Interventions For Caregivers Research Articles

Correction: Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities

Correction: Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities

Teachers' needs for an FASD-informed resource: a qualitative interview needs assessment based on the ADAPT-ITT framework.

Fetal alcohol spectrum disorders (FASD) represent a wide range of neurodevelopmental differences associated with prenatal alcohol exposure and are highly prevalent. The current study represents the initial stages in adapting the Families Moving Forward (FMF) Program, an evidence-based behavioral consultation intervention for caregivers of children with FASD, to a website for teachers. To understand teachers' needs and preferences for an FASD-informed intervention website and to assess the goodness of fit of the FMF Program to teachers and the school setting. Twenty-three teachers with experience teaching students with FASD were interviewed. Interviews were conducted via Zoom and lasted about 53 minutes on average. Data were transcribed verbatim and analyzed using qualitative content analysis in Dedoose. Three overarching themes represented teachers' needs for an FASD-informed resource: teachers need evidence-based FASD information and strategies, teachers have very little extra time, and the needs of special and general education teachers vary. Teachers were positive about the concepts of the FMF Program and felt they would have good fit. Teachers need an evidence-based FASD-informed intervention that is easy to use, concise, and responsive to varying needs and levels of experience. Results will inform the adaptation process of the FMF Program.

Multiphase optimization of a multicomponent intervention for informal dementia caregivers: a study protocol

BackgroundFamily caregiver interventions are essential to support dementia caregiving. However, such interventions are typically complex and consist of multiple components. Existing evidence rarely delineates the effectiveness and interactions between individual components. To optimise intervention, we adopt the multiphase optimisation strategy (MOST) to test the implementation fidelity and determine the effect of each component and the interactions between each component and the corresponding outcome.MethodsA prospective, assessor-blinded, randomised clinical trial with fractional factorial design using the MOST principle. Two hundred fifty family dementia caregivers will be randomised to one of 16 experimental conditions in a fractional factorial design involving six intervention components: (1) dementia and caregiving education; (2) self-care skills; (3) behavioural symptom management; (4) behavioural activation; (5) modified mindfulness-based cognitive therapy; and (6) support group. The first one is the core component, and the five remaining will be examined. Physical health, caregiver burden, stress, psychological well-being, anxiety and depressive symptoms, and social support will be assessed over the 12-month study period. Following the intention-to-treat principle, linear mixed models and regression analyses will be used to examine the specific effect of the five components and their two-way interactions to propose the most effective combination.DiscussionThis is the first study adopting the multiphase optimisation strategy to identify the most active and engaging components of a psychological intervention for caregivers of patients with dementia. In view that dementia caregiver interventions are increasingly diversified and complex, such knowledge is important to maximise the intervention efficacy and allow the intervention to be implemented within an efficient timeframe and dosage. The optimisation of caregiver support interventions is critical to enhance the health outcomes of caregivers and care recipients, thereby, delaying possible institutionalisation and reducing the costs of long-term dementia care.Trial registrationThis study was retrospectively registered in the WHO Primary Registry – Chinese Clinical Trials Registry (ChiCTR2300071235). (Protocol date 30/10/2020; version identifier 2020–2021-0045). Registered on 9 May, 2023.Reporting methodSPIRIT guideline was followed.Patient or public contributionNo patient or public involvement.

Strategies implemented by informal caregivers to facilitate self-care in patients with chronic obstructive pulmonary disease (COPD): a scoping review protocol.

Chronic obstructive pulmonary disease (COPD) is a disease characterized by persistent respiratory symptoms and airflow limitation. COPD is a significant social and economic burden, and hospital admissions contribute to increased costs. Informal caregivers play a crucial role in supporting COPD patients in their self-care efforts. Therefore, understanding informal caregiver interventions to improve self-care may be helpful in reducing hospitalizations. This is the protocol for a scoping review that aims to map the literature on informal caregiver interventions to facilitate self-care in COPD patients. What are the strategies implemented by informal caregivers to facilitate self-care for patients with COPD? The review will adhere to the methodology outlined by the JBI. A comprehensive search strategy will be executed in PubMed, CINAHL, Embase, Web of Science, Scopus, Cochrane, and PsycINFO. Additionally, grey literature and relevant unpublished documents will be searched to minimize publication bias. Studies describing strategies/actions implemented by informal caregivers to promote self-care in COPD patients from all countries will be included. We will exclude abstracts, editorials, articles on paid caregivers and social and healthcare workers. Two independent reviewers will screen titles, abstracts, and full-text articles based on inclusion criteria. Key data from the selected studies will be extracted using a predefined data extraction table. The results will be aggregated into themes and described qualitatively, figures and graphs may also be presented. The results will be presented according to the PRISMA-ScR. Open Science Framework https://doi.org/10.17605/OSF.IO/4TWRM.

A Dyadic Behavioral Sleep Intervention Program for Persons Living With Dementia and Their Family Caregivers: A Pilot Randomized Controlled Trial

AbstractBackgroundUntreated sleep problems in persons living with dementia (PLWD) and their caregivers impact health outcomes of both individuals and impair quality of care for caregivers. This study pilot tested preliminary effects of a dyadic sleep intervention program among this group.MethodThirty PLWD/caregiver dyads were randomized to a 5‐session treatment (n = 15 dyads) or a similarly structured information‐only control group (n = 15 dyads) via in‐person or video‐telehealth. Treatment was a manual‐based program incorporating key components of cognitive behavioral therapy for insomnia (CBTI), daily light exposure and walking, and a problem‐solving approach for dementia‐related behaviors and caregiving challenges. Sleep outcomes included actigraphy‐measured sleep efficiency (SE) and total awake time (TWT) at night for dyads, and Pittsburgh Sleep Quality Index (PSQI) for caregivers. Outcomes were measured at baseline, post‐treatment, and 3‐months follow‐up (main outcome time point). Recommendation adherence in the treatment group was computed and a 2 (group) by 3 (time) mixed model analysis of variance was used to test the treatment effects (p<0.20 as the threshold).ResultTwo dyads in treatment and one control dyad did not complete all five sessions. Of 13 dyads who completed all sessions of the treatment program, average % days that the dyads met their sleep schedules were 76% bedtime and 83% get‐up time for PLWD and 81% bedtime and 68% get‐up time for caregivers. From baseline to 3‐month follow‐up, SE increased by 3.2% more for PLWD in the treatment group (n = 9) compared to control (n = 9, p = 0.48) and by 3.7% more for caregivers in the treatment group (n = 12) compared to control (n = 9, p = 0.17). TWT also reduced by 19 minutes more for PLWD and 14 minutes more for caregivers in the treatment group compared to control at the 3‐month follow‐up although this was not statistically significant. Caregivers in treatment also showed non‐significant improvement on the PSQI (p>0.20).ConclusionA dyadic approach to sleep improvement showed evidence of benefit among PLWD and caregivers. A larger study is needed to fully evaluate these effects and compare in‐person to telehealth modalities.

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

ObjectivesThis study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.DesignScoping review, reported according to...

Helping Carers to Care: feasibility of the 10/66 Dementia Research Group caregiver intervention in rural Benin

AbstractBackgroundIn sub‐Saharan Africa, the number of people living with dementia is expected to double every 20 years, from 2.7 to 7.6 million. The shortage of trained health professionals leads family members of older people living with dementia to provide informal care. However, lack of knowledge and understanding about dementia leads to difficulties. There is therefore an urgent need to develop interventions to improve the lives of people with dementia and their families in this region. The objective of this study was to determine the feasibility of the Helping Carers to Care (HC2C) caregiver intervention in rural Benin.MethodThis was a before‐and‐after quasi‐experimental study conducted from January to December 2022 in Djidja‐Abomey‐Agbangnizoun, Benin. Two groups of 30 dyad (caregiver / person with dementia) were to receive the intervention in the beginning of the trial or six months later. The intervention consisted of three modules: 1) assessment; 2) basic education about dementia; and 3) training regarding specific problem behaviors. Main outcome measures for caregivers and patients with dementia were assessed at baseline, at 3‐month and at 6‐month. For caregivers, measures included strain (Zarit Burden Interview), psychological distress (SRQ‐20), and quality of life (WHOQOL‐BREF). Dementia participants completed scales assessing behavioral and psychological symptoms (NPI‐Q) and quality of life (DEMQOL).ResultThe study population consisted of 22 elderly people living with dementia and their primary caregiver divided into two groups ‐ control and intervention ‐ of 11 dyads. Both groups were similar with regards to sex, education, marital status, occupation, dementia severity but people in the control group were older. Participation rate was 100% and most of them found the intervention beneficial and advisable to others in the same situation. Full description of the outcomes and group differences at different times will be presented in details.ConclusionThe need for such intervention among the families of people living with dementia in Benin is obvious. Preliminary results show that implementation is challenging in rural Benin, where dementia awareness is low and care structures are lacking. These results will add to the scarce evidence on feasibility and benefits of caregiver interventions in low‐and middle‐income countries.

Implementation and dissemination of home and community‐based interventions for informal caregivers of people living with dementia: A systematic scoping review

AbstractBackgroundInformal caregivers of people with dementia (PwD) living at home are often the primary source of care, and, in their role, they often experience loss of quality of life. Implementation science knowledge is needed to optimize the real‐world outcomes of evidence‐based interventions (EBIs) for informal caregivers. This scoping review aims to systematically synthesize the literature that reports implementation strategies employed to deliver home‐ and community‐based EBIs for informal caregivers of PwD, implementation outcomes, and the barriers and facilitators to implementation of these EBIs.MethodsEmbase, MEDLINE, Web of Science and Cochrane Library were searched from inception to March 2021; included studies focused on “implementation science”, “home‐ and community‐based interventions” and “informal caregivers of people with dementia”. Titles and abstracts were screened using ASReview (an innovative AI‐based tool for evidence reviews) and data extraction was guided by the ERIC taxonomy, the Implementation Outcome Framework, and the Consolidated Framework for Implementation Science Research; each framework was used to examine a unique element of implementation.Results67 studies were included in the review. Multi‐component (26.9%) and eHealth (22.3%) interventions were most commonly reported, and 31.3% of included studies were guided by an implementation science framework. Training and education‐related strategies and provision of interactive assistance were the implementation strategy clusters of the ERIC taxonomy where most implementation strategies were reported across the reviewed studies. Acceptability (82.1%), penetration (77.6%) and appropriateness (73.1%) were the most frequently reported implementation outcomes. Design quality and packaging (intervention component suitability) and cosmopolitanism (partnerships) constructs, and patient’s needs and resources and available resources (infrastructure) constructs as per the CFIR framework, reflected the most frequently reported barriers and facilitators to implementation.ConclusionCurrent studies focused largely on intervention outcomes rather than implementation outcomes and lacked detailed insights on inner and outer setting determinants of implementation success or failure. Future dementia studies must prioritize implementation science for more contextually relevant findings and structurally examine the mechanisms through which implementation partners can strategically leverage existing resources and regional networks to streamline local implementation. Mapping local evidence ecosystems will facilitate structured implementation planning and support implementation‐focused theory‐building.

Perceived Stress and Mindfulness : A Review of Baseline Data for the Practice of Acceptance, Awareness, and Compassion in Caregiving (PAACC) Study

AbstractBackgroundAs the prevalence of dementia in Veterans is predicted to increase three‐fold in the coming decades, the Veterans Health Administration has made empowering informal caregivers a top priority. Current evidence‐based caregiver interventions, such as Resources for Enhancing All Caregivers Health (REACH‐VA), focus on cognitive and behavioral strategies to lessen caregiver burden. The Practice of Acceptance, Awareness, and Compassion in Caregiving (PAACC) incorporates mindfulness as the main mechanism for reducing caregiver strain. The goal of this intervention is to help caregivers develop increased present‐focused acceptance and awareness of their reactivity to care‐related stressors rather than focus on aspects of care they cannot change.MethodThe study enrolled 127 dementia caregivers with moderate to severe levels of caregiver burden who were randomized to either cognitive behavior based(REACH‐VA) or mindfulness based(PAACC) support intervention. Study assessed caregivers for stress levels, perceived stress, rumination as well as mindfulness using validated questionnaires.ResultsThe mean age of caregivers was 68yrs, with 85% being females and spouses of individuals with dementia. Nearly 75% of the sample have greater than a high school education. Regression analysis of baseline data showed that perceived stress was negatively correlated and associated with mindfulness disposition (b = ‐1.11, p<0.001, R‐square = 0.32). Caregivers benefited from the mindfulness based strategies, and experienced increased acceptance of their caregiver role and greater compassion toward their relative living with dementia.ConclusionWe project that mindfulness will reduce the impact of the perceived stress and rumination, which is often associated with dementia caregiving and improve quality of life for both individual with dementia and their caregivers.

Cultural adaptation of a mobile caregiver intervention application for Hispanic caregivers of persons with dementia (PWD)

AbstractBackgroundFamily caregivers for persons with dementia (PWD) in the U.S. who identify as part of a racial or ethnic minority group experience higher levels of depression, receive less support from home and community‐based services, and often cannot access services in their primary language. The Alzheimer’s Association has recommended that proven interventions be adapted to address the needs of informal caregivers from different racial and ethnic backgrounds. Although several clinical interventions have been developed with promising results to improve the overall caregiving experience of PWD, the effectiveness of current interventions for Hispanic caregivers of PWD are unclear. Mobile, technology‐based interventions may address specific needs of Hispanic caregivers of PWD such as providing at home access to culturally tailored interventions, but current mobile caregiver interventions do not sufficiently consider equity factors. In the current study, we will culturally adapt an existing, validated, mobile caregiving intervention app for Hispanic caregivers of PWD using an equity focused framework.MethodBrain CareNotes was guided by the NIH Stage Model for Behavioral Intervention Development and is a secure mobile telehealth application for informal caregivers to manage behavioral and psychological symptoms of dementia (BPSD) with the aid of a remote care coach. To culturally adapt this intervention, we will addresses stage 0 – 1 of the NIH Stage Model and apply a previously developed equity framework, PROGRESS‐Plus, which identifies specific cultural factors (i.e. Place of Residence, Race/ethnicity, etc) that should be considered in the development of equity focused interventions. We will qualitatively identify specific PROGRESS‐Plus needs that are insufficiently met among Hispanic caregivers of PWD through semi‐structured interviews. We will incorporate this information in the modification of Brain CareNotes, which will be made using a participatory co‐design methodology. Two groups of n = 5 Hispanic English and Spanish speaking caregivers of PWD will participate in five co‐design sessions to adapt the intervention to meet identified PROGRESS‐plus related needs. The adapted intervention will then be pilot tested.ResultDescription of this ongoing study will be presented.ConclusionThis will result in an extensible framework for modifying and culturally tailoring other previously developed caregiver interventions for ethnic minority groups.

Prevalence of Dementia in a Diverse Cohort of Adults with Hip Fracture

AbstractBackgroundThere is a 2.5‐fold increased risk of hip fracture for persons living with dementia compared to persons without dementia. Independently, the risk of hip fracture and Alzheimer’s Disease and Related Dementias (ADRD) increase with age and vary by sex and race and ethnicity. However, few studies have examined racial and ethnic variations in dementia prevalence among older US adults who experienced a hip fracture.MethodThis retrospective observational cohort study included adult health plan members aged ≥50y in a large Northern California healthcare system during 2000‐2019 who had a hip fracture event during follow‐up to 2021. ADRD diagnosis (ICD‐9/10) was obtained from clinical encounters within 5 years prior to and including the hip fracture hospitalization. Modified log‐Poisson regression models were performed with ADRD as the outcome and race and ethnicity as the primary predictor, adjusting for age and sex. Sensitivity analyses expanded the definition of prevalence of ADRD to include ADRD diagnoses up to 3 months after hip fracture.ResultAmong 46,622 adults with hip fracture (mean age 80.6 ± 9.9y, 69.7% female, 78.8% non‐Hispanic White (NHW) race), ADRD prevalence was 21.0% based on diagnoses prior to and during hip fracture hospitalization, increasing to 24.2% when including diagnoses within 3 months post‐hip fracture. ADRD prevalence was significantly higher in Black (29.2%), Hispanic (22.5%), and Asian (22.0%) adults compared to NHW (20.3%) adults. Expanding the definition found similar observations except no significant differences for Hispanic and Asian adults (see Figure). Adjusting for age and sex, Black (RR = 1.47, 95%CI 1.35‐1.59), Hispanic (RR = 1.15, 95%CI 1.07‐1.24) and Asian adults (RR = 1.12, 95% CI 1.04‐1.21) had greater risk of prevalent ADRD compared to NHW adults. Sensitivity analysis results were similar.ConclusionAt least 1 in 5 adults with hip fracture had diagnosed ADRD, with higher prevalence among racial and ethnic minority populations. Age‐ and sex‐adjusted risk was highest in Black adults and modestly higher in Hispanic and Asian adults. Hip fractures and ADRD are serious public health concerns leading to increased morbidity and mortality, and understanding differences among high risk groups will aid in the development of socially appropriate patient and caregiver interventions.

Relational, Community Dementia Care for All: Observations and Lessons from On‐Reservation Providers, Administrators, and Formal Caregivers in the US and Canada

AbstractBackgroundResearch with Indigenous populations in North America has consistently demonstrated divergent views on caregiving for people living with dementia (PLWD) compared to Western biomedical approaches. Few studies to date have applied strengths‐based approaches and, as a result, an Indigenous caregiving framework appropriate for on‐reserve/reservation populations has yet to be created. In this paper we share research findings that can be used to initiate strategies for culturally appropriate, sustainable, and supported care strategies for Indigenous PLWD.MethodWe used a community‐based participatory approach to conduct ethnographic research in a culturally safe way among four Indigenous communities in the US and Canada. Community‐based researchers conducted key informant interviews with dementia administrators and providers (n = 35), and sequential focus groups with local health care staff/formal caregivers that work with Indigenous older adults (14 sessions, n = 17). Data were coded in QSR NVivo and analyzed using a phenomenological framework.ResultParticipants described numerous assets available to Indigenous communities that can help PLWD age in place, based in a wholistic orientation. Main qualitative themes emerging from the analysis include: the need for wholistic models of care; the value and importance of family caregiving; the role of social/community support; the value of caring for the PLWD in the home for as long as possible; and the need for community services to support caregivers. Indigenous values, past experiences with health systems/colonization, and lived experiences of dementia were important underlying factors informing an Indigenous caregiving framework appropriate for on‐reserve/reservation populations.ConclusionWestern models of caregiving for PLWD, especially the eventual placement of PLWD in care facilities, do not fit with Indigenous value systems and teachings. Relational, family, and community‐based care is a culturally appropriate form of care for most elders in Indigenous communities. This model will be most effective when culturally appropriate community support services such as personal support and home care nursing services, as well as adequate respite, are included. Further research with family caregivers and PLWD will be necessary to further our understanding of this Indigenous care model and together with this study will form the basis for a community‐based caregiving intervention.

ISupport Swiss: a community based participatory approach to culturally adapt the WHO online intervention for family caregivers of people with dementia

Objective:Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.Methods:We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.Results:Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.Conclusion:Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.

Blended web-based Acceptance and Commitment Therapy for Informal Caregivers of people with dementia (ACT-IC study): Result of social health aspects

Objective:Numerous e-health programs have shown the potential to enhance psychological and social health outcomes in informal caregivers of People with Dementia (PwD). However, there is still a need for evidence-based interventions tailored to the specific needs of this population, such as maintaining self-management and participating in meaningful activities. This mixed-methods study aims to evaluate the feasibility, acceptability, and preliminary effectiveness of a blended intervention based on acceptance and commitment therapy for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials.Method:A single-arm clinical trial design is conducted. A total of 20 informal caregivers of PwD are recruited through memory clinics and social media platforms in the Netherlands. The ACT-IC intervention is delivered over a 9-week period and consists of a collaborative goal-setting session, nine online modules, and nine telephone-based motivational coaching sessions. Feasibility and acceptability are assessed using the attrition rate, adherence to, and engagement with the intervention, the proportion of missing data, and semi-structured interviews. Clinical outcome measures assess depression, anxiety, stress, sense of competence, burden, and self-efficacy at baseline and post-intervention.Results:Data collection will be completed by May 2023, and analyses are ongoing. Of the 20 caregivers, 19 completed the baseline assessment, and 3 dropped out. Results of an ANOVA investigating the effect of ACT-IC on the outcome measures at post-intervention will be reported, as well as the results of post-hoc analyses that explored the effect on outcomes of goal attainment and meaningful activities, observed use of the website, and reported adherence to the recommended frequency of website use.Conclusion:The result will contribute to the need for further research on supportive e-health interventions for informal caregivers of PwD. The ACT-IC study is the first trial to apply an evidence-based blended approach to address and evaluate the specific shared needs of caregivers. The mixed-method approach may offer a better understanding of reasons for dropouts, as well as barriers and facilitators that informal caregivers experience over the course of the intervention. Furthermore, social interaction (telephone-based motivational coaching) might improve the feasibility and acceptability of the online ACT intervention.

Advancing pressure ulcer prevention: evaluating the impact of patient and lay carer education.

Decubitus ulcers, also known as bed ulcers or pressure ulcers, result from prolonged pressure on the skin, with contributing factors such as shear forces, friction and excessive moisture. Pressure ulcers have significant physical, social and psychological consequences for patients and impose a substantial financial burden on healthcare providers. Patient and caregiver education has been suggested as a potential approach for preventing pressure ulcers. In order to investigate the potential preventive impact, O'Connor et al (2021) conducted a Cochrane systematic review. Their study aimed to assess the effectiveness of educational interventions for patients and caregivers in preventing pressure ulcers. This commentary aims to critically appraise the methods used within the Cochrane systematic review by O'Connor et al (2022) and expand on the findings in the context of clinical practice.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their...

The Evaluation on the Challenges of Current Assessment Tools Measuring Caregiver Intensity

AbstractBackgroundFamily members caring for individuals with Alzheimer’s disease demonstrate higher levels of burden and stress than other caregivers. Caregiver intensity is characterized as the number of tasks and hours caregivers care for the recipient and, as a construct, has demonstrated a more comprehensive assessment of the caregiver experience. Furthermore, because caregiver experience is intertwined within the patient journey, current measures of caregiver burden/intensity do not encapsulate the full construct as described and can be difficult to administer in real world settings.ObjectiveThis session reviews and evaluates current assessment tools measuring caregiver intensity/burden, gaps in measurement, methodology used to implement these measures, associated health economic outcomes, and challenges implementing these measures.MethodsA systematic review of the current assessment tools including the Zarit Burden Interview‐S, Caregiver‐Perceived Burden Questionnaire, Caregiver Burden Scale and the Caregiver Burden Inventory. Domains within each measure, length and burden to respondent and associated outcomes will be assessed.ResultsCurrent measures of caregiver burden/intensity have strengths and limitations in their use. Some do not fully capture the caregiver burden/intensity construct, are limited to a single domain, and exclude recipient progression.ConclusionThe inadequate nature caregiver intensity/burden measurement suggests the construct and its associated clinical, psychosocial, and economic outcomes are likely underreported. The practicality of implementing lengthy and complex measures in a real‐world setting is challenging. Unique approaches that include the intensity of caregiver experience, the patient and caregiver as a “dyadic patient” navigating the patient journey, and multiple domains (financial, social, physical etc.) should be considered. This would provide meaningful information when designing and implementing both caregiver and patient interventions.

P113: Psychosocial interventions for dementia grief- a systematic review

Objective:Dementia grief can be described as a caregiver’s anticipatory grief experience due to losses occurring before the care recipient’s physical death. Among other things, these losses can include loss of memory, intimacy, communication, relationship resolution, and family identity. Psychosocial interventions have been developed to address and reduce these pre-loss grief reactions. The objective of this systematic review was to synthesize the evidence on existing dementia grief interventions for caregivers of persons with dementia (PwD).Methods:Electronic databases Web of Science (SSCI), PsycArticles, Psychology and Behavioral Sciences Collection, PsycINFO, PSYNDEX Literature with PSYNDEX Tests and MEDLINE were searched from September 2016 to September 2021. The systematic review was carried out following PRISMA guidelines and it was registered to the PROSPERO database (CRD42021268998). All adult family or friend carers of older persons with dementia were included. All types and severity stages of dementia were included except studies about young onset dementia and dementia grief. Also, family carers could not be bereaved.Results:The 12 included studies contained multifaceted interventions with heterogenous formats. Eight studies had a quantitative, two a qualitative and two a mixed method design. Sample size ranged from two to 273 participants. Interventions included elements of psychoeducation, cognitive and emotional therapeutic strategies based on CBT, acceptance- based and mindfulness-based strategies. The interventions showed statistically significant small to moderate effects on dementia grief. In addition to the effects on dementia grief, the interventions also had a positive impact on mental health-related variables such as burden, depression, empowerment, and resilience.Conclusion:There has been an increase in dementia grief interventions suggesting that dementia grief has been acknowledged as a valid and important construct to describe the dementia caregiver experience. It remains unclear whether health care providers know about and implement elements of the grief interventions in every day clinical encounters with dementia caregivers. Thus, future research should determine the practicing health care providers’ knowledge about dementia grief and its available interventions. Furthermore, it should be examined whether the intervention effects are transferable to caregivers of patients with other terminal illnesses or degenerative disorders, or whether they must be modified.