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Cited by 246Dementia and Cognitive Impairment ResearchNursing care and researchDigital Mental Health Interventions

Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review

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Hopwood, Jenny, Walker, Nina, McDonagh, Lorraine, Rait, Greta, Walters, Kate, Iliffe, Stephen, Ross, Jamie, Davies, Nathan·2018·Journal of Medical Internet Research
DOI 10.2196/jmir.9548PMC PMC6019848

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Abstract

BACKGROUND: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. OBJECTIVE: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. METHODS: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. RESULTS: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. CONCLUSIONS: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

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  • Meta-analyses and reviews of Internet-based interventions for family caregivers of older adults have found evidence of improvements in mental health, particularly in relation to depression, stress, and anxiety.

    “Meta-analyses and reviews of Internet-based interventions for family caregivers of older adults have found evidence of improvements in mental health, particularly in relation to depression, stress, and anxiety.”

    From Supported Web-Based Acceptance and Commitment Therapy for Older Family Caregivers (CareACT) Compared to Usual Care. (2022) · cites this paper as Hopwood et al., 2018

    The Discussion (Principal Findings) says some multicomponent internet interventions showed promise in reducing stress, anxiety, and depressive symptoms. The review concerns family caregivers of people with dementia, however, not family caregivers of older adults generally; it also cautions that few studies were high-quality randomized trials. (LLM, conf=0.84)

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  • Technology-based interventions have been well received by caregivers.

    “This adds to the fact that technology-based interventions have been well received by caregivers (see, e.g., Boots, De Vugt, Van Knippenberg, Kempen, & Verhey, 2014;Guay et al., 2017;Hopwood et al., 2018;Sherifali et al., 2018;Sin et al., 2018).”

    From Supported Web-Based Acceptance and Commitment Therapy for Older Family Caregivers (CareACT) Compared to Usual Care. (2022) · cites this paper as Hopwood et al., 2018

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Research works printed but not linked: 51

  1. [1]Cuijpers P Depressive disorders in caregivers of dementia patients: a systematic review Aging Ment Health 2005 07 9 4 325 30 10.1080/13607860500090078 16019288 H77P0180460X0QGH 16019288 · DOI · Paper page
  2. [2]Kneebone II Martin PR Coping and caregivers of people with dementia Br J Health Psychol 2003 02 8 Pt 1 1 17 10.1348/135910703762879174 12643813 12643813 · DOI
  3. [3]Ory MG Hoffman RR Yee JL Tennstedt S Schulz R Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers Gerontologist 1999 04 39 2 177 85 10224714 10224714
  4. [8]Thompson CA Spilsbury K Hall J Birks Y Barnes C Adamson J Systematic review of information and support interventions for caregivers of people with dementia BMC Geriatr 2007 7 18 10.1186/1471-2318-7-18 17662119 1471-2318-7-18 17662119 PMC1951962 · DOI · Paper page
  5. [11]Brodaty H Thomson C Thompson C Fine M Why caregivers of people with dementia and memory loss don't use services Int J Geriatr Psychiatry 2005 06 20 6 537 46 10.1002/gps.1322 15920707 15920707 · DOI
  6. [12]Serafini JD Damianakis T Marziali E Clinical practice standards and ethical issues applied to a virtual group intervention for spousal caregivers of people with Alzheimer's Soc Work Health Care 2007 44 3 225 43 10.1300/J010v44n03_07 17548277 17548277 · DOI
  7. [13]Heo J Chun S Lee S Lee KH Kim J Internet use and well-being in older adults Cyberpsychol Behav Soc Netw 2015 05 18 5 268 72 10.1089/cyber.2014.0549 25919967 25919967 · DOI
  8. [16]McKechnie V Barker C Stott J Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review Int Psychogeriatr 2014 10 26 10 1619 37 10.1017/S1041610214001045 24989249 S1041610214001045 24989249 PMC4154479 · DOI
  9. [17]Powell J Chiu T Eysenbach G A systematic review of networked technologies supporting carers of people with dementia J Telemed Telecare 2008 14 3 154 6 10.1258/jtt.2008.003018 18430288 18430288 · DOI · Paper page
  10. [22]Bass DM McClendon MJ Brennan PF McCarthy C The buffering effect of a computer support network on caregiver strain J Aging Health 1998 02 10 1 20 43 10.1177/089826439801000102 10182416 10182416 · DOI · Paper page
  11. [23]Beauchamp N Irvine AB Seeley J Johnson B Worksite-based internet multimedia program for family caregivers of persons with dementia Gerontologist 2005 12 45 6 793 801 16326661 45/6/793 16326661
  12. [25]Fowler CN Kott K Wicks MN Rutledge C An interprofessional virtual healthcare neighborhood: effect on self-efficacy and sleep among caregivers of older adults with dementia J Gerontol Nurs 2016 11 01 42 11 39 47 10.3928/00989134-20160901-02 27598270 27598270 · DOI
  13. [26]Hattink B Meiland F van der Roest H Kevern P Abiuso F Bengtsson J Giuliano A Duca A Sanders J Basnett F Nugent C Kingston P Dröes R Web-based STAR e-learning course increases empathy and understanding in dementia caregivers: results from a randomized controlled trial in the Netherlands and the United Kingdom J Med Internet Res 2015 17 10 e241 10.2196/jmir.4025 26519106 v17i10e241 26519106 PMC4642792 · DOI
  14. [27]Hicken BL Daniel C Luptak M Grant M Kilian S Rupper RW Supporting Caregivers of Rural Veterans Electronically (SCORE) J Rural Health 2017 06 33 3 305 313 10.1111/jrh.12195 27437642 27437642 · DOI
  15. [28]Kajiyama B Thompson LW Eto-Iwase T Yamashita M Di Mario J Marian TY Gallagher-Thompson D Exploring the effectiveness of an internet-based program for reducing caregiver distress using the iCare Stress Management e-Training Program Aging Ment Health 2013 17 5 544 54 10.1080/13607863.2013.775641 23461355 23461355 PMC3695021 · DOI
  16. [30]Van Mierlo LD Meiland FJM Van de Ven PM Van Hout HPJ 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 08 27 8 1365 78 10.1017/S1041610215000423 25872457 S1041610215000423 25872457 · DOI
  17. [31]Davis B Shehab M Shenk D Nies M E-mobile pilot for community-based dementia caregivers identifies desire for security Gerontechnology 2015 13 3 332 6 10.4017/gt.2015.13.3.003.00 · DOI
  18. [32]Glueckauf RL Ketterson TU Loomis JS Dages P Online support and education for dementia caregivers: overview, utilization, and initial program evaluation Telemed J E Health 2004 10 2 223 32 15319052 15319052
  19. [33]Griffiths PC Kovaleva M Higgins M Langston AH Hepburn K Tele-Savvy: an online program for dementia caregivers Am J Alzheimers Dis Other Demen 2018 01 01 1533317518755331 10.1177/1533317518755331 29544342 PMC10852441 29544342 · DOI
  20. [34]Kajiyama B Fernandez G Carter EA Humber MB Thompson LW Helping Hispanic dementia caregivers cope with stress using technology-based resources Clin Gerontol 2018 41 3 209 216 10.1080/07317115.2017.1377797 29236621 29236621 · DOI
  21. [35]Kwok T Au A Wong B Ip I Mak V Ho F Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia Clin Interv Aging 2014 9 631 6 10.2147/CIA.S56337 10.2147/CIA.S56337 24748781 cia-9-631 24748781 PMC3990366 · DOI
  22. [36]Lorig K Thompson-Gallagher D Traylor L Ritter P Laurent D Plant K Building better caregivers: a pilot online support workshop for family caregivers of cognitively impaired adults J Appl Gerontol 2013 31 3 423 437 10.1177/0733464810389806 · DOI
  23. [37]van der Roest HG Meiland FJM Jonker C Dröes R 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 05 14 4 461 70 10.1080/13607860903311741 20455122 921990183 20455122 · DOI
  24. [38]Kovaleva M Blevins L Griffiths PC Hepburn K An online program for caregivers of persons living with dementia: lessons learned J Appl Gerontol 2017 04 01 733464817705958 10.1177/0733464817705958 28460557 28460557 · DOI
  25. [39]Marziali E Donahue P Crossin G Caring for others: internet health care support intervention for family caregivers of persons with Alzheimer’s, stroke, or Parkinson’s disease Fam Soc 2018 05 03 86 3 375 383 10.1606/1044-3894.3435 · DOI
  26. [41]Span M Smits C Jukema J Groen-van de Ven L Janssen R Vernooij-Dassen M Eefsting J Hettinga M An interactive web tool for facilitating shared decision-making in dementia-care networks: a field study Front Aging Neurosci 2015 7 128 10.3389/fnagi.2015.00128 10.3389/fnagi.2015.00128 26217221 26217221 PMC4493386 · DOI
  27. [42]Austrom MG Geros KN Hemmerlein K McGuire SM Gao S Brown SA Callahan CM Clark DO Use of a multiparty web based videoconference support group for family caregivers: innovative practice Dementia (London) 2015 09 14 5 682 90 10.1177/1471301214544338 25062788 1471301214544338 25062788 PMC4305486 · DOI · Paper page
  28. [43]Boots LM de Vugt ME Smeets CM Kempen GI Verhey FR Implementation of the blended care self-management program for caregivers of people with early-stage dementia (Partner in Balance): process evaluation of a randomized controlled trial J Med Internet Res 2017 12 19 19 12 e423 10.2196/jmir.7666 29258980 v19i12e423 29258980 PMC5750419 · DOI · Paper page
  29. [44]Boots LM de Vugt ME Withagen HE Kempen GI Verhey FR Development and initial evaluation of the internet-based self-management intervention ‘Partner in Balance’ for spousal caregivers of people with early-stage dementia JMIR Res Protoc 2016 03 01 5 1 e33 10.2196/resprot.5142 26932438 v5i1e33 26932438 PMC4795319 · DOI · Paper page
  30. [45]Brennan PF Moore SM Smyth KA The effects of a special computer network on caregivers of persons with Alzheimer's disease Nurs Res 1995 44 3 166 72 7761293 7761293
  31. [47]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 10.2196/jmir.3717 25967983 v17i5e117 25967983 PMC4468784 · DOI · Paper page
  32. [48]Dam AEH van Boxtel MPJ Rozendaal N Verhey FRJ de Vugt ME Development and feasibility of Inlife: a pilot study of an online social support intervention for informal caregivers of people with dementia PLoS One 2017 12 9 e0183386 10.1371/journal.pone.0183386 28886056 PONE-D-16-50500 28886056 PMC5590823 · DOI · Paper page
  33. [49]Hattink B Droes R Sikkes S Oostra E Lemstra AW Evaluation of the Digital Alzheimer Center: testing usability and usefulness of an online portal for patients with dementia and their carers JMIR Res Protoc 2016 07 21 5 3 e144 10.2196/resprot.5040 27444209 v5i3e144 27444209 PMC4974452 · DOI
  34. [54]McKechnie V Barker C Stott J The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study J Med Internet Res 2014 16 2 e68 10.2196/jmir.3166 24583789 v16i2e68 24583789 PMC3961748 · DOI
  35. [55]O'Connor M Arizmendi BJ Kaszniak AW Virtually supportive: a feasibility pilot study of an online support group for dementia caregivers in a 3D virtual environment J Aging Stud 2014 08 30 87 93 10.1016/j.jaging.2014.03.001 24984911 S0890-4065(14)00023-1 24984911 PMC4668714 · DOI
  36. [56]Pagán-Ortiz ME Cortés DE Rudloff N Weitzman P Levkoff S Use of an online community to provide support to caregivers of people with dementia J Gerontol Soc Work 2014 57 6-7 694 709 10.1080/01634372.2014.901998 24689359 24689359 PMC4127129 · DOI
  37. [57]Pot AM Blom MM Willemse BM Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia Int Psychogeriatr 2015 08 27 8 1343 54 10.1017/S1041610215000034 25648589 S1041610215000034 25648589 · DOI
  38. [58]Rentz M Von Hoene A Online coaching for caregivers: using technology to provide support and information Alzheimer's Care Today 2010 11 3 206 9 10.1097/ACQ.0b013e3181ebc878 · DOI
  39. [59]Schaller S Marinova-Schmidt V Gobin J Criegee-Rieck M Griebel L Engel S Stein V Graessel E Kolominsky-Rabas PL Tailored e-Health services for the dementia care setting: a pilot study of 'eHealthMonitor' BMC Med Inform Decis Mak 2015 07 28 15 58 10.1186/s12911-015-0182-2 26215731 10.1186/s12911-015-0182-2 26215731 PMC4517387 · DOI
  40. [60]Schaller S Marinova-Schmidt V Setzer M Kondylakis H Griebel L Sedlmayr M Graessel E Maler JM Kirn S Kolominsky-Rabas PL Usefulness of a tailored ehealth service for informal caregivers and professionals in the dementia treatment and care setting: the eHealthMonitor Dementia Portal JMIR Res Protoc 2016 04 05 5 2 e47 10.2196/resprot.4354 27050401 v5i2e47 27050401 PMC4822652 · DOI
  41. [61]Weitzman P Neal L Chen H Levkoff SE Designing a culturally attuned bilingual educational website for US Latino dementia caregivers Ageing Int 2008 2 28 32 1 15 24 10.1007/s12126-008-9000-9 · DOI
  42. [62]von Winterfeldt D Edwards W Decision Analysis and Behavioral Research 1986 Cambridge, UK Cambridge University Press
  43. [65]Chang E Easterbrook S Hancock K Johnson A Davidson P Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective Nurs Health Sci 2010 03 12 1 45 51 10.1111/j.1442-2018.2009.00486.x 20487325 NHS486 20487325 · DOI
  44. [66]Davies N Maio L Rait G Iliffe S Quality end-of-life care for dementia: what have family carers told us so far? A narrative synthesis Palliat Med 2014 07 28 7 919 930 10.1177/0269216314526766 24625567 0269216314526766 24625567 PMC4232347 · DOI
  45. [67]Hirschman KB Kapo JM Karlawish JHT Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006 08 14 8 659 67 10.1097/01.JGP.0000203179.94036.69 16861370 S1064-7481(12)60567-3 16861370 · DOI
  46. [68]Caron CD Griffith J Arcand M End-of-life decision making in dementia Dementia 2016 07 26 4 1 113 136 10.1177/1471301205049193 · DOI
  47. [69]Mezey M Kluger M Maislin G Mittelman M Life-sustaining treatment decisions by spouses of patients with Alzheimer's disease J Am Geriatr Soc 1996 02 44 2 144 50 8576503 8576503
  48. [70]Davies S Nolan M ‘Making the best of things’: relatives' experiences of decisions about care-home entry Ageing Soc 2003 6 25 23 04 429 450 10.1017/S0144686X03001259 · DOI
  49. [71]Sillence E Briggs P Harris PR Fishwick L How do patients evaluate and make use of online health information? Soc Sci Med 2007 05 64 9 1853 62 10.1016/j.socscimed.2007.01.012 17328998 S0277-9536(07)00016-0 17328998 · DOI
  50. [72]Murray E Hekler EB Andersson G Collins LM Doherty A Hollis C Rivera DE West R Wyatt JC Evaluating digital health interventions: key questions and approaches Am J Prev Med 2016 11 51 5 843 851 10.1016/j.amepre.2016.06.008 27745684 S0749-3797(16)30229-X 27745684 PMC5324832 · DOI · Paper page
  51. [73]Bernhardt JM Health education and the digital divide: building bridges and filling chasms Health Educ Res 2000 10 15 5 527 31 11184212 11184212

Cited by

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Authors
Hopwood, J., Walker, N., McDonagh, L., Rait, G., Walters, K., Iliffe, S., Ross, J., & Davies, N.
Affiliations
University College London (GB)
Corresponding author
Davies, Nathan
ORCID
Venue
Journal of Medical Internet Research
Publisher
JMIR Publications Inc.
Published
2018-06-12
Volume
20
Issue
6
Pages
e216
ISSN
1438-8871 (ISSN-L)
DOI
10.2196/jmir.9548
PMC
PMC6019848
OpenAlex
W2802388965
Cited by
246
References
13
Citations by year
2026: 22 · 2025: 28 · 2024: 33 · 2023: 27 · 2022: 34 · 2021: 39 · 2020: 36 · 2019: 25 · 2018: 2
FWCI
3.88
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Journal of Medical Internet Research (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • UCL Discovery (University College London) (submittedVersion)
Funders
  • National Institute for Health and Care Research (SPCR-086, RP-PG-1016-20001)
  • Marie Curie (MCCC-FCO-11-U)
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Social Sciences › Psychology › Applied Psychology › Digital Mental Health Interventions
Keywords
online intervention, family caregivers, dementia, caregiver burden, caregiver mental health, psychological support, peer support, online information provision, decision support, caregiver well-being, intervention components
MeSH terms
Dementia, Humans, Social Support, Randomized Controlled Trials as Topic, Caregivers, Internet

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