TY - JOUR
T1 - Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019
AU - Klapwijk, Maartje S.
AU - Bolt, Sascha R.
AU - Boogaard, Jannie A.
AU - ten Koppel, Maud
AU - Gijsberts, Marie-José H. E.
AU - van Leussen, Carolien
AU - The, B. Anne-Mei
AU - Meijers, Judith M. M.
AU - Schols, Jos M. GA
AU - Pasman, H. Roeline W.
AU - Onwuteaka-Philipsen, Bregje D.
AU - Deliens, Luc
AU - van den Block, Lieve
AU - Mertens, Bart
AU - de Vet, Henrica C. W.
AU - Caljouw, Monique A. A.
AU - Achterberg, Wilco P.
AU - van der Steen, Jenny
N1 - Publisher Copyright: © The Author(s) 2021. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/12
Y1 - 2021/12
N2 - Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.
AB - Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.
KW - Dementia
KW - end-of-life care
KW - geriatrics
KW - nursing homes
KW - palliative care
KW - quality of health care
UR - http://www.scopus.com/inward/record.url?scp=85113589848&partnerID=8YFLogxK
U2 - https://doi.org/10.1177/02692163211030831
DO - https://doi.org/10.1177/02692163211030831
M3 - Article
C2 - 34455856
SN - 0269-2163
VL - 35
SP - 1951
EP - 1960
JO - Palliative medicine
JF - Palliative medicine
IS - 10
ER -