ABSTRACT
Introduction: The number of people diagnosed with dementia is increasing, creating significant economic burden globally. With the progression of the disease, patients need a caregiver whose wellbeing is important for continuous care. Providing respite as a service, through sharing the responsibility of caregiving or support for the caregiver, is a costly initiative. A peer-to-peer online support platform for dementia caregivers, motivated by the sharing economy, putting exchange of knowhow, resources, and services at its center, has the potential to balance cost concerns with a search for respite. The aim of this research is to assess caregivers' intention to engage in peer-to-peer exchange. Methods: A survey including sociodemographic, technology use, and caregiving variables, structured questionnaires (Zarit caregiver burden, WHO brief quality of life scale, ADCS-ADL and chronic stress scale) were administered, January 2018-May 2019, in the dementia outpatient clinic of a university hospital, to a convenience sample of n = 203 individuals identifying themselves as primary caregivers. A path analysis exploring the drivers of an intention to engage in peer-to-peer service exchange was conducted. Results: In the path model, caregivers experiencing higher caregiver burden showed higher intention to engage (0.079, p < 0.001). Disease stage had no effect while patient activities of daily living, chronic social role related stressors of the caregiver and general quality of life were significant for the effect on the caregiver burden. Existing household support decreased the caregiver burden, affecting the intention to engage. Caregivers who can share more know-how demonstrate a higher intention to engage (0.579, p = 0.021). Caregiver technology affinity (0.458, p = 0.004) and ability and openness to seek professional help for psychological diagnoses (1.595, p = 0.012) also increased intention to engage. Conclusion: The model shows caregiver burden to be a major driver, along with caregiver characteristics that reflect their technology affinity and openness to the idea of general reciprocity. Existing support for obtaining knowhow and exchanging empathy have a direct effect on the intention to engage. Given the scarcity of caregiver support in the formal care channels, the identified potential of enlarging informal support via a peer-to-peer exchange mechanism holds promise.
ABSTRACT
Alzheimer's Disease (AD) is believed to be the most common type of dementia. Even though screening for AD has been discussed widely, there is no screening program implemented as part of a policy in any country. Current medical research motivates focusing on the preclinical stages of the disease in a modeling initiative. We develop a partially observable Markov decision process model to determine optimal screening programs. The model contains disease free and preclinical AD partially observable states and the screening decision is taken while an individual is in one of those states. An observable diagnosed preclinical AD state is integrated along with observable mild cognitive impairment, AD and death states. Transition probabilities among states are estimated using data from Knight Alzheimer's Disease Research Center (KADRC) and relevant literature. With an objective of maximizing expected total quality-adjusted life years (QALYs), the output of the model is an optimal screening program that specifies at what points in time an individual over 50 years of age with a given risk of AD will be directed to undergo screening. The screening test used to diagnose preclinical AD has a positive disutility, is imperfect and its sensitivity and specificity are estimated using the KADRC data set. We study the impact of a potential intervention with a parameterized effectiveness and disutility on model outcomes for three different risk profiles (low, medium and high). When intervention effectiveness and disutility are at their best, the optimal screening policy is to screen every year between ages 50 and 95, with an overall QALY gain of 0.94, 1.9 and 2.9 for low, medium and high risk profiles, respectively. As intervention effectiveness diminishes and/or its disutility increases, the optimal policy changes to sporadic screening and then to never screening. Under several scenarios, some screening within the time horizon is optimal from a QALY perspective. Moreover, an in-depth analysis of costs reveals that implementing these policies are either cost-saving or cost-effective.
