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Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study
- Jessica de Wit, Carin D. Schröder, Julia el Mecky, Anita Beelen, Leonard H. van den Berg, Johanna M. A. Visser-Meily
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- Journal:
- Palliative & Supportive Care / Volume 17 / Issue 2 / April 2019
- Published online by Cambridge University Press:
- 05 February 2018, pp. 195-201
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Objective
The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).
MethodIndividual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.
ResultA total of four global support needs emerged: “more personal time”, “assistance in applying for resources”, “counseling”, and “peer contact”. Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.
Significance of resultsALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers’ support needs.
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- Edited by Daniel Patte, Vanderbilt University, Tennessee
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- The Cambridge Dictionary of Christianity
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- 05 August 2012
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- 20 September 2010, pp xi-xliv
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Impediments to Research Progress in Development of Behavioral Approaches to Treatment and Care of Persons With Alzheimer's Disease
- Leonard Berg
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- International Psychogeriatrics / Volume 8 / Issue S1 / October 1996
- Published online by Cambridge University Press:
- 07 January 2005, pp. 113-114
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This article addresses some of the scientific, conceptual, and technical impediments to the timely progress of research on the topics discussed in the workshop. This is a young field of scientific exploration. Most of what has been accomplished thus far is a series of efforts at descriptive research; little truly experimental research has been published. There is, however, abundant information on the methodologic difficulties and other dilemmas encountered in these research efforts in a recent special issue of Alzheimer's Disease and Associated Disorders (Holmes et al., 1994).
Clinical Dementia Rating
- Leonard Berg
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- The British Journal of Psychiatry / Volume 153 / Issue 2 / August 1988
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- 02 January 2018, p. 267
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- August 1988
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Clinical Dementia Rating
- Leonard Berg
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- The British Journal of Psychiatry / Volume 145 / Issue 3 / September 1984
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- 29 January 2018, p. 339
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- September 1984
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A New Clinical Scale for the Staging of Dementia
- Charles P. Hughes, Leonard Berg, Warren Danziger, Lawrence A. Coben, Ronald L. Martin
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- The British Journal of Psychiatry / Volume 140 / Issue 6 / June 1982
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- 29 January 2018, pp. 566-572
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- June 1982
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Accurate clinical staging of dementia in older subjects has not previously been achieved despite the use of such methods as psychometric testing, behavioural rating, and various combinations of simpler psychometric and behavioural evaluations. The Clinical Dementia Rating (CRD), a global rating device, was developed for a prospective study of mild senile dementia—Alzheimer type (SDAT). Reliability, validity, and correlational data are discussed. The CDR was found to distinguish unambiguously among older subjects with a wide range of cognitive function, from healthy to severely impaired.