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      Bouncing Back from the Burden of Dementia : Predictors of Resilience from the Perspective of the Patient, the Spousal Caregiver, and the Dyad – An Exploratory Study

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          Abstract

          Abstract. Background: Although there is mounting evidence of dyadic interdependencies between patients with dementia (PWD) and their caregivers, predictors of resilience among PWD and their caregivers are generally regarded in isolation. We therefore investigated how dyadic interdependencies regarding common resilience factors predict subjective notions of individual resilience. Methods: A total of 29 dyads (caregivers: 23 female, 73 ± 7 years; PWD: 6 female, 76 ± 6 years, Mini-Mental State Examination (MMSE) score: 18 ± 6) drawn from two studies answered questions about resilience (Brief Resilience Scale; BRS), partnership quality (Marital Quality Questionnaire; PFB), and depression (Geriatric Depression Scale; GDS-15). Using linear regression models, we predicted BRS scores by linearly combining individual characteristics (intraindividual level), characteristics of the partner (interindividual level), and their dyadic similarity (dyadic level). Results: Intraindividually, higher resilience in caregivers was associated with female sex; interindividually, it was associated with lower MMSE scores and higher PFB scores in PWD. On a dyadic level, the more different the GDS-15 scores were, the higher the resilience of caregivers. For PWD, higher resilience was significantly related to individual lower GDS-15 scores and higher PFB scores, while the characteristics of caregivers did not explain any variance. However, similarity in GDS-15 scores predicted higher resilience in PWD. Discussion: Resilience is affected differently in PWD and caregivers, potentially pointing to different strategies in coping with disease-related changes. Future studies are necessary to examine the mechanisms underlying resilience in PWD and their respective caregiver in order to tailor interventions that address the needs of both parties, from the individual, interindividual, and dyadic perspectives.

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          Most cited references26

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          The brief resilience scale: assessing the ability to bounce back.

          While resilience has been defined as resistance to illness, adaptation, and thriving, the ability to bounce back or recover from stress is closest to its original meaning. Previous resilience measures assess resources that may promote resilience rather than recovery, resistance, adaptation, or thriving. To test a new brief resilience scale. The brief resilience scale (BRS) was created to assess the ability to bounce back or recover from stress. Its psychometric characteristics were examined in four samples, including two student samples and samples with cardiac and chronic pain patients. The BRS was reliable and measured as a unitary construct. It was predictably related to personal characteristics, social relations, coping, and health in all samples. It was negatively related to anxiety, depression, negative affect, and physical symptoms when other resilience measures and optimism, social support, and Type D personality (high negative affect and high social inhibition) were controlled. There were large differences in BRS scores between cardiac patients with and without Type D and women with and without fibromyalgia. The BRS is a reliable means of assessing resilience as the ability to bounce back or recover from stress and may provide unique and important information about people coping with health-related stressors.
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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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              Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the Neuropsychiatric Inventory Caregiver Distress Scale.

              To develop an adjunct scale to the Neuropsychiatric Inventory (NPI) for assessing the impact of neuropsychiatric symptoms in Alzheimer's disease (AD) patients on caregiver distress. Cross-sectional descriptive and correlational study. University out-patient memory disorders clinics. Eighty-five AD subjects and their caregivers (54 spouses, 31 children). The NPI and NPI Caregiver Distress Scale (NPI-D) were used to assess neuropsychiatric symptoms in AD patients and related caregiver distress, respectively. Criterion validity of the NPI-D was examined (N = 69) by comparison with an abridged version of the Relatives' Stress Scale (RSS'), a general measure of caregiver stress, using item clusters that had previously been correlated to behavioral disturbances in demented patients. Test-retest (n = 20) and inter-rater reliability (n = 16) of the NPI-D were also assessed. Test-retest and interrater reliability of the NPI-D were both adequate. Overall, caregiver NPI-D distress ratings were correlated significantly with the RSS' (r = .60, P < .001). RSS' ratings correlated strongly with NPI scores (r = .64, P < .001), even after controlling for degree of cognitive impairment based on the Mini-Mental State Exam (MMSE) score (r = .61). MMSE scores showed a moderate correlation to RSS' ratings (-.30, P = .02), but this association was markedly attenuated when controlling for the degree of neuropsychiatric disturbance based on the NPI score (r = -. 14). NPI-D ratings for 9 of 10 NPI symptom domains correlated most strongly with either NPI symptom severity or total (frequency x severity) scores. Agitation, dysphoria, irritability, delusions, and apathy were the symptoms most often reported to be severely distressing to caregivers. The NPI-D provides a reliable and valid measure of subjective caregiver distress in relation to neuropsychiatric symptoms measured by the NPI. Neuropsychiatric alterations are more strongly associated than cognitive symptoms to caregiver distress. The NPI-D may be useful in both clinical and research settings for assessing the contribution to caregiver distress of neuropsychiatric symptoms in AD patients.
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                Author and article information

                Contributors
                Journal
                gro
                GeroPsych
                Hogrefe AG, Bern
                1662-9647
                1662-971X
                July 30, 2020
                2020
                : 33
                : 3
                : 170-181
                Affiliations
                [ 1 ]Center for Mental Health in Old Age, Landeskrankenhaus (AöR), Mainz, Germany
                [ 2 ]University Medical Center Mainz, Germany
                [ 3 ]Department of Psychiatry and Psychotherapy, Ludwig-Maximilian-University, Munich, Germany
                [ 4 ]German Resilience Center, Mainz, Germany
                Author notes
                Dr. Alexandra Wuttke-Linnemann, Center for Mental Health in Old Age, Landeskrankenhaus (AöR), Hartmühlenweg 2-4, 55122 Mainz, Germany, E-mail a.wuttke-linnemann@ 123456zpga.landeskrankenhaus.de
                Article
                gro_33_3_170
                10.1024/1662-9647/a000238
                50ef0061-9a92-4321-9e91-b7d3aec6193f
                Copyright @ 2020
                History
                : August 31, 2019
                : April 28, 2020
                Funding
                Funding: Study 1 was funded by the Ministry of Social Affairs, Labor, Health, and Demography of Rhineland Palatinate, Germany . Study 2 was funded by Marion von Tessin Foundation, Munich.
                Categories
                Full-Length Research Report

                Geriatric medicine,Medicine,Psychology,Clinical Psychology & Psychiatry
                adverse health effects,couples,caregiver burden,adaptation,stress

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