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

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.

[1]  P. Griffiths,et al.  An Online Program for Caregivers of Persons Living With Dementia: Lessons Learned , 2019, Journal of applied gerontology : the official journal of the Southern Gerontological Society.

[2]  Elizabeth A. Carter,et al.  Helping Hispanic Dementia Caregivers Cope with Stress Using Technology-based Resources , 2018, Clinical gerontologist.

[3]  P. Griffiths,et al.  Tele-Savvy: An Online Program for Dementia Caregivers , 2018, American journal of Alzheimer's disease and other dementias.

[4]  F. Verhey,et al.  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 , 2017, Journal of medical Internet research.

[5]  M. V. van Boxtel,et al.  Development and feasibility of Inlife: A pilot study of an online social support intervention for informal caregivers of people with dementia , 2017, PloS one.

[6]  Candice M. Daniel,et al.  Supporting Caregivers of Rural Veterans Electronically (SCORE) , 2017, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[7]  J. Millán-Calenti,et al.  UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study , 2016, BioMed research international.

[8]  G. Andersson,et al.  Evaluating Digital Health Interventions: Key Questions and Approaches. , 2016, American journal of preventive medicine.

[9]  Carolyn M. Rutledge,et al.  An Interprofessional Virtual Healthcare Neighborhood: Effect on Self-Efficacy and Sleep Among Caregivers of Older Adults With Dementia. , 2016, Journal of gerontological nursing.

[10]  Afina W Lemstra,et al.  Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers , 2016, JMIR research protocols.

[11]  Stefan Kirn,et al.  Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal , 2016, JMIR research protocols.

[12]  F. Verhey,et al.  Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study , 2016, JMIR research protocols.

[13]  C. Nugent,et al.  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 , 2015, Journal of medical Internet research.

[14]  Steven A. Brown,et al.  Use of a multiparty web based videoconference support group for family caregivers: Innovative practice , 2015, Dementia.

[15]  Lena Griebel,et al.  Tailored e-Health services for the dementia care setting: a pilot study of ‘eHealthMonitor’ , 2015, BMC Medical Informatics and Decision Making.

[16]  Marike Hettinga,et al.  An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study , 2015, Front. Aging Neurosci..

[17]  Sunwoo Lee,et al.  Internet Use and Well-Being in Older Adults , 2015, Cyberpsychology Behav. Soc. Netw..

[18]  Anne-Sophie Rigaud,et al.  A Web-Based Psychoeducational Program for Informal Caregivers of Patients With Alzheimer’s Disease: A Pilot Randomized Controlled Trial , 2015, Journal of medical Internet research.

[19]  L. V. van Mierlo,et al.  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 , 2015, International Psychogeriatrics.

[20]  Pim Cuijpers,et al.  Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial , 2015, PloS one.

[21]  Anne Margriet Pot,et al.  Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia , 2015, International Psychogeriatrics.

[22]  Boyd H. Davis,et al.  E-mobile pilot for community-based dementia caregivers identifies desire for security , 2014 .

[23]  Mary-Frances O'Connor,et al.  Virtually supportive: a feasibility pilot study of an online support group for dementia caregivers in a 3D virtual environment. , 2014, Journal of aging studies.

[24]  Chris Barker,et al.  Effectiveness of computer-mediated interventions for informal carers of people with dementia—a systematic review , 2014, International Psychogeriatrics.

[25]  Ana Buján,et al.  UNDERSTAID: A PLATFORM THAT HELPS INFORMAL CAREGIVERS TO UNDERSTAND AND AID THEIR DEMENTED RELATIVES , 2014, Alzheimer's & Dementia.

[26]  Timothy Kwok,et al.  Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia , 2014, Clinical interventions in aging.

[27]  Dharma E. Cortés,et al.  Use of an Online Community to Provide Support to Caregivers of People With Dementia , 2014, Journal of gerontological social work.

[28]  F. Verhey,et al.  A systematic review of Internet‐based supportive interventions for caregivers of patients with dementia , 2014, International journal of geriatric psychiatry.

[29]  S. Iliffe,et al.  Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis , 2014, Palliative medicine.

[30]  Chris Barker,et al.  The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study , 2014, Journal of medical Internet research.

[31]  G. Livingston,et al.  Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial , 2013, BMJ.

[32]  L. Thompson,et al.  Exploring the effectiveness of an Internet-based program for reducing caregiver distress using the iCare Stress Management e-Training Program , 2013, Aging & mental health.

[33]  K. Lorig,et al.  Building Better Caregivers , 2012 .

[34]  R. Woods,et al.  Systematic review of services providing information and/or advice to people with dementia and/or their caregivers , 2012, International journal of geriatric psychiatry.

[35]  H. Tsai,et al.  Changes in Depressive Symptoms, Social Support, and Loneliness Over 1 Year After a Minimum 3-Month Videoconference Program for Older Nursing Home Residents , 2011, Journal of medical Internet research.

[36]  Elsa Marziali,et al.  Dementia Caregivers’ Responses to 2 Internet-Based Intervention Programs , 2011, American journal of Alzheimer's disease and other dementias.

[37]  K. Hepburn,et al.  Internet-Based Program for Dementia Caregivers , 2010, American journal of Alzheimer's disease and other dementias.

[38]  Rose-Marie Dröes,et al.  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 , 2010, Aging & mental health.

[39]  P. Davidson,et al.  Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective. , 2010, Nursing & health sciences.

[40]  Teresa M. L. Chiu,et al.  Internet-Based Caregiver Support for Chinese Canadians Taking Care of a Family Member with Alzheimer Disease and Related Dementia* , 2009, Canadian Journal on Aging / La Revue canadienne du vieillissement.

[41]  Ian Hughes,et al.  Internet Use and Loneliness in Older Adults , 2008, Cyberpsychology Behav. Soc. Netw..

[42]  John Powell,et al.  A systematic review of networked technologies supporting carers of people with dementia , 2008, Journal of telemedicine and telecare.

[43]  P. Weitzman,et al.  Designing a Culturally Attuned Bilingual Educational Website for US Latino Dementia Caregivers , 2008 .

[44]  C. Lyketsos,et al.  Systematic review of the effect of psychological interventions on family caregivers of people with dementia. , 2007, Journal of affective disorders.

[45]  Joy Adamson,et al.  Systematic review of information and support interventions for caregivers of people with dementia , 2007, BMC geriatrics.

[46]  Peter R. Harris,et al.  How do patients evaluate and make use of online health information? , 2007, Social science & medicine.

[47]  E. Marziali,et al.  Clinical Practice Standards and Ethical Issues Applied to a Virtual Group Intervention for Spousal Caregivers of People with Alzheimer's , 2007, Social work in health care.

[48]  J. Karlawish,et al.  Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? , 2006, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[49]  E. Marziali,et al.  Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers , 2006 .

[50]  Elsa Marziali,et al.  Caring for others: Internet video-conferencing group intervention for family caregivers of older adults with neurodegenerative disease. , 2006, The Gerontologist.

[51]  J. Seeley,et al.  Worksite-based internet multimedia program for family caregivers of persons with dementia. , 2005, The Gerontologist.

[52]  Elsa Marziali,et al.  Caring for Others: Internet Health Care Support Intervention for Family Caregivers of Persons with Alzheimer's, Stroke, or Parkinson's Disease , 2005 .

[53]  P. Cuijpers Depressive disorders in caregivers of dementia patients: A systematic review , 2005, Aging & mental health.

[54]  Henry Brodaty,et al.  Why caregivers of people with dementia and memory loss don't use services , 2005, International journal of geriatric psychiatry.

[55]  Chantal D. Caron,et al.  End-of-life decision making in dementia , 2005 .

[56]  Jeffrey S. Loomis,et al.  Online support and education for dementia caregivers: overview, utilization, and initial program evaluation. , 2004, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[57]  M. Nolan,et al.  ‘Making the best of things’: relatives' experiences of decisions about care-home entry , 2003, Ageing and Society.

[58]  I. Kneebone,et al.  Coping and caregivers of people with dementia. , 2003, British journal of health psychology.

[59]  J. Bernhardt,et al.  Health education and the digital divide: building bridges and filling chasms. , 2000, Health education research.

[60]  R. Schulz,et al.  Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. , 1999, The Gerontologist.

[61]  Patricia Flatley Brennan,et al.  The Buffering Effect of a Computer Support Network on Caregiver Strain , 1998, Journal of aging and health.

[62]  G. Maislin,et al.  Life‐Sustaining Treatment Decisions by Spouses of Patients with Alzheimer's Disease , 1996, Journal of the American Geriatrics Society.

[63]  S. Moore,et al.  The Effects of a Special Computer Network on Caregivers of Persons with Alzheimer's Disease , 1995, Nursing research.

[64]  Alexander Schwartz,et al.  Decision Analysis And Behavioral Research , 2016 .

[65]  D. Passey,et al.  Ageing and the use of the internet – current engagement and future needs:state-of-the-art report , 2011 .