Protocol for the Rare Dementia Support Impact study: RDS Impact.
Rare Dementia Support
dementia
dementia support groups
young-onset dementia
Journal
International journal of geriatric psychiatry
ISSN: 1099-1166
Titre abrégé: Int J Geriatr Psychiatry
Pays: England
ID NLM: 8710629
Informations de publication
Date de publication:
08 2020
08 2020
Historique:
received:
18
09
2019
accepted:
07
12
2019
pubmed:
27
12
2019
medline:
4
3
2021
entrez:
27
12
2019
Statut:
ppublish
Résumé
The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dementia, comprising the following five work packages (WPs): (a) longitudinal cohort interviews, (b) theoretical development, (c) developing measures, (d) novel interventions, and (e) economic analysis. This is a mixed-methods design, including a longitudinal cohort study (quantitative and qualitative) and a feasibility randomised control trial (RCT). A cohort of more than 1000 individuals will be invited to participate. The primary and secondary outcomes will be in part determined through a co-design nominal groups technique prestudy involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on prespecified hypotheses. A variety of quantitative (eg, analysis of variance [ANOVA] and multiple linear regression techniques), qualitative (eg, thematic analysis [TA]), and innovative analytical methods will also be developed and applied by involving the arts as a research method. The UCL Research Ethics Committee have approved this study. Data collection commenced in January 2020. The study will capture information through a combination of longitudinal interviews, questionnaires and scales, and novel creative data collection methods. The notion of "impact" in the context of support for rare dementias will involve theoretical development, novel measures and methods of support interventions, and health economic analyses.
Types de publication
Journal Article
Multicenter Study
Randomized Controlled Trial
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
833-841Subventions
Organisme : Economic and Social Research Council
ID : ES/S010467/1
Organisme : Department of Health
Pays : United Kingdom
Informations de copyright
© 2019 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.
Références
Harvey RJ, Roques P, Fox NC, Rossor MN. Non-Alzheimer dementias in young-patients. Br J Psychiatry 1996;168(3):384-385. https://doi.org/10.1192/bjp.168.3.384b
Onyike CU, Diehl-Schmid J. The epidemiology of frontotemporal dementia. Int Rev Psychiatry. 2013;25:130-137.
Tang-Wai DF, Graff-Radford NR, Boeve BF, et al. Clinical, genetic, and neuropathologic characteristics of posterior cortical atrophy. Neurology. 2004;63(7):1168-1174.
Murray ME, Graff-Radford NR, Ross OA, Petersen RC, Duara R, Dickson DW. Neuropathologically defined subtypes of Alzheimer's disease with distinct clinical characteristics: a retrospective study. Lancet Neurol. 2011;10(9):785-796. https://doi.org/10.1016/S1474-4422(11)70156-9.
Woolley J, Khan BK, Murthy NK, Miller BL, Rankin KP. The diagnostic challenge of psychiatric symptoms in neurodegenerative disease; rates of and risk factors for prior psychiatric diagnosis in patients with early neurodegenerative disease. J Clin Psychiatry. 2011;72(2):1-14. https://doi.org/10.4088/JCP.10m06382oli.
Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatrics. 2011;23(3):356-371. https://doi.org/10.1017/S1041610210001353.
Allen J, Oyebode JR, Allen JM. Having a father with young onset dementia: the impact on well-being of young people. Dementia. 2009;8(4):455-480. https://doi.org/10.1177/1471301209349106.
Toms GR, Clare L, Nixon J, Quinn C. A systematic narrative review of support groups for people with dementia. Int Psychogeriatrics. 2015;27(9):1439-1465. https://doi.org/10.1017/S1041610215000691.
Dam AEH, De Vugt ME, Klinkenberg IPM, Verhey FRJ, Van Boxtel MPJ. A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas. 2016;85:117-130. https://doi.org/10.1016/j.maturitas.2015.12.008.
Department of Health. Prime Minister's Challenge on Dementia 2020 Implementation Plan. 2016;(March 2016).
Clarke CL, Keyes SE, Wilkinson H, et al. The national evaluation of peer support networks and dementia advisers in implementation of the National Dementia Strategy for England [ref: 025/0058] report. https://www.gov.uk/government/publications/peer-support-networks-and-dementia-advisers-evaluation. Published October 9, 2013. Accessed August 15, 2019.
McKechnie V, Barker C, Stott J. Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review. Int Psychogeriatrics. 2014;26(10):1619-1637. https://doi.org/10.1017/S1041610214001045.
Willis E, Semple AC, de Waal H. Quantifying the benefits of peer support for people with dementia: a social return on investment (SROI) study. Dementia. 2018;17(3):266-278. https://doi.org/10.1177/1471301216640184.
Leung P, Orrell M, Orgeta V. Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature. Int J Geriatr Psychiatry. 2015;30(1):1-9. https://doi.org/10.1002/gps.4166.
Keyes SE, Clarke CL, Wilkinson H, et al. “We're all thrown in the same boat … ”: a qualitative analysis of peer support in dementia care. Dementia. 2016;15(4):560-577. https://doi.org/10.1177/1471301214529575.
Delbecq AL, Van de Ven AH. A group process model for problem identification and program planning. J Appl Behav Sci. 1971;7(4):466-492.
Braun V, Clarke V. Qualitative research in psychology using thematic analysis in psychology using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. https://doi.org/10.1191/1478088706qp063oa.
Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D, & Sher KJ, eds. APA Handbook of Research Methods in Psychology. Vol 2; Washington DC: American Psychological Association; 2012. https://doi.org/10.1037/13620-004.
Camic PM, Crutch SJ, Murphy C, et al. Conceptualising and understanding artistic creativity in the dementias: interdisciplinary approaches to research and practise. Front Psychol. 2018;9(OCT):1-12. https://doi.org/10.3389/fpsyg.2018.01842.
Langer CL, Furman R. Exploring identity & assimilation: research and interpretive poems. Forum Qual Soc Res. 2004;5(2). http://www.qualitative-research.net/index.php/fqs/article/view/609/1319
Harrison CR. The lines are open: an artist's experience of working with dementia research. Dementia. 2018;17(6):755-762. https://doi.org/10.1177/1471301217734097.
Reavey P. Visual Methods in Psychology: Using and Interpreting Images in Qualitative Research. London: Psychology Press - Routledge; 2011.
Furman R, Lietz C, Langer CL. The research poem in international social work: innovations in qualitative methodology. Int J Qual Methods. 2006;5(3):24-34. https://doi.org/10.1177/160940690600500305.
Clarke A, Analysis S. In: Xenitidou M, Gilbert N, eds. Innovations in Social Science Research Methods. Guilford: ESRC National Centre for Research Methods, University of Surrey; 2009:55-56.
Mayne J. Useful theory of change models. Can J Progr Eval. 2015;30(2):119-142. https://doi.org/10.3138/cjpe.230.
WHO. World Report on Ageing and Health; 2015. https://www.who.int/ageing/events/world-report-2015-launch/en/, 111, 1009, 1010
Harding AJE, Morbey H, Ahmed F, et al. Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions. Trials. 2018;19(1):1-13. https://doi.org/10.1186/s13063-018-2584-9.
Moniz-Cook E, Vernooij-Dassen M, Woods R, et al. A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging Ment Heal. 2008;12(1):14-29. https://doi.org/10.1080/13607860801919850.
Webster L, Groskreutz D, Grinbergs-Saull A, et al. 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. 2017;12(6):1-22. https://doi.org/10.1371/journal.pone.0179521.
Guay C, Auger C, Demers L, et al. Components and outcomes of internet-based interventions for caregivers of older adults: systematic review. J Med Internet Res. 2017;19(9):1-18. https://doi.org/10.2196/jmir.7896.
Henry SL. Web Content Accessibility Guidelines (WCAG). https://www.w3.org/WAI/standards-guidelines/wcag/. Published 2018.
Russell D, Hoare ZSJ, Whitaker R, Whitaker CJ, Russell IT. Generalized method for adaptive randomization in clinical trials. Stat Med. 2011;30(9):922-934. https://doi.org/10.1002/sim.4175.
Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727-1736. https://doi.org/10.1007/s11136-011-9903-x.
Wimo A, Jonsson L, Zbrozek A. The resource utilization in dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Heal Aging. 2010;14(8):685-690. https://doi.org/10.1007/s12603-010-0316-2.
Moore GF, Audrey S, Barker M, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350:h1258. https://doi.org/10.1136/bmj.h1258.
Smith SC, Lamping DL, Banerjee S, et al. Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychol Med. 2007;37(5):737-746. https://doi.org/10.1017/S0033291706009469.
Wimo A, Guerchet M, Ali GC, et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2017;13(1):1-7. https://doi.org/10.1016/j.jalz.2016.07.150.