To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia.
Methods
Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer); then assessed against the Effective Practice and Organisation of Care (EPOC) methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed.
Results
The number of publications increased by 13% each year (p < 0.001). Half were descriptive studies (n = 92, 50%) describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48%) reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10), multiple modalities (n = 9) or telephone (n = 15). Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time.
Conclusion
Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.
Dementia can have complex health, practical and social consequences for the person living with dementia and their family. Most people with dementia (70%) live in the community [1]. People with dementia may report a range of physical, psychosocial and practical concerns. If left unmet, these concerns may adversely impact quality of life [2, 3]. Informal caregivers are often called on to help manage activities of daily living, behavioural and psychological symptoms; and organise care and provide emotional support [4]. Caregiving has been linked to health and psychosocial concerns [5].
The need to improve care of people with dementia and to better support their caregivers across multiple domains has been emphasised [6]. These include the need for improvements in the quality of information available to this population; the implementation of care plans tailored to individual needs; and greater support for caregivers to ensure they are able to respond to the concerns of the person with dementia while managing their own health [6]. Limited awareness within the community about services available to provide support; insufficient provider time, skills or resources to deliver care [7, 8]; and inconsistencies in monitoring and management of physical, psychosocial and practical concerns can result in fragmented dementia care [6].
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Health resources are stretched to capacity, and there are a range of geographical, practical and system barriers to optimal dementia care [9]. The subsequent demands placed on caregivers of people with dementia means face-to-face support services can be burdensome or impractical. Hence, the delivery of services via alternative means, such as by computer or telephone, may allow individualised support of a broad cross-section of consumers in a timely way. More than half of people aged over 65 [10‐12]; and up to 80% of caregivers of older adults are internet users [13]. These modes of delivery can facilitate the provision of credible information and resources that enable consumers to exercise control over their lives, and promote efficient communication between consumers and health care teams. Systematic reviews highlight the potential benefits of interventions delivered by professionals to caregivers of people with dementia [14]. Others describe benefits of interventions delivered via telephone or computer for other patient groups and their caregivers, including improvements to quality of life, perceived support, knowledge and satisfaction (e.g. [15‐17]). The need for further research is emphasised, particularly given the rapidly changing technology field. Determining the effectiveness of interventions for specific caregiver groups is important, as there may be variation in complexity and severity of needs experienced by caregivers and the people they support. While there has been some synthesis of the evidence for computer and telephone interventions designed for caregivers of people with dementia [18, 19], none have examined the type, quality and impact of research.
To provide a comprehensive overview, several aspects of the available literature should be explored. The volume and type of research represents an indication of broad research effort. These indices can identify gaps that can be targeted by further research to guide practice and policy. Establishing the quality of the research [20] can reveal areas where increased capacity through further training or allocation of resources may be required. The aims of this review were to examine the extent to which computer and telephone delivered interventions for caregivers of people with dementia have been examined in the literature, including the: 1) volume and type of data-based publications; 2) methodological quality of intervention studies according to Effective Practice and Organisation of Care (EPOC) criteria; and 3) the effectiveness, acceptability and utilisation of interventions in studies that met minimum criteria for quality.
Methods
Definition of interventions
Included interventions were conceptualised as either: interventions incorporating components delivered via computer, tablet, website, e-mail, or mobile app; or interventions delivered via text messaging, telephone calls, or telehealth/videoconferencing modalities.
Search strategy
Medline, Embase, CINAHL and Cochrane Library of Critical Reviews electronic databases were searched from 1990 to Dec 2016 using subject headings and keywords (Additional file 1). The reference lists of existing systematic reviews and all eligible intervention studies were manually searched.
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Inclusion/exclusion criteria
Studies were included if they: (i) examined interventions as defined above; (ii) included people providing unpaid/informal support to someone living with dementia (aged 18 years or over); (iii) examined one or more of the following outcome(s): health-related effects (e.g. impact of caring for someone living with dementia, quality of life, depression, satisfaction with care, self-efficacy), health care utilisation and/or costs (e.g. hospital admission, length of stay). Studies with a heterogeneous sample were included if they reported outcomes separately for caregivers. Studies were excluded if they: (i) were reviews, case studies, commentaries, conference abstracts, editorials or protocol papers; (ii) tested interventions that were not caregiver–oriented (e.g. education of professionals).
Data coding
The abstract and title of retrieved articles were initially assessed against the eligibility criteria by one reviewer and rejected if the study did not meet inclusion criteria. The remaining full-text studies were assessed against the inclusion criteria by one author, and studies which met all criteria were retained. A random sample of 20% was coded independently by another author. Discrepancies between the two authors were resolved through discussion. Studies were categorised as either measurement, descriptive or intervention. Measurement studies reported on the development or psychometric properties of tools to assess utilisation and/or acceptability. Descriptive studies reported on perceived acceptability, access or utilisation of interventions. Intervention studies testing the effectiveness of interventions that had a primary aim of improving health outcomes, health care utilisation or costs for caregivers of people with dementia.
Assessment of methodological quality
Intervention studies were assessed to determine whether the experimental design was one of the four types allowed by the EPOC design criteria - randomized controlled trials, controlled trials, controlled before and after studies, or interrupted time series studies [21]. Stepped wedge designs were also included as they are a viable alternative to a parallel cluster randomised trial and accepted as a robust design. For those studies meeting minimum design criteria, methodological quality was then assessed using EPOC risk of bias criteria independently by two reviewers (AW and SD).
Assessment of intervention effectiveness
Study data was extracted for those studies that met EPOC criteria by authors (AW, SD, EM) and included: sample characteristics, intervention details, outcome measures and time points when data were collected, intervention effects on primary and secondary outcomes, study limitations and conclusions. Study data on feasibility and acceptability, including: retention of participants; access to the internet; engagement strategies; and utilisation of technologies was also reported.
Analysis
Poisson regression was used to model trends over time in the numbers of publications. Percent change by year is presented and P-values were calculated from the Wald Chi-square.
Results
Search results
A flow diagram of the search strategy is provided in Fig. 1. After duplicates were removed, 3828 publications were identified and assessed against the eligibility criteria. A total of 185 publications met eligibility criteria and were included.
Fig. 1
Search strategy
×
Number and type of studies published between Jan 1990 and Dec 2016
Half of the eligible studies were descriptive studies (n = 92; 50%) (see Fig. 2). Four measurement studies were identified, which tested the validity and reliability of instruments to assess the utilization or acceptability of interventions. The remaining 89 studies (48%) reported on interventions to improve the health outcomes of caregivers. Poisson regression shows evidence of the number of publications increasing by 13% each year (p < 0.001).
Fig. 2
Number of data-based publications by year January 1990–December 2016
×
Methodological quality of intervention studies
Of the 89 intervention studies identified, only 34 met initial EPOC design criteria (45%). These included a cluster randomised controlled trial, 30 RCTs, and four non-randomised controlled trials (see Table 1). The 34 studies were rated across each of the nine EPOC risk of bias criteria. Only two studies were low risk on all of the nine criteria; with ten studies rated as low risk on at least seven of the criteria. The most poorly met criteria included: not specifying method of generating allocation sequence or concealing allocation, and blinded outcomes assessment.
Table 2 presents the study characteristics of intervention studies that met EPOC design criteria (n = 34). Sample sizes ranged from 11 [22] to 299 [23] participants. The majority of the studies were conducted in the United States of America (USA) (n = 20), Europe (n = 8), China (n = 3), Canada (n = 2) and the United Kingdom (UK) (n = 1). Ten interventions were delivered by computer only [22‐31]; 15 via telephone [32‐46]; and nine tested combined multiple modalities, such as computer-telephone systems [47‐55]. Almost all adopted psychotherapeutic approaches: behavioural activation [36, 37, 54]; psycho-education alone or combined with cognitive behavioural therapy, skills training and/or peer support [23‐32, 35, 38, 39, 50, 53, 55, 56]; peer support groups [33, 40, 47, 48]; CBT [41‐44]; or family therapy [49]. One study incorporated physical activity and psychotherapy [45]. Length of follow-up ranged from 1 month to 18 months. Attrition was moderate to high across studies (mean = 23%, range 6% [27]-61% [41]); with differential dropout reported between the intervention group (40%) compared to control (11%) [28]. Some studies did not report rate or reasons for loss to follow-up [22, 24, 26, 33, 34, 38, 48].
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
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
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
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
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
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
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
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%
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
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.
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
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).
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
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
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
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).
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
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.
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
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
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
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
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
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
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
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)
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.
BDI-II Brief Depression Inventory, BDRS Blessed Dementia Rating Scale, CANE Camberwell Assessment of Need for the Elderly’, CES-D Center for Epidemiologic Studies–Depression Scale, CCI Charlson’s Comorbidity Index, CSQ-8 Client Satisfaction Questionnaire, EQO-R Eysenck Personality Questionnaire Revised, FAD Family Assessment Device, GAS General Anxiety Scale, GBB-24 Giessen Subjective Complaints List, GDS Geriatric Depression Scale, GHQ-28 General Health Questionnaire – 28 item, HADs Hospital Anxiety Depression Scale, IESS Instrumental Expressive Social Support Scale, IQCODE Informant Questionnaire on Cognitive Decline in the Elderly, LADL LAwson Activities of Daily Living; Scale, LSNS Lubben Social Network Scale, MARWIT MARWIT-MEUSER CAREGIVER GRIEF INVENTORY, MAACL-R Multiple Affect Adjective Checklist, MOS Medical Outcomes Study, MSPSS Multidimensional Scale of Perceived Social Support, NAS Negative Affect Schedule, NPI Neuropsychiatric Inventory NR not reported, ODAFSI Ohio Department of Aging Family Satisfaction Instrument, PAC Positive Aspects of Caregiving, PANAS Positive and Negative Affect Schedule, PHQ Patient Health Questionnaire, PMS Pearlin Mastery Scale, PSS-14 Perceived Stress Scale, QoL-AD Quality of Life in Alzheimer’s Disease, RMBCP Revised Memory and Behavioral Problem Checklist, RSCS Reading Self-Concept Scale, SEQ Revised Scale for Caregiving Self-Efficacy, SF-36 Short Form-36, SMAF Functional Autonomy Measurement System, SPICC Self-Perceived Pressure from Informal Care, SSCQ Short Sense of Competence Questionnaire, STAI State Trait Anxiety Inventory, Vas visual analogue scale, ZBI Zarit Burden Interview
Effectiveness, acceptability and utilization of technology interventions
Computer-based interventions
Ten interventions were delivered by computer only [22‐31]. Benefits were reported in relation to caregiver depression and mental health outcomes in 3/8 studies [23, 26, 28, 31]; and caregiver burden and/or stress (2/7 studies) (Additional file 2: Table of outcomes) [23, 26]. Other reported benefits included improved knowledge [22, 30], quality of life [26] and unmet needs and more positive aspects of caring [23, 24, 29]. Web-based multimedia interventions providing written and audio-visual materials modelling positive caregiving strategies [23]; a program combined with coach monitoring [28]; and an online platform of educational material combined with peer and clinician contact [26] had modest success. The majority were judged as acceptable, easy to learn and user-friendly by caregivers. However, utilisation was variable. Two studies reported a dose-response relationship, with active users reporting greater benefits [23, 25]. Three studies incorporated online technical support to encourage engagement [22, 23, 27], while others used automated reminders [23, 28]; follow-up calls [27]; health professional contact via chat functions or forums [25]; and financial incentives [23, 29].
Telephone interventions
Twelve studies reported on the impact of telephone counselling using psychoeducation [32, 35, 37, 39, 46]; behavioural activation [36] or CBT [41‐43]; alone and when supplemented with videos [45, 57] and respite care [38]. Mixed effects were reported in relation to caregiver depression and mental health outcomes (benefits in 6/12 studies) [32, 36‐38, 43, 44]; and caregiver burden and/or stress (benefits in 4/11 studies) [32, 38, 45]. Some reported improvements in goal attainment [42], physical symptoms/ADLs [45] and managing problems such as memory and behaviour [32, 46]. No benefits were found for social support, self-efficacy and health and self-care outcomes. Rate of session participation was high in many studies [32, 35, 38, 42, 43, 45, 46], and participants reported the programs as helpful and convenient [32, 35, 38, 39, 41‐44, 46]. Four studies reported that the intervention group received longer interventions than their attention-only control groups [42‐44, 46].
Three studies examined the impact of telephone support groups. In one of these studies, support groups led to short-term cost savings for veteran care recipients living at home, but this was not maintained over 6 month period [34]. For the other two studies, no significant improvement in the impact of supporting a person with dementia, depression, social support or distress with relative’s problems were identified [33, 40]. The lack of effect did not differ by attendance [33]. Acceptability and utilisation data were not reported in two studies [34, 40].
Multi-modal interventions
Nine studies described multi-modal intervention programs. Four of these reported on aspects of the Resources to Enhance Alzheimer’s Caregiver Health for Telephone-Linked Care (REACH) program. A computer-telephone psychoeducational program incorporated home and video-phone delivered family conferencing, online support groups and information resources. In one study, the program resulted in lower burden, and reduced depression for caregivers with elevated baseline depression [50]. However, another found no difference between integrated telephone and computer-network system intervention and control in relation to bother, depression or anxiety at 3 months [51]. In a third study, greater benefits were seen when the program was combined with family therapy [49]. Caregivers who received a psychosocial intervention modelled after REACH II, which included access to support groups via videophone technology, reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving experience; but no benefit for depression [53]. Video-conferencing combined with online support led to greater improvements in mental health status compared to an internet chat group alone [48]. Providing the requisite technology or equipment [48, 50‐53] and training were seen as an important for promoting uptake and ongoing engagement [48, 50‐53]. However, some participants reported problems with using technology [48, 51, 52]. Behavioural coaching including videos, workbooks and telephone calls led to improvements in symptoms of depression, memory and behavioural problems, and caregiver self-efficacy [54]. No differences in outcomes were reported for a trial comparing internet versus telephone delivery of psycho-education, skills training and symptom assessments [55].
Discussion
The growing number of publications in this field reflects the increasing demand for strategies that can complement existing services and better support those providing informal care to people living with dementia. A high proportion of the total data based published studies were intervention studies (48%). However, less than half of these identified interventions met initial EPOC design criteria. Most were uncontrolled before-and-after trials, which provide potentially promising feasibility data but require more rigorous testing. Only two studies were rated as methodologically sound on all the EPOC criteria. The evidence base may therefore be compromised by potential bias. Studies were also often characterised by poor response rates and attrition bias [30, 41, 45, 46], and short intervention / follow-up periods [24, 32, 35‐37, 39, 46]. Loss to follow up due to death or significant health changes is expected conducting research with older people and people with dementia. However, adequately powered samples that take into account significant attrition rates should be a key consideration for future research.
Telephone counselling delivered over multiple sessions across many months was largely acceptable to caregivers. Mixed findings with regard to caregiver outcomes were reported. In the only telephone intervention study judged as low risk on all EPOC criteria, psycho-education, skills training and health assessments improved depression and behavioural and memory problems [46]. Previous systematic reviews recognise the potential for telephone interventions in supporting people with dementia and their informal caregivers to maintain independence and wellbeing [19]. A lack of time and an inability to leave the person with dementia alone are major barriers to caregivers participating in face-to-face interventions. Telephone counselling may be a more feasible support option, but may still require more resources than are readily available. This may limit sustainability of such interventions.
In the only study of computer-based interventions to meet all EPOC criteria, psychoeducation with strategic access to clinicians via coaching support improved depression and anxiety [28]. Increasingly, innovations in mobile and tablet technology are being used to adapt care for caregivers of people with physical or cognitive impairment. Caregivers can access resources any time of the day, as often as they want. Multiple information formats can be adapted for health literacy or language. Content can also be readily updated or modified to incorporate other critical issues. However, success is reliant on the extent to which the intervention is actually being used. Differences between adopters and non-adopters were reported [25, 33, 52]; suggesting the need for greater consumer input during development. Attitudes towards technology may influence whether caregivers begin to use programs; while perceived competence may influence whether caregivers continue to use it [58].
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Implications for policy and practice and directions for future research
Computer- and telephone-delivered interventions may assist in overcoming some of the deficits in current dementia care. Interventions that include psycho-education via multiple formats, practical strategies and skills training to manage care, and peer and/or clinician contact hold promise. There are a number of potential advantages of these types of interventions. The reach of these interventions is significant and growing each year [59]. They can be delivered any time of the day, and from the comfort of the individual’s home. This has particular advantages for caregivers of people with dementia with severe cognitive deficits and/or limited mobility, or those with poor access to specialised services or professionals [8, 60‐62]. Features can be tailored for health literacy and cognitive deficits. For instance, information delivered via computer can be presented in written or audio-visual formats. Algorithms can tailor information according to user needs and preferences. Interventions can augment standard dementia care and improve efficiency of resource utilisation. Providers may supplement face-to-face consultations with interventions, or replace for those caregivers for whom face-to-face interventions are not feasible.
Despite these potential benefits, methodologically rigorous trials are needed to further identify the components of interventions effective in improving outcomes. Given evidence indicating dose effects, strategies to encourage uptake and continued utilisation of the intervention are crucial to ensure sufficiently exposure to achieve improvements. Proactive, personal and detailed invitations from clinicians and reminders have been shown to improve uptake of interventions and adherence [63‐65]. It may also be useful to explore which of these strategies are most effective in maximising uptake and engagement. Interventions were rarely tested in other under-served populations, including ethnic minorities [55]. Few examined whether the intervention improved outcomes for the person living with dementia. It may be that providing education and skills training to carers may also result in beneficial effects for the person whom they support. Future research should further explore this possibility.
Limitations of review
Although the strategy was developed with the assistance of an academic medical librarian, indexing in this rapidly changing field may not have captured all relevant studies and we did not include non-published studies or grey literature. The authors only used the available reporting of research methods from the included publications to determine study quality ratings. Some quality criterion may have been met but received an ‘unclear’ rating when not adequately reported, potentially underestimating study quality. The review was limited to include only those studies that met EPOC criteria which restricted the study sample. While insights on the effectiveness of interventions may be obtained from studies using designs excluded by these criteria, these restrictions increase the likelihood of including studies with high quality evidence.
Conclusions
Interventions delivered via technology mediums, such as telephone and computer, have the potential to provide information and resources to improve outcomes of caregivers of people with dementia. However, more high-quality intervention trials are required to make clear recommendations about which interventions are most effective in improving caregiver outcomes. Strategies are also needed to maximise utilisation of interventions. Interventions which provide practical strategies to upskill caregivers in managing the care of the person with dementia and their own wellbeing, access to peer and/or clinician support and advice and target the person with dementia and their caregiver as a dyad should be explored.
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Acknowledgements
The authors would like to acknowledge the assistance of Angela Smith from HNE Health Libraries who assisted with refining and conducting the literature search.
Funding
This research was supported by a National Health and Medical Research Council (NHMRC) Dementia Team Grant (APP1095078). AW is supported by an Australian Research Council Post-Doctoral Discovery Early Career Research Award.
Availability of data and materials
This paper is a systematic review. Articles selected for this review were referenced in bibliography. All data extracted from the selected studies were presented in the tables. There is no raw data to be made available.
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The author declares that they have no competing interests.
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