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PUBLICATIONS Dementia care and support

PUBLICATIONS | Dementia care and support

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14 Dec 2024

Journal article

Germany

English

Comparing Different Implementation Strategies for Collaborative Dementia Care Management in Terms of Patients’ Characteristics, Unmet Needs, and the Impact on Quality of Life and Costs in Germany

Platen, M., Hoffmann, W. & Michalowsky, B. Comparing Different Implementation Strategies for Collaborative Dementia Care Management in Terms of Patients’ Characteristics, Unmet Needs, and the Impact on Quality of Life and Costs in Germany. PharmacoEconomics Open (2024). https://doi.org/10.1007/s41669-024-00548-w

Journal article

23 Nov 2024

Journal article

Macao

English

Quality of life and associated characteristics in long-term care residents with advanced dementia in Macao: a cross-sectional study

Wu, J., Tam, K.I., Wang, H. et al. Quality of life and associated characteristics in long-term care residents with advanced dementia in Macao: a cross-sectional study. BMC Geriatr 24, 969 (2024). https://doi.org/10.1186/s12877-024-05466-4

Journal article

14 May 2024

Journal article

Brazil
Chile
India
International
United Kingdom

English

Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low–Middle-Income Countries

Suárez-González A, Savage SA, Alladi S, Amaral-Carvalho V, Arshad F, Camino J, Caramelli P, Comas-Herrera A, Cook J, Cooper C, et al. Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low–Middle-Income Countries. International Journal of Environmental Research and Public Health. 2024; 21(6):790. https://doi.org/10.3390/ijerph21060790

Journal article

06 May 2024

Journal article

India

English

Relational solidarity and conflicting ethics in dementia care in urban India

Bianca Brijnath, Rachita Rao, Upasana Baruah, Josefine Antoniades, Santosh Loganathan, Mathew Varghese, Claudia Cooper, Mike Kent, Briony Dow, Relational solidarity and conflicting ethics in dementia care in urban India, The Journals of Gerontology: Series B, 2024;, gbae079, https://doi.org/10.1093/geronb/gbae079

Journal article

25 Apr 2024

Journal article

United Kingdom
United Kingdom (England)

English

Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future

Damant J, Freddolino P, Dangoor M, Hu B, King D, Wittenberg R. Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future. Dementia. 2024;23(5):779-799. doi:10.1177/14713012241249793

Journal article

17 Apr 2024

Journal article

Fiji

English

‘Letting it be’: a grounded theory about dementia care in Fiji

Johnston, K., Qaloewai, S., Rasavuka, T., Preston, R., Strivens, E., & Larkins, S. (2024). ‘Letting it be’: a grounded theory about dementia care in Fiji. Aging & Mental Health, 1–11. https://doi.org/10.1080/13607863.2024.2340737

Journal article

15 Apr 2024

Journal article

Netherlands

English

Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data

Bosmans JE, van der Heide I, van Hout HPJ, Joling KJ. Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data. Int J Geriatr Psychiatry. 2024 May;39(5):e6094. doi:

Journal article

27 Jan 2024

Journal article

United Kingdom (England)

English

Scaling-up an evidence-based intervention for family carers of people with dementia: Current and future costs and outcomes

Knapp M, Lorenz-Dant K, Walbaum M, Comas-Herrera A, Cyhlarova E, Livingston G and Wittenberg R. Scaling-up an evidence-based intervention for family carers of people with dementia: current and future costs and outcomes. Int J Geriatr Psychiatry. 2024;e6059. https://doi.org/10.1002/gps.6059

Journal article

27 Jan 2024

Journal article

Republic of Korea

English

The impact of the implementation of a national policy on dementia on healthcare costs in older patients with dementia in Korea: a quasi-experimental difference-in-difference study

Choi, M., Kim, W., Moon, J.Y., Shin,J. (2024) The impact of the implementation of a national policy on dementia on healthcare costs in older patients with dementia in Korea: a quasi-experimental difference-in-difference study. The Lancet Regional Health – Western Pacific, Volume 44. https://doi.org/10.1016/j.lanwpc.2024.101010.

Journal article

30 Nov 2023

Journal article

United Kingdom (England)

English

Enabling health and maintaining independence for older people at home (HomeHealth trial): a multicentre randomised controlled trial

Enabling health and maintaining independence for older people at home (HomeHealth trial). HomeHealth is a new home-based, manualised voluntary sector service supporting older people with mild frailty to maintain their independence through behaviour change.   Frost, R., Avgerinou, C., Kalwarowsky, S., Mahmood, F., Goodman, C., Clegg, A., Hopkins, J., Gould, R., Gardner, B., Marston, L., […]

Journal article

02 Nov 2023

Guidance and Resources

United Kingdom

English

Research in Dementia Map (RESIDE)

Research in dementia mapping (2023) RESIDE. Available at: https://dementiamap.uk/

Guidance and Resources

27 Sep 2023

Journal article

United Kingdom

English

Perspectives on approaching pain management in patients with dementia

Attrill, L., & Schofield, P. (2024). Perspectives on approaching pain management in patients with dementia. Pain Management, 14(3), 153–161. https://doi.org/10.2217/pmt-2023-0095

Journal article

31 Aug 2023

Journal article

International

English

The development and validation of the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia)

Bhatt, J., Brohan, E., Blasco, D., Oliveira, D., Bakolis, I., Comas-Herrera, A., D’Amico, F., Farina N., Knapp M., Stevens M., Thornicroft G., Wilson E., Salcher-Konrad M., Yang L.H and Evans-Lacko, S. (2023). The development and validation of the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). BJPsych Open, 9(5), E164. doi:10.1192/bjo.2023.551

Journal article

21 Apr 2023

Guidance and Resources

English

The DEEP-Ethics Gold Standards for Dementia Research

DEEP. (2023). The DEEP-Ethics Gold Standards for Dementia Research. DEEP v.3. https://www.dementiavoices.org.uk/wp-content/uploads/2020/07/The-DEEP-Ethics-Gold-Standards-for-Dementia-Research.pdf  

Guidance and Resources

03 Apr 2023

Journal article

United Kingdom

English

Understanding factors influencing residential respite service use by carers of people living with dementia using Andersen’s behavioural model of health services use: A qualitative study

Kritika Samsi, Katharine Orellana, Laura Cole & Jill Manthorpe (2023) Understanding factors influencing residential respite service use by carers of people living with dementia using Andersen’s behavioural model of health services use: A qualitative study, Aging & Mental Health, 27:10, 1946-1955, DOI: 10.1080/13607863.2023.2196254

Journal article

07 Nov 2022

Guidance and Resources

Brazil
India
Indonesia
International
Jamaica
Kenya
South Africa

English

Don’t forget I’m human –reducing dementia stigma. The STRiDE Anti-Stigma Toolkit.

Evans-Lacko, S., Farina, N., Ferri, C., Franzon, A. C., Godoy, C., Hurzuk, S., Jacobs, R., Mata, F., Mateus, E., Musyimi, C., Oliveira, D., Ong, E., López-Ortega, M., Surawattananon, N., & Weidner, W. (2022). Don’t forget I’m human –reducing dementia stigma. The STRiDE Anti-Stigma Toolkit. London School of Economics and Political Science. https://stridedementia.turtl.co/story/anti-stigma-toolkit/page/1

Guidance and Resources

14 Sep 2022

Journal article

New Zealand

English

Do Māori and Pacific Peoples Living with Dementia in New Zealand Receive Equitable Long-Term Care Compared with New Zealand Europeans?

Ma’u, E., Saeed, F., Yates, S., Oulaghan, B., Whittington, R., Coomarasamy, C., Cheung, G. and Cullum, S. (2022) ‘Do Māori and Pacific Peoples Living with Dementia in New Zealand Receive Equitable Long-Term Care Compared with New Zealand Europeans?’, Journal of Long Term Care, (2022), p. 222–233. Available at: https://doi.org/10.31389/jltc.148.

Journal article

14 Aug 2022

Journal article

India

English

Understanding, experiences and attitudes of dementia in India: A qualitative study

Hurzuk, S., Farina, N., Pattabiraman, M., Ramasamy, N., Alladi, S., Rajagopalan, J., Comas-Herrera, A., Thomas, P. T., & Evans-Lacko, S. (2022). Understanding, experiences and attitudes of dementia in India: A qualitative study. Dementia, 21(7). https://doi.org/10.1177/14713012221118774

Journal article

19 Jul 2022

Journal article

Brazil

English

Reducing dementia-related stigma and discrimination among community health workers in Brazil: protocol for a randomised controlled feasibility trial

Oliveira, D., Godoy, C., Da Mata, F. A. F., Mateus, E., Franzon, A. C. A., Farina, N., Evans-Lacko, S., & Ferri, C. P. (2022). Reducing dementia-related stigma and discrimination among community health workers in Brazil: protocol for a randomised controlled feasibility trial. BMJ Open, 12(7). https://doi.org/10.1136/bmjopen-2021-060033

Journal article

09 Jun 2022

Journal article

South Africa

English

Stigma and its implications for dementia in South Africa: a multi-stakeholder exploratory study

Jacobs, R., Schneider, M., Farina, N., du Toit, P., & Evans-Lacko, S. (2022). Stigma and its implications for dementia in South Africa: a multi-stakeholder exploratory study. Ageing and Society. https://doi.org/10.1017/s0144686x2200040x

Journal article

31 May 2022

Journal article

United Kingdom
United Kingdom (England)

Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study

King, D., Farina, N., Burgon, C. et al. Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study. BMC Geriatr 22, 469 (2022). https://doi.org/10.1186/s12877-022-03142-z

Journal article

01 Jul 2021

Journal article

Brazil
India
Indonesia
Jamaica
Kenya
Mexico
South Africa

Building a strategic theory of change to address dementia care, treatment and support gaps

Breuer E, Comas-Herrera A, Freeman E, Albanese E, Alladi S, Amour R, Evans-Lacko S, Ferri CP, Govia I, Iveth Astudillo García C, Knapp M, Lefevre M, López-Ortega M, Lund C, Musyimi C, Ndetei D, Oliveira D, Palmer T, Pattabiraman M, Sani TP, Taylor D, Taylor E, Theresia I, Thomas PT, Turana Y, Weidner W, Schneider […]

Journal article

20 May 2021

Journal article

Brazil

English

Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study

Oliveira, D., Da Mata, F. A. F., Mateus, E., Musyimi, C. W., Farina, N., Ferri, C. P., & Evans-Lacko, S. (2021). Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study. Ageing and Society, 43(2). https://doi.org/10.1017/S0144686X21000660

Journal article

30 Mar 2021

Journal article

Kenya

English

Perceptions and experiences of dementia and its care in rural Kenya

Musyimi, C. W., Ndetei, D. M., Evans-Lacko, S., Oliveira, D., Mutunga, E., & Farina, N. (2021). Perceptions and experiences of dementia and its care in rural Kenya. Dementia, 20(8). https://doi.org/10.1177/14713012211014800

Journal article

20 Jan 2021

Journal article

New Zealand

English

Predictors of Aged Residential Care Placement in Patients Newly Diagnosed with Dementia at a New Zealand Memory Service

Cullum, S., Varghese, C., Yates, S., Kalauta, L., Appleton, J., Knell, R., Prigent, C., Christie, M., Appleton, K., Hadfield, L., Liu, B., Rajay, A., Yeom, B., Oulaghan, B., Whittington, R. and Cheung, G. (2021) ‘Predictors of Aged Residential Care Placement in Patients Newly Diagnosed with Dementia at a New Zealand Memory Service’, Journal of Long Term […]

Journal article

21 Dec 2020

Journal article

German

Den Schmerz von Menschen mit Demenz erfassen

Laekeman M (2020) Den Schmerz von Menschen mit Demenz erfassen – Pain Assessment in Impaired Cognition Scale (PAIC 15). Physiopraxis, 18(06): 52-53. DOI: 10.1055/a-1191-8688  www.thieme.de/physiopraxis

Journal article

17 Dec 2020

Journal article

English

Unethical governance: capacity legislation and the exclusion of people diagnosed with dementias from research

Fletcher, J. R. (2021). Unethical governance: capacity legislation and the exclusion of people diagnosed with dementias from research. Research Ethics, 17(3), 298–308. https://doi.org/10.1177/1747016120982023

Journal article

20 Nov 2020

Journal article

Spain

English

Pain in Older Adults With Dementia: A Survey in Spain

Giménez-Llort L, Bernal ML, Docking R, Muntsant-Soria A, Torres-Lista V, Bulbena A and Schofield PA (2020). Pain in Older Adults With Dementia: A Survey in Spain. Frontiers in Neurology https://doi.org/10.3389/fneur.2020.592366

Journal article

15 Jul 2020

Journal article

United Kingdom

A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia

De Poli, C., Oyebode, J., Airoldi, M., Glover R. A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia. BMC Health Serv Res 20, 657 (2020). https://doi.org/10.1186/s12913-020-05416-x

Journal article

03 Jul 2020

Journal article

Denmark

English

Barriers in access to dementia care in minority ethnic groups in Denmark: a qualitative study

Nielsen, T. R., Nielsen, D. S., & Waldemar, G. (2021). Barriers in access to dementia care in minority ethnic groups in Denmark: a qualitative study. Aging & Mental Health, 25(8), 1424–1432. https://doi.org/10.1080/13607863.2020.1787336

Journal article

17 Dec 2019

Journal article

Ireland

English

Factors influencing the cost of care and admission to long-term care for people with dementia in Ireland

Walsh, S., Pertl, M., Gillespie, P., Lawlor, B., Brennan, S., & O’Shea, E. (2019). Factors influencing the cost of care and admission to long-term care for people with dementia in Ireland. Aging & Mental Health, 25(3), 512–520. https://doi.org/10.1080/13607863.2019.1699901

Journal article

05 Nov 2019

Journal article

Italy
Poland
United Kingdom

English

Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation

Szcześniak, D., Rymaszewska, J., Saibene, F. L., Lion, K. M., D’arma, A., Brooker, D., … Farina, E. (2019). Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation. Aging & Mental Health, 25(1), 149–159. https://doi.org/10.1080/13607863.2019.1683814

Journal article

20 Sep 2019

Report

International

Chinese
English
French
Spanish

World Alzheimer Report 2019: Attitudes to dementia

Alzheimer’s Disease International. 2019. World Alzheimer Report 2019: Attitudes to dementia. London: Alzheimer’s Disease International. https://www.alzint.org/resource/world-alzheimer-report-2019/

Report

13 Sep 2019

Journal article

Italy
Netherlands
Serbia
Spain

English

Observational pain assessment in older persons with dementia in four countries: Observer agreement of items and factor structure of the Pain Assessment in Impaired Cognition

de Waal MWM, van Dalen-Kok AH, de Vet HCW, et al. Observational pain assessment in older persons with dementia in four countries: Observer agreement of items and factor structure of the Pain Assessment in Impaired Cognition. Eur J Pain. 2020; 24: 279–296. https://doi.org/10.1002/ejp.1484

Journal article

05 Sep 2019

Journal article

Europe
International

English

The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia

Kunz M, de Waal MWM, Achterberg WP, et al. The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia. Eur J Pain. 2020; 24: 192–208. https://doi.org/10.1002/ejp.1477

Journal article

12 Aug 2019

Journal article

Netherlands

English

Pain Assessment in Impaired Cognition: Observer Agreement in a Long-Term Care Setting in Patients with Dementia

van Dalen-Kok, A. H., Achterberg, W. P., Rijkmans, W. E., de Vet, H. C., & de Waal, M. W. (2019). Pain assessment in impaired cognition: observer agreement in a long-term care setting in patients with dementia. Pain management, 9(5), 461-473. https://doi.org/10.2217/pmt-2019-0025

Journal article

22 Dec 2017

Journal article

Netherlands

English

Pain Assessment in Impaired Cognition (PAIC): content validity of the Dutch version of a new and universal tool to measure pain in dementia

van Dalen-Kok, A. H., Achterberg, W. P., Rijkmans, W. E., Tukker-van Vuuren, S. A., Delwel, S., de Vet, H. C., Lobbezoo, F., de Waal, M. W. (2018). Pain Assessment in Impaired Cognition (PAIC): content validity of the Dutch version of a new and universal tool to measure pain in dementia. Clinical Interventions in Aging, 13, […]

Journal article

10 Dec 2014

Journal article

International

English

An international road map to improve pain assessment in people with impaired cognition: the development of the Pain Assessment in Impaired Cognition (PAIC) meta-tool

Corbett, A., Achterberg, W., Husebo, B., Lobbezoo, F., de Vet, H., Kunz, M., Strand l, Constantinou M, Tudose C, Kappesser J, de Waal M & Lautenbacher S. (2014). An international road map to improve pain assessment in people with impaired cognition: the development of the Pain Assessment in Impaired Cognition (PAIC) meta-tool. BMC neurology, 14(1), […]

Journal article

18 Jan 2007

Journal article

Netherlands

English

Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study

Dröes, R. M., Meiland, F. J. M., Schmitz, M. J., & van Tilburg, W. (2006). Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study. Aging & Mental Health, 10(2), 112–124. https://doi.org/10.1080/13607860500310682

Journal article

No pub date set

Journal article

Ireland

English

Public preferences for services and supports aimed at Family Carers of People with Dementia: A Discrete Choice Experiment

Teahan Á, Walsh S, Doherty E, O’Shea E 2021. Public preferences for services and supports aimed at Family Carers of People with Dementia: A Discrete Choice Experiment. Social Science and Medicine, DOI: 10.1016/j.socscimed.2021.114359 

Journal article

No pub date set

Journal article

United Kingdom

English

What are the factors associated with people with advanced dementia refusing assistance with personal care?

Backhouse T, Killett A, Mioshi E, Khondoker M. What are the factors associated with people with advanced dementia refusing assistance with personal care? Int J Geriatr Psychiatry. 2023;e5857. https://doi.org/10.1002/gps.5857

Journal article