Open Access Open Badges Study protocol

Patient preferences for future care - how can Advance Care Planning become embedded into dementia care: a study protocol

Louise Robinson1*, Claire Bamford1, Fiona Beyer1, Alexa Clark2, Claire Dickinson1, Charlotte Emmet3, Catherine Exley1, Julian Hughes4, Lesley Robson2 and Nikki Rousseau1

Author Affiliations

1 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, NE2 4AA, UK

2 Newcastle upon Tyne Primary Care Trust, Newcastle upon Tyne, UK

3 Northumbria University, Newcastle upon Tyne, UK

4 North Tyneside General Hospital, Northumbria Healthcare NHS Foundation Trust*, UK

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BMC Geriatrics 2010, 10:2  doi:10.1186/1471-2318-10-2

Published: 12 January 2010



People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice.


The four phase project comprises a systematic review (Phase 1) and a series of qualitative studies (Phases 2 and 3), with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4).


In the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the study will also develop practical tools, which are grounded in practice, for all relevant stakeholders to enable the facilitation of timely and sensitive ACP discussions.