protect its citizens versus the individual citizen’s right to self-determination. The study identifies different legal intentions that are in play in the case of people in need of support by formal representatives. It also sheds light on the challenges and implications for people living with dementia inherent with claiming full citizenship and being regarded as a full citizen even if one might be a need of support for exercising one’s citizenship.

P11.5. Evaluation of an advance care planning intervention with family carers in dementia nursing homes: a paired cluster randomized controlled trial


Background: In dementia care a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity, Advance Care Planning (ACP) can support such carers in the decision-making of care goals. 

Aim: To evaluate the effectiveness of ACP intervention with family carers of people living with Dementia.

Methods: Paired cluster randomized controlled trial of 24 dementia nursing homes located in N. Ireland, UK. Participants were family carers of nursing home residents classified as living with dementia and judged as not having decisional capacity. The intervention included a trained nurse facilitator; family education; family meetings; documentation of ACP decisions; and orientation of GPs and nursing home staff about the intervention. The primary outcome was family carer uncertainty in decision-making about the care of the resident (DCS scale). Other outcomes included family carer satisfaction with nursing home care (FPCS scale); family carer psychological distress (GHQ); admission to hospital; completed “do not resuscitate” (DNR) orders, and place of death.

Results: There was evidence of a significant difference between the intervention and usual care group on the total DCS score at 7 weeks (-10.5, 95% confidence interval -16.4 to -4.7; p = 0.001).  There was also evidence of a significant difference in the total FPCS total score between the intervention and usual care groups (8.6, 95% confidence interval 2.3 to 14.8; p = 0.01). There was little evidence of a difference between the intervention and usual care group on the total GHQ score. Although there were increases in DNRs, reductions in hospital admissions and hospital deaths, none of these differences had statistical significance.

Conclusions:  The implications for clinicians and policy makers include recognizing the importance of family carer education and improving communication between family carers and formal care providers.

P11.6. Training general practitioners in initiating advance care planning with people with dementia, results of a randomized controlled trail


Introduction: Persons with dementia (PWDs) and their general practitioners (GPs) seldom discuss wishes and needs regarding future care together. As a consequence, when dementia progresses, care delivered may not correspond with PWDs’ preferences. With Advance Care Planning (ACP) preferences for future care can timely be discussed and documented. As GPs are often involved from diagnosis on and have longstanding relationships with PWDs, they seem the appropriate professionals to initiate ACP. We therefore developed a training for GPs in initiating ACP with PWDs and studied its effects on medical and psychosocial preferences discussed and documented in PWDs’ medical files.

Methods: A single blind randomized controlled trail was conducted. Before randomization, GPs where asked to include 5 PWDs from their practices. GPs in the intervention group (n=19) were trained in ACP. GPs in the control group (n=19) provided care as usual. After six months’ medical records of the patients (n=138) were analyzed and compared on documented medical (reanimation, resuscitation, use of antibiotics, hospital admission, care to prolong life, palliative care) and psychosocial (daily activities, social contacts, living, safety, care needs, mobility, finance) ACP topics using an independent sample t-test with correction for GP clustering.

Results: With 72 PWDs in the intervention group, GPs discussed and documented a total of 109 medical and 169 psychosocial items during six months after the training. With 65 PWDs in the control group 7 primary and 15 psychosocial items were discussed and documented. Both number of medical (F=14,984; t= -3,221; p=0,000) and psychosocial ACP items (F= 57,728; t=-4.574; p=0,004) differed significantly in favor of the intervention group.

Conclusion: Our ACP training leads to a significant increase in medical and psychosocial topics discussed and documented with PWDs by GPs. We advocate its broad application, since it may bring future care into agreement with PWDs’ needs and preferences.



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