Acta Neurol Belg 2003 Mar;103(1):24-34
Cognitive impairment, dementia and quality of life in patients and caregivers.
Kurz X, Scuvee-Moreau J, Vernooij-Dassen M, Dresse A.
Department of Pharmacology, University of Liege, Belgium.
OBJECTIVE: To study the impact of cognitive impairment and severity of dementia on the quality of life (QoL) of patients and their caregivers. DESIGN: Descriptive cross-sectional study within the NAtional Dementia Economic Study. SETTING: 231 general practices and 15 specialist clinics in Belgium. SUBJECTS: 605 patients aged > or = 65 years: 106 referent subjects without cognitive impairment (R), 113 subjects with cognitive impairment and no dementia (CIND), 386 subjects with mild (83), mild/moderate (108), moderate (62) or severe (133) dementia (D1 to D4). OUTCOME MEASURES: QoL of patients: COOP/WONCA charts, Katz's Activities of Daily Living (ADL) scale, Lawton's Instrumental Activities of Daily Living (IADL) scale. QoL of caregivers: COOP/WONCA charts, SF-36 questionnaire, short-form Beck Depression Inventory, Sense of Competence questionnaire (SCQ). MAIN RESULTS: QoL of patients: For R, CIND and D1 to D4 patients, dependence for ADL reached 5%, 6%, 16%, 20%, 48% and 79%, respectively, and mean IADL scores were 5.6, 5.0, 3.4, 2.0, 0.6 and 0.1, respectively. QoL of caregivers: The main impact of caregiving was on mental health, with SF-36 MCS scores of 51.3, 47.7 and 45.4 for R, CIND and all D patients and respectively 32.6%, 31.3% and 42.5% depression prevalence. Sense of competence decreased with severity of patient's cognitive impairment. Caregivers of CIND patients always rated intermediate between R and D1 patients. Caregivers of D3 patients were the most affected ones. CONCLUSION: The data suggest that improving the cognitive status of patients and providing assistance to caregivers would be complementary ways of action to support caregiving of patients living at home.
Qual Health Res 2003 Jan;13(1):100-13
Redefining parental identity: caregiving and schizophrenia.
Milliken PJ, Northcott HC.
School of Nursing, University of Victoria, P.O. Box 1700, Victoria, British Columbia, Canada, firstname.lastname@example.org
When parents try to assume responsibility for an ill adult-child with schizophrenia, the law, mental health practitioners, and often the ill person reject their right to do so. Consequently, these parents regard themselves as disenfranchised, i.e., lacking the rights required to care properly for their loved ones. Redefining Parental Identity, a grounded theory of caregiving and schizophrenia, traces changes in a parent's identity and caregiving during the erratic course of the child's mental illness. Participants were a purposive sample of 29 parent caregivers from 19 families in British Columbia, Canada, caring for 20 adult children. This understanding of their experience will be helpful to parents of people with schizophrenia, professional practitioners, and those involved in mental health care reform.
Acta Psychiatr Scand 2002 Oct;106(4):291-8
The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy.
Magliano L, Marasco C, Fiorillo A, Malangone C, Guarneri M, Maj M; Working Group of the Italian National Study on Families of Persons with Schizophrenia.
Department of Psychiatry, University of Naples SUN, Italy. email@example.com
OBJECTIVE: (a) To explore burden related to caregiving and support received from professionals and social network in relatives of patients with schizophrenia in Northern, Central and Southern Italy; and (b) to test whether a higher level of family burden is associated with a lower level of professional and social network support. METHOD: Seven hundred and nine patients with schizophrenia and their key-relatives were consecutively recruited in 30 Italian mental health departments. Data were collected on: (a) patients' clinical status and levels of disability; (b) relatives' burden, social and professional support; (c) interventions received by patients and their families. RESULTS: Family burden was found lower in Northern Italy. However, after controlling for psychosocial interventions, differences in family burden among the three geographical areas disappeared. Family burden was associated with patients' levels of disability and manic/hostility symptoms, and with professional and social network support received by the family. CONCLUSION: Professional and social network support represent crucial resources to reduce family burden in schizophrenia.
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