Abstract
BackgroundFamily carers of older persons with Alzheimer’s’ disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions:Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group?Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? andAre the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group?Methods/DesignUsing a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time.DiscussionData collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society.Trial registrationClinicalTrials.gov Identifier: NCT02428387
Highlights
The home page is available publicly on the web. (All other pages require logging in.)It contains: Introduction to the toolkit Log in box Registration form to create new account Password retrieval process Link to privacy policy, terms of use, etc. Tutorials and help filesSection 1: About MeContains guided activities to help carers to think about and understand transitions
The results will inform policy and practice as My Tools 4 Care (MT4C) can be revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society
We developed a paper based psychosocial supportive intervention entitled “Transition Toolkit” for family carers of older persons with ADRD who are living at home
Summary
Section 1: About MeContains guided activities to help carers to think about and understand transitions. With the escalating numbers of persons diagnosed with Alzheimer’s disease and related dementias (ADRD) worldwide [1], support for family carers of persons with dementia is critical because: a) they provide about 90% of in-home care for persons with ADRD [2], b) the care is often difficult and complex due to co-morbidities [multiple chronic conditions (MCC)] [3] and c) they experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical and mental health [4] Adding to their distress is the lack of resources available for family carers including insufficient information to provide care [5]. None of the reviewed studies included a cost analysis of the intervention
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