Health System, Community-Based, or Usual Dementia Care for Persons With Dementia and Caregivers

JAMA, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 29, 2025

Importance The effectiveness of different approaches to dementia care is unknown. Objective To determine the health system–based, community-based care, and usual for persons with caregiver outcomes. Design, Setting, Participants Randomized clinical trial community-dwelling living their caregivers conducted at 4 sites in US (enrollment June 2019-January 2023; final follow-up, August 2023). Interventions were randomized 7:7:1 system–based provided by an advanced practice specialist (n = 1016); a social worker, nurse, or licensed therapist consultant 144). Main Outcomes Measures Primary outcomes caregiver-reported Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score (range, 0-36; higher scores, greater behavioral symptoms severity; minimal clinically important difference [MCID], 2.8-3.2) Modified Caregiver Strain Index 0-26; strain; MCID, 1.5-2.3). Three secondary included self-efficacy 4-20; more self-efficacy). Results Among 2176 dyads (individuals dementia, mean age, 80.6 years; 58.4%, female; 20.6%, Black Hispanic; caregivers, 65.2 75.8%, 20.8% Hispanic), primary assessed than 99% participants, 1343 participants (62% those enrolled 91% still alive had not withdrawn) completed study through 18 months. No significant differences existed between 2 treatments vs Overall, least squares means (LSMs) NPI-Q scores 9.8 system, 9.5 community-based, 10.1 care. system was 0.30 (97.5% CI, −0.18 0.78); −0.33 −1.32 0.67); −0.62 −1.61 0.37). LSMs 10.7 10.5 10.6 0.25 −0.16 0.66); 0.14 −0.70 0.99); −0.10 −0.94 0.74). Only outcome significantly both but treatments: 15.1 15.2 14.4 (95% −0.37 0.06); 0.70 0.26-1.14); 0.85 0.42 1.29). Conclusions Relevance In this programs, no interventions nor either active intervention regarding patient strain. Trial Registration ClinicalTrials.gov Identifier: NCT03786471

Language: Английский

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Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal Based Intervention (Preprint)

JMIR Research Protocols, Journal Year: 2025, Volume and Issue: 14, P. e66708 - e66708

Published: Jan. 6, 2025

In the United States, landscape of unpaid care delivery is both challenging and complex, with millions individuals undertaking vital role helping families (broadly defined) manage their health well-being. This includes 48 million caregivers adults, 42 whom are adults aged 50 years or older. These family partners provide critical often daily support for tasks such as dressing bathing, well managing medications, medical equipment, appointments, follow-up plans. study aimed to implement a novel patient portal-based intervention identify, engage, in clinical settings. The project team collaborated 3 organizations (6 primary practices total) design intervention. Three days advance visit, patients were invited log on portal account answer brief questionnaire part routine electronic check-in process asking them (1) identify themselves someone answering patient, (2) report major life changes, (3) set agenda upcoming (4) partner responsibilities. Respondents' answers this available providers ahead visit. Patients responsibilities, behalf patients, provided link ARCHANGELS Caregiver Intensity Index measure intensity caregiving motivate connect suggested state local resources. was launched September 2022 at Organization A. B May 2023 one clinic June other. focus groups, staff clinicians reported that easy did not cause workflow disruption. At 6 months post implementation, across organizations, total 22,152 had received questionnaires 13,825 (62.4%) submitted completed questionnaires. Full data will be completion period. Early results suggest could an easily scalable adaptable method identifying supporting DERR1-10.2196/66708.

Language: Английский

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Alzheimer’s Disease and Related Dementias in Muslim Women: Recommendations for Culturally Sensitive Care

Journal of Alzheimer s Disease, Journal Year: 2024, Volume and Issue: 99(3), P. 857 - 867

Published: May 14, 2024

Alzheimer’s disease and related dementias (ADRD) present significant challenges including cognitive functional loss, behavioral disruption, emotional distress, financial burden. These stressors are amplified in minority groups, who experience higher rates of ADRD but less frequent later diagnosis. There is therefore a critical need to identify tangible approaches culturally informed dementia assessment care for patients from diverse communities. Muslim particularly women among the populations most understudied space. may hold unique religious, spiritual, cultural beliefs practices that can impact care-seeking symptoms, diagnostic accuracy, treatment uptake. This paper outlines assessing treating families at each stage care, though many recommendations extend broader community others racial-ethnic backgrounds. We provide concrete suggestions building rapport within leveraging common family structures, respecting principles modesty privacy all those observe hijab or niqab, communicating diagnosis context spiritual ethical beliefs. While not intended as comprehensive prescriptive guide, this review provides important points consideration discussion with

Language: Английский

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Sentiment Dynamics Among Informal Caregivers in Online Alzheimer’s Communities: A Systematic Analysis of Emotional Support and Interaction Patterns (Preprint)

Published: April 29, 2024

Alzheimer's disease and related dementias (ADRD) is a growing global health challenge. ADRD places significant physical, emotional, financial burdens on informal caregivers negatively affects their well-being, particularly mental well-being. Online social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how online might influence We examine the dynamics sentiment, one major indicator among in communities, specifically sentiment changes they participate caregiving experience discussions within two communities. collected data from large ALZConnected TalkingPoint, covering November 2011 to August 2022, March 2003 respectively. Using Valence Aware Dictionary Sentiment Reasoning (VADER) Linguistic Inquiry Word Count (LIWC), we calculated scores each post evaluated initial topic initiator evolves discussion thread. Structured modeling regression analysis were used identify primary topics that consistently associated with threads. investigated longitudinal trends patterns sentimental stability or enhancement due prolonged engagement communities by plotting linear interpolation lines values individual user. The dataset was composed 532,992 posts, consisting 57,641 threads 475,351 comments. TalkingPoint 846,344 81,068 765,276 Our research revealed initiators experienced notable increase positive engaged subsequent threads, uptick positivity short term. This phenomenon part broader trend steadily rising across both structured modeling, cataloged diverse range included emotional aspects, such family emotions (5.4%), practical concerns, like diagnosis treatment (6.9%), everyday care practices (4.5%). observed positively aligned about daily routines life (coefficient 3.53, p<0.0001), while illness -1.37, p<0.0001) facilities -1.98, tended correlate lower scores. evidence highlights impact time participation posting content study identifies through interactions extensive These findings emphasize importance early thread demonstrate predominantly over time. further highlight value its potential enhance well-being

Language: Английский

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A Protocol for a Patient Portal Based Intervention to Identify, Engage, and Support Care Partners in Clinical Settings (Preprint)

Published: Sept. 20, 2024

In the United States, landscape of unpaid care delivery is both challenging and complex, millions individuals undertaking vital role helping family (broadly defined) manage their health well-being. These partners provide critical often daily support for tasks such as dressing bathing, well managing medications, medical equipment, appointments, follow up plans. To develop implement a patient portal-based intervention designed to identify, engage, in clinical settings. The project team collaborated with 3 organizations (6 primary practices total) design intervention. Three days advance visit, patients were invited log on portal account answer brief questionnaire part routine electronic check-in process asking them to: 1) identify themselves or someone answering patient, 2) report major life changes, 3) set agenda upcoming 4) partner responsibilities. Respondents’ answers this available providers ahead visit. Patients responsibilities provided link ARCHANGELS Caregiver Intensity Index measure intensity caregiving motivate connect suggested state local resources. was launched September 2022 at Organization A. B May 2023 one clinic June other. focus groups, staff clinicians reported that easy did not cause workflow disruption. At 6 months post implementation, across organizations, total 22,152patients had received 13,825 submitted completed questionnaires (62.4%). Full data will be completion period. Early results suggest could an easily scalable adaptable method identifying supporting

Language: Английский

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Sentiment Dynamics Among Informal Caregivers in Online Alzheimer’s Communities: A Systematic Analysis of Emotional Support and Interaction Patterns (Preprint)

JMIR Aging, Journal Year: 2024, Volume and Issue: unknown

Published: April 29, 2024

Alzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, financial burdens on informal caregivers negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based might influence mental

Language: Английский

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Impact of COVID-19 pandemic on caregivers of persons with epilepsy – A systematic review

Epilepsy & Behavior, Journal Year: 2023, Volume and Issue: 149, P. 109516 - 109516

Published: Nov. 11, 2023

Language: Английский

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