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Measurement Instrument Database for the Social Science (MIDSS) - Caregiver Burden Scale

- 30/6/20 - 1 formulario, 16 itemgroups, 60 items, 1 idioma
Itemgroups: Caregiver Burden Scale, Transportation, Housekeeping, Cooking, Shopping, Decision Making, Financial Record Keeping, Walking, Making House Repairs, Farming/Yard Work, Administering Medication, Dressing, Bathing, Eating, Toileting, Leaving Patient Unattended
Macera, C.A., Eaker, E.D., Jannarone, R.J., Davis, D.R., Stoskopf, C.H.. (1993). Caregiver Burden Scale. Measurement Instrument Database for the Social Science. Retrieved 30/06/2020, from www.midss.ie Key references: Macera, C.A., Eaker, E.D., Jannarone, R.J., Davis, D.R., Stoskopf, C.H., 1993. A Measure of Perceived Burden among Caregivers. Evaluation & the Health Professions 16 (2), 204–211. Primary use / Purpose: To assess perceived burden among people caring for others with disabilities. Background: This caregiver burden scale was developed to assess perceived burden among caregivers of family members with dementia. While everyone who is a caregiver will assist with tasks for their family member with dementia, our previous research found that burden was more than just the number or type of tasks for which the patient required assistance. By obtaining a measure of the caregivers' perceived burden associated with each of 15 possible tasks, we were able to narrow down the source of stress in a way that could lead to effective interventions. Psychometrics: Internal consistency of the scale: 0.87 Correlation with depressive symptoms (CES-D): 0.38 (p<0.001). Scoring Three domains are measured from this scale. The first one, defined as patient needs, is a sum of the 15 items providing a range of 0-15. The second one, defined as caregiver tasks, is the sum of the tasks for which the caregiver provided assistance. The range could be 0-15, but cannot be higher than the sum of the patient needs. The third domain, caregiver burden, is a sum of the items for which the patient needed assistance AND the caregiver provided assistance AND the caregiver reported that providing this assistance was stressful. The possible range was 0-15 but could not be higher than the number of caregiver tasks. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.389

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Clinical Dementia Rating (CDR)

- 20/4/20 - 1 formulario, 4 itemgroups, 18 items, 2 idiomas
Itemgroups: Administrative Data, Clinical Dementia Rating (CDR), modified, Informant, Clinical Dementia Rating (CDR), modified, Subject, Clinical Dementia Rating (CDR), modified, summary
DELCODE is conducted by DZNE, the German Center for Neurodegenerative Diseases within the Helmholtz Association. The following information was taken from https://www.dzne.de/en/research/studies/clinical-studies/delcode/. Background and aims: One of the important aims of research into Alzheimer's is to find ways of detecting the disease early – if at all possible, as soon as the first minor symptoms appear, or even before any symptoms at all have appeared. Such detection capabilities are the necessary basis for development of therapies that can be applied at such early stages in the disease. Recent research indicates that such therapies could be more effective than therapies initiated during the disease's later stages. Over a period of several years, the DELCODE study is studying persons in early stages of the disease, along with various risk groups. The research is aimed at the development of procedures for characterizing early stages of the disease, at improving prediction of the course of the disease and at identifying new markers for early diagnosis of Alzheimer's-related dementia. Overview: DELCODE is set up to run for an initial period of three years, and to include a total of 1,000 study participants, who will be examined on a yearly basis. The group of participants will include persons with no complaints (healthy control subjects), patients with slight memory impairment or mild dementia and first-degree relatives of patients with diagnosed Alzheimer's disease. The minimum age for participants is 60. Course of the study: The examinations in the framework of the study will include a comprehensive interview carried out by a study investigator, a detailed neuropsychological examination (testing of memory functions and other areas of cognitive performance), a blood test and a cranial MRI scan. Optionally, subject to the study participant's consent in each case, a lumbar puncture (collection of cerebrospinal fluid) will be carried out." For more information (e.g. principle investigator and study coordination), please visit the above link or https://www.dzne.de. This document contains the Clinical Dementia Rating (CDR) form. It has to be filled in for baseline and for all follow-ups. Due to a necessary license agreement for use of the CDR, it will only be included as subscore/result items in this version of DELCODE forms. The respective score items will have a comment in their descriptions about this to distinguish them from score items that were already defined like that by DZNE. For more information see: https://otm.wustl.edu/for-industry/tools/cdr-licensing/

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