Abstract
ObjectivesTo develop and evaluate the effectiveness of a home based intervention in reducing caregiver burden, promoting caregiver mental health and reducing behavioural problems in elderly persons with dementia.Methodology and Principal FindingsThis was a randomised controlled trial in which the person with dementia-caregiver dyad was randomly allocated either to receive the intervention immediately or to a waiting list group which received the intervention after 6 months. It was carried out in communities based in two talukas (administrative blocks) in Goa, India. Mild to moderate cases with dementia (diagnosed using the DSM IV criteria and graded using the Clinical Dementia Rating scale) and their caregivers were included in the trial. Community based intervention provided by a team consisting of Home Care Advisors who were supervised by a counselor and a psychiatrist, focusing on supporting the caregiver through information on dementia, guidance on behaviour management, a single psychiatric assessment and psychotropic medication if needed. We measured caregiver mental health (General Health Questionnaire), caregiver burden (Zarit Burden Score), distress due to behavioural disturbances (NPI-D), behavioural problems in the subject (NPI-S) and activities of daily living in the elder with dementia (EASI). Outcome evaluations were masked to the allocation status. We analysed each outcome with a mixed effects model. 81 families enrolled in the trial; 41 were randomly allocated to the intervention. 59 completed the trial and 18 died during the trial. The intervention led to a significant reduction of GHQ (−1.12, 95% CI −2.07 to −0.17) and NPI-D scores (−1.96, 95%CI −3.51 to −0.41) and non-significant reductions in the ZBS, EASI and NPI-S scores. We also observed a non-significant reduction in the total number of deaths in people with dementia in the intervention arm (OR 0.34, 95% CI 0.01 to 1.03).ConclusionHome based support for caregivers of persons with dementia, which emphasizes the use of locally available, low-cost human resources, is feasible, acceptable and leads to significant improvements in caregiver mental health and burden of caring.ClinicalTrials.gov NCT00479271
Highlights
Recent estimates show that dementia is a major cause of burden of disease amongst the elderly in developing countries[1]
All probable cases were examined by a trained clinician (AD) to confirm the diagnosis of dementia according to DSM IV criteria[9] and graded using the Clinical Dementia Rating (CDR) Scale[10]
We had originally set a sample of 80 persons with dementia, based on our estimates of how many individuals we were likely to be able to enrol given the time and human resources at our disposal and the geographical area of coverage of the program
Summary
Recent estimates show that dementia is a major cause of burden of disease amongst the elderly in developing countries[1]. The numbers of people affected by dementia in India are set to triple, reaching six million by 2040[3]. Awareness is limited, both in the community and among health professionals[4] and there are few services tailored to the needs of people with dementia and their caregivers. Service development for older people with dementia in developing countries needs to take account of the prevailing socio-economic, health system and cultural circumstances. Health care is typically clinic-based; the person with dementia and their caregivers must attend a clinic or hospital, often involving a long journey and waiting time. Most care for dementia is informal, with little or no support from health or social services[5]
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