Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis

TY - JOUR

T1 - Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life

T2 - A Secondary Data Analysis

AU - Leniz, Javiera

AU - Evans, Catherine J

AU - Yi, Deokhee

AU - Bone, Anna E

AU - Higginson, Irene J

AU - Sleeman, Katherine E

N1 - Funding Information: Funding sources: J.L. is funded by a Royal Marsden Partners Pan London Research Fellowship Award and the Programa Formacion de Capital Humano Avanzado, Doctorado Becas Chile, 2018 (folio 72190265). D.Y. is supported by Cicely Saunders International. K.E.S is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. I.J.H. is an NIHR Senior Investigator Emeritus. I.J.H. is supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust. I.J.H. leads the Palliative and End of Life Care theme of the NIHR ARC South London, and co-leads the national theme in this. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care, or the funding charities. Funding Information: Funding sources: J.L. is funded by a Royal Marsden Partners Pan London Research Fellowship Award and the Programa Formacion de Capital Humano Avanzado , Doctorado Becas Chile , 2018 (folio 72190265 ). D.Y. is supported by Cicely Saunders International . K.E.S is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. I.J.H. is an NIHR Senior Investigator Emeritus. I.J.H. is supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust. I.J.H. leads the Palliative and End of Life Care theme of the NIHR ARC South London, and co-leads the national theme in this. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care, or the funding charities. Publisher Copyright: © 2022 The Authors

PY - 2022/7/9

Y1 - 2022/7/9

N2 - Objectives: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. Design: Cross-sectional study using pooled data from 3 mortality follow-back surveys. Setting and Participants: People who died with dementia. Methods: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs. Results: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs. Conclusions and Implications: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.

AB - Objectives: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. Design: Cross-sectional study using pooled data from 3 mortality follow-back surveys. Setting and Participants: People who died with dementia. Methods: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs. Results: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs. Conclusions and Implications: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.

UR - http://www.scopus.com/inward/record.url?scp=85136161973&partnerID=8YFLogxK

U2 - 10.1016/j.jamda.2022.06.007

DO - 10.1016/j.jamda.2022.06.007

M3 - Article

C2 - 35820492

SN - 1525-8610

VL - 23

SP - 2015-2022.e5

JO - Journal Of The American Medical Directors Association

JF - Journal Of The American Medical Directors Association

IS - 12

ER -