Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Sanna Read; Ben Hicks; Emily  Budden; Jacob   Douglass; Amanda Grahamslaw; Elena  Herrero; Gregory  Joseph; Christine  Kirkup; Alice  Russell; Harsharon  Sondh; Sharon  Sondh; Bryony Storey; Georgia  Towson; Kate Baxter; Yvonne Frances Birks; Carol Brayne; Carmen Colclough; Margaret Dangoor; Josie Dixon; Paul Donaghy; Kate Gridley; Peter, R. Harris; Bo Hu; Derek King; Martin Knapp; Eleanor Miles; Christopher Mueller; Rotem Perach; Louise Robinson; Jennifer Rusted; Alan J Thomas; Raphael Wittenberg; Sube Banerjee

doi:10.1093/ageing/afad233

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Sanna Read, Ben Hicks^*, Emily Budden , Jacob Douglass , Amanda Grahamslaw, Elena Herrero , Gregory Joseph , Christine Kirkup, Alice Russell , Harsharon Sondh , Sharon Sondh , Bryony Storey, Georgia Towson , Kate Baxter, Yvonne Frances Birks, Carol Brayne, Carmen Colclough, Margaret Dangoor, Josie Dixon, Paul DonaghyKate Gridley, Peter, R. Harris, Bo Hu, Derek King, Martin Knapp, Eleanor Miles, Christopher Mueller, Rotem Perach, Louise Robinson, Jennifer Rusted, Alan J Thomas, Raphael Wittenberg, Sube Banerjee

^*Corresponding author for this work

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

Abstract

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19.
Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL).
Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic.
Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Original language	English
Article number	afad233
Number of pages	12
Journal	Age and Ageing
Volume	53
Issue number	1
DOIs	https://doi.org/10.1093/ageing/afad233
Publication status	Published - 25 Jan 2024

Bibliographical note

This is an author-produced version of the published paper. Uploaded in accordance with the University’s Research Publications and Open Access policy.

Keywords

DEMENTIA
COVID
QUALITY OF LIFE

Access to Document

10.1093/ageing/afad233Licence: CC BY

FINAL_ANON_Age_and_Ageing_POST_REVIEW_CLEAN_160923[1]
This is an author-produced version of the published paper. Uploaded in accordance with the University’s Research Publications and Open Access policy.
Accepted author manuscript, 87.9 KBLicence: CC BY
afad233
© The Author(s) 2023
Final published version, 544 KBLicence: CC BY

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

Cite this

Read, S., Hicks, B., Budden , E., Douglass , J., Grahamslaw, A., Herrero , E., Joseph , G., Kirkup, C., Russell , A., Sondh , H., Sondh , S., Storey, B., Towson , G., Baxter, K., Birks, Y. F., Brayne, C., Colclough, C., Dangoor, M., Dixon, J., ... Banerjee, S. (2024). Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers. Age and Ageing, 53(1), Article afad233. https://doi.org/10.1093/ageing/afad233

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title = "Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.",

abstract = "Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL).Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. {\textquoteleft}Confidence in future{\textquoteright} and {\textquoteleft}Feeling supported{\textquoteright} were the only carer QoL subscales to show some recovery post-pandemic.Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.",

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author = "Sanna Read and Ben Hicks and Emily Budden and Jacob Douglass and Amanda Grahamslaw and Elena Herrero and Gregory Joseph and Christine Kirkup and Alice Russell and Harsharon Sondh and Sharon Sondh and Bryony Storey and Georgia Towson and Kate Baxter and Birks, {Yvonne Frances} and Carol Brayne and Carmen Colclough and Margaret Dangoor and Josie Dixon and Paul Donaghy and Kate Gridley and Harris, {Peter, R.} and Bo Hu and Derek King and Martin Knapp and Eleanor Miles and Christopher Mueller and Rotem Perach and Louise Robinson and Jennifer Rusted and Thomas, {Alan J} and Raphael Wittenberg and Sube Banerjee",

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year = "2024",

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doi = "10.1093/ageing/afad233",

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Read, S, Hicks, B, Budden , E, Douglass , J, Grahamslaw, A, Herrero , E, Joseph , G, Kirkup, C, Russell , A, Sondh , H, Sondh , S, Storey, B, Towson , G, Baxter, K , Birks, YF, Brayne, C, Colclough, C, Dangoor, M, Dixon, J, Donaghy, P, Gridley, K, Harris, PR, Hu, B, King, D, Knapp, M, Miles, E, Mueller, C, Perach, R, Robinson, L, Rusted, J, Thomas, AJ, Wittenberg, R & Banerjee, S 2024, 'Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.', Age and Ageing, vol. 53, no. 1, afad233. https://doi.org/10.1093/ageing/afad233

TY - JOUR

T1 - Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

AU - Read, Sanna

AU - Hicks, Ben

AU - Budden , Emily

AU - Douglass , Jacob

AU - Grahamslaw, Amanda

AU - Herrero , Elena

AU - Joseph , Gregory

AU - Kirkup, Christine

AU - Russell , Alice

AU - Sondh , Harsharon

AU - Sondh , Sharon

AU - Storey, Bryony

AU - Towson , Georgia

AU - Baxter, Kate

AU - Birks, Yvonne Frances

AU - Brayne, Carol

AU - Colclough, Carmen

AU - Dangoor, Margaret

AU - Dixon, Josie

AU - Donaghy, Paul

AU - Gridley, Kate

AU - Harris, Peter, R.

AU - Hu, Bo

AU - King, Derek

AU - Knapp, Martin

AU - Miles, Eleanor

AU - Mueller, Christopher

AU - Perach, Rotem

AU - Robinson, Louise

AU - Rusted, Jennifer

AU - Thomas, Alan J

AU - Wittenberg, Raphael

AU - Banerjee, Sube

N1 - This is an author-produced version of the published paper. Uploaded in accordance with the University’s Research Publications and Open Access policy.

PY - 2024/1/25

Y1 - 2024/1/25

N2 - Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL).Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic.Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

AB - Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL).Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic.Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

KW - DEMENTIA

KW - COVID

KW - QUALITY OF LIFE

U2 - 10.1093/ageing/afad233

DO - 10.1093/ageing/afad233

M3 - Article

SN - 0002-0729

VL - 53

JO - Age and Ageing

JF - Age and Ageing

IS - 1

M1 - afad233

ER -

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Abstract

Bibliographical note

Keywords

Access to Document

Projects

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

Cite this