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Biography

Lizzy Boots graduated cum laude at Maastricht University in 2011. After receiving her Master’s degree in Mental Health, she was active in teaching activities before starting her PhD at Maastricht University, School for Mental Health and Neuroscience, department of Psychiatry and Neuropsychology in the Netherlands in 2012. She is currently coordinating the ‘PrepAD’ study, short for ‘Prepare for Alzheimer Dementia’. The goal of her research is to prepare early-stage dementia caregivers for their future caregiving role in order toprevent high levels of burden.

Abstract

Background: Due to the expected increase of dementia patients, no cure for the patient in sight, and the rising cost of care, there is a growing need for effective caregiver interventions. Internet-based interventions hold a considerable promise for meeting the educational and support needs of (early-stage) dementia carers at reduced expenses. Objectives: Based on the MRC Framework, the current study conducts an iterative step-wise approach to (1) define the intervention based on the literature and target audience; (2) explore feasibility of an online self-management program. Methods: A systematic search of the literature up to January 2013 was performed. The quality of the included studies was assessed according to the Cochrane Level of Evidence and the Cochrane Back Review Group. Focus group interviews were conducted with 28 informal caregivers of people with dementia (PwD). A pilot study with ten spousal caregivers of PwD was conducted using a one-group pre-test posttest design. Feasibility scores based on subjective participant ratings ranged between 54-234. Scores of 145 or higher were viewed as good feasibility. Results: Twelve included studies in the review differed widely in terms of intervention type, dosage, duration, and methodological quality. Outcomes showed that Internet interventions can improve caregiver burden, depression and self-efficacy, provided they comprise of multiple components, are tailored and include interaction with other caregivers. The focus group study resulted in identification of nine thematic modules for the intervention: ‘acceptance’, ‘insecurity’, ‘focus on positivity, ‘communication’, ‘balance in activities’, ‘stress and relaxation’, ‘social support’, ‘a changing partner’, and ‘self-reflection’. A preliminary analysis of the pilot in the first 8 participants showed a feasibility score of 207, indicative of good feasibility. Conclusion: Results from the literature review, focus group study and feasibility pilot provide support to move forward with a full-scale randomized controlled trial on the effectiveness of the online intervention.

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