Adaptation of an online training and support program for caregivers of people with dementia to Indian cultural setting.

Support for caregivers of people with dementia has been identified as an action area in the Global Action Plan on the Public Health Response to Dementia 2017-2025 by the World Health Organization (WHO). As a step towards that, WHO developed iSupport - an online program to provide support and training for caregivers of people with dementia. To address the need of caregivers in India, the iSupport program was adapted to the Indian cultural setting. The process of adaptation consisted of four phases: (a) information gathering (review of literature and focus group discussions), (b) preliminary adaptation design (modifications using an adaptation guide), (c) preliminary adaptation tests (face-to-face interviews and online test run), and (d) adaptation refinement (final modifications to the intervention and study process). The initial adaptation was carried out by effecting changes in words, names, resources, caregiving scenarios and audio files to make the English version of iSupport suitable to the Indian cultural context. The results of the qualitative adaptation tests provided additional recommendations like changing the links to India specific websites, revising the eligibility criterion for caregiving duration, re-wording of e-mail texts, inclusion of a time estimate required to complete the assessments and decreasing the numbers of screens that the caregivers had to navigate in the program, which were incorporated in the final phase. Preliminary data showed that the caregivers who participated in the adaptation process found the changes acceptable. Translation of iSupport to different Indian languages could be undertaken after initial effectiveness of the program is established.

Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study.

OBJECTIVES: There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. METHODS: Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. RESULTS: The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. CONCLUSIONS: The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. CLINICAL IMPLICATIONS: The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.

Identifying psychological distress in elderly seeking health care.

BACKGROUND: Psychological distress in the elderly with various illness conditions often goes unrecognized. Since psychological distress is treatable, it is important to recognize it at the earliest to enhance recovery. This is an interim analysis of screening data of the elderly seeking health care in a hospital in India, with a focus on the 12-item General Health Questionnaire (GHQ-12), a screening instrument for psychological distress and a rationale for a higher cutoff score in help seeking elderly. MATERIALS AND METHODS: A retrospective analysis of screening data of psychological distress using GHQ-12 in the elderly seeking care for neuropsychiatric conditions was carried out. Traditionally, ≥2 is considered positive for distress by GHQ-12. Receiver Operating Characteristic (ROC) curve was used to define new cutoff points for psychological distress. RESULTS: At ≥2, 2443 (50%) of the elderly screened were recognized to be psychologically distressed. Using an ROC and optimum sensitivity and specificity measures, a cutoff score of ≥4 was observed to detect 30% of the elderly who had diagnosable mental health disorders. Female sex, illiteracy, and multiple co-morbidities were the factors that were associated with higher cutoff scores on GHQ-12 proposed here and psychiatric morbidity thereof. CONCLUSION: There is greater psychological distress among the elderly seeking health care. Hence, it is important to screen them and identify those at higher risk. Using a higher cutoff score with a standardized instrument like GHQ-12 indicated that it was statistically valid to identify those elderly with higher distress in a busy out-patient setting.

Identifying elders with neuropsychiatric problems in a clinical setting.

OBJECTIVE: Multiple health problems among the elderly necessitate a comprehensive enquiry to detect problems early and also initiate treatment. We utilized available validated instruments to comprehensively identify older persons with neuro-psychiatric problems including dementia and comorbid medical ailments in the screening desk of the geriatric clinic. MATERIALS AND METHODS: Individuals aged 60 years and above seeking outpatient care at NIMHANS during a 2-year period (October 2008-September 2010) participated. We used General Health Questionnaire (12-item), AD8, questions to identify psychoses and neurological problems and a checklist of common medical ailments. A probable clinical diagnosis was made at the end by medical personnel based on ICD-10. RESULTS: A total of 5,260 individuals were screened and more than one-third (36.7%) were women. About 50% had psychological distress (≥2 on GHQ-12), 20.1% had probable cognitive impairment (≥2 on AD8) and about 17% had symptoms suggestive of psychoses (≥1 on Psychoses screener). More than 65% had either a neurological or neurosurgical problems (≥1 on Neurological screener) and headache was the commonest complaint. At probable diagnosis, more than 50% had a neurological problem and over 30% had psychiatric disorders. Of these the most common psychiatric illnesses were psychotic disorders (22.0%), mood disorders (21.4%) and dementia (14.4%). The most common medical comorbidity included hypertension (36.4%), visual impairment (31.8%) and joint pains (30.5%). Nearly 80% had one or more medical comorbidity in addition to psychiatric illness. The overall set of instruments took about 15-20 minutes. It systematically and comprehensively guided in evaluating the elderly for neuropsychiatric problems and hence was collated to constitute the Instruments for Comprehensive Evaluation of the Elderly (ICE-E). CONCLUSIONS: ICE-E was brief, easy to administer and improved decision making even by personnel from a non-medical background. The instrument aided in systematically detecting neuro-psychiatric problems among the elderly (including psychological distress and cognitive changes) and other medical comorbidities.

Dementia and diabetes mellitus: association with apolipoprotein e4 polymorphism from a hospital in southern India.

Objective. To evaluate the association of Apolipoprotein E4 (ApoE4) in Alzheimer's dementia (AD) with comorbid diabetes mellitus (DM). Methods. The study included subjects with Alzheimer's dementia (AD) (n = 209), individuals with non-Alzheimer's dementia (nAD) (n = 122), individuals with parental history of AD (f/hAD) (n = 70), and control individuals who had normal cognitive functions and no parental history of dementia (NC) (n = 193). Dementia was diagnosed using International Classification of Diseases-10 revision (ICD-10) criteria. DM was assessed on the basis of self-report and/or use of antidiabetic medications. ApoE genotyping was done using sequence-specific primer polymerase chain reaction. Results. ApoE4 allele frequencies were highest among AD with comorbid DM (0.35) followed by AD without DM (0.25), nAD with DM (0.13), nAD without comorbid DM (0.12), and NC (0.08). Frequency of ApoE4 in persons with f/hAD was 0.13. The association of AD with co-morbid DM in ApoE4 carriers was more in comparison to NC with DM (OR = 5.68, P = 0.04). Conclusion. There is a significant association between AD with co-morbid DM and ApoE4 genotype.