Sascha Bolt1, Jenny van der Steen2, Jos Schols3, Sandra Zwakhalen3, Judith Meijers4. 1. PhD candidate, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands. 2. Associate Professor, Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands, Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands. 3. Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands. 4. Assistant Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands, Zuyderland Care, Zuyderland Medical Center, Sittard-Geleen, the Netherlands.
Abstract
BACKGROUND: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. AIMS: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. METHODS: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. FINDINGS: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. CONCLUSION: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
BACKGROUND: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. AIMS: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. METHODS: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. FINDINGS: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. CONCLUSION: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
Entities:
Keywords:
Dementia; End-of-life care; Family caregiver; Home care; Nursing home
Authors: Mayumi Nishimura; Karen Harrison Dening; Elizabeth L Sampson; Edison Iglesias de Oliveira Vidal; Wilson Correia de Abreu; Sharon Kaasalainen; Yvonne Eisenmann; Laura Dempsey; Kirsten J Moore; Nathan Davies; Sascha R Bolt; Judith M M Meijers; Natashe Lemos Dekker; Mitsunori Miyashita; Miharu Nakanishi; Takeo Nakayama; Jenny T van der Steen Journal: BMC Palliat Care Date: 2022-06-08 Impact factor: 3.113
Authors: Sascha R Bolt; Judith M M Meijers; Jenny T van der Steen; Jos M G A Schols; Sandra M G Zwakhalen Journal: J Nurs Scholarsh Date: 2020-02-10 Impact factor: 3.176
Authors: Maartje S Klapwijk; Sascha R Bolt; Jannie A Boogaard; Maud Ten Koppel; Marie-José He Gijsberts; Carolien van Leussen; B Anne-Mei The; Judith Mm Meijers; Jos Mga Schols; H Roeline W Pasman; Bregje D Onwuteaka-Philipsen; Luc Deliens; Lieve Van den Block; Bart Mertens; Henrica Cw de Vet; Monique Aa Caljouw; Wilco P Achterberg; Jenny T van der Steen Journal: Palliat Med Date: 2021-08-28 Impact factor: 4.762
Authors: Sascha R Bolt; Jenny T van der Steen; Chandni Khemai; Jos M G A Schols; Sandra M G Zwakhalen; Judith M M Meijers Journal: J Clin Nurs Date: 2021-01-25 Impact factor: 4.423