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The Effectiveness of Psychoeducational and Financial Intervention to Support Caregivers of Individuals With Alzheimer's Disease in Poland.

ABSTRACT: Background and Objectives:The goal of this study is to create data-driven guidelines and tools for caregivers and health care professionals that will enable caregivers to be prepared for future caregiving-related challenges and decrease their levels of stress. Research Design and Methods:A total of 60 spousal caregivers of individuals with Alzheimer's disease (AD) living in Poland were recruited for this study. The participants were assigned to two different groups. The intervention group was provided with a five-session training focused on teaching coping strategies for managing difficult behaviors and provided with a stipend for a period of 6 months (a financial aid program recently launched by the local agency). A control group was not provided with any of the interventions but asked to complete the questionnaires. The effectiveness of each intervention was assessed at a baseline and 6 months after baseline evaluation. Results:Caregivers who received financial and educational training reported significantly decreased levels of depression and caregiver burden in comparison to the control group. The majority of caregivers emphasized that caregiving created financial problems and that their work has been underestimated by the government. Discussion and Implications:This project addresses several issues of central importance to the success of building research foundation for the interventions. The results have the potential of generating more efficient and personalized interventions that address the needs of the caregiver as they occur, leading to increased knowledge of AD and decreased levels of depression and caregiver burden.

SUBMITTER: Leszko M

PROVIDER: S-EPMC6677549 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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The Effectiveness of Psychoeducational and Financial Intervention to Support Caregivers of Individuals With Alzheimer's Disease in Poland.

Leszko Magdalena M

Innovation in aging 20190701 3

<h4>Background and objectives</h4>The goal of this study is to create data-driven guidelines and tools for caregivers and health care professionals that will enable caregivers to be prepared for future caregiving-related challenges and decrease their levels of stress.<h4>Research design and methods</h4>A total of 60 spousal caregivers of individuals with Alzheimer's disease (AD) living in Poland were recruited for this study. The participants were assigned to two different groups. The interventi ...[more]

PMID: 31392287

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Project description:Although several face-to-face programs are dedicated to informal caregivers of persons with dementia, they are not always accessible to overburdened or isolated caregivers. Based on a face-to-face intervention program, we adapted and designed a Web-based fully automated psychoeducational program (called Diapason) inspired by a cognitive approach.This study aimed to evaluate through a pilot unblinded randomized controlled trial the efficacy and acceptability of a Web-based psychoeducational program for informal caregivers of persons with Alzheimer's disease (PWAD) based on a mixed methods research design.We recruited and randomized offline 49 informal caregivers of a PWAD in a day care center in Paris, France. They either received the Web-based intervention and usual care for 3 months (experimental group, n=25) or only usual care (control group, n=24). Caregivers' perceived stress (PSS-14, primary outcome), self-efficacy, burden, perceived health status, and depression (secondary outcomes) were measured during 3 face-to-face on-site visits: at baseline, at the end of the program (month 3), and after follow-up (month 6). Additionally, semistructured interviews were conducted with experimental group caregivers at month 6 and examined with thematic analysis.Intention-to-treat analysis did not show significant differences in self-perceived stress between the experimental and control groups (P=.98). The experimental group significantly improved their knowledge of the illness (d=.79, P=.008) from baseline to month 3. Of the 25 participants allocated to the experimental group, 17 (71%) finished the protocol and entirely viewed at least 10 of 12 online sessions. On average, participants used the website 19.72 times (SD 12.88) and were connected for 262.20 minutes (SD 270.74). The results of the satisfaction questionnaire showed that most participants considered the program to be useful (95%, 19/20), clear (100%, 20/20), and comprehensive (85%, 17/20). Significant correlations were found between relationship and caregivers' program opinion (P=.01). Thus, positive opinions were provided by husbands and sons (3/3), whereas qualified opinions were primarily reported by daughters (8/11). Female spouses expressed negative (2/3) or neutral opinions (1/3). Caregivers expected more dynamic content and further interaction with staff and peers.In this study, quantitative results were inconclusive owing to small sample size. Qualitative results indicated/showed little acceptance of the program and high expectations from caregivers. Caregivers did not rule out their interest in this kind of intervention provided that it met their needs. More dynamic, personalized, and social interventions are desirable. Our recruitment issues pointed out the necessity of in-depth studies about caregivers' help-seeking behaviors and readiness factors.Clinicaltrials.gov NCT01430286; http://clinicaltrials.gov/ct2/show/NCT01430286 (Archived by WebCite at http://www.webcitation/6KxHaRspL).

Project description:The epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers, on whom the main burden of care falls, putting them at higher risk of stress, anxiety, mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients, through case management, counseling, training, technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home.A total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region, Italy, will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager, but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0), 6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden, measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period, defined as the number of days free from institutionalizations, hospitalizations and stays in an observation unit of an emergency room.The UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care, that is, the use of case management, new technologies, nurse home visits and efforts toward the integration of existing services in an ambitious holistic design. The analysis of different interventions is expected to provide sound evidence of the effectiveness and cost of programs supporting AD patients in the community.ClinicalTrials.gov: NCT01700556.

Project description:PurposeThis study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers.MethodsIn this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes.ResultsFive out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session.ConclusionsThe iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness.IMPLICATIONS FOR REHABILITATIONOur dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night.Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.

Project description:ObjectiveResearch on homicidal bereavement has focused on postloss impact and coping. Less is known about how individuals perceive their adjustment posthomicide. Adverse experiences are likely to leave individuals with an increased risk of developing severe psychological difficulties, such as depression, Post-traumatic stress (PTSD), anxiety and complicated grief. This study aimed to explore how individuals perceive their change and progression posthomicide and post-psychoeducational intervention.DesignSemistructured qualitative interviews were conducted both as part of a prospective study and retrospectively to allow for a longer follow-up period.SettingHomicidally bereaved individuals who participated in a residential psychoeducational intervention offered by a national charity (Escaping Victimhood (EV)).ParticipantsTwenty-nine individuals (mainly females) took part: 14 as part of a 6-9-month follow-up (short-term trajectory group (STG) individuals-mean age 45.25) and 15 individuals (long-term trajectory group (LTG) individuals-mean age 48.50), retrospectively, 2 to 5?years postintervention.ResultsInterviews were analysed using an inductive Thematic Analysis method. Three main themes and nine subthemes emerged, and applied to both groups, as follows: (1) actual changes perceived by the participants (increased understanding, improved coping strategies and positive self-change), (2) barriers to recovery (severe psychological difficulties over time, need for further support, reminders and close relationships with both victim and perpetrator), and finally perceived future progression (living day by day, hope and hopelessness). The only significant differences between the two groups related to the reported self-growth among LTG individuals and the perceived increased informal support among STG individuals by keeping in touch in other EV participants.ConclusionThis unique study provides insight into how homicidally bereaved individuals perceive their bereavement paths and helped to identify elements that appear to contribute for their adjustment. Importantly, it has highlighted that positive changes can also be an outcome.

Project description:IntroductionHalf of all patients with cancer experience cachexia, with the prevalence rising above 80% in the last weeks of life. Cancer cachexia (CC) is a complex relational experience that involves the patient-family dyad. There are no studies on the association between the psychoeducational component and the rehabilitative component of dyads for supporting more functional relationships in the management of CC.The primary objective of this study is to evaluate the feasibility of a psychoeducational intervention combined with a rehabilitative intervention on dyads.The secondary objective is to improve the quality of life (QoL) and acceptability of the intervention.Methods and analysisThis mixed-methods study with a nonpharmacological interventional prospective includes 30 consecutive cancer patients with cachexia and refractory cachexia and their caregivers, assisted by the Specialised Palliative Care Team. The recruitment will last 1 year. The intervention involves two components: (1) psychoeducational intervention: 3 weekly face-to-face consultations between dyads and trained nurses to help the dyads cope with involuntary weight loss and strengthening dyadic coping resources and (2) rehabilitation intervention: 3 biweekly educational sessions between dyads and trained physiotherapists focused on self-management, goal-setting, physical activity with three home exercise sessions per week.The primary endpoint will be in adherence to the intervention, indicated by a level of completion greater than or equal to 50% in both components. The secondary endpoints will be QoL (Functional Assessment of Anorexia-Cachexia Therapy), caregiver burden (Zarit Burden), physical performance (Hand-Grip strength and 30 seconds sit-to-stand test), and the acceptability of the intervention (ad hoc semi-structured interviews with the dyads and the healthcare professionals).Ethics and disseminationThe study was approved by the Ethics Committee Area Vasta Emilia Nord, Azienda USL-IRCSS Reggio Emilia, Italy, number: 73/2019/SPER/IRCCSRE. The authors will provide the dissemination of the results through publication in international scientific journals.Trial registration numberNCT04153019.

Project description:BackgroundWorldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy.MethodsWe will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver.DiscussionDIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare.Trial registrationRegistration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 .Date and version identifier20211209_DIAdIC_Protocol_Article.

Dataset Information

The Effectiveness of Psychoeducational and Financial Intervention to Support Caregivers of Individuals With Alzheimer's Disease in Poland.

Publications

The Effectiveness of Psychoeducational and Financial Intervention to Support Caregivers of Individuals With Alzheimer's Disease in Poland.

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