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Dementia trials, outcomes, and outcome measurement instruments for people living with dementia and family carers – considerations on how to improve the “gold standard”

Published online by Cambridge University Press:  10 May 2021

Andrew Harding  and
Siobhan Reilly
Andrew Harding*
Affiliation:
Division of Health Research, Faculty of Health and Medicine, Health Innovation One, Sir John Fisher Drive, Lancaster University, Lancaster, UK
Siobhan Reilly
Affiliation:
Centre for Applied Dementia Studies, University of Bradford, Bradford, UK
*
Email: [email protected]
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Abstract

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Type
Commentary
Information
International Psychogeriatrics , Volume 33 , Special Issue 4: Issue Theme: Caring for Caregivers of People with Dementia , April 2021 , pp. 327 - 330
Copyright
© International Psychogeriatric Association 2021

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References

Bagley, H. J. et al. (2016). A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress. Research Involvement and Engagement, 2, 15. https://doi.org/10.1186/s40900-016-0029-8CrossRefGoogle ScholarPubMed
Ceci, C., Symonds Brown, H. and Judge, H. (2020). Rethinking the assumptions of intervention research concerned with care at home for people with dementia. Dementia (London), 19, 861–877. https://doi.org/10.1177/1471301218790037 CrossRefGoogle ScholarPubMed
Couch, E., Lawrence, V., Co, M. and Prina, M. (2020). Outcomes tested in non- pharmacological interventions in mild cognitive impairment and mild dementia: a scoping review. BMJ Open, 10, e035980. https://doi.org/10.1136/bmjopen-2019-035980 CrossRefGoogle ScholarPubMed
Gonçalves, A. C., Samuel, D., Ramsay, M., Demain, S. and Marques, A. (2019). A core outcome set to evaluate physical activity interventions for people living with dementia. The Gerontologist. https://doi.org/10.1093/geront/gnz100 CrossRefGoogle Scholar
Harding, A. J. E. et al. (2019). What is important to people living with dementia? The ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions. BMC Geriatrics, 19, 1–12. https://doi.org/10.1186/s12877-019-1103-5 CrossRefGoogle ScholarPubMed
Harding, A. J. E. et al. (2020). Core outcome set for nonpharmacological community-based interventions for people living with dementia at home: a systematic review of outcome measurement instruments. The Gerontologist, gnaa071. https://doi.org/10.1093/geront/gnaa071 CrossRefGoogle Scholar
Harrison, J. K., Noel-Storr, A. H., Demeyere, N., Reynish, E. L. and Quinn, T. J. (2016). Outcomes measures in a decade of dementia and mild cognitive impairment trials. Alzheimer’s Research & Therapy, 8, 2–10. https://doi.org/10.1186/s13195-016-0216-8 Google Scholar
McDermott, O. et al. (2019). Psychosocial interventions for people with dementia: a synthesis of systematic reviews. Aging & Mental Health, 23, 393–403. https://doi.org/10.1080/13607863.2017.1423031 CrossRefGoogle ScholarPubMed
Mokkink, L. et al. (2018). COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 27, 1171–1179. https://doi.org/10.1007/s11136-017-1765-4 CrossRefGoogle ScholarPubMed
Moniz-Cook, E. et al. (2008). A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging Ment Health, 12, 14–29. https://doi.org/10.1080/13607860801919850 CrossRefGoogle ScholarPubMed
Morbey, H. et al. (2019). Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development. Trials, 20, 1–12. https://doi.org/10.1186/s13063-018-3069-6 CrossRefGoogle ScholarPubMed
Pione, R., Spector, A., Cartwright, A. and Stoner, C. (2021). A psychometric appraisal of positive psychology outcome measures in use with carers of people living with dementia: a systematic review. International Psychogeriatrics, 33, 385–404. https://doi.org/10.1017/S1041610220003464 Google Scholar
Reilly, S. et al. (2015). Case management approaches to home support for people with dementia. Cochrane Database of Systematic Reviews, 2015, Art. No.: CD008345. https://doi.org/10.1002/14651858.CD008345.pub2 Google Scholar
Reilly, S. T. et al. (2020). What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions. Age and Ageing, afaa015. https://doi.org/10.1093/ageing/afaa015 CrossRefGoogle Scholar
Rockwood, K. and Gauthier, S. (2006). Trial Designs and Outcomes in Dementia Therapeutic research. London: Informa Healthcare.Google Scholar
Stoner, C. R., Orrell, M. and Spector, A. (2018). Psychometric properties and factor analysis of the engagement and independence in dementia questionnaire (EID-Q). Dementia and Geriatric Cognitive Disorders, 46, 119–127. https://doi.org/10.1159/000488484 CrossRefGoogle Scholar
Swarbrick, C. M., Doors, O., Scottish Dementia Working Group; Educate, Davis, K. and Keady, J. (2016). Visioning change: co-producing a model of involvement and engagement in research. Dementia: The International Journal of Social Research and Practice, 18, 3165.CrossRefGoogle Scholar
Tochel, C. et al. (2019). What outcomes are important to patients with mild cognitive impairment or Alzheimer’s disease, their caregivers, and health-care professionals? A systematic review. Alzheimer’s & Dementia, 11, 231–247. https://doi.org/10.1016/j.dadm.2018.12.003 Google ScholarPubMed
Webster, L. et al. (2017). Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations. PLoS One, 12, e0179521. https://doi.org/10.1371/journal.pone.0179521CrossRefGoogle Scholar
Williamson, P. et al. (2017). The COMET Handbook: version 1.0. Trials, 18, 280. https://doi.org/10.1186/s13063-017-1978-4 CrossRefGoogle ScholarPubMed
Woods, B., O’Philbin, L., Farrell, E. M., Spector, A. E. and Orrell, M. (2018). Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, 2018, Art. No.: CD001120. https://doi.org/10.1002/14651858.CD001120.pub3.Google Scholar