Ron L H Handels1,2, Anders Sköldunger2, Anja Bieber3, Rhiannon Tudor Edwards4, Manuel Gonçalves-Pereira5, Louise Hopper6, Kate Irving6, Hannah Jelley7, Liselot Kerpershoek1, Maria J Marques5, Gabriele Meyer3, Mona Michelet8,9,10, Elisa Portolani11, Janne Røsvik8,10, Geir Selbaek8,12,9, Astrid Stephan3, Marjolein de Vugt1, Claire Wolfs1, Bob Woods7, Orazio Zanetti11, Frans Verhey1, Anders Wimo2,13. 1. Department of Psychiatry and Neuropsychology, Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands. 2. Department of Neurobiology, Care Science and Society, Division of Neurogeriatrics, Karolinska Institute, Stockholm, Sweden. 3. Martin Luther University Halle-Wittenberg, Medical Faculty, Institute for Health and Nursing Science, Halle (Saale), Germany. 4. Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, United Kingdom. 5. CEDOC, Chronic Diseases Research Centre, NOVA Medical School/Faculdade de Ci--ncias Médicas, Universidade Nova de Lisboa, Portugal. 6. School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland. 7. Dementia Services Development Centre Wales (DSDC), Bangor University, Bangor, United Kingdom. 8. Norwegian National Advisory Unit on Ageing and Health, Vestfold Health Trust, T--nsberg, Norway. 9. Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway. 10. Department of Geriatric Medicine, Oslo University Hospital, Norway. 11. Alzheimer's Unit - Memory Clinic, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy. 12. Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway. 13. Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.
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.
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.
Entities:
Keywords:
Access to care; costs; dementia; health-economics; quality of life; unmet needszzm321990
Authors: Zhaohui Su; Barry L Bentley; Dean McDonnell; Junaid Ahmad; Jiguang He; Feng Shi; Kazuaki Takeuchi; Ali Cheshmehzangi; Claudimar Pereira da Veiga Journal: J Med Internet Res Date: 2022-04-27 Impact factor: 7.076
Authors: Meg Perry-Duxbury; Job van Exel; Werner Brouwer; Anders Sköldunger; Manuel Gonçalves-Pereira; Kate Irving; Gabriele Meyer; Geir Selbæk; Bob Woods; Orazio Zanetti; Frans Verhey; Anders Wimo; Ron L H Handels Journal: Qual Life Res Date: 2019-10-08 Impact factor: 4.147
Authors: Petra Baji; Werner B F Brouwer; Job van Exel; Dominik Golicki; Valentina Prevolnik Rupel; Zsombor Zrubka; László Gulácsi; Valentin Brodszky; Fanni Rencz; Márta Péntek Journal: Qual Life Res Date: 2020-10-10 Impact factor: 3.440