Developing a Memory and Communication App for Persons Living With Dementia: An 8-Step Process.
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ABSTRACT: International registered report identifier (irrid)
RR2-10.3928/19404921-20210825-02.
SUBMITTER: Brown EL
PROVIDER: S-EPMC10131779 | biostudies-literature | 2023 Mar
REPOSITORIES: biostudies-literature
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Developing a Memory and Communication App for Persons Living With Dementia: An 8-Step Process.
Brown Ellen L EL Ruggiano Nicole N Allala Sai Chaithra SC Clarke Peter J PJ Davis Debra D Roberts Lisa L Framil C Victoria CV Muñoz Maríateresa Teri Hernandez MTH Hough Monica Strauss MS Bourgeois Michelle S MS
JMIR aging 20230315
<h4>International registered report identifier (irrid)</h4>RR2-10.3928/19404921-20210825-02. ...[more]
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Project description:ObjectiveAs the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.MethodsWe conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads.ResultsThe groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships.ConclusionParticipants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers.InnovationLimited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.
| S-EPMC10828581 | biostudies-literature
Project description:IntroductionNearly half of all persons living with dementia (PLwD) will visit the emergency department (ED) in any given year and ED visits by PLwD are associated with short-term adverse outcomes. Care partner engagement is critical in the care of PLwD, but little is known about their patterns of communication with ED clinicians.MethodsWe performed a retrospective electronic health record (EHR) review of a random sampling of patients ≥ 65 years with a historical diagnosis code of dementia who visited an ED within a large regional health network between 1/2014 and 1/2022. ED notes within the EHRs were coded for documentation of care partner communication and presence of a care partner in the ED. Logistic regression was used to identify patient characteristics associated with the composite outcome of either care partner communication or care partner presence in the ED.ResultsA total of 460 patients were included. The median age was 83.0 years, 59.3% were female, 11.3% were Black, and 7.6% Hispanic. A care partner was documented in the ED for 22.4% of the visits and care partner communication documented for 43.9% of visits. 54.8% of patients had no documentation of care partner communication nor evidence of a care partner at the bedside. In multivariate logistic regression, increasing age (OR, (95% CI): 1.06 (1.04-1.09)), altered mental status (OR: 2.26 (1.01-5.05)), and weakness (OR: 3.38 (1.49-7.65)) significantly increased the probability of having care partner communication documented or a care partner at the bedside.ConclusionMore than half of PLwD in our sample did not have clinician documentation of communication with a care partner or a care partner in the ED. Further studies are needed to use these insights to improve communication with care partners of PLwD in the ED.
| S-EPMC10698392 | biostudies-literature
Project description:ObjectivesTo synthesize published research exploring emergency department (ED) communication strategies and decision-making with persons living with dementia (PLWD) and their care partners as the basis for a multistakeholder consensus conference to prioritize future research.DesignSystematic scoping review.Settings and participantsPLWD and their care partners in the ED setting.MethodsInformed by 2 Patient-Intervention-Comparison-Outcome (PICO) questions, we conducted systematic electronic searches of medical research databases for relevant publications following standardized methodological guidelines. The results were presented to interdisciplinary stakeholders, including dementia researchers, clinicians, PLWD, care partners, and advocacy organizations. The PICO questions included: How does communication differ for PLWD compared with persons without dementia? Are there specific communication strategies that improve the outcomes of ED care? Future research areas were prioritized.ResultsFrom 5451 studies identified for PICO-1, 21 were abstracted. From 2687 studies identified for PICO-2, 3 were abstracted. None of the included studies directly evaluated communication differences between PLWD and other populations, nor the effectiveness of specific communication strategies. General themes emerging from the scoping review included perceptions by PLWD/care partners of rushed ED communication, often exacerbated by inconsistent messages between providers. Care partners consistently reported limited engagement in medical decision-making. In order, the research priorities identified included: (1) Barriers/facilitators of effective communication; (2) valid outcome measures of effective communication; (3) best practices for care partner engagement; (4) defining how individual-, provider-, and system-level factors influence communication; and (5) understanding how each member of ED team can ensure high-quality communication.Conclusions and implicationsResearch exploring ED communication with PLWD is sparse and does not directly evaluate specific communication strategies. Defining barriers and facilitators of effective communication was the highest-ranked research priority, followed by validating outcome measures associated with improved information exchange.
| S-EPMC10802113 | biostudies-literature
Project description:Digital storytelling is a process that can be used to co-create multimedia stories with persons living with dementia to affirm identity, support person-centered care, and leave a legacy. Although digital storytelling typically involves a facilitator, little is known about the co-creation process between a facilitator and persons living with dementia. This study explored and described elements of digital storytelling facilitation with persons living with dementia using a secondary analysis of qualitative data from a primary study that took place across three Canadian cities. Three elements were identified during digital storytelling facilitation with persons living with dementia: communicating, building collaborative relationships, and using technology. Digital storytelling facilitators employ the three elements to weave together a person's narrative with meaning. The communication, relational, and technological elements of digital storytelling may be employed by facilitators from varying professional backgrounds and lived experiences to create meaningful digital stories for persons living with dementia.
| S-EPMC10084455 | biostudies-literature
Project description:BackgroundIt is essential to characterize communication patterns for better health outcomes for family caregivers and persons living with dementia.ObjectiveThis study aimed to examine the relationships between communication patterns and the characteristics of dyads of family caregivers and persons living with dementia.MethodsA secondary analysis was conducted using 75 video-recorded home care observations from 19 dyads. Participant characteristics and caregiver burden, depression, and sense of competence were collected from the parent study. The video-recorded dyadic communication patterns were assessed using a coding scheme developed based on Communication Accommodation Theory and Classical Test Theory. The relative frequency of the communication patterns was compared between groups.ResultsOverall, 8311 caregiver and 8024 care recipient communication behaviors were observed. Caregiver communication patterns were categorized as facilitative, disabling, and neutral. Care recipient communication patterns were categorized as engaging, challenging, and neutral. Caregiver gender, care recipient gender, care recipient education level, dementia diagnosis length, types of dementia, dyadic gender difference, burden, depression, and competence of caregiver, and types of communication were significantly associated with caregiver communication. Dementia diagnosis length, caregiver competence, dyadic gender difference, and types of communication were significantly associated with care recipient communication.ConclusionsThe findings demonstrated different communication patterns depending on individual and dyad characteristics and evidence for dyadic communication support to promote meaningful interaction for persons living with dementia. Further analysis is needed to identify mediating factors and causal relationships.
| S-EPMC10955794 | biostudies-literature
Project description:PurposeAdherence to antiretroviral therapy is essential to HIV management and sustaining viral suppression. Despite simplified regimens, adherence remains difficult for certain persons living with HIV (PLWH). There is evidence to support the use of mHealth apps for effective self-management in PLWH; however, a medication adherence app with real-time monitoring for this population has not been developed and rigorously evaluated by PLWH. We developed a mHealth app (WiseApp) for HIV self-management to help PLWH self-manage their health. The purpose of this study was to evaluate the usability of the WiseApp.MethodsWe conducted a three-step usability evaluation using 1) a traditional think-aloud protocol with end-users, 2) a heuristic evaluation with experts in informatics, and 3) a cognitive walkthrough with end-users. During the cognitive walkthrough, we tested two devices (fitness tracker and medication tracking bottle) that were linked to the WiseApp.ResultsThe think-aloud protocol informed iterative updates to the app, specifically to make it easier to see different sections of the app. The heuristic evaluation confirmed the necessity of these design changes. The cognitive walkthrough informed additional updates and confirmed that overall, the app and the linked devices were usable for the end-users.ConclusionThe results of the cognitive walkthrough with both experts and end-users informed iterative refinements to the WiseApp and finalization of a mHealth app for PLWH to better self-manage their health.
| S-EPMC6369913 | biostudies-literature
Project description:IntroductionInformation and communication technology (ICT) has emerged as promising to support health care consumers, including informal caregivers. This systematic review seeks to evaluate the state of the science of ICT interventions on the health of informal dementia caregivers.MethodsWe searched PubMed, CINAHL, Web of Science, and PsycINFO using concepts associated with ICT, dementia, and caregiver. Studies were assessed using the Quality Assessment Tool for Quantitative Studies.ResultsWe identified 657 full-text publications. After removal of duplicates and title, abstract, and full-text screening, the quality of 12 studies was assessed. Studies varied in technology, implementation, results, and intervention evaluation.DiscussionThe methodological quality of the ICT intervention studies among dementia family caregivers was moderate to strong, yet outcome measurement was not uniform. The evidence is strongest for various forms of telephone-based interventions. However, there is a need for research that includes heterogeneous participants based on gender, race, and ethnicity.
| S-EPMC6315277 | biostudies-literature
Project description:Language-based strategies are recommended to improve coherence, clarity, reciprocity, and continuity of interactions with persons living with dementia. Person-centered care is the gold standard for caring for persons with dementia. Person-centered communication (PCC) strategies include facilitation, recognition, validation, and negotiation. Little is known about which language-based strategies support PCC in home care. Accordingly, this study investigated the overlap between language-based strategies and PCC in home care interactions. Analysis of conversation of 30 audio-recorded interactions between personal support workers (PSWs) and persons living with dementia was conducted. The overlap between PCC and language-based strategies was analyzed. Of 11,347 communication units, 2578 overlapped with PCC. For facilitation, 21% were yes/no questions. For recognition, 25% were yes/no questions and 22% were affirmations. For validation, 81% were affirmations and positive feedback. Finally, 60% were yes/no questions for negotiation. The findings highlight the person-centeredness of language-based strategies. PSWs should use diverse language-based strategies that are person-centered.
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Project description:Objectives: While ways to reduce caregiver burden have dominated dementia care research, there is little understanding of daily communication and its relationship to caregiver burden and depression. In this study, we sought to: (1) describe the frequency of harsh communication used by caregivers; (2) examine the relationship between harsh communication, caregiver and person with dementia characteristics; and (3) determine the contributions of caregiver depression and burden on such communication.Method: Cross-sectional baseline data were drawn from 250 dyads, who participated in the Dementia Behavior Study (NCT01892579). Hierarchical linear regression models were used to examine the relationship between dyad characteristics and harsh communication scores (using the 6-item Negative Communication Scale), controlling for three groups of covariates: sociodemographic, relationship characteristics and health factors.Results: More than half of the caregivers (mean age = 65.4, 81.2% women, 45.6% spouses) reported they felt like screaming/yelling (N = 138, 55.2%) or used a harsh tone (N = 129, 51.6%) at persons with dementia (Mini Mental Status Examination mean = 14.3, SD: 7.8) at least sometimes. When controlling for all covariates, for each unit increase in caregiver burden, harsh communication increased by 0.486 units (p < 0.001); similarly, for each unit increase in caregiver depression, harsh communication increased by 0.301units (p < 0.001).Conclusion: Over half of dementia caregivers reported they felt like or used one or more harsh forms of communication. Caregiver burden and depression were incrementally associated with greater use of negative communication. Providing caregivers with knowledge, support and specific communication skills may lessen the frequency of harsh communication and possibly reduce burden and depression.
| S-EPMC7089818 | biostudies-literature
Project description:BackgroundDespite possible major adverse cognitive, physical, social, and behavioral consequences, little is known about how persons living with dementia perceive satisfaction with life, a key component of well-being. We sought to examine (i) whether persons living with dementia perceive a lower level of satisfaction compared to their peers without dementia and (ii) whether the associations between individual characteristics and life satisfaction are different between persons living with and without dementia.MethodsUsing a nationally representative sample of community-dwelling older adults aged ≥70 years in the U.S. from the Health and Retirement Study, we compared scores on the Satisfaction with Life Scale (SWLS), a self-reported 5-item scale ranging from 1 to 7 (more satisfaction), between persons with probable dementia (n = 341) and those without (n = 5530), adjusting for individual characteristics. We also tested whether the associations between the individual characteristics and SWLS differ by dementia status.ResultsScores on SWLS did not differ between persons with probable dementia and those without when adjusting for individual characteristics including limitations in activities of daily living (ADL) (adjusted difference, -0.09; 95% CI, -0.33 to +0.15; p-value, 0.45). However, dementia status was associated with lower life satisfaction through the mediation of limitations in ADL (total effect, -0.29; bootstrapped 95% CI, -0.47 to -0.12). Most individual characteristics associated with lower life satisfaction were similar in the two groups, including younger age, more limitations in ADL, and depression. Less wealth was associated with lower satisfaction among persons without dementia but not among those with probable dementia.ConclusionsDementia status was only modestly associated with lower life satisfaction through the mediation of limitations in ADL among participants who were able to provide response. Future research is warranted to determine whether life satisfaction can be used as a meaningful outcome when evaluating well-being among persons living with dementia.
| S-EPMC10089955 | biostudies-literature