Care to Plan: An Online Tool That Offers Tailored Support to Dementia Caregivers.
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ABSTRACT: Purpose of the study
Even with the advent of evidence-based interventions, an ongoing concern in clinical practice is how to help dementia caregivers determine what type of support is best for them absent a laborious process of trial and error. To help address this practice gap, the present study developed and tested the feasibility of "Care to Plan" (CtP), an online resource for dementia caregivers (e.g., relatives or unpaid nonrelatives) that generates tailored support recommendations.Design and methods
Care to Plan was developed using an iterative prototype and testing process with the assistance of a 29-member Community Advisory Board. A parallel-convergent mixed methods design (quan + QUAL) was used that included a post-CtP survey and a brief semistructured interview to capture in-depth information on the utility and feasibility of CtP. The sample included 30 caregivers of persons with dementia.Results
The integrated qualitative and quantitative data indicated that CtP was simple and easy to understand, the streamlined visual layout facilitated utility, and the individualized recommendations could meet the needs of users. Key barriers to use included the need for additional features (e.g., video introductions of caregiver support types) to further guide dementia caregivers' potential use of tailored support.Implications
The multiple data sources underscore the high feasibility and utility of CtP. By describing, identifying, and prioritizing support, CtP could help to improve the care planning process for dementia caregivers. Future dissemination efforts should aim to demonstrate how CtP can be implemented seamlessly within current family caregiver support systems.
SUBMITTER: Gaugler JE
PROVIDER: S-EPMC5181391 | biostudies-literature | 2016 Dec
REPOSITORIES: biostudies-literature
Publications
Care to Plan: An Online Tool That Offers Tailored Support to Dementia Caregivers.
Gaugler Joseph E JE Reese Mark M Tanler Richard R
The Gerontologist 20151123 6
<h4>Purpose of the study</h4>Even with the advent of evidence-based interventions, an ongoing concern in clinical practice is how to help dementia caregivers determine what type of support is best for them absent a laborious process of trial and error. To help address this practice gap, the present study developed and tested the feasibility of "Care to Plan" (CtP), an online resource for dementia caregivers (e.g., relatives or unpaid nonrelatives) that generates tailored support recommendations. ...[more]
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Project description:BackgroundInformal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes.MethodsThe study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol.DiscussionThis protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.Trial registrationClinicalTrials.gov, NCT04104568. Registered 26 September 2019.
| S-EPMC6950829 | biostudies-literature
Project description:BackgroundPersons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers' met and unmet needs and to describe their experience.MethodsThis is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers' Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together.ResultsThe mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver's attitude towards memory decline, their perception of community health services and of the family medicine practice.ConclusionsOur study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.
| S-EPMC8441033 | biostudies-literature
Project description:ObjectiveTo evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks.DesignRandomised controlled trial conducted between 1 September 2007 and 30 May 2008. Setting Four primary care clinics (two geriatric and two adult medicine) affiliated with three academic medical centres in Boston.ParticipantsConvenience sample of 200 older people (>or=65 years) living in the community with previously scheduled appointments at one of the clinics. Mean age was 75 and 58% were women.InterventionVerbal narrative alone (n=106) or with a video decision support tool (n=94).Main outcome measuresPreferred goal of care: life prolonging care (cardiopulmonary resuscitation, mechanical ventilation), limited care (admission to hospital, antibiotics, but not cardiopulmonary resuscitation), or comfort care (treatment only to relieve symptoms). Preferences after six weeks. The principal category for analysis was the difference in proportions of participants in each group who preferred comfort care.ResultsAmong participants receiving the verbal narrative alone, 68 (64%) chose comfort care, 20 (19%) chose limited care, 15 (14%) chose life prolonging care, and three (3%) were uncertain. In the video group, 81 (86%) chose comfort care, eight (9%) chose limited care, four (4%) chose life prolonging care, and one (1%) was uncertain (chi(2)=13.0, df=3, P=0.003). Among all participants the factors associated with a greater likelihood of opting for comfort care were being a college graduate or higher, good or better health status, greater health literacy, white race, and randomisation to the video arm. In multivariable analysis, participants in the video group were more likely to prefer comfort care than those in the verbal group (adjusted odds ratio 3.9, 95% confidence interval 1.8 to 8.6). Participants were re-interviewed after six weeks. Among the 94/106 (89%) participants re-interviewed in the verbal group, 27 (29%) changed their preferences (kappa=0.35). Among the 84/94 (89%) participants re-interviewed in the video group, five (6%) changed their preferences (kappa=0.79) (P<0.001 for difference).ConclusionOlder people who view a video depiction of a patient with advanced dementia after hearing a verbal description of the condition are more likely to opt for comfort as their goal of care compared with those who solely listen to a verbal description. They also have more stable preferences over time.Trial registrationClinicaltrials.gov NCT00704886.
| S-EPMC2688013 | biostudies-literature
Project description:BACKGROUND:Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE:The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS:A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS:Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS:The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION:Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/resprot.8365.
| S-EPMC7064946 | biostudies-literature
Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
| S-EPMC8076981 | biostudies-literature
Project description:Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior.MethodsA cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data.ResultsA total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min).ConclusionsThe Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals.
| S-EPMC9005959 | biostudies-literature
Project description:BACKGROUND:Given the increasing use of digital interventions in health care, understanding how best to implement them is crucial. However, evidence on how to implement new academically developed interventions in complex health care environments is lacking. This case study offers an example of how to develop a theory-based implementation plan for Partner in Balance, an electronic health (eHealth) intervention to support the caregivers of people with dementia. OBJECTIVE:The specific objectives of this study were to (1) formulate evidence-based implementation strategies, (2) develop a sustainable business model, and (3) integrate these elements into an implementation plan. METHODS:This case study concerns Partner in Balance, a blended care intervention to support the caregivers of people with dementia, which is effective in improving caregiver self-efficacy, quality of life, and experienced control. The large-scale implementation of Partner in Balance took place in local dementia case-management services, local care homes, dementia support groups, and municipalities. Experiences from real-life pilots (n=22) and qualitative interviews with national stakeholders (n=14) were used to establish an implementation plan consisting of implementation strategies and a business model. RESULTS:The main finding was the need for a business model to facilitate decision-making from potential client organizations, who need reliable pricing information before they can commit to training coaches and implementing the intervention. Additionally, knowledge of the organizational context and a wider health care system are essential to ensure that the intervention meets the needs of its target users. Based on these findings, the research team formulated implementation strategies targeted at the engagement of organizations and staff, dissemination of the intervention, and facilitation of long-term project management in the future. CONCLUSIONS:This study offers a theory-based example of implementing an evidence-based eHealth intervention in dementia health care. The findings help fill the knowledge gap on the eHealth implementation context for evidence-based eHealth interventions after the trial phase, and they can be used to inform individuals working to develop and sustainably implement eHealth.
| S-EPMC7380981 | biostudies-literature
Project description:BACKGROUND:Dementia has a huge physical, psychological, social and economic impact upon caregivers, families and societies at large. There has been a growing impetus to utilize Internet interventions given the potential scalability, and presumed cost-effectiveness and accessibility. In this paper, we describe the design of a randomized controlled trial (RCT) aiming to study the impact of online self-help programs on caregivers of people with dementia in India. The experimental group will receive an interactive training and support program and the comparison group will receive an education-only e-book. It will be among the first online support intervention RCTs for a mental health condition in a lower-middle income country. METHODS AND DESIGN:Two hundred and eight participants are expected to be recruited via several strategies (email, Internet and social media, telephone and face-to-face) starting in the Bangalore region of India. The inclusion criteria for participation in the trial are: (1) being 18 years or older, (2) being a self-reported caregiver of a person with dementia, (3) self-report that a family member has a diagnosis of dementia (AD8 ??2), and experience caregiver distress (??4 on a 1-item burden scale ranging from 1 to 10 or???4 or?<?20 on the Center for Epidemiologic Study-Depression (CES-D) scale (10-item) or???4 or?<?15 on the Generalized Anxiety Disorder Scale (7-item). The intervention group will be offered iSupport, an online self-help training and support program, enabling a personalized education plan with a maximum of 23 lessons. These modules present a range of topics from "what is dementia?" to "dealing with challenging behaviors like aggression." The comparison group will receive an education-only e-book containing similar content. The outcomes of this trial are: caregiver burden as measured by the 22-item Zarit Burden Scale, depressive symptoms, anxiety symptoms (primary outcomes), quality of life, person-centered attitude, self-efficacy and mastery (secondary outcomes). DISCUSSION:Based on the findings of this trial, we will examine the potential use and scale up of iSupport for caregiver distress in India. This style of online self-help programs could be expanded to other regions or countries or to other suitable caregiver groups. TRIAL REGISTRATION:Clinical Trials Registry-India (CTRI), ID: CTRI/2017/02/007876 .
| S-EPMC5941472 | biostudies-literature
Project description:The number of persons with dementia (PWD) in the United States is expected to reach 16 million by 2050. Due to the behavioral and psychological symptoms of dementia, caregivers face challenging in-home care situations that lead to a range of negative health outcomes such as anxiety and depression for the caregivers and nursing home placement for PWD. Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) is a multisite randomized controlled trial evaluating the effects of a telehealth intervention on caregiver well-being and PWD behavioral symptoms. The FamTechCare intervention provides individualized dementia-care strategies to in-home caregivers based on video recordings that the caregiver creates of challenging care situations. A team of dementia care experts review videos submitted by caregivers and provide interventions to improve care weekly for the experimental group. Caregivers in the control group receive feedback for improving care based on a weekly phone call with the interventionist and receive feedback on their videos at the end of the 3-month study. Using linear mixed modeling, we will compare experimental and control group outcomes (PWD behavioral symptoms and caregiver burden) after 1 and 3 months. An exploratory descriptive design will identify a typology of interventions for telehealth support for in-home dementia caregivers. Finally, the cost for FamTechCare will be determined and examined in relation to hypothesized effects on PWD behavioral symptoms, placement rates, and caregiver burden. This research will provide the foundation for future research for telehealth interventions with this population, especially for families in rural or remote locations.
| S-EPMC6003850 | biostudies-literature
Project description:BackgroundMultiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care.MethodsWe searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic.ResultsWe included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs.ConclusionThe COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.
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