Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

Ron L.H. Handels, Anders Sköldunger, Anja Bieber, Rhiannon Tudor Edwards, Manuel Gonçalves-Pereira, Louise Hopper, Kate Irving, Hannah Jelley, Liselot Kerpershoek, Maria J. Marques, Gabriele Meyer, Mona Michelet, Elisa Portolani, Janne Røsvik, Geir Selbaek, Astrid Stephan, Marjolein De Vugt, Claire Wolfs, Bob Woods, Orazio Zanetti & 2 others Frans Verhey, Anders Wimo

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self-and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

Original languageEnglish
Pages (from-to)1027-1040
Number of pages14
JournalJournal of Alzheimer's Disease
Volume66
Issue number3
DOIs
Publication statusPublished - 2018

Fingerprint

Quality of Health Care
Dementia
Cohort Studies
Quality of Life
Costs and Cost Analysis
Proxy
Caregivers
Patient Care
Linear Models

Keywords

  • Access to care
  • costs
  • dementia
  • health-economics
  • quality of life
  • unmet needs

Cite this

Handels, Ron L.H. ; Sköldunger, Anders ; Bieber, Anja ; Edwards, Rhiannon Tudor ; Gonçalves-Pereira, Manuel ; Hopper, Louise ; Irving, Kate ; Jelley, Hannah ; Kerpershoek, Liselot ; Marques, Maria J. ; Meyer, Gabriele ; Michelet, Mona ; Portolani, Elisa ; Røsvik, Janne ; Selbaek, Geir ; Stephan, Astrid ; De Vugt, Marjolein ; Wolfs, Claire ; Woods, Bob ; Zanetti, Orazio ; Verhey, Frans ; Wimo, Anders. / Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study. In: Journal of Alzheimer's Disease. 2018 ; Vol. 66, No. 3. pp. 1027-1040.
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abstract = "Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self-and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.",
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Handels, RLH, Sköldunger, A, Bieber, A, Edwards, RT, Gonçalves-Pereira, M, Hopper, L, Irving, K, Jelley, H, Kerpershoek, L, Marques, MJ, Meyer, G, Michelet, M, Portolani, E, Røsvik, J, Selbaek, G, Stephan, A, De Vugt, M, Wolfs, C, Woods, B, Zanetti, O, Verhey, F & Wimo, A 2018, 'Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study', Journal of Alzheimer's Disease, vol. 66, no. 3, pp. 1027-1040. https://doi.org/10.3233/JAD-180275

Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study. / Handels, Ron L.H.; Sköldunger, Anders; Bieber, Anja; Edwards, Rhiannon Tudor; Gonçalves-Pereira, Manuel; Hopper, Louise; Irving, Kate; Jelley, Hannah; Kerpershoek, Liselot; Marques, Maria J.; Meyer, Gabriele; Michelet, Mona; Portolani, Elisa; Røsvik, Janne; Selbaek, Geir; Stephan, Astrid; De Vugt, Marjolein; Wolfs, Claire; Woods, Bob; Zanetti, Orazio; Verhey, Frans; Wimo, Anders.

In: Journal of Alzheimer's Disease, Vol. 66, No. 3, 2018, p. 1027-1040.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

AU - Handels, Ron L.H.

AU - Sköldunger, Anders

AU - Bieber, Anja

AU - Edwards, Rhiannon Tudor

AU - Gonçalves-Pereira, Manuel

AU - Hopper, Louise

AU - Irving, Kate

AU - Jelley, Hannah

AU - Kerpershoek, Liselot

AU - Marques, Maria J.

AU - Meyer, Gabriele

AU - Michelet, Mona

AU - Portolani, Elisa

AU - Røsvik, Janne

AU - Selbaek, Geir

AU - Stephan, Astrid

AU - De Vugt, Marjolein

AU - Wolfs, Claire

AU - Woods, Bob

AU - Zanetti, Orazio

AU - Verhey, Frans

AU - Wimo, Anders

PY - 2018

Y1 - 2018

N2 - Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self-and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

AB - Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self-and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

KW - Access to care

KW - costs

KW - dementia

KW - health-economics

KW - quality of life

KW - unmet needs

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U2 - 10.3233/JAD-180275

DO - 10.3233/JAD-180275

M3 - Article

VL - 66

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EP - 1040

JO - Journal Of Alzheimers Disease

JF - Journal Of Alzheimers Disease

SN - 1387-2877

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ER -