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. 2024 Apr;38(4):457-470.
doi: 10.1177/02692163241234579.

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study

Mayumi Nishimura  1 , Karen Harrison Dening  2 , Elizabeth L Sampson  3   4 , Edison Iglesias de Oliveira Vidal  5 , Miharu Nakanishi  6 , Nathan Davies  7 , Wilson Abreu  8 , Sharon Kaasalainen  9 , Yvonne Eisenmann  10 , Laura Dempsey  11 , Kirsten J Moore  12   13 , Sascha R Bolt  14 , Judith Mm Meijers  15   16   17 , Natashe Lemos Dekker  18 , Mitsunori Miyashita  19 , Takeo Nakayama  1 , Jenny T van der Steen  20   21   22
Affiliations

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study

Mayumi Nishimura et al. Palliat Med. 2024 Apr.

Abstract

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life.

Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice.

Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified.

Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study.

Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves.

Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Keywords: Delphi technique; Dementia; advance care planning; biopsychosocial; cognitive disorders; interprofessional education; model; palliative care.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: This study was performed with the same expert panel as with EAPC’s ACP Delphi study, but this study was not designed by the EAPC ACP in dementia task force. This separate study was not conducted as part of the remit of the EAPC task force. There are no conflicts of interest.

Figures

Figure 1.
Figure 1.
Existing (a) and newly developed final (b) models of dementia care goals. (a) A previous model - dementia progression and suggested prioritising of care goals in the European Association for Palliative Care dementia white paper. The goals of maintenance of function and maximisation of comfort are compatible with palliative care which aims to improve quality of life (van der Steen et al. Copyright by the Authors. Reprinted by permission of SAGE Publications, Ltd.) (b) A model of palliative care goals towards the end of life for people living with dementia and family to support prioritising and detailing of effort to achieve individual care goals that contribute the most to quality of life until the end of life.
Figure 2.
Figure 2.
A process of development of an international multidimensional model. a. The goal was relevant but control is less feasible (criterion 3 in the text) near the end of life. b. We rephrased for consistency, with the verb last. c. ‘Life prolongation’ was excluded because there was no consensus how to include it and to keep a focus on palliative goals exclusively. d. ‘Satisfaction with life and spiritual wellbeing’ was excluded because it is an overall outcome rather than a specific care goal that can be ensured.
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