Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development
Abstract Background When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the...
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| Format: | Article |
| Language: | English |
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BMC
2017-04-01
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| Series: | BMC Palliative Care |
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| Online Access: | http://link.springer.com/article/10.1186/s12904-017-0201-4 |
| _version_ | 1819267773497344000 |
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| author | Jenny T. van der Steen Natashe Lemos Dekker Marie-José H. E. Gijsberts Laura H. Vermeulen Margje M. Mahler B. Anne-Mei The |
| author_facet | Jenny T. van der Steen Natashe Lemos Dekker Marie-José H. E. Gijsberts Laura H. Vermeulen Margje M. Mahler B. Anne-Mei The |
| author_sort | Jenny T. van der Steen |
| collection | DOAJ |
| description | Abstract Background When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. Methods In 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development. Results (1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient. Conclusion A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise. |
| first_indexed | 2024-12-23T21:22:30Z |
| format | Article |
| id | doaj.art-46183d9de94e45c183eb0a65c82b1a6c |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-23T21:22:30Z |
| publishDate | 2017-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-46183d9de94e45c183eb0a65c82b1a6c2022-12-21T17:30:43ZengBMCBMC Palliative Care1472-684X2017-04-0116111410.1186/s12904-017-0201-4Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service developmentJenny T. van der Steen0Natashe Lemos Dekker1Marie-José H. E. Gijsberts2Laura H. Vermeulen3Margje M. Mahler4B. Anne-Mei The5Department of Public Health and Primary Care, Leiden University Medical CenterAmsterdam Institute for Social Science Research (AISSR), University of AmsterdamEMGO Institute for Health and Care Research, Department of Public and Occupational Health, VU University Medical CenterAmsterdam Institute for Social Science Research (AISSR), University of AmsterdamStichting Kalorama, Department of PsychologyAmsterdam Institute for Social Science Research (AISSR), University of AmsterdamAbstract Background When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. Methods In 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development. Results (1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient. Conclusion A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.http://link.springer.com/article/10.1186/s12904-017-0201-4DementiaEnd of lifeHealth servicesHospice carePalliative careProgram development |
| spellingShingle | Jenny T. van der Steen Natashe Lemos Dekker Marie-José H. E. Gijsberts Laura H. Vermeulen Margje M. Mahler B. Anne-Mei The Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development BMC Palliative Care Dementia End of life Health services Hospice care Palliative care Program development |
| title | Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development |
| title_full | Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development |
| title_fullStr | Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development |
| title_full_unstemmed | Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development |
| title_short | Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development |
| title_sort | palliative care for people with dementia in the terminal phase a mixed methods qualitative study to inform service development |
| topic | Dementia End of life Health services Hospice care Palliative care Program development |
| url | http://link.springer.com/article/10.1186/s12904-017-0201-4 |
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