Abstract
BackgroundCaregivers of relatives with Alzheimer’s disease are highly stressed and at risk for physical and psychiatric conditions. Interventions are usually focused on providing caregivers with knowledge of dementia, skills, and/or support, to help them cope with the stress. This model, though true to a certain extent, ignores how caregiver stress is construed in the first place. Besides burden, caregivers also report rewards, uplifts, and gains, such as a sense of purpose and personal growth. Finding benefits through positive reappraisal may offset the effect of caregiving on caregiver outcomes.DesignTwo randomized controlled trials are planned. They are essentially the same except that Trial 1 is a cluster trial (that is, randomization based on groups of participants) whereas in Trial 2, randomization is based on individuals. Participants are randomized into three groups - benefit finding, psychoeducation, and simplified psychoeducation. Participants in each group receive a total of approximately 12 hours of training either in group or individually at home. Booster sessions are provided at around 14 months after the initial treatment. The primary outcomes are caregiver stress (subjective burden, role overload, and cortisol), perceived benefits, subjective health, psychological well-being, and depression. The secondary outcomes are caregiver coping, and behavioral problems and functional impairment of the care-recipient. Outcome measures are obtained at baseline, post-treatment (2 months), and 6, 12, 18 and 30 months.DiscussionThe emphasis on benefits, rather than losses and difficulties, provides a new dimension to the way interventions for caregivers can be conceptualized and delivered. By focusing on the positive, caregivers may be empowered to sustain caregiving efforts in the long term despite the day-to-day challenges. The two parallel trials will provide an assessment of whether the effectiveness of the intervention depends on the mode of delivery.Trial registrationChinese Clinical Trial Registry (http://www.chictr.org/en/) identifier number ChiCTR-TRC-10000881.
Highlights
Caregivers of relatives with Alzheimer’s disease are highly stressed and at risk for physical and psychiatric conditions
Interventions for dementia CGs usually include some form of psychoeducation, counseling, personal care training, social support, stress management, and home environment modification [11,12,13,14,15]
The objective of interventions is usually to strengthen CGs’ resources to deal with the challenges of caring for an Alzheimer disease (AD) family member on a dayto-day basis. These interventions have relied primarily on a deficiency model; that is, the CGs’ difficulties are due to their lack of knowledge, skills, and/or support. This model, though true to a certain extent, ignores how CG stress is construed in the first place
Summary
Given the global rise in dementia incidence in the coming decades [47], ways to support informal caregivers will no doubt become a major health-care agenda item around the world. In our approach under investigation, the emphasis on benefits rather than losses and difficulties provides a new dimension to the way interventions for caregivers can be conceptualized and delivered. This approach is consistent with the life-span developmental perspective [51], which suggests that successful adaptations do not require the absence of losses, but a more positive balance of gains over losses. These participants had completed the respective intervention to which they were assigned, and were being followed up By this time, six and two individuals had dropped out of Trial 1 and Trial 2, respectively.
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