A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers

Ben Hicks; Sanna Read; Bo Hu; Raphael Wittenberg; Amanda Grahamslaw; Anomita  Karim; Evelyn  Martin; Eleanor Nuzum; Jacob Reichental; Alice  Russell; Elaine  Siddle; Bryony Storey; Eva Tipping; Yvonne Frances Birks; Kate Baxter; Carol Brayne; Nicola  Brimblecombe; Margaret Dangoor; Josie Dixon; Kate Gridley; Peter R Harris; Martin Knapp; Eleanor Miles; Rotem Perach; Louise Robinson; Jennifer Rusted; Robert Stewart; Alan Thomas

doi:10.1002/trc2.12236

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers

Ben Hicks, Sanna Read, Bo Hu, Raphael Wittenberg, Amanda Grahamslaw, Anomita Karim, Evelyn Martin, Eleanor Nuzum, Jacob Reichental, Alice Russell, Elaine Siddle, Bryony Storey, Eva Tipping, Yvonne Frances Birks, Kate Baxter, Carol Brayne, Nicola Brimblecombe, Margaret Dangoor, Josie Dixon, Kate GridleyPeter R Harris, Martin Knapp, Eleanor Miles, Rotem Perach, Louise Robinson, Jennifer Rusted, Robert Stewart, Alan Thomas

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

Abstract

INTRODUCTION: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life.

METHODS: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life.

RESULTS: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life.

DISCUSSION: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

Original language	English
Article number	e12236
Number of pages	14
Journal	Alzheimer's and Dementia: Translational Research & Clinical Interventions
Volume	8
Issue number	1
Early online date	28 Apr 2022
DOIs	https://doi.org/10.1002/trc2.12236
Publication status	Published - 2 May 2022

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10.1002/trc2.12236Licence: CC BY

A D Transl Res Clin Interv - 2022 - Hicks - A cohort study of the impact of COVID‐19 on the quality of life of people
© 2022 The Authors.
Final published version, 925 KBLicence: CC BY

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DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers
Birks, Y. F. (Principal investigator), Baxter, K. (Co-investigator), Gridley, K. (Researcher) & Maddison, J. R. (Researcher)
ECONOMIC AND SOCIAL RESEARCH COUNCIL (ESRC)
1/01/19 → 31/12/24
Project: Research project (funded) › Research

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Hicks, B., Read, S., Hu, B., Wittenberg, R., Grahamslaw, A., Karim, A., Martin, E., Nuzum, E., Reichental, J., Russell, A., Siddle, E., Storey, B., Tipping, E., Birks, Y. F., Baxter, K., Brayne, C., Brimblecombe, N., Dangoor, M., Dixon, J., ... Thomas, A. (2022). A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers. Alzheimer's and Dementia: Translational Research & Clinical Interventions, 8(1), Article e12236. https://doi.org/10.1002/trc2.12236

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title = "A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers",

abstract = "INTRODUCTION: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life.METHODS: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life.RESULTS: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life.DISCUSSION: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.",

author = "Ben Hicks and Sanna Read and Bo Hu and Raphael Wittenberg and Amanda Grahamslaw and Anomita Karim and Evelyn Martin and Eleanor Nuzum and Jacob Reichental and Alice Russell and Elaine Siddle and Bryony Storey and Eva Tipping and Birks, {Yvonne Frances} and Kate Baxter and Carol Brayne and Nicola Brimblecombe and Margaret Dangoor and Josie Dixon and Kate Gridley and Harris, {Peter R} and Martin Knapp and Eleanor Miles and Rotem Perach and Louise Robinson and Jennifer Rusted and Robert Stewart and Alan Thomas",

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doi = "10.1002/trc2.12236",

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Hicks, B, Read, S, Hu, B, Wittenberg, R, Grahamslaw, A, Karim, A, Martin, E, Nuzum, E, Reichental, J, Russell, A, Siddle, E, Storey, B, Tipping, E, Birks, YF , Baxter, K, Brayne, C, Brimblecombe, N, Dangoor, M, Dixon, J, Gridley, K, Harris, PR, Knapp, M, Miles, E, Perach, R, Robinson, L, Rusted, J, Stewart, R & Thomas, A 2022, 'A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers', Alzheimer's and Dementia: Translational Research & Clinical Interventions, vol. 8, no. 1, e12236. https://doi.org/10.1002/trc2.12236

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T1 - A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers

AU - Hicks, Ben

AU - Read, Sanna

AU - Hu, Bo

AU - Wittenberg, Raphael

AU - Grahamslaw, Amanda

AU - Karim, Anomita

AU - Martin, Evelyn

AU - Nuzum, Eleanor

AU - Reichental, Jacob

AU - Russell, Alice

AU - Siddle, Elaine

AU - Storey, Bryony

AU - Tipping, Eva

AU - Birks, Yvonne Frances

AU - Baxter, Kate

AU - Brayne, Carol

AU - Brimblecombe, Nicola

AU - Dangoor, Margaret

AU - Dixon, Josie

AU - Gridley, Kate

AU - Harris, Peter R

AU - Knapp, Martin

AU - Miles, Eleanor

AU - Perach, Rotem

AU - Robinson, Louise

AU - Rusted, Jennifer

AU - Stewart, Robert

AU - Thomas, Alan

PY - 2022/5/2

Y1 - 2022/5/2

N2 - INTRODUCTION: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life.METHODS: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life.RESULTS: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life.DISCUSSION: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

AB - INTRODUCTION: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life.METHODS: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life.RESULTS: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life.DISCUSSION: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

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DO - 10.1002/trc2.12236

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SN - 2352-8737

VL - 8

JO - Alzheimer's and Dementia: Translational Research & Clinical Interventions

JF - Alzheimer's and Dementia: Translational Research & Clinical Interventions

IS - 1

M1 - e12236

ER -

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers

Abstract

Bibliographical note

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Projects

DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers

Cite this