Table 2 Acceptability, feasibility and effectiveness of interventions in improving outcomes in high quality studies
Reference, Country Design | Sample size; Consent rate, Setting | Eligibility Inclusion/exclusion criteria | Intervention and control characteristics | Outcomes and data collection time points | Results of the study | Acceptability, engagement and utilisation of intervention |
|---|---|---|---|---|---|---|
Telephone counselling | ||||||
 Au, Alma 2015 [36] China RCT | Sample: 96 Consent: 81% Setting: Two hospitals | Inclusion criteria: ≥25 yrs.; carer of diagnosed Alzheimer’s Disease for ≥3mths; primary carer and spouse, kin/sibling Exclusion: intellectual deficit; suicidal ideation; psychotic disorder; not fluent in Chinese/Cantonese | Intervention: Telephone based intervention: behavioural activation (8 bi-weekly calls) Delivered by: Trained volunteers Control group: Telephone-based intervention: psychoeducation and communication (8 calls) | Primary: Depression (CES-D) Secondary: Use of emotional regulation strategies Follow-up: 1 and 5 months | Significantly decreased levels of depressive symptoms in intervention group Increased use of emotional regulation strategies in intervention group | NR |
 Au et al. 2014 [37] China RCT | Sample: 60 Consent: 92% Setting: One hospital | Inclusion criteria: ≥25 yrs.; primary full time carer for ≥6mths; spouse or daughter/son Exclusion: intellectual deficit; suicidal ideation; psychotic disorder; not fluent in Chinese/Cantonese | Intervention: Telephone assisted intervention: pleasant event scheduling Control group: Standard care from psychogeriatric team | Primary: Depression (CES-D) Secondary: Self-efficacy (Revised scale for care-giving self-efficacy) Follow-up: 1 and 2 months | Significantly decreased levels of depressive symptoms in intervention group No difference in self-efficacy between the groups Limitations: small sample size; significantly higher baseline depression scores in intervention | NR |
 Chang et al. 1999 [44] RCT USA | Sample: recruited: 102; analysed: 83 Consent rate: NR Setting: Community, Alzheimer’s Association | Inclusion criteria: spoke English; access to VCR & phone; lived with dementia sufferer who had problems eating and dressing Exclusion: NR. | Intervention: Video and telephone-based: video (20 mins); telephone interviews; problem-solving (bi-weekly for 12 wks) Delivered by: Gerontological clinical nurse specialists Control group: attention only: calls made but based on general discussion only | Primary: Burden, satisfaction, anxiety, depression Follow-up: 3 mths | Lower depression in intervention than in control group Decrease in anxiety, and emotion-focused coping strategies over time in both groups No difference in burden between the groups | Viewed tapes once or twice 5–90 min calls for intervention; 5–30 min for control Satisfied with calls |
 Connell & Janevic 2009 [45] RCT USA | Sample: recruited: 157; analysed @ 6mth: 137; analysed @ 12mth: 130. Consent rate: 47% Setting: Alzheimer’s DRC & Association | Inclusion criteria: primary caregiver for a spouse with dementia; living with spouse at home; interest in increasing physical activity. Exclusion: NR. | Type: Telephone-based (weekly for 2mths; bi-weekly for 2mths; monthly for 2mths): goal-setting; counsellor feedback; self-monitoring Delivered by: behaviour-change counsellors Control group: no materials provided during intervention period | Primary: Self-rated physical health; Physical function (MOS SF General Health Survey); caregiver burden (RMBCP); Exercise time; Exercise self-efficacy; Self-efficacy; depressive symptoms (CES-D). Follow-up: 6 and 12 months | At 6 mths follow-up, intervention reported reduced perceived stress At both 6 & 12 mths follow-up intervention reported reported greater exercise self-efficacy | Calls at participant convenience 16% loss to follow-up Acceptability NR |
 Davis et al. 2011 [35] RCT USA | Sample: recruited: 53; analysis: 46 Consent rate: Setting: nursing home | Inclusion criteria: ≥18 yrs.; care recipient in NH in ≤2 mths; caregiver; ≥4 h /day caring in 6 mths; Exclusion: | Intervention: One initial care, with 7 weekly follow-up calls, and 2 biweekly termination calls over the third month Delivered by: Master’s level therapist Control: usual care | Primary: Guilt; depression (CES-D); burden (ZBI), hassles with NH staff (Nursing Home Hassles Scale); satisfaction (ODAFSI); Follow-up: 3 months | Intervention participants reported greater reduction in feelings of guilt, and fewer problems and concerns with NH care. No benefit of intervention for depression or burden. | Attrition 13% Highly satisfied with service and treatment, would use again |
 Glueckauf et al. 2007 [41] RCT USA | Sample: recruited: 36; analysed: 14 Consent rate: NR Setting: Rural area of Florida | Inclusion criteria: ≥6 h p/wk. caring for ≥6mths; short term problems amenable to a short-term intervention; no difficulties hearing over phone; CR has ≥1 limitation in basic activities of daily living; 2 dependencies in instrumental activities associated with daily living Exclusion: CG terminal illness; CR life expectancy <6mths; severe illness other than dementia; psychological problems | Intervention: Phone CBT: 5 x weekly individual session; 7 x weekly group session; goal-setting; self-monitoring Delivered by: trained doctoral or master’s-level counsellor Control group: Written education material and toll-free telephone line if needed | Primary: Subjective burden (CAI) Secondary: Caregiving self-efficacy (CSES); depression (CES-D); problem change measures (ISS; IFS; ICS); Treatment satisfaction (CSQ-8) Follow-up: 3 mths | No sig differences between the groups in burden; trends towards improvements in both groups Intervention group reported trend towards reduced depressive symptoms | Guide and training Moderate to high satisfaction |
 Martindale-Adams et al. 2013 [39] RCT USA | Sample: recruited and analysed: 154 Consent rate: 70% Setting: VA hospital | Inclusion criteria: Family members reporting stress or difficulty with care; living with care recipient; ≥4 h care or supervision per day for ≥6mths; care recipient has dementia or MMSE ≤ 23; ≥1 ADL or 2 IADL limitations; ≥1 member of dyad as veteran services from VAMC Exclusion: Planned nursing home admission ≤6mths | Intervention: Telephone-based (bi-weekly for 2mth; monthly thereafter for 1 yr): support groups; education; skills building; caregiver notebook Delivered by: master’s-prepared group leaders Control group: Pamphlets and phone numbers of local resources | Primary: Social support (items re. received support, satisfaction, social networks) Secondary: Health (SF-36); self-care (REACHII questions); Burden (Zarit); depression (CES-D); general well-being (General Well-Being Scale) Bother (RMBPC). Follow-up: 6 and 12 mths | No significant benefit of the intervention on any outcome | 61% completed ¾ sessions, 77% half sessions and 8% < 3 sessions Intervention helpful Valued different perspectives, support and interaction |
 Tremont et al. 2008 [32] RCT USA | Sample: recruited: 60; analysed: 33 Consent rate: NR Setting: Southern New England region of USA | Inclusion criteria: carer: ≥21 years; lived with relative with Dementia; ≥4 h p/day care ≥6mths; care recipient: formal Dementia diagnosis; CDR 1 or 2; ≥50 yrs. Exclusion criteria: Carer had psychiatric illness or cognitive impairment | Intervention: telephone-based: 23 calls across 1 yr.; therapist contact; individualised Delivered by: Master’s level therapist Control group: Usual care | Primary: Depression (GDS); Caregiver burden (ZBI); Reaction to memory and behaviour problems (RMBPC). Secondary: Alzheimer’s Disease Knowledge Test; SF36 General Health; Family Assessment Device; Multidimensional Scale of Perceived Social Support. Follow-up: 1 yr | Intervention group reported significantly lower burden scores Intervention group reported less severe reactions to memory and behaviour problems. | Satisfied with service (94%); met needs (77%); recommend to friend (88%); satisfied with therapist skills (100%); convenience (94%), written materials (88%), and clear (94%); overall (94%). Calls <30 min |
 Tremont et al. 2015 [46] RCT USA | Sample: recruited: 250; analysed: 212 Consent rate: 84% Setting: hospital and community based | Inclusion criteria: carer: ≥2 negative caring experiences; Care recipient: formal Dementia diagnosis; living in community; no planned placement in care in next 6mths. Exclusion criteria: Carer: major acute illness; not English speaking; cognitive impairment; care ≥6mth for ≥4 h supervision p/day; no telephone access | Family Intervention: Telephone Tracking—Caregiver (FITT-C): 16 calls across 6mths; psycho-education; self-assessment + summary letter Delivered by: Master’s level therapist Intervention 2: Telephone-based: 16 calls, non-directive support via active listening and open questions Delivered by: Master’s level therapist | Primary: Depression (GDS); Caregiver burden (Zarit); Reaction to memory and behaviour problems (RMBPC). Secondary: Family Assessment Device (FAD); Self-efficacy (SEQ); positive aspects of caring (PAC); Health related QoL (Euro-QoL). Follow-up: 6 mths | Intervention group reported significantly improved caregiver depressive symptoms and significantly reduced reactions to care-recipient depressive behaviours. | Intervention perceived program more logical and likely to reduce burden than control Both groups satisfied Average 1.81 missed calls for intervention and 1.22 for control Average call: 37 mins intervention; 30 mins for control |
 Van Mierlo et al. 2012 [38] CBA The Netherlands | Sample: recruited: 54 Consent rate: NR Setting: Amersfoort-Leusden, Utrecht, Amsterdam, and Laren and Huizen | Inclusion criteria: Informal caregivers of people with Dementia living at home Exclusion criteria: NR | Intervention 1: telephone-based coaching only: 10 × 30 min call every 2-3wks; coaching Delivered by: health professional trained coaches Intervention 2: telephone-based coaching with respite care: 10 × 30 min call every 2-3wks; coaching; (no description of respite given) Delivered by: health professional trained coaches Control group: Respite care only | Primary: Burden (SSCQ); mental health problems (GHQ-28) Follow-up: 20 wks | Telephone plus respite participants reported significantly less burden than telephone-only participants. Telephone plus respite participants reported significantly fewer mental health problems than control. | Caregivers valued the telephone intervention and were generally satisfied with it. Coaches participated in an average of 7.6 sessions with caregivers |
 Wilz et al. 2011 [42] RCT Germany | Sample: recruited: 229; analysed: 172 Consent rate: 88% Setting: Berlin/Brandenburg and Thuringia | Inclusion criteria: full time carer; care recipient diagnosis of dementia; GDS score > 3 Exclusion criteria: Simultaneous psychotherapy; cognitive impairment; severe acute mental/physical condition; care recipient cared for in day care >3 days p/wk | Intervention: telephone-based: 7 x session 3 mths; CBT; structured with some flexibility for individualisation Delivered by: CBT-trained clinical therapists Control group 1: Progressive Muscle Relaxation in same conditions as experimental gp; written material & CD for PMR Delivered by: PMR psychologists Control group 2: untreated | Primary: Goal attainment (GAS) Secondary: None Follow-up: 6mths | Overall: 30.1% (N = 25) of the participants achieved complete goal attainment, 39.8% (N = 33) reached partial attainment, and 24.1% (N = 20) declared no change Participant goals mostly matched intervention strategies | 2/3 both groups program very good; 1/3 good. 7 sessions not enough; control felt it was enough or too much 81% very helpful 72% felt expectations fulfilled Significant difference between intervention and treated control in duration of sessions |
 Wilz & Soellner 2015 [43] RCT Germany | Sample: recruited: 229; T1: 191; T2: 182 Consent rate: 94% Setting: Berlin/Brandenburg and Thuringia | Inclusion criteria: full time carer; care recipient diagnosis of Alzheimer’s disease; GDS score > 3 Exclusion criteria: Simultaneous psychotherapy; cognitive impairment; severe acute mental/physical condition; care recipient cared for in day care >3 days p/wk | Intervention: telephone-based: 7 × 60 min session; CBT; multi-component; individualised Delivered by: CBT-trained clinical therapists Control group 1: attention control: telephone-based Progressive Muscle Relaxation Delivered by: PMR psychologists Control group 2: untreated control | Primary: Perceived body complaints (GBB-24); emotional wellbeing & perceived health status (VAS) Secondary: None Follow-up: 3 & 6 mths | T1: Significantly higher perceived health status in CBT group compared to untreated. Significant increase in depressive symptoms in PMR group compared to CBT group T2: Significant improvements in emotional wellbeing and body complaints in CBT group CBT group improved in emotional wellbeing whereas PMR group decreased in emotional wellbeing Exhaustion significantly decreased in CBT group whereas increased in untreated control | Very good (71.9%) and good (27%) 90.9% recommend to others 81% very helpful 71.8% completely fulfilled expectations Except for dropouts, all in intervention group completed all 7 sessions No interruptions in treatment: 85.5%; control: 79.4% |
Telephone support group | ||||||
 Goodman and Pynoos 1990 [40] RCT USA | Sample: recruited: 81; analysed: 66 Consent rate: NR Setting: Community | Inclusion criteria: NR Exclusion: NR | Intervention: Telephone-based: peer telephone networks; 4–5 caregivers in each network; members of network called one another rotating across 12 week period Delivered by: peers Control group: lecture: 12 x telephone access lectures about Alzheimer’s disease | Primary: Problems (Memory & Behaviour Problem Checklist); Burden (Burden Interview Caregiver Elder Relationship Scale); mental health (scale by Rand Institute); social support (network measure adapted from Vaux & Harrison; perceived social support caregiving); knowledge Secondary: NR Follow-up: 3 mths | Intervention participants reported significantly higher perceived social support and information gains. Trends towards improved satisfaction with caregiving among intervention participants. | Bi-monthly follow-up calls Acceptability and utilisation NR |
 Winter & Gitlin 2006 [33] RCT USA | Sample: recruited: 103 Consent rate: NR Setting: NR | Inclusion criteria: female; ≥50 yrs.; ≥6mths care to relative with diagnosis of ADRD; weekly telephone access ≥ 1 h Exclusion criteria: NR | Intervention: telephone-support groups: hourly weekly session with 1 x facilitator 5 x caregiver; problem-solving; education Delivered by: Trained social workers Control: usual care | Primary: Caregiver depression (CES-D); burden (ZBI); perceived personal gain (Gain Through Group Involvement Scale). Secondary: None Follow-up: 6 mths | No significant difference on outcomes between the groups | Attendance not associated depression, burden or gains Wives, older and African Americans participated in more sessions. Average of 14.8/26 sessions in 6mth. |
 Wray et al. 2010 [34] RCT USA | Sample: recruited: 158 Consent rate: 33% Setting: New York Veteran Affairs Network | Inclusion criteria: caregiver: primary caregiver; lived with veteran ≥1 yr.; caregiver strain index ≥7. Care recipient: lived in own home; dementia diagnosis; spouse/partner living with them ≥1 yr.; GDS ≥ 3or dependent on ≥1 activity of daily living & ≥ 3 instrumental ADLs, Exclusion criteria: caregiver participating in other support group; caregivers not spouses | Intervention: telephone-based: ≥8 caregivers during 10 weekly sessions; no video conferencing; homework; education; coping; group support Delivered by: Three master’s-prepared social workers and one nurse dementia care manager Control: usual care | Primary: Healthcare cost (inpatient; outpatient; nursing home; pharmacy costs) and utilisation (total bed days of care; total admissions; total visits) Secondary: None Follow-up: 6 & 12 mths | Total health care costs significantly lower in intervention group compared to control group at 6 mths, but not at 12 mths. No significant interactions in utilisation over time. | NR |
Computer-based | ||||||
 Beauchamp et al. 2005 [23] RCT USA | Sample: 299 Consent: NR Setting: Online | Inclusion criteria: ≥part time employment; ≥4 contacts a mth caring for a family member with memory problems; reports of stress from caregiving Exclusion: NR | Intervention Web-based: text; videos; links to tailored content; modules (available for 30 days) Knowledge, behavioural and cognitive-based skills Control group: Waitlist control | Primary: Depression(CES-D), anxiety (STAI), caregiver strain (Caregiver Strain Scale); stress Secondary: Self-efficacy (6 questions); coping skills (Revised Ways of Coping) Follow-up: 1 month | Intervention group reported significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy, and intention to seek help, as well as perceptions of positive aspects of caregiving. Those who viewed the program more had greatest benefit | 59% used once, 19% twice, 11% 3 times, 11$ 4+ times; 32 mins average; dose-response relationship Email reminder to non-users Acceptability survey |
 Blom et al. 2015 RCT [28] Netherlands | Sample: recruited: 245; analysed: 175 Consent rate: NR Setting: Online | Inclusion criteria: family caregivers; some symptoms of depression / anxiety / feelings of burden (CES-D > 4 or HADS-A > 3 or a burden score of at least 6 on a scale ranging from 0 to 10). Exclusion: NR. | Intervention Web-based: lessons, coaching, feedback, homework, text, videos, exercises Coaching component delivered by: psychologist trained in CBT Control group: Digital newsletters: information only; no coaching contact | Primary: Depression(CES-D) Secondary: Anxiety (HADS) Additional: Functional status of dementia patient (IQCODE); Perceptions of distress (Self-perceived pressure from informal care); Caregivers distress (RMBPC); Competence (SSCQ); Sense of mastery (Abb Pearlin Mastery Scale) Follow-up: 3 and 6 months | Significantly lower depression and anxiety in intervention group compared to control group | Higher drop out in intervention arm (40% vs 11%) Engagement and acceptability NR |
 Brennan et al. 1995 [27] RCT USA | Sample: recruited: 102; analysed: 96 Consent NR Setting: Online | Inclusion criteria: primary family caregiver for person with Alzheimer’s disease at home; local telephone exchange; read and write English Exclusion: NR. | Intervention Web-based: questions to guide decision-making; public and private peer communication Control group: placebo training identifying local services and resources | Primary: Decision-making confidence (modified decision confidence scale); decision-making skill (investigator-developed self-report) Secondary: Social Support (IESS); Burden (Impact of caregiving scale); Depression (CES-D); contact with services Follow-up: 1 year | Enhanced decision-making confidence in intervention group Decision-making skill unaffected | Training, monthly phone calls on use Mean access 83 times 13 mins average use Communication component used most |
 Cristancho-Lacroix et al. 2015 [30] Pilot RCT France | Sample: 49 Consent rate: 55% Setting: Day care center geriatric unit | Inclusion criteria: ≥18 yrs.; French speaking; caregiver for community-dwelling person with Alzheimer’s; met criteria for DSM of mental disorders; ≥4 h with relative; ≥12 PSS-14; internet access. Exclusion: Professional caregivers | Intervention: web-based; thematic sessions; weekly release of sessions; text; video Control group: usual care | Primary: Perceived stress of caregivers (PSS-14) Secondary: Self-efficacy (RSCS); Perception and reaction to symptoms (RMBCP); Subjective burden (ZBI); Depression (BDI-II); Self-perceived health (NHP) Follow-up: 3 and 6 months | No effect on self-perceived stress 3mths, however the intervention improved knowledge of illness | Training and user manual provided 71% finished protocol Use average 19.7 times; for 262 min Useful, clear and comprehensive |
 Lai et al. 2013 [22] Pilot RCT China | Sample: recruited: 11; analysed: 11 Consent rate: NR Setting: Online and offline (no indication of place of recruitment) | Inclusion criteria: primary caregiver; read and write Chinese Exclusion: Domestic helper; already using online support group; caring for others; care recipient requires total care | Intervention: Web-based: training workshops; forum Control group: Onsite workshop delivered by social workers or nurses | Primary: Depression (CES-D) Secondary: General Health (GHQ-30); Alzheimer’s Disease Knowledge; Caregiver burden (ZBI); QoL (WHO QoL Measure – Brief) Follow-up: 7 wks | Intervention participants reported greater knowledge gained Control group participants anxiety and depression dropped significantly after the workshop | Utilisation, engagement not reported Convenient |
 Nunez-Naveira et al. 2016 [31] RCT Spain | Sample: 77 recruited, 61 analysed Consent rate: NR Setting: Non-profit organisations, geriatric clinic | Inclusion: primary carer of someone with GDS 4 or more; basic care tasks for a minimum of 6 weeks, no remuneration ZBI score above 24 Exclusion criteria cognitive impairment, illiterate, severe hearing, visual, motor problems | Intervention Learning section with information on 15 topics; Daily Task and Social Networking. Control group: did not use the application | Primary: Depression (CES-D) Follow-up: 3 mth (post-intervention) | Intervention group reported statistically significant fewer depressive symptoms pre- versus post-intervention (p = 0.037). No difference for control. | Non-completion rate 20% Technical, pedagogical and general satisfaction lowest scores for Smartphone users |
 Pagán-Ortiz et al. 2014 [29] NRCT USA | Sample: recruited: 72; T1: 40; T2: 32 Consent rate: NR Setting: Cities | Inclusion criteria: Spanish speaking caregivers of Dementia sufferers Exclusion criteria: NR | Intervention: web-based: limited text crowding; carer photos; 4 × 1.5 h group sessions Control group: Printed educational materials | Primary: Mastery and confidence (PMS); social support (LSNS); burden (ZBI); emotional distress (CES-D) Follow-up: 1 mth | Across all outcomes there was a trend towards improvements in intervention group but this was not significant | Training Visit time 30mins-1 h average Majority visited >3 times Beneficial, better for early stages, would recommend |
 Torkamani et al. 2014 [26] RCT UK | Sample: recruited: 30 Consent rate: NR Setting: Three European hospitals | Target: Caregivers and people with dementia Inclusion criteria: Patient living at home with full time carer; BI score ≥ 35; ≥9 MMSE <21; Dementia as primary condition or as Parkinsons Disease. Exclusion criteria: NR | Intervention: web-based: education; music; relaxation techniques; forum; self-monitoring tasks. Control group: Usual care | Primary (Carer): Burden (Zarit); Psychiatric/behavioural problems (NPI); Depression (Behavioural: DBI; Sensory: Zung); Quality of life (EQ5D;). Primary (PwC): Cognitive functioning (MMSE; DRS2); everyday activities, self-care and personality change (BDRS); Clinical Dementia Rating Scale; memory and behaviour (RMBPC); Depression (GDS); Functional disability (BI); daily living (LADL); comorbidity (CCI) Follow-up: 3 & 6 mths | Significant improvement in QoL of caregivers in intervention participants, with some reduction in burden and distress. | Training in program Confidence and awareness of health, provided dementia information |
 Van der Roest et al. 2009 [24] NRCT Netherlands | Sample: recruited: 28 Consent rate: NR Setting: Amsterdam Diagnostic group: Caregivers and people with dementia | Inclusion criteria: general: ≥4 h per/week caring for community-dwelling dementia patient; to be in experimental: care recipient lives in Amsterdam district; familiar with computers and the internet Exclusion criteria: NR | Intervention: internet-based: tailored; information; resources; advice Control group: Usual care | Primary: Needs assessment (CANE); burden (SSCQ); self-efficacy (PMS) Secondary: QoL (QoL-AD); knowledge about care and welfare Follow-up: 2 mths | Intervention participants reported more met and less unmet needs, and higher competence | Intervention was easy to learn and relatively user friendly Intervention used program 5.14 times Mean session duration: 14:36 mins |
 Van Mierlo et al. 2015 [25] RCT The Netherlands | Sample: recruited: 73; analysed T1: 64; analysed T2: 49 Consent rate: 89% Setting: Several regions of the Netherlands (Amsterdam Zuidoost, Amsterdam Nieuw-West, regions of Lelystad and Amstelveen) | Inclusion criteria: Informal caregivers of people with Dementia; computer with internet capabilities; knows how to use computer Exclusion criteria: Not able to understand/read Dutch; anticipated nursing home admission ≤6mths | Intervention: internet-based: available for 1 yr.; case manager and carer access tailored; advice Control group: Usual care | Primary: Needs of people with Dementia (CANE) Secondary: Competence (SSCQ); QoL (EQ5D + c); stress (NPI) Follow-up: 6 mths; 12 mths | Increased competence in intervention participants at 12 mths. Active users in the intervention group reported more met needs than controls at 6 mths. | Easy to learn and user friendly. 5 pts. never logged in. 5 in intervention never logged in 16 classified as low frequent users (≤6 logins); 20 classified as high frequent users (≥7 logins). |
Multi-modal | ||||||
Sample: recruited 110 Consent rate: 87% | Inclusion criteria: ≥21 yrs.; English/Spanish speaking; caregiver for person with AD; ≥4 h /day caring in last 6 mths; MMSE patients < 24; telephone. Exclusion: carer/PWD illness, MMSE = 0 | Intervention: education and skills training, 6 × 1-h sessions (2 in-home and 4 via video); 5 video support groups. Delivered by: online and certified interventionists Attention control: same level of contact - nutrition and diet. Control group: written education materials + brief phone call. | Primary: Depression (CES-D); Revised Memory and Behavior Problems Checklist; social support; positive caring. Follow-up: 5 month follow-up | Intervention participants experienced decreases in caregiver burden, increased appreciation of the positive aspects of caregiving, and greater satisfaction with social support. No benefit of the intervention for depression. | Useful, easy to use, support groups, video-phone and resource guide valuable | |
 Eisdorfer et al. 2003 [49] RCT USA | Sample: recruited: 225; analysed: 147 Consent rate: NR Setting: Miami site of REACH program | Inclusion criteria: care recipient had probable ADRD or MMSE < 24; care recipient has dependency/limitation in daily living; carer lives with patient; ≥4 h per day caring for ≥6 mths; one other family member agrees to participate who provides emotional/instrumental support. Exclusion: Caregiver has a terminal/severe illness/disability; not residing in Miami in 6mths. | Intervention 1: computer-telephone integrated system: calls; discussion groups; voice messaging; therapist reminders; resources Intervention 2: Structured family therapy (SET) Delivered by: therapists Control group 2: Minimal therapy | Primary: Depression (CES-D) Secondary: Caregiver burden (RMBPC); Satisfaction with social support Follow-up: 6 and 18 months | At the 6 mths follow-up the integrated system group reported significant reduction in depressive symptoms, relative to other groups At 18mths follow-up the reduced depressive symptoms was maintained for Cuban Americans and White Non-Hispanics | User guides, reminders 56 average contacts 19 h average time using system |
 Finkel et al. 2007 [50] Pilot RCT USA | Sample: recruited: 46; analysed: 36 Consent rate: NR Setting: Community-based social service agency | Inclusion criteria: ≥4 h care per day for a relative with Alzheimer’s or dementia for ≥6mths; ≥21 yrs.; living with or same geographic area as patient; telephone; intending to stay in geographic area ≥ 6mths; English competency; MMSE ≤ 23 Exclusion: Caregiver or care recipient has: life expectancy ˂6mths; blind or deaf. Care recipient MMSE = 0 or bedbound. | Intervention: computer-telephone integrated system: calls; messaging; information and services; education sessions; support group sessions. 2 x in-home sessions (first & @ 6mths) Delivered by: certified clinical social workers Control group: Basic education material; 2 x call <15mins | Primary: Depression (CES-D) Secondary: Caregiver burden (RMBPC); Caregiver health care behaviours (Caregiver Health & Health Behaviour Scale); Social Support (Revised scale of Inventory of Social Supportive Behaviors) Follow-up: 6 mths | Intervention participants reported significantly reduced burden Intervention participants with high depression at baseline reported significant decline in depression Intervention participants reported significantly increased confidence in caregiving and improved ability to provide care | Trained in use 60% completed all sessions 80% support groups attendance 8 h contact over study Support groups valuable, system easy to use, helpful, valuable |
 Hicken et al. 2016 [55] RCT USA | Sample: 231 caregivers; stratified by level comfort with internet and rurality. Consent rate: NR Setting: VA medical centre, residing in community | Exclusion: care recipient bedbound; had cancer or serious mental illness diagnosis; life expectancy of <16 weeks; unable to give informed consent | Intervention 1: Internet via computer 3 days per week for 10–15 min; videos caregiving skills; written information; brief health assessments 2–3 per week; Remote monitoring by Case Manager Intervention 2: Telephone support printed materials, DVD; monthly telephone calls; Monitoring by Case Manager | Primary: Caregiver burden (ZBI); Grief (MARWIT); Depression (PHQ); family conflict (2 items); nursing home placement (DIS). Follow-up: Baseline and post-intervention (4–6 mths) | No differences between groups on depression, burden, nursing home placement or family conflict. For experienced internet users greater reduction in grief was reported those receiving internet vs increase in symptoms for telephone. | 74/231 not comfortable with internet at baseline Interacting with Case Manager important support |
 Mahoney 2001 [52] RCT USA | Sample: recruited: 100; analysed T1: 93; analysed T2: 86; analysed T3: 82 Consent rate: 85% Setting: Visited in their homes | Inclusion criteria: >21 yrs.; ≥4 h daily assistance ≥6mths for family member with AD with ≥2 IDL impairments and ≥AD-related disturbing behaviour. Exclusion: Plan to institutionalise family member ≤6mths; participating in other study; terminally ill. | Intervention Integrated telephone-computer system: modules; mailbox; voice messaging; bulletin board. Control group: Usual care | Primary: Bothersome nature of caregiving (RMBPC); Anxiety (STAI); Depression (CES-D) Follow-up: 6, 12, 18 mths | Adopters were older higher education and greater sense of management Those judged as more highly proficient at study commencement by RA were more likely to be adopters Preferred human interactions Effectiveness see Mahoney 2003 | Training in system 55 min per user 50% at least 22 mins, 25% at least 70 mins 21% ask the expert, 24% in home support group, 57% respite and 79% counselling Use plateau first 4 mths, technical issues |
 Mahoney et al. 2003 [51] RCT USA | Sample: recruited: 100; analysed T1: 93; analysed T2: 86; analysed T3: 82 Consent rate: 85% Setting: Visited in their homes | Inclusion criteria: >21 yrs.; ≥4 h daily assistance ≥6mths for family member with AD with ≥2 IDL impairments and ≥AD-related disturbing behaviour. Exclusion: Plan to institutionalise family member ≤6mths; participating in other study; terminally ill. | Intervention: Integrated telephone-computer system: modules; mailbox; voice messaging; bulletin board. Control group: Usual care | Primary: Bothersome nature of caregiving (RMBPC); Anxiety (STAI); Depression (CES-D) Follow-up: 6, 12, 18 mths | Significant effect on all 3 outcomes for those with lower mastery at baseline Intervention participants (wives only) reported significantly reduced bother | Reminders about features Used most in 4 mths 55 min/user over study 1–45 calls, up to 3 min Preferred short interactions |
 Marziali & Donahue 2006 [47] Pilot RCT Canada | Sample: recruited: 66; analysed: 48 Consent rate: NR Setting: Two remote hospitals Diagnostic group: Caregivers | Inclusion criteria: Family caregiver; recipient has moderate disability from either Alzheimer’s, stroke-related Dementia or Parkinson’s. Exclusion criteria: NR | Intervention: Internet video-conferencing: 10 × 1 h video support groups; 12 x online support groups; disease-specific support and education Delivered by: Group therapists then peers Control group: Usual care | Primary: Health Status (Health Status Questionnaire 12); Depression (CES-D); ADL and IADL; Distress (RMBPC); Social Support (Multi-dimensional scale of perceived social support). Follow-up: 6 mths | No difference between the groups at follow-up on any measure When stress scores were combined (ADL/IADL & RMBPC), a significant effect was found from baseline to follow-up for intervention condition | Training in program 78% easy to use 95% support group via computer positive 61% video-conferencing helpful |
 Marziali & Garcia 2011 [48] CBA Study Canada | Sample: recruited: 91 Consent rate: NR Setting: Three cities Diagnostic group: Caregivers | Inclusion criteria: Dementia caregivers, spousal or adult children living with care recipient Exclusion criteria: NR | Intervention 1: web-based/video-conferencing: information; email link; chat forum; educational videos; video-conferencing link Intervention 2: web-based: information; educational videos chat forum - clinician moderator | Primary: Caregiver health (HSQ-12); depression (CES-D); caregiver distress (SMAF); current service use; intent to continue caregiving at home Caregiver characteristics: personality (EQO-R); neuroticism; self-efficacy (Revised scale for care-giver self-efficacy) Follow-up: 6 mths | Video-conferencing intervention participants reported significantly great improvements in mental health For video-conferencing participants, improved mental health was associated with lower stress response | Training and facilitated chat forum monthly Video group – average 7 sessions and 5 self-help Education videos not accessed by many Problems with video software |
 Steffen 2016 [54] RCT USA | Sample: 74 Consent rate: 71% Setting: Primary care Target: Carer and person with dementia | Inclusion: Carer: Female 30+; cohabitating with NCD; ≥2 symptoms memory/behaviour; 3 symptoms CES-D; no placement in next 6 months; no suicide attempts or risky alcohol intake; primary care. Person dementia: confirmed diagnosis; primary care; no history schizophrenia; bipolar; alcohol, HIV, MS, Korsakoff. | Intervention 1: Behavioural coaching, with videos, workbook, 10 weekly telephone calls and w2 maintenance calls (40 min duration). Delivered by: telephone calls from a trained coach Intervention 2: Basic education and support materials +7 telephone calls (20 min duration) Delivered by: a trained coach | Primary: Memory and behaviour (RMPBC); depression (BDI-II) Secondary: Mood, Anxiety (MAACL-R), Self-efficacy (RSCS) Follow-up: Intake, post-intervention and 6 months follow-up | Intervention participants reported Greater reduction in: depressive symptoms in intervention (Cohens d = 0.5) and upset due to behaviour in intervention (Cohens d = 0.5). Greater proportion in control had clinically significant depression (53% vs 29%, p < 0.05) Lower levels of mood (d = 0.66) and anxiety (d = 0.39) and higher levels of self-efficacy (d = 0.55 and 0.46) in intervention. Benefits for intervention maintained at 6 months | 85% completed intervention phase No information on acceptability, engagement or uptake. |