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P5. Advance care planning and end-of-life care

Detailed programme and abstracts

P5.1. Introduction social health and advance care planning


Background: Advance care planning is about thinking ahead and making the most out of life after being diagnosed with a non-curable disease.

Methods: In this symposium we will approach advance care from the point of the nursing home and the general practice settings. The results of ongoing studies will be presented.

Results: Recent results indicate that people with chronic severe illnesses such as cancer and dementia appreciate to be asked about their preferences for future activities. Asking for these preferences often opens the door for communication on end-of- life care. The communication process on advance care planning is influenced by the potential of persons with dementia to participate in shared decision making and on the communication skills of professionals working in the community and long term care facilities to engage in the decision making process with people with dementia.

Conclusions: Advanced care planning together with patient, family and professional is a mean to enhance social health by giving the opportunity to express and use capacities, preserve autonomy and by participation in the decision making process on future life and care.

P5.2. Integration of advance care planning in nursing homes needs a whole system approach


Background: Advance care planning (ACP) is highly relevant for nursing home residents but it remains unclear how ACP can best be integrated in such complex settings. We aimed to develop a Theory of Change to identify the causal pathway of integrating ACP in nursing homes.

Methods: systematic review (PubMed, PsycINFO, EMBASE, CINAHL); contextual analysis describing current regulations, guidelines and practices in the nursing home context; two Theory of Change workshops with professionals and researchers from multiple disciplines in Belgium.

Results: In 38 publications, we identified 17 preconditions at different levels: resident, family, healthcare professional, facility. The final Theory of Change map identified “improved correspondence between resident wishes and care/treatments they receive” as long-term outcome as well as “residents and family feel involved in planning their future care and are confident care will correspond to their wishes”. Necessary preconditions to achieve these outcomes were:

  • willingness from nursing home management to implement ACP
  • all professionals being aware of the facilities’ ACP policy
  • staff having sufficient knowledge and skills to conduct ACP conversations adapting to resident’s cognitive capacities, or to be able to recognize triggers for starting conversations
  • inform and involve GPs
  • residents and family being willing and able to participate in ACP
  • have an administrative system in place to record wishes; easily accessible to all professionals
  • have regular monitoring and reflective sessions on ACP in the facility

Conclusions: There are multiple preconditions related to successfully integrating ACP in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and sustainable. They should simultaneously target the important role of the healthcare professional and the facility itself.

P5.3. Future care planning with persons with dementia and their family


Background: Palliative care aims to increase quality of life of persons with a life-limiting disease. Already in 2002, the WHO defined that palliative care should start early, should not be restricted to persons with cancer, be multidimensional, and should consider actual as well as future needs and wishes. However, up to now such future care planning is hardly provided to persons with dementia (PWDs). Why is it important, what are the barriers and what are the solutions?

Methods: Interviews with professionals, PWDs and family caregivers to get insights in barriers; Training professionals in and developing tools for future care planning, based on these barriers; several prospective trials to evaluate the effects of training and tools. 

Results: Tools and training for general practitioners and nurses in: 1. when to start future care planning; 2 how to communicate about the (uncertain) future; 4. Structuring the future care plan increases future care planning. 

Conclusions: Future care planning enables as well the PWD as the professional to anticipate on future scenario’s, and to make choices that are in line with the PWD’s needs and preferences.

P5.4. The impact of shared decision-making on dementia care planning in long-term care

CHATTAT Rabih, ENGEL Yvonne, MARIANI Elena, Vernooij-Dassen Myrra

Background: International guidelines recommending the involvement of family members and residents in the care planning process in long-term care (LTC) settings are available. Shared Decision Making (SDM), that is considered a fundamental approach that fosters persons with dementia in expressing their preferences and needs and in maintaining and preserving their own autonomy, can be used to allow their involvement. However, the use of SDM to guide the provision of everyday care in LTC is still limited. In order to increase person-centered care planning, we developed, implemented and studied the effects of an SDM framework in care planning for long-term care residents with dementia in Italy and the Netherlands.

Method: This feasibility study applied a pre-test/post-test controlled group design to measure the impact of the SDM framework on residents’ care plans, staff’ job satisfaction and family caregivers’ sense of competence and quality of life. Non-parametric analysis were performed.

Results: Care plans were more personalized in the experimental group, containing more personal preferences and individualized interventions than in the control group. With regards to the participants’ outcomes, the family caregivers’ sense of competence improved over time both in the experimental and control group, whereas the quality of life significantly improved only in the experimental group. The job satisfaction questionnaire perceived by staff significantly improved in the experimental group.

Conclusion: SDM is a feasible approach that can be implemented in nursing homes with residents with moderate dementia and with their family caregivers. Including the residents and their family members in the care planning process resulted in more personalized care plans and improved the quality of life, sense of competence and job satisfaction of the professional and family caregivers involved.

P5.5. Advanced care planning and case management for people with dementia


Advance care planning' (ACP) is the term used to describe the conversation between people, their families and carers, and those looking after them, about their future wishes and priorities for care. Only if we engage in advance care planning can we hope to maintain our autonomy, should we become incapable of making decisions. ACP may be resisted by professionals, the individual concerned and their carers. Trusting relationships are seen as essential for ACP to occur. Case management also requires trusting relationships, and in theory could be one vehicle for discussion of advance care plans. Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services. However, the available evidence in favour of its merits is inconclusive, unclear and sketchy. This presentation will review the evidence of the benefit of case management for people with dementia, and explore the complexity of the concept and the experiences of its implementation. It will answer the question: who can be a case manager? It will introduce the ideas of interessement and co-constitution and point towards a model of case management as a fluid technology that is both friendly and flexible.

This study is supported by the research project 15-32942A-P09 AZV of the Ministry of Health Case management as a complex intervention in patients 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