Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019

M.S. Klapwijk; S.R. Bolt; J.A.N. Boogaard; M. Ten Koppel; M.J.H.E. Gijsberts; C. van Leussen; B.A.M. The; J.M.M. Meijers; J.M.G.A. Schols; H.R.W. Pasman; B.D. Onwuteaka-Philipsen; L. Deliens; L. Van den Block; B. Mertens; H.C.W. de Vet; M.A.A. Caljouw; W.P. Achterberg; J. van der Steen

doi:10.1177/02692163211030831

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019

M.S. Klapwijk^*, S.R. Bolt, J.A.N. Boogaard, M. Ten Koppel, M.J.H.E. Gijsberts, C. van Leussen, B.A.M. The, J.M.M. Meijers, J.M.G.A. Schols, H.R.W. Pasman, B.D. Onwuteaka-Philipsen, L. Deliens, L. Van den Block, B. Mertens, H.C.W. de Vet, M.A.A. Caljouw, W.P. Achterberg, J. van der Steen

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

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.

Original language	English
Article number	02692163211030831
Pages (from-to)	1951-1960
Number of pages	10
Journal	Palliative Medicine
Volume	35
Issue number	10
Early online date	28 Aug 2021
DOIs	https://doi.org/10.1177/02692163211030831
Publication status	Published - Dec 2021

Keywords

Dementia
geriatrics
palliative care
nursing homes
quality of health care
end-of-life care
LIFE CARE
PALLIATIVE CARE
OLDER-PEOPLE
END
DUTCH
SATISFACTION
INTERVENTIONS
INSTRUMENTS
PERCEPTIONS
BARRIERS

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Klapwijk, M. S., Bolt, S. R., Boogaard, J. A. N., Ten Koppel, M., Gijsberts, M. J. H. E., van Leussen, C., The, B. A. M., Meijers, J. M. M., Schols, J. M. G. A., Pasman, H. R. W., Onwuteaka-Philipsen, B. D., Deliens, L., Van den Block, L., Mertens, B., de Vet, H. C. W., Caljouw, M. A. A., Achterberg, W. P., & van der Steen, J. (2021). Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019. Palliative Medicine, 35(10), 1951-1960. Article 02692163211030831. https://doi.org/10.1177/02692163211030831

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title = "Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019",

abstract = "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.",

keywords = "Dementia, geriatrics, palliative care, nursing homes, quality of health care, end-of-life care, LIFE CARE, PALLIATIVE CARE, OLDER-PEOPLE, END, DUTCH, SATISFACTION, INTERVENTIONS, INSTRUMENTS, PERCEPTIONS, BARRIERS",

author = "M.S. Klapwijk and S.R. Bolt and J.A.N. Boogaard and {Ten Koppel}, M. and M.J.H.E. Gijsberts and {van Leussen}, C. and B.A.M. The and J.M.M. Meijers and J.M.G.A. Schols and H.R.W. Pasman and B.D. Onwuteaka-Philipsen and L. Deliens and {Van den Block}, L. and B. Mertens and {de Vet}, H.C.W. and M.A.A. Caljouw and W.P. Achterberg and {van der Steen}, J.",

year = "2021",

month = dec,

doi = "10.1177/02692163211030831",

language = "English",

volume = "35",

pages = "1951--1960",

journal = "Palliative Medicine",

issn = "0269-2163",

publisher = "SAGE Publications Ltd",

number = "10",

}

Klapwijk, MS, Bolt, SR, Boogaard, JAN, Ten Koppel, M, Gijsberts, MJHE, van Leussen, C, The, BAM, Meijers, JMM , Schols, JMGA, Pasman, HRW, Onwuteaka-Philipsen, BD, Deliens, L, Van den Block, L, Mertens, B, de Vet, HCW, Caljouw, MAA, Achterberg, WP & van der Steen, J 2021, 'Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019', Palliative Medicine, vol. 35, no. 10, 02692163211030831, pp. 1951-1960. https://doi.org/10.1177/02692163211030831

TY - JOUR

T1 - Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019

AU - Klapwijk, M.S.

AU - Bolt, S.R.

AU - Boogaard, J.A.N.

AU - Ten Koppel, M.

AU - Gijsberts, M.J.H.E.

AU - van Leussen, C.

AU - The, B.A.M.

AU - Meijers, J.M.M.

AU - Schols, J.M.G.A.

AU - Pasman, H.R.W.

AU - Onwuteaka-Philipsen, B.D.

AU - Deliens, L.

AU - Van den Block, L.

AU - Mertens, B.

AU - de Vet, H.C.W.

AU - Caljouw, M.A.A.

AU - Achterberg, W.P.

AU - van der Steen, J.

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 - geriatrics

KW - palliative care

KW - nursing homes

KW - quality of health care

KW - end-of-life care

KW - LIFE CARE

KW - PALLIATIVE CARE

KW - OLDER-PEOPLE

KW - END

KW - DUTCH

KW - SATISFACTION

KW - INTERVENTIONS

KW - INSTRUMENTS

KW - PERCEPTIONS

KW - BARRIERS

U2 - 10.1177/02692163211030831

DO - 10.1177/02692163211030831

M3 - Article

C2 - 34455856

SN - 0269-2163

VL - 35

SP - 1951

EP - 1960

JO - Palliative Medicine

JF - Palliative Medicine

IS - 10

M1 - 02692163211030831

ER -