Table 2 Barriers and facilitators to implementation of EBIs for caregivers of people with dementia, mapped onto the Consolidated Framework for Implementation Research constructs
CFIR domains | Barriers to implementation | Facilitators to implementation |
|---|---|---|
eHealth [40,41,42,43,44,45,46,47,48,49,50,51,52,53,54] Implemented in and/or delivered by community-based aged care organization (e.g., dementia day care centers), university medical centers (i.e., research teams), and/or ambulatory mental healthcare institutions | ||
I. Intervention characteristics | • Appropriateness: Technical issues with intervention components; poor connectivity, unintuitive user experience/interface (e.g., illegible font, no functional real-time chat box with access to facilitator feedback, unnecessary and confusing tools and functions); existing video communication tools insufficient for health education sector • Acceptability: Difficulty level of language used unsuitable for end users, privacy and ethical concerns, intervention rigidity limited tailoring, unsuitable length of intervention (session and program) duration | • Real-time information/alert/notifications and direct instant access to human facilitator (coach) to provide tailored, individualized support; engaging topical forums allows users to share/exchange questions; accessible resources/library • Multimodal delivery of information (e.g., centralized Internet-based platform with information, paired with print-out copies, written in simple language, presented in clear font), video and audio (verbal) guidance/instructions facilitated use • Caregivers (with sufficient digital literacy) appreciate virtual on-demand access and timing flexibility |
II. Outer setting | • Participants faced time constraints (due to caregiving obligations), users’ lack of awareness of the program availability and preparedness to participate (e.g., poor technological literacy; inflexible schedule), improper timing of intervention (e.g., too early/too late in PwD care trajectory) • Lack of integration with existing dementia/aged care services (lack of integration support from local government agencies) • Traditional healthcare settings (e.g., hospitals) unable to adopt intervention and can only be implemented as a community-based resource (e.g., FamTechCare) • Poor physical infrastructure in geographical region (internet connectivity), widespread sociocultural resistance to adopt Internet-based interventions | • Logistics: Active dissemination through network events and leveraging network partners’ channels (e.g., locally trusted intermediaries and clinicians’ existing caseload, social networks/social media) • Personal factors: Applying a consumer-directed care model for implementation, high digital literacy rates within target demographic and trust toward implementing agencies (e.g., health-professional-led integrated network model) |
III. Inner setting | • Systems unprepared to deliver care to caregivers, caregiver support is administratively filed under PwD care (complicated when PwD is unregistered) • Internal financial cutbacks limit intervention adoption and internal capacity (e.g., staff members lack time needed to review/approve the intervention and learn/train) | • Streamlined administrative processes (e.g., caregiver registered independent from PwD, insurance compensation, integrated online support) • Human resources: Well-prepared/educated staff, engaged leadership • Sustainable financing mechanisms from foundation/government grants • Directly engaging intervention initiators/vendors in implementation (staff training) process |
IV. Characteristics of individuals | • Unfit digital literacy in caregivers and staff members • Primary implementation agent (e.g., physicians) does not identify with or recommend the intervention | • Primary implementation agent identifies with program and developers (intervention source) (e.g., internally developed interventions are more familiar and more likely to be recommended) |
V. Process | • User recruitment challenges (end-user restrictions, limited reach due to insufficient international search engines, caregivers were not registered with PwD) • Resistance from network members (need for multimodal engagement strategy targeting organizations, clinicians, trainees, and caregiver) • Cost of promotion and sustainment, high user attrition rates • Lack of systematic planning with end users and audit/feedback mechanisms across implementation trajectory | • User recruitment facilitated through partnering with network agency (leveraging partners’ channels), hiring external marketing agencies, creating public awareness/outreach campaigns, and promoting speaking engagements (conferences/seminars/expos) • Using social media marketing strategies to disseminate and strategically target reach and evaluate implementation outcome indicators via site analytics (website traffic, visitor retention) • Iterative changes made to intervention components based on user feedback |
Implemented in and/or delivered by day care centers operated by nursing homes and/or community centers, may be located physically in an existing clinic or repurposing alternative infrastructures (i.e., church) | ||
I. Intervention characteristics | • Cost of intervention (attendance fees and unsustainable financing mechanisms) • Intervention programming unsuitable for users (e.g., nutrition plan, lack of dementia-specific accommodation) | • Respite care had a positive atmosphere compared to nursing homes (philosophy surrounding staff training, schedule flexibility and care routine), one-on-one interaction and individualized support sparked position affect and engagement |
II. Outer setting | • Lack of transportation to facility; tedious administrative process to apply for respite vouchers (i.e., recurring [re-]application paperwork) • Poor service advertisement: need for “business-like approach in marketing” to attract users • Insufficient financing mechanisms (e.g., respite care vouchers lack comprehensive coverage and are limited by budgets) and high out-of-pocket expenditure for caregivers | • Information sources include home health workers, Alzheimer’s helpline, support groups and legal aid services; health professionals recommend respite care service to patients • Local community integration and participation in activities/events to build awareness and trust • Allocated respite vouchers may subsidize service payments |
III. Inner setting | • Staff shortage as a barrier to use • Infrastructure: safety concerns, inadequate space, improper atmosphere and environment (furniture) | • Staff knowledge, qualifications, empathy, and sensitivity were facilitators |
IV. Characteristics of individuals | • Perceived misalignment between staff and organizational mission | • Staff individual competency and ability to balance meeting PwD wishes and delivering intervention components (maintaining fidelity), staff assumed multifaceted roles (PwD server and caregiver, liaison with family members) |
V. Process | • Poor service advertising and lack of client engagement | • Engagement facilitated by widespread promotion and “business-like” approaches to dissemination |
Care coordination and case management [75,76,77,78,79,80] Implemented in and/or delivered by primary care practitioners, Veteran Affairs Medical Center (healthcare organization) (USA) and partnering Alzheimer’s Association chapter (community service organization) | ||
I. Intervention characteristics | • Underutilized components include health information/education, care planning and coordination, emotional support • Fragmented care continuity and access support reduce intervention use (e.g., caregivers were left to contact community support agencies independently) • Inconsistent quality and accuracy of prescribed information | • Care consultants co-created health plans with dyads, provided tools to enhance dyad competence and self-efficacy, delivered accurate information about local community services, and reduced care fragmentation by connecting dyads to other complementary service agencies • Flexible, tailored (multimodal), manualized care coordination/support improved access and user engagement, scheduling telephone calls ensures caregiver availability and access for rural caregivers |
II. Outer setting | • Health system (pathways and information) fragmentation: lack of timely referral pathway and mechanism between GP (i.e., gatekeepers) and intervention agency, GP lack information/awareness • Lack of local hospital system involvement: initiators were viewed as “outsiders” and “competitors” instead of collaborators, GP were not involved as implementation partners | • Inter-agency partnerships between initiators and intermediaries are main facilitators to implementation, embedding interventions into existing services via networks improve sustainment (e.g., PDC), external agencies (licensure and training institute) disseminate innovation • Overarching national agenda (e.g., Older Americans Act) encouraging interventions that streamline service continuity by linking healthcare services to community services, interventions that facilitate GP referral to community services initiated and sustained by the government (e.g., ACAT Australia) • Local intermediary (e.g., Alzheimer’s Association) chapters services regional caregivers and provide cross-system support to GP, academic institutions, and other stakeholders |
III. Inner setting | • Resistance for change from local hospital systems (due to physicians’ time restrictions) and lack of financial investment in adopting intervention | • Implementing agency staff training was facilitated through formal education sessions (service-delivery protocol, care coordination information system explanation), additional funding for staff education provided by government grant to support community outreach programs established in partnership with external research centers and academic institutions |
IV. Characteristics of individuals | • PwD personal diagnosis avoidance leads to lower diagnostic rates | None identified |
V. Process | • Unanticipated challenges (e.g., nursing strike, natural disaster (snow, storm)) and geographic/logistic complications (e.g., transportation limitations) impeded implementation process | • Care consultation was facilitated by using standardized protocols for service delivery, including structured initial assessment, identifying problems/challenges, and developing tailored strategies (care plan) • Recruitment sample was drawn from hospital medical records that indicated dementia diagnosis or memory loss, consulting local community leaders (e.g., clergy members) facilitated fostering networks appropriate implementation planning • Embedding and sustainment were facilitated with support from care coordinators that worked with both the intervention site and partnering agencies/intermediaries |
Psychoeducation [60,61,62,63,64,65,66,67,68,69,70,71] Implemented in and/or delivered by Veteran Affairs Medical Centers (USA), research/clinical centers, social workers, and community-based outpatient clinics, with integrative support from regional government agencies (e.g., Administration on Community Living (USA)) | ||
I. Intervention characteristics | • Unsuitable intervention delivery (e.g., long duration of session and length of program; abrupt end of intervention and losing access to resources were an issue) • Courses were not (time) flexible for caregivers, least useful course content surrounded “drug treatments” and “spirituality” | • Useful interventions (e.g., relaxation CDs, educational booklets/videos/courses, group courses) had easy-to-read, multimodal delivery that allowed users access flexibility (time, location) • Intervention adaptation/translation funded by foundation grants |
II. Outer setting | • Limited community resources create financing difficulties • Barriers to reach include lack of outreach to community healthcare providers and paid advertisements (resulting in limited awareness of services); intermediaries were not fully and actively involved | • Timing of intervention: caregivers prefer the intervention delivered at the time of dementia diagnosis (or soon after) to be well-prepared/informed • Contracting external agencies: intervention initiators contract local agencies (e.g., Veteran Affairs) and intermediaries (e.g., Alzheimer’s Association) to implement program as part of regular services to scale-up service provision, existing staff members are trained, use existing administrative infrastructure (billing/workload codes) to reimburse services • National/local government agenda mandate public organizations to implement intervention in existing services as regular care, embedded through academic-public partnerships |
III. Inner setting | • Staff hesitant to adopt intervention as regular care (increased workload, change in role/function) | • Resources that facilitated implementation include partnering agencies, 24/7 telephone helplines, case managers, resource centers (e.g., Aging & Disabilities Resource Center) • Staff training facilitated by live webinars, consultation calls, and intervention certification programs • Existing staff members were retrained to deliver new intervention as regular care as their skills are suitable to adopt the “highly compatible” and “readily integrated” intervention |
IV. Characteristics of individuals | • Staff competencies in identifying caregivers of PwD who are unregistered | • Staff members are comfortable in their role and are able to iteratively modify the delivery of services to accommodate implementation in the community setting |
V. Process | • Engagement hindered by ineffective dissemination mechanisms | • Involve local religious/social influencers (“implementation leaders/champions”) to establish validation and credibility and accelerate local buy-in • Intervention sustainment facilitated by iterative adaptations to interventions according to demand (e.g., funding shortage required reconfiguration of STAR-C) and user feedback (e.g., language used, training modality) while maintaining intervention fidelity |
Support interventions [102,103,104,105,106] Implemented in and/or delivered by independently established memory clinics (NL), nursing homes, community centers, and daycare centers | ||
I. Intervention characteristics | • Saturated “market” (“surplus”) reduced demand for new interventions serving similar functions (with no clear advantage) and minimized their value • Name of intervention: titles with “dementia” may contain negative association and poor reception | • Support intervention provided at a conveniently accessible location by a small permanent (multidisciplinary) team of professionals, flexible nature of intervention is advantageous compared to institutionalization (which has less capacity, longer wait-lists, increasing care fragmentation) • Clear participant inclusion criteria reduced unexpected challenges by establishing uniform groups |
II. Outer setting | • Poor existing health system (e.g., referral pathway, post-diagnostic support, health financing mechanisms) and resource limitations, ineffective reimbursement schemes determined by user attendance (staffing challenges) • Poor relationship between initiator and regional network stakeholders/referrers (GP/welfare organizations), misalignment between partnering organizations • Lack of clarity about structural financing of interventions and sustainability due to national agenda volatility resulting from changes in political parties, fragmented funding (and need for reapplication) impedes implementation process | • Interventions facilitated in proximity to local community centers (church, welfare center) with recognition and support/collaboration (referrals, sustainment) from regional networks, local champions and influencers were more successful • Obtaining financial support from sponsors or care administrations to fund programs, access to multiple sources of financing (reimbursements) and government-initiated incentive schemes (“waiting-list subsidy scheme,” “tailor-made care funds,” and the “informal care subsidy scheme”) or national legislations (or municipality funding) that establish structural funding to claim finances from • Collaboration protocols and formal contracts were facilitators to referrals, placements, execution, and partnership continuation/sustainment |
III. Inner setting | • Organizations resist adoption if externally developed interventions are perceived as competition or deemed unsuitable for services provided • Difficulties financing projects implemented in welfare organizations in the interim given inflexible budgets and inflexible organizational structure • Low implementation capacity in adopting organizations: human resource (rigid staff, lack of knowledge about dementia-specific needs, lack of leadership motivation and pioneering spirit, role uncertainty within management team and staff turnover), and financing limitations (no financing for people without formal diagnosis, insufficient finances to compensate contracted staff hours) | • Internal team maintains intensive contact with external partners to facilitate execution • Repurposing existing financing mechanisms within organizations accelerates implementation • Staff training and refresher courses facilitated by an external consultant supported implementation • Motivated leaders who sought out cooperative partnerships and were readily responsive to bottlenecks |
IV. Characteristics of individuals | • End-user skepticism causes resistance • Organizations resist existing interventions to “reinvent the wheel” | • Enthusiasm from end users toward the organization and initiators facilitated implementation • Staff competencies (open attitude, motivated) facilitated implementation |
V. Process | • Lack of suitable location (high costs, unsuitable atmosphere, inconvenience) and insufficient pre-implementation environmental assessment risked unanticipated challenges • Need for stronger evidence base before network agencies will adopt interventions • Network support (collaboration) gradually decreased over time (e.g., support received during initiation phase decreased in execution phase), and user recruitment became difficult due to lack of publicity • Service capacity was insufficient, and wait-lists became long • Interventions lack promotion (via pharmacies, GP) and public awareness about the components | • Using a stepwise implementation procedure facilitates implementation planning (preparation, execution, continuation), planning by assessing local/regional (demographic) need for intervention and establishing formal agreements with pre-established networks and partners, following (adaptive) project plans • Establishing the intervention in an existing facility with similar practices is more efficient and establishes confidence in users • Enthusiastic initiators/champions within organizations, program coordinator should be professionally up-to-date and possess management experience, hiring external consultant/agencies to facilitate staff training • Engagement and recruitment of users facilitated by partnering agencies/intermediaries (e.g., Alzheimer’s Café), and personalized materials (flyers/newsletters) and media |
Implemented in and/or delivered by professional trainers in sizeable and safe venues, accessible by car and public transportation, or practiced at home with support from video recordings | ||
I. Intervention characteristics | • Caregivers unable to independently access intervention (difficult location and scheduling) • Unsuitable information delivery (content was unclear and difficult to understand; content did not fit in the recommended timeframe) • Action plan, coping plan, and clock were not useful components | • Multimodal delivery of clear information (e.g., photos and videos of exercise) facilitated use, support of human facilitator/instructor who provided positive reinforcement/feedback and iteratively adapted intervention components to meet users’ circumstances (e.g., difficulty level of exercise) • Home visits and home-exercise logs supported independent performance |
II. Outer setting | • Caregivers did not fill their action plan and found the intervention “too intensive”; limited free time and physical capacity hindered intervention use | None identified |
III. Inner setting | None identified | None identified |
IV. Characteristics of individuals | • Users lacking sense of self-efficacy in performing exercises at home without guidance (e.g., video instruction material) and perceived skepticism toward intervention efficacy | • Routinization of exercise facilitated sustainment |
V. Process | • Recruitment of users through advertisements and personal letters to caregivers were ineffective; barriers included participation burden and lack of caregiver time | • Recruitment was facilitated using an information leaflet (information regarding balance, fall prevention, Tai Chi, and implication of involvement for dyad), key facts sheet, and participant information sheet |
Occupational therapy [81,82,83] Implemented in and/or delivered by NHS memory services (UK), community mental health services, or in the caregiver’s home (by trainers) | ||
I. Intervention characteristics | • Intervention components are not cost-effective within the implementing agency (e.g., agency revenue and therapist salaries are based on patient contact; need to balance training needs and patient contact) | • Individualized face-to-face OT sessions, setting realistic goals with a clear (practical) roadmap, and follow-up check-ins facilitated use • Introducing OT gradually at early stages following dementia diagnosis is optimal and supporting dyads in the adjustment period |
II. Outer setting | • Outcomes are influenced by personal factors (e.g., dyad readiness for intervention); introducing OT immediately after diagnosis may confuse caregivers • Lack of health financing and system infrastructure (e.g., patients were mainly referred to OT for other comorbid chronic conditions contributing to functional decline and home safety issues; referral for OT for dementia diagnosis should not be declined) | • Dyads preferred interventions provided by government agencies (local health system) • Using existing health financing infrastructure (e.g., Medicare Part A & B) and adapting intervention to fit reimbursement (“billing”) criteria while maintaining fidelity facilitates implementation |
III. Inner setting | • Lack of available resources (e.g., equipment) hindered intervention outcomes • Lack of appropriate, cost-efficient fidelity monitoring mechanisms that fit agency culture | • Organizational readiness facilitates implementation through changing the role and function of existing staff/administrators (transformative agency leadership, training early adopters) • Internal structures should be available (e.g. supervisory structure, training support/referral, client tracking, billing infrastructure) |
IV. Characteristics of individuals | • Negative dyad relationship dynamic/quality influences OT outcomes • Dyad’s lack of perceived need for OT and lack of availability to participate | • Caregiver self-efficacy and perceived competency improved with support from OT; positive attitude toward intervention facilitated willingness to try |
V. Process | • Engagement hindered due to lack of perceived need for OT • Translation of intervention components was labor intensive | • Engaging long-term staff members, familiar with organizational structure/policy/clients, as early adopters; reflect on training of trainers • Perform in-depth assessment of practice site characteristics and reimbursement requirements; understand mutable and immutable components of intervention and training (for fidelity) |
Multicomponent intervention [84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101] Implemented in and/or delivered by nonprofit community-based organizations focused on services for older adults and caregivers, hospital-sponsored service program for seniors, clinics and nursing facility/assisted living-based program, and Alzheimer’s Association chapter | ||
I. Intervention characteristics | • Assessment and monitoring components (e.g., videotaping client behavior) may be intrusive to daily residential use • Complexity of intervention (length of program duration, time consuming) and unsuitable components (reading material difficulty level, font size/color, visuals) deter users • Lack of implementation manual increases training difficulties due to intervention complexity | • Treatment and implementation manuals, time-flexible structured training (with human facilitator), certification, ongoing monitoring and feedback (progress notes, caregiver notebook), cultural/language inclusivity, accounting for polypharmacy in PwD, psychological support (support groups), and caregiver-focused co-created material, delivered through accessible (multi-modal) mechanisms, facilitated implementation • Removing/refining intervention components but maintaining program fidelity and efficacy (e.g., shortening length of sessions or duration of program iteratively) |
II. Outer setting | • Caregivers face time constraints, leading to underutilization of interventions, components within intervention unsuitable for users’ conditions • Scaling up is hindered by larger agencies’ complexity (e.g., Veteran Affairs), including size of organization, number of facilities, large catchment areas • Lack of diverse partnerships beyond aging network | • Collaborative agencies within regional network support implementation: leverage strengths of each separate agency, each have a role in implementation (e.g., training, staffing, analyzing outcomes), communication between initiators and community agency facilitated sustainment with local funding agency • Training and scaling-up were facilitated by external private company and academic institutions, embedding intervention as part of regular services within intermediary agencies supported scale-up, partnering with faith-based institutions supported engagement and recruitment • Legal reform in aging policy facilitates caregiver-oriented interventions, extending financial coverage and benefits to caregivers of PwD, interventions with government (state/municipality) recognition and support had more successful continuation and scale-up |
III. Inner setting | • Staff were unprepared (lack of dementia care training/competencies, unclear intervention budget plan, staff turnover, large caseloads, difficulties convincing staff of intervention value) • Poor fit between existing services/organizational capacity/culture (including allocating finances/infrastructure/human resources) and intervention components, workload credit and billing codes influenced implementation | • Staff/trainers received clear manual and instructions, refresher sessions were also provided, staff enthusiasm toward intervention facilitates continuation, sufficient time contracted to train staff and deliver intervention components • Administration must buy into the intervention, modifying interventions to fit organization infrastructure/resources and routine facilitates sustainability, good cultural fit between intervention and implementing agency |
IV. Characteristics of individuals | • Overburdened caregivers could not participate in interventions • Lack of trust in government-related institutions deterred participation • Trainer turnover hindered program maintenance, existing need for timely certification process | • Staff/counselor competency and personalized approach to care facilitated use • Sense of community ownership and culturally adapted intervention facilitated uptake and continuation |
V. Process | • Monitoring fidelity using video cameras is intrusive in naturalistic settings • Sustainment and continuation difficult due to staff turnover and user dropout • RCT results may not reflective of real-world demands and outcomes • Lack of dissemination and user recruitment, localized recruitment limited use and awareness | • Translating intervention to fit wider demographic; co-designing components with advisory committee and users to improve suitability • Exploring and engaging local partners facilitated implementation, dissemination, and scale-up, partnering with cross-sectoral agencies and leveraging individual strengths enhance outcomes, continuous promotion across implementation trajectory |