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My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer’s disease and related dementia and multiple chronic conditions through their transition experiences.
The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer’s disease and related dementia and multiple chronic conditions.
A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time.
A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable.
Despite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants.
ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).
carers, dementia, treatment, internet
Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial
Wendy Duggleby, RN, PhD,corresponding author1 Jenny Ploeg, RN, PhD,2 Carrie McAiney, PhD,3 Shelley Peacock, RN, PhD,4 Kathryn Fisher, PhD,2 Sunita Ghosh, PStats,5,6 Maureen Markle-Reid, RN, PhD,2 Jennifer Swindle, PhD,1 Allison Williams, PhD,7 Jean AC Triscott, CCFP (COE), FAAFP, FCFP,8 Dorothy Forbes, RN, PhD,9 and Kathya Jovel Ruiz, RN1
A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period.
This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse.
Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants’ hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage.
Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction).
Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access.
ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387
Web-based intervention, carers, dementia, multiple chronic conditions, program evaluation
A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis
Wendy Duggleby, PhD,corresponding author1 Jenny Ploeg, PhD,2 Carrie McAiney, PhD,3 Kathryn Fisher, PhD,2 Kathya Jovel Ruiz, BSc,1 Sunita Ghosh, PhD,4 Shelley Peacock, PhD,5 Maureen Markle-Reid, PhD,2 Allison Williams, PhD,6 Jean Triscott, MD,7 and Jennifer Swindle, PhD1
Caregivers (ie, family members and friends) play a vital role in the ongoing care and well-being of community-living older persons with Alzheimer disease and related dementia in combination with multiple chronic conditions. However, they often do so to the detriment of their own physical, mental, and emotional health. Caregivers often experience multiple challenges in their caregiving roles and responsibilities. Recent evidence suggests that Web-based interventions have the potential to support caregivers by decreasing caregiver stress and burden. However, we know little about how Web-based supports help caregivers.
The objectives of this paper were to describe (1) how the use of a self-administered, psychosocial, supportive, Web-based Transition Toolkit, My Tools 4 Care (MT4C), designed by atmist, Edmonton, Alberta, Canada, helped caregivers of older adults with Alzheimer disease and related dementia and multiple chronic conditions; (2) which features of MT4C caregivers found most and least beneficial; and (3) what changes would they would recommend making to MT4C.
This study was part of a larger multisite mixed-methods pragmatic randomized controlled trial. The qualitative portion of the study and the focus of this paper used a qualitative descriptive design. Data collectors conducted semistructured, open-ended, telephone interviews with study participants who were randomly allocated to use MT4C for 3 months. All interviews were audio-taped and ranged from 20 to 40 min. Interviews were conducted at 1 and 3 months following a baseline interview. Qualitative content analysis was used to analyze collected data.
Fifty-six caregivers from Alberta and Ontario, Canada, participated in either one or both of the follow-up interviews (89 interviews in total). Caregivers explained that using MT4C (1) encouraged reflection; (2) encouraged sharing of caregiving experiences; (3) provided a source of information and education; (4) provided affirmation; and for some participants (5) did not help. Caregivers also described features of MT4C that they found most and least beneficial and changes they would recommend making to MT4C.
Study results indicate that a self-administered psychosocial supportive Web-based resource helps caregivers of community-dwelling older adults with Alzheimer disease and related dementia and multiple chronic conditions with their complex caregiving roles and responsibilities. The use of MT4C also helped caregivers in identifying supports for caring, caring for self, and planning for future caregiving roles and responsibilities. Caregivers shared important recommendations for future development of Web-based supports.
Internet, Web-based interventions, qualitative research, caregivers, aged, dementia, multiple chronic conditions
A Web-Based Intervention to Help Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: Qualitative Study
Jenny Ploeg, RN, PhD,corresponding author#1,2,3 Carrie McAiney, PhD,#4,5 Wendy Duggleby, RN, PhD,#6,7 Tracey Chambers, BScN, MSc, RN,#2 Annie Lam, BScN, MSc, RN,#2 Shelley Peacock, RN, PhD,#8 Kathryn Fisher, PhD,#1,2 Dorothy Anne Forbes, RN, PhD,#9 Sunita Ghosh, PhD, PStat, PStat (ASA),#10,11,12 Maureen Markle-Reid, RN, MScN, PhD,#1,2,13 Jean Triscott, MD, CCFP (COE), FAAFP, FCFP,#14,15 and Allison Williams, PhD#16
1-(3,4-Dimethoxycinnamoyl)piperidine, a synthesized piperidine analog, possesses antimicrobial and antioxidant activity.