Interventions delivered by primary or community healthcare professionals to support people living at home with dementia with activities of daily living: a systematic review and narrative synthesis.
Behavioural interventions
Community care
Continence
Family carers
Healthcare professionals
Non-pharmacological interventions
People living with dementia
Primary care
Systematic review
Journal
BMC geriatrics
ISSN: 1471-2318
Titre abrégé: BMC Geriatr
Pays: England
ID NLM: 100968548
Informations de publication
Date de publication:
23 Oct 2024
23 Oct 2024
Historique:
received:
22
11
2023
accepted:
11
10
2024
medline:
24
10
2024
pubmed:
24
10
2024
entrez:
24
10
2024
Statut:
epublish
Résumé
Most people living with dementia live in their own home supported by family carers. One of the most challenging problems they face is managing toilet-use and continence. Carers have repeatedly asked for better advice from healthcare professionals. The purpose of this systematic review was to inform the development of an intervention to support healthcare professionals to provide existing continence management advice to the carers of people living at home with dementia. It aimed to identify and synthesise lessons from the development and evaluation of interventions, involving primary or community healthcare professionals, to support the provision of management advice aimed at supporting people living at home with dementia and their carers with activities of daily living. Due to a lack of relevant continence or toilet-use interventions, this included, but was not limited to, toileting or continence care. Literature (February 2009-November 2022) was searched using five databases: MEDLINE (Ovid); PsycINFO (Ovid); EMBASE (Ovid); Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCO); and Cochrane Central Register of Controlled Trials (CENTRAL). Empirical studies using a variety of methodologies were included and thus the quality of papers appraised using the Mixed-Methods Appraisal Tool. No studies were excluded based on quality. A narrative synthesis was undertaken. Twelve articles reporting on 10 interventions were included. Most comprised the provision of online resources only, although some combined these with online or face-to-face contact with healthcare professionals. A variety of methodologies was utilised including randomised controlled trials. The quality of included studies was variable. Six main themes were identified: mode of delivery; targeted and tailored resources; content, design and navigation; credibility; user involvement in the development and evaluation of information resources; and role of professionals and organisations. Despite the urgent need to better support people living at home with dementia and their carers, this review highlights the paucity of studies reporting on interventions delivered within primary and community healthcare contexts to provide management advice aimed at supporting this population with activities of daily living. This review has identified important considerations that will potentially aid the development, delivery and evaluation of such interventions. PROSPERO International Prospective Register of Systematic Reviews CRD42022372456.
Sections du résumé
BACKGROUND
BACKGROUND
Most people living with dementia live in their own home supported by family carers. One of the most challenging problems they face is managing toilet-use and continence. Carers have repeatedly asked for better advice from healthcare professionals. The purpose of this systematic review was to inform the development of an intervention to support healthcare professionals to provide existing continence management advice to the carers of people living at home with dementia. It aimed to identify and synthesise lessons from the development and evaluation of interventions, involving primary or community healthcare professionals, to support the provision of management advice aimed at supporting people living at home with dementia and their carers with activities of daily living. Due to a lack of relevant continence or toilet-use interventions, this included, but was not limited to, toileting or continence care.
METHODS
METHODS
Literature (February 2009-November 2022) was searched using five databases: MEDLINE (Ovid); PsycINFO (Ovid); EMBASE (Ovid); Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCO); and Cochrane Central Register of Controlled Trials (CENTRAL). Empirical studies using a variety of methodologies were included and thus the quality of papers appraised using the Mixed-Methods Appraisal Tool. No studies were excluded based on quality. A narrative synthesis was undertaken.
RESULTS
RESULTS
Twelve articles reporting on 10 interventions were included. Most comprised the provision of online resources only, although some combined these with online or face-to-face contact with healthcare professionals. A variety of methodologies was utilised including randomised controlled trials. The quality of included studies was variable. Six main themes were identified: mode of delivery; targeted and tailored resources; content, design and navigation; credibility; user involvement in the development and evaluation of information resources; and role of professionals and organisations.
CONCLUSIONS
CONCLUSIONS
Despite the urgent need to better support people living at home with dementia and their carers, this review highlights the paucity of studies reporting on interventions delivered within primary and community healthcare contexts to provide management advice aimed at supporting this population with activities of daily living. This review has identified important considerations that will potentially aid the development, delivery and evaluation of such interventions.
SYSTEMATIC REVIEW REGISTRATION
BACKGROUND
PROSPERO International Prospective Register of Systematic Reviews CRD42022372456.
Identifiants
pubmed: 39443920
doi: 10.1186/s12877-024-05465-5
pii: 10.1186/s12877-024-05465-5
doi:
Types de publication
Journal Article
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
860Informations de copyright
© 2024. The Author(s).
Références
World Health Organisation. Dementia factsheet. World Health Organisation. 2023. https://www.who.int/news-room/fact-sheets/detail/dementia . Accessed 18 July 2024.
Social Care Institute for Excellence (SCIE). Dementia: at a glance. SCIE. 2020. https://www.scie.org.uk/dementia/about/ . Accessed 18 July 2024.
House of Commons. Health and Social Care Committee Supporting people with dementia and their carers. Seventh Report of Session 2021–22 report. London: House of Commons; 2021.
Alzheimer’s Society. Carers UK’s State of Caring 2021 report – Alzheimer’s Society responds. London: Alzheimer’s Society. 2021. https://www.alzheimers.org.uk/news/2021-11-03/carers-uks-state-caring-2021-report-alzheimers-society-responds . Accessed 18 July 2024.
The King’s Fund. Caring in a complex world: perspectives from unpaid carers and the organisations that support them. London; The King’s Fund; 2023.
Bucks R, Ashworth D, Wilcock G, Siegfried K. Assessment of activities of daily living in dementia: development of the Bristol activities of Daily Living Scale. Age Ageing. 1996;25(2):113–20.
doi: 10.1093/ageing/25.2.113
pubmed: 8670538
Giebel C, Sutcliffe C, Challis D. Activities of daily living and quality of life across different stages of dementia: a UK study. Aging Ment Health. 2015;19(1):63–71.
doi: 10.1080/13607863.2014.915920
pubmed: 24831511
World Health Organisation. Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organisation; 2017.
Norton L, Malloy P, Salloway S. The impact of behavioral symptoms on activities of daily living in patients with dementia. Am J Geriatr Psychiatry. 2001;9(1):41–8.
doi: 10.1097/00019442-200102000-00007
pubmed: 11156751
Murphy C, de Laine C, Macaulay M, Avery M, Fader M. A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment. Age Ageing. 2022;51(1):1–9.
doi: 10.1093/ageing/afab221
Drennan V, Cole L, Iliffe S. A taboo within a stigma? A qualitative study of managing incontinence with people with dementia living at home. BMC Geriatr. 2011;11:75.
doi: 10.1186/1471-2318-11-75
pubmed: 22081876
pmcid: 3250935
Schluter P, Ward C, Arnold E, Scrase R, Jamieson H. Urinary incontinence, but not fecal incontinence, is a risk factor for admission to aged residential care of older persons in New Zealand. Neurourol Urodyn. 2017;36(6):1588–95.
doi: 10.1002/nau.23160
pubmed: 27778373
Hauber A, Mohamed A, Johnson F, Cook M, Arrighi H, Zhang J, Grundman M. Understanding the relative importance of preserving functional abilities in Alzheimer’s disease in the United States and Germany. Qual Life Res. 2014;23(6):1813–21.
doi: 10.1007/s11136-013-0620-5
pubmed: 24448684
Murphy C, Chester H, Bradbury B, Morrison L, Manthorpe J, Fader M, Santer M, Ward J. Continence care for people living with dementia: a strategic priority. J Dement Care. 2022;30(6):18–9.
Murphy C, De Laine C, Macaulay M, Hislop Lennie K, Fader M. Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions. Age Ageing. 2021;50(3):944–54. https://doi.org/10.1093/ageing/afaa262 .
doi: 10.1093/ageing/afaa262
pubmed: 33320926
Richards D, Hilli A, Pentecost C, Goodwin V, Frost J. Fundamental nursing care: a systematic review of the evidence on the effect of nursing care interventions for nutrition, elimination, mobility and hygiene. J Clin Nurs. 2018;27(11–12):2179–88.
doi: 10.1111/jocn.14150
pubmed: 29156087
pmcid: 6001513
Cremer S, Vluggen S, de Man-Van-Ginkel J, Metzelthin S, Zwakhalen S, Bleijlevens M. Effective nursing interventions in ADL care affecting independence and comfort - a systematic review. Geriatr Nurs. 2023;52:73–90.
doi: 10.1016/j.gerinurse.2023.04.015
pubmed: 37269607
Dawson A, Bowes A, Kelly F, Velzke K, Ward R. Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatr. 2015;15:59.
doi: 10.1186/s12877-015-0053-9
pubmed: 25967742
pmcid: 4465454
Cheng S, Lin D, Hu T, Cao L, Liao H, Mou X, Zhang Q, Liu J, Wu T. Association of urinary incontinence and depression or anxiety: a meta-analysis. J Int Med Res. 2020;48(6). https://doi.org/10.1177/0300060520931348 .
Bradbury B, Chester H, Santer M, Morrison L, Fader M, Ward J, Manthorpe J, Murphy C. Healthcare professionals’ experiences and views of providing continence support and advice for people living at home with dementia in England: that’s a carer’s job. BMC Geriatr. 2024;24(213). https://doi.org/10.1186/s12877-024-04830-8 .
Yardley L, Morrison L, Bradbury K, Muller I. The person-based approach to intervention development: application to digital health-related behaviour change interventions. J Med Internet Res. 2015;17(1):e30.
doi: 10.2196/jmir.4055
pubmed: 25639757
pmcid: 4327440
Essery R, Pollet S, Smith K, Mowbray F, Slodkowska-Barabasz J, Denison-Day J, Hayter V, Bradbury K, Grey E, Western M, Milton A, Hunter C, Ferrey A, Müller A, Stuart B, Mutrie N, Griffin S, Kendrick T, Brooker H, Gudgin B, Phillips R, Stokes T, Niven J, Little P, Yardley L. Planning and optimising a digital intervention to protect older adults’ cognitive health. Pilot Feasibility Stud. 2021;7(158). https://doi.org/10.1186/s40814-021-00884-2 .
Band R, Bradbury K, Morton K, May C, Michie S, Mair F, Murray E, McManus R, Little P, Yardley L. Intervention planning for a digital intervention for self-management of hypertension: a theory-, evidence- and person-based approach. Implement Sci. 2017;12(25). https://doi.org/10.1186/s13012-017-0553-4 .
Page M, McKenzie J, Bossuyt P, Boutron I, Hoffmann T, Mulrow C, Shamseer L, Tetzlaff J, Akl E, Brennan S, Chou R, Glanville J, Grimshaw J, Hróbjartsson A, Lalu M, Li T, Loder E, Mayo-Wilson E, McDonald S, McGuinness L, Stewart L, Thomas J, Tricco A, Welch V, Whiting P. Moher, D. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. PLoS Med. 2021;18(3):e1003583.
doi: 10.1371/journal.pmed.1003583
pubmed: 33780438
pmcid: 8007028
Department of Health. Living well with dementia: a National Dementia Strategy. London: Department of Health; 2009.
Warren S, Fey M, Yoder P. Differential treatment intensity research: a missing link to creating optimally effective communication interventions. Ment Retard Dev Disabil Res Rev. 2007;13:70–7.
doi: 10.1002/mrdd.20139
pubmed: 17326112
Edemekong P, Bomgaars D, Sukumaran S, Schoo C. Activities of Daily Living. 2023 Jun 26. StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan–. PMID: 29261878.
Akintola A, Achterberg W, Caljouw M. Non-pharmacological interventions for improving quality of life of long-term care residents with dementia: a scoping review protocol. BMJ Open. 2019;9(12):e032661.
doi: 10.1136/bmjopen-2019-032661
pubmed: 31874881
pmcid: 7008431
Berg-Weger M, Stewart D. Non-pharmacologic interventions for persons with dementia. Mo Med. 2017;114(2):116–19.
pubmed: 30228557
pmcid: 6140014
Veld HIH, van Asch J, Willemse I, Verkade B, Pot P, Blom A, Groot Zwaaftink M, Francke R. Process evaluation of nurse-led online self-management support for family caregivers to deal with behaviour changes of a relative with dementia (part 1): mixed methods study. J Med Internet Res. 2019;21(10):e13002.
doi: 10.2196/13002
Veld HIH, Willemse J, van Asch B, Groot Zwaaftink I, Verkade R, Twisk P, Verkaik J, Blom R, van Meijel M, Francke B. Online self-management support for family caregivers dealing with behaviour changes in relatives with dementia (part 2): randomized controlled trial. J Med Internet Res. 2020;22(2):e13001.
doi: 10.2196/13001
Mays N, Roberts E, Popay J. Synthesising research evidence. In: Fulop N, Allen P, Clarke A, Black N, editors. Studying the Organization and Delivery of Health Services: Research methods. London: Routledge; 2001. pp. 188–220.
Aromataris E, Munn Z. Joanna Briggs Institute Manual for Evidence Synthesis; 2020. https://jbi-global-wiki.refined.site/space/MANUAL . Accessed 18 July 2024.
Skivington K, Matthews L, Simpson S, Craig P, Baird J, Blazeby J, Boyd K, Craig N, French D, McIntosh E, Petticrew M, Rycroft-Malone J, White M, Moore L. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ. 2021; 374: n2061.
Hong Q, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, Gagnon M-P, Griffiths F, Nicolau B, O’Cathain A, Rousseau M-C, Vedel I. Mixed-methods Appraisal Tool (MMAT) Version 2018. User Guide; 2018.
Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Serv Res Policy. 2005;10(1):6–20.
doi: 10.1258/1355819054308576
pubmed: 16053580
Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, Britten N, Roen K, Duffy S. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods Programme. 2006; https://doi.org/10.13140/2.1.1018.4643
van der Roest H, Meiland F, Jonker C, Dröes R-M. User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and usefulness. Aging Ment Health. 2010;14(4):461–70.
doi: 10.1080/13607860903311741
pubmed: 20455122
Van Mierlo L, Meiland F, Van de Ven P, Van Hout H, Dröes R. Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial. Int Psychogeriatr. 2015;27(8):1365–78.
doi: 10.1017/S1041610215000423
pubmed: 25872457
Barry H, Bedford L, McGrattan M, Ryan C, Passmore P, Robinson L, Molloy G, Darcy C, Buchanan H, Hughes C. Improving medicines management for people with dementia in primary care: a qualitative study of healthcare professionals to develop a theory-informed intervention. BMC Health Serv Res. 2020;20:120.
doi: 10.1186/s12913-020-4971-7
pubmed: 32059718
pmcid: 7023803
Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A, Rigaud A. A web-based psychoeducational program for informal caregivers of patients with Alzheimer’s disease: a pilot randomized controlled trial. J Med Internet Res. 2015;17(5):e117.
doi: 10.2196/jmir.3717
pubmed: 25967983
pmcid: 4468784
Gaugler J, Hobday J, Robbins J, Barclay M. CARES(
doi: 10.3928/00989134-20150804-61
pubmed: 26270065
pmcid: 5769472
Gies C, Pierce L. The Journey of web-based education for caregivers of persons with dementia: it didn’t happen overnight. Home Healthc Now. 2021;39(3):160–8.
doi: 10.1097/NHH.0000000000000960
pubmed: 33955930
Lewis M, Hobday J, Hepburn K. Internet-based program for Dementia caregivers. Am J Alzheimers Dis Other. 2010;25(8):674–9.
doi: 10.1177/1533317510385812
Metcalfe A, Jones B, Mayer J, Gage H, Oyebode J, Boucault S, Aloui S, Schwertel U, Böhm M, Tezenas du Montcel S, Lebbah S, De Mendonça A, De Vugt M, Graff C, Jansen S, Hergueta T, Dubois B, Kurz A. Online information and support for carers of people with young-onset dementia: a multi-site randomised controlled pilot study. Int J Geriatr Psychiatry. 2019;34(10):1455–64.
doi: 10.1002/gps.5154
pubmed: 31111516
Meyer C, Dow B, Hill K, Tinney J, Hill S. The right way at the right time: insights on the Uptake of Falls Prevention Strategies from people with Dementia and their caregivers. Front Public Health. 2016;4. https://doi.org/10.3389/fpubh.2016.00244 .
Yates L, Csipke E, Moniz-Cook E, Leung P, Walton H, Charlesworth G, Spector A, Hogervorst E, Mountain G, Orrell M. The development of the promoting independence in dementia (PRIDE) intervention to enhance independence in dementia. Clin Interv Aging. 2019;14:1615–30.
doi: 10.2147/CIA.S214367
pubmed: 31571842
pmcid: 6748161
Sbaffi L, Hargreaves S. The information trust formation process for informal caregivers of people with dementia: a qualitative study. J Doc. 2022;78(2):302–19. https://doi.org/10.1108/JD-01-2021-0014 .
doi: 10.1108/JD-01-2021-0014
Rowley J, Johnson F, Sbaffi L. Gender as an influencer of online health information seeking and evaluation behaviour. J Assoc Inf Sci Technol. 2017;68(1):36–47.
doi: 10.1002/asi.23597
Erdelez S, Tanacković S, Balog K. Online behaviour of the Alzheimer’s disease patient caregivers on Croatian online discussion forum. Proc Association Inform Sci Technol. 2019;56(1):78–88.
doi: 10.1002/pra2.8
Balog K, Tanacković S, Erdelez S. Information support system for Alzheimer’s disease patients’ caregivers in Croatia: a phenomenological approach. Inform Res. 2020;25(4). https://doi.org/10.47989/irisic2011 .
Peterson K, Hahn H, Lee A, Madison C, Atri A. In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences. BMC Geriatr. 2016;16(1):164. https://doi.org/10.1186/s12877-016-0338-7 .
doi: 10.1186/s12877-016-0338-7
pubmed: 27662829
pmcid: 5035467
Maneze D, Weaver R, Kovai V, Salamonson Y, Astorga C, Yogendran D, Everett B. Some say no, some say yes: receiving inconsistent or insufficient information from healthcare professionals and consequences for diabetes self-management: a qualitative study in patients with type 2 diabetes. Diabetes Res Clin Pract. 2019;156:107830. https://doi.org/10.1016/j.diabres.2019.107830 .
doi: 10.1016/j.diabres.2019.107830
pubmed: 31465812
Litzkendorf S, Frank M, Babac A, Rosenfeldt D, Schauer F, Hartz T, von der Graf JM. Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study. BMC Public Health. 2020;20:860.
doi: 10.1186/s12889-020-08926-9
pubmed: 32503483
pmcid: 7275578
Harrop E, Byrne A, Nelson A. It’s alright to ask for help: findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC Palliat Care. 2014;13:22.
doi: 10.1186/1472-684X-13-22
pubmed: 24742046
pmcid: 3997794
Hassan A, Bronzini M, Lamura G. Digital technologies as sources of information for patients and caregivers during COVID-19 pandemic: a cross-sectional survey. Digit Health. 2023;9. https://doi.org/10.1177/20552076231156214 .
Hoffmann T, Glasziou P, Boutron I, Milne R, Perera R, Moher D, Altman D, Barbour V, Macdonald H, Johnston M, Lamb S, Dixon-Woods M, McCulloch P, Wyatt J, Chan A-W, Michie S. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687. https://doi.org/10.1136/bmj.g1687 .
doi: 10.1136/bmj.g1687
pubmed: 24609605