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      Attitudes of Family Members and Caregivers Regarding Alzheimer’s Disease Pre-Symptomatic Screening

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          Abstract

          Background:

          In recent years, studies have examined the acceptability and attitudes that influence the intention to early screen for Alzheimer’s disease (AD) in the general population, older people, carers, and asymptomatic individuals who report a family history of AD. However, it remains unclear what specific factors promote or reduce the acceptability of pre-symptomatic screening.

          Objective:

          The aim of this study is to explore the attitudes of family and non-family members as well as caregivers and non-caregivers toward the pre-symptomatic screening of AD.

          Methods:

          A total of 213 participants completed the Perceptions regarding pRE-symptomatic Alzheimer’s Disease Screening (PRE-ADS) Questionnaire. Group comparisons using t-test and one-way ANOVA were used to examine differences in attitudes toward pre-symptomatic screening regarding age, family history, knowing someone with AD, influence of depression, and feelings of anxiety. The subscale “Acceptability of Screening” was developed to investigate the willingness to undergo pre-symptomatic screening.

          Results:

          Participants with a family history showed greater acceptance of pre-symptomatic screening while both caregivers and non-caregivers had similar attitudes. People with a family history as well as those with personal connections to dementia indicate a greater need for knowledge. The findings suggest that younger adults appear to perceive less harm from testing, whereas those who experience higher levels of anxiety and depression seem to perceive more testing harms.

          Conclusions:

          Comparing the attitudes of people with and without a family history as well as caregivers and non-caregivers toward pre-symptomatic screening of AD is critical to understand the differences between these groups and develop comprehensive screening programs.

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          Most cited references53

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          Family caregivers of people with dementia

          Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
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            The Health Belief Model and Sick Role Behavior*

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              Social support and subjective burden in caregivers of adults and older adults: A meta-analysis

              Background Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. Objective The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult. Methods A systematic search was carried out up to September 2017 in the following databases: MEDLINE (PubMed), CINAHL, EMBASE, PsycINFO), Scopus and ISI Proceedings, and a meta-analysis was performed with the results of the selected and included studies. Results Fifty-six studies were included in the meta-analysis, which provided 46 independent comparisons for perceived support and 16 for received support. Most of these studies were cross-sectional. There was a moderate, negative association of perceived social support on subjective burden (r = -0.36; CI 95% = -0.40, -0.32) and a very small, negative association of received support on subjective burden (r = -0.05; CI 95% = -0.095, -0.001). Conclusions 1) perceived and received support are not redundant constructs, 2) the relationships between social support and subjective burden depend on whether the social support is measured as perceived or received, 3) the relationship of perceived social support with subjective burden has a bigger effect size than that of received social support, the relation between received support and subjective burden being clinically irrelevant, 4) perceived social support may be a good predictor of subjective burden. Implications of key findings Our findings broadly support interventions promoting social support in caregivers to prevent or alleviate subjective burden, and specifically, to intervene on the promotion of perceived social support more than on the promotion of received social support when preventing or alleviating burden.
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                Author and article information

                Journal
                J Alzheimers Dis Rep
                J Alzheimers Dis Rep
                ADR
                Journal of Alzheimer's Disease Reports
                IOS Press (Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands )
                2542-4823
                18 April 2024
                2024
                : 8
                : 1
                : 723-735
                Affiliations
                [a ]Department of Neurology, Faculty of Health Sciences, School of Medicine, Aristotle University of Thessaloniki , Thessaloniki, Greece
                [b ]Greek Association of Alzheimer’s Disease and Related Disorders, Thessaloniki, Greece
                [c ]Laboratory of Neurodegenerative Diseases, Center for Interdisciplinary Research and Innovation (CIRI –AUTh), Balkan Center, Aristotle University of Thessaloniki , Thessaloniki, Greece
                [d ]Clinical Ergospirometry, Exercise and Rehabilitation Lab, School of Medicine, National and Kapodistrian University of Athens , Athens, Greece
                [e ]Network Aging Research (NAR), Heidelberg University , Heidelberg, Germany
                [f ]Department of Experimental and Cognitive Psychology, School of Psychology, Aristotle University of Thessaloniki , Thessaloniki, Greece
                [g ]Department of Medical Biology-Genetics, Faculty of Health Sciences, School of Medicine, Aristotle University of Thessaloniki , Thessaloniki, Greece
                Author notes
                [* ]Correspondence to: Marina Makri, 13 Petrou Sindika, 54643, Thessaloniki, Greece. Tel.: +306949431758; E-mail: makrimarina@ 123456auth.gr .
                Article
                ADR230145
                10.3233/ADR-230145
                11091747
                38746636
                03204a6b-748e-44ca-9664-1934fc1ab37d
                © 2024 – The authors. Published by IOS Press

                This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 14 October 2023
                : 20 March 2024
                Categories
                Research Report

                acceptance,alzheimer’s disease,attitudes,caregivers,family history,screening

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