TY - JOUR
T1 - Exploring costs, cost components, and associated factors among people with dementia approaching the end of life
T2 - A systematic review
AU - Leniz, Javiera
AU - Yi, Deokhee
AU - Yorganci, Emel
AU - Williamson, Lesley E.
AU - Suji, Trisha
AU - Cripps, Rachel
AU - Higginson, Irene J.
AU - Sleeman, Katherine E.
N1 - Funding Information:
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). DY is supported by Cicely Saunders International. K.E.S. is funded by a National Institute of Health Research (NIHR) Clinician Scientist Fellowship (CS‐2015‐15‐005), 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 funders did not have any involvement in the study design, collection, analysis, and interpretation of the data. 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:
© 2021 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.
PY - 2021
Y1 - 2021
N2 - Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.
AB - Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.
KW - Alzheimer's disease
KW - cost of care
KW - cost of illness
KW - dementia
KW - end-of-life
KW - health care cost
KW - systematic review
UR - http://www.scopus.com/inward/record.url?scp=85124423395&partnerID=8YFLogxK
U2 - 10.1002/trc2.12198
DO - 10.1002/trc2.12198
M3 - Review article
AN - SCOPUS:85124423395
SN - 2352-8737
VL - 7
JO - Alzheimer's and Dementia: Translational Research and Clinical Interventions
JF - Alzheimer's and Dementia: Translational Research and Clinical Interventions
IS - 1
M1 - e12198
ER -