Caregiving & Culture: Perspectives from the Asian Indian Community

1. 16th annual Updates on Dementia Caregiving & Culture: Perspectives from the Asian Indian Community Sadhna Diwan, PhD, MSW Professor, School of Social Work Director, Center for Healthy Aging in Multicultural Populations (CHAMP) San José State University May 6, 2014

2. Overview • Demographics of Asian Indians (AIs) in the U.S. • AI Dementia Prevalence and Types of Dementia • Known Risk & Protective Factors • Patient Care & Caregiver Issues related to Dementia • Tips for Providers Working with AI caregivers and seniors

3. Demographics & Research on AIs • AI-born immigrant population in US is the third largest immigrant group after Mexicans and Filipinos. • From 2000 to 2010, California’s AI population increased 68% to 528,000 making it the largest AI community in the U.S. • Two subgroups within AIs – early and late life immigrants • Similarities and differences on dimensions of acculturation, English proficiency, peer/social group, mobility, access to services • Research on dementia (few studies) all based on AIs in UK, Canada, India (none in US).

4. Prevalence of Dementia in AIs • By 2025, projected population of 60 yrs+ in India is over 150 million. Dementia and cognitive impairment expected to increase • Varying dementia prevalence rates in India for urban and rural settings: • Rural settings: Prevalence rates range from 1.4% among those 65 yrs +, to 3.5% among those 60 yrs+; and as high as 10.6% in those 65 yrs+ • In urban settings, prevalence ranged from 2.44% among those 65 yrs+ and older to 7.5% for those in urban areas • Variability due to measurement methods and definitions or may reflect true diversity • No prevalence data among AI immigrants in the US

5. Types of Dementia Das SK, et al. 2012. Pal S, Ghosal MK. Dementia: Indian scenario. Neurol India. 60:618-24

6. Risk & Protective Factors for Dementia in AIs • A study from Western India documented advancing age, poor literacy level, low socioeconomic status, and positive family history as risk factors for dementia • Marriage was found to be protective in the same study • A study from Southern India documented family history of dementia as a risk factor for AD and smoking and hypertension as the risk factors for VaD. • From Eastern India, a community study shows that the risk factors for MCI were hypertension, diabetes mellitus, and smoking which included both inhalant and chewing tobacco, as compared to the control population. • Animal studies have shown the protective effect of curcumin, a yellow spice (turmeric) which is almost universally consumed by Indians.

7. AI Patient/Caregiver Issues • How is dementia initially perceived and when & how do caregivers seek help? • Lack of Awareness of Dementia in general • Normalizing memory loss as part of aging – delayed assessment/diagnosis (up to 4 years from symptom recognition to diagnosis) • Often primary care doctor is the main referral source to other resources

8. AI Patient/Caregiver Issues • How do family caregivers make sense of the experience and the diagnosis of dementia? • Even after diagnosis, lack of understanding or knowledge of the “meaning” of Dementia (symptoms, causes, resources) • Attributions vary: • Normal Aging especially for memory loss • Ideas of blame: • Patient’s personality: Patient is not trying hard enough to overcome symptoms • Where this blaming was evident, it had a large impact on the caring relationship

9. Superstition – someone cast an “evil eye” (Nazar) Supernatural forces: Astrology and planetary positions - Role of Saturn

10. Symptoms were due to an individual’s actions in the past –in this or previous life (Karma)

11. Tips for Service Providers Understanding the cultural context: • Filial piety - caregivers opt for home-based care and not residential care options • Perceived acculturation status of the patient - considering mainstream programs (e.g. day care) as unsuitable options • Respect for elders can be a barrier to open communication about problems and possible solutions –

12. Tips for Service Providers • Naming the Condition: The word “Dementia” may be preferred – indicates a condition that is outside the cultural context • One provider noted that other words in South Asian languages may suggest madness and stupidity - • “… If people don’t speak English, they are not linking it [‘dementia’] to anything sinister. It may well be some strange disease. I thought that was better than stigmatizing the condition.”

13. Tips for Service Providers • Psychoeducation for families and patients – on both mainstream and ethnic experiences • Reframing caregiver options and responses within the cultural context • Communication strategies for patient and family - Coaching, role playing, • Use of available Ethnic Resources – support groups, web-based resources, consultation with ethnic providers

14. Interview of a dementia caregiver in India (Bangalore, June 2009) http://swapnawrites.com/being-a-dementia-caregiver/my-perspective/