Challenges in supporting people with dementia from Latino backgrounds and

their family carers

Richard H. Fortinsky, PhD Center on Aging

University of Connecticut School of Medicine Farmington, Connecticut, USA

Presented at: Making Research Count Practice Development Workshop

King’s College London 27 May 2014

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Acknowledgments Collaborators on Latinos and dementia care research stream: – Delia J. Gonzalez-Sanders, PhD, LCSW – Julie T. Robison, PhD – Kelly Ruiz, MS

Community partners: – Institute for the Hispanic Family, Hartford, CT – Springfield Partners, Inc., Springfield, MA

Funding: – Alzheimer’s Association (IIRG-06-26993) – Donaghue Medical Research Foundation (DF02-063)

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Presentation outline Overview of Latino population in the USA Ethnicity, race, and dementia prevalence Ethnicity, race, and family carers Overriding Latino cultural values influencing family carers of people with dementia Latino family carer experiences in seeking help for dementia diagnosis and post-diagnosis support Implications for social workers and other care professionals

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Current and Projected Ethnic and Racial Distribution of Older USA Population,

2010-2050

2050 data: USA Census projections

USA Latino Population in 2010 Nationality of 50 million persons reporting background as “Hispanic, Latino, or Spanish”: – Mexico: 32 million – Puerto Rico: 4.6 million – Cuba: 1.8 million – El Salvador: 1.6 million – Dominican Republic: 1.4 million – Smaller numbers from Brazil, Colombia, Peru,

elsewhere in Central and South America Mexicans concentrated in Southwest and West, Puerto Ricans in Northeast and Florida, Cubans in Florida

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USA Census, 2010

Special Status of Puerto Ricans Residents of Puerto Rico granted USA citizenship in 1917 Free to move from USA mainland to Puerto Rico and back again Immigration concerns that affect other Latinos do not affect Puerto Ricans Unique implications for people with dementia and family members Connecticut has greatest proportion of Latinos from Puerto Rico (about 60%)

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Racial and Ethnic Disparities in Educational Attainment, USA Older

Population, 2010

Racial and Ethnic Disparities in Income Level, USA Older Population,

2008 Median income in households headed by persons age 65+: – Non-Hispanic Whites: $44,188 – African-Americans: $35,025 – Hispanics: $33,418

Poverty rates: – Non-Hispanic Whites: 7.6% – African-Americans: 20.0% – Hispanics: 19.3%

Sources: Statistical Profiles of Black and Hispanic Americans Aged 65+: 2008. U.S. Administration on Aging, USDHHS, Washington, DC.

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Hebert, LE, et al. Neurology 2013, pub ahead of print, February 6.

Cognitive Impairment Rates by Racial and Ethnic Group Status, USA, 2006

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Alzheimer’s Disease and Other Dementia Rates Across Racial and Ethnic Groups,

New York City Data, 2006

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Dementia-related racial and ethnic group health disparities

Limited evidence shows Latinos have a younger age of onset of cognitive impairment, by nearly 7 years. Role of genetic factors remains unclear, with no evident disparities in genetic predisposition. More likely that higher prevalence of diabetes accounts for some of the observed difference in cognitive impairment between Latinos and non-Hispanic Whites. Differential educational attainment might play a role. Disparities found in use of “anti-dementia” prescription medications, with Hispanics and African-Americans less likely to use than Whites.

Alzheimer’s Association, 2010 Alzheimer’s Disease Facts and Figures

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Family Care for Older Adults Across Racial and Ethnic Groups

Latino carers report more depressive symptoms and somatic complaints than non-Hispanic Whites and African American carers. Latino and African-American carers more likely than non-Hispanic Whites to report positive aspects of caring, and to cope with caring responsibilities through use of spiritual and religious activities.

Coon et al, Aging & Mental Health 2004; 8:330; Mausbach et al, JAGS 2004; 52:1077.

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Historical Latino Cultural Values buen educado: “proper demeanor”: moral goodness tied to fulfilling obligations to family, friends, neighbors, co-workers – Begins with child-rearing, with emphasis on

engaging infants and toddlers in social relations confianza: understanding that mutual trust leads to security and bonding in relationships simpatica: emphasizes dignity and respect toward others to achieve harmony in interpersonal relationships

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Study of Latino carers and dementia

Little known about Latino carers’ experiences when their relative has dementia – Especially true of Latinos from Puerto Rico

We aimed to determine: – Latino carer experiences seeking information and

help about dementia – Whether experiences differed by socioeconomic

status of Latino carers – Whether experiences differed by familial

relationship of carer to person with dementia

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Design and Recruitment

Cross-sectional design with single, in-person interview with eligible subjects. – Self-identified as Hispanic or Latino – Relative with a physician’s diagnosis of dementia – Relative received care from subject and lived in the

community; later expanded to nursing home. Recruited eligible subjects via wide range of methods, including radio and TV spots; assistance from Latino service organizations.

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Data Collection & Analysis

Consent, interview occurred in subjects’ homes. Interview tool translated into Spanish and back translated before use in field. Semi-structured interview component was audiotaped. All interviews conducted in Spanish; audiotapes being transcribed in Spanish and then translated into English. Qualitative coding guide established to identify themes in experiences seeking help. Chi square analyses used for closed-ended measures. – Experiences with physicians regarding dementia-related advice

and guidance.

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Symptom management Support service linkage Medication management Carers were asked specific “yes/no” questions about whether any physicians provided advice or guidance in these three domains.

Dementia Care Domains Framing Family Carers’ Experiences with Physicians

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Sample Carer Characteristics (n=55)

93% female 60% daughters; 18% spouses; 22% other relatives 53% live together with care recipient Mean age: 51 (sd=12) years; range: 30-76 years Mean length of time caring: 4.7; max 19 years. 78% Puerto Rican, most born on the island – Most others from Dominican Republic

Years of education – 36% < high school – 22% high school – 42% some college.

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Experiences with Physicians

30-40% reported that physicians provided advice or guidance about symptom management and support service linkage. 60-70% reported that physicians provided advice or guidance about medication management. 55% rated symptom management advice “poor” or “fair” 72% rated support service linkage advice poor or fair 30% rated medication management advice poor or fair. No statistically significant differences found according to carers’ educational level, or by their familial relationship to person with dementia.

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Qualitative Results: Language Issues

Major theme: Language is often a communication barrier among family carers, people with dementia, and physicians. Subthemes: – Physician may speak Spanish but other providers do not

(nurse assessors; emergency room staff) – Physician speaks only English and carer must serve as

interpreter if fluent in English – Physician speaks English and carer speaks only limited

English; embarrassed to ask for interpreter. – Physician insensitive to language barrier and supplies no

interpreter.

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Illustrative Quotes: Language Issues 56 y.o. female cousin: “The doctor (primary care doctor who did speak Spanish) said: ‘this is Alzheimer’s, but she has to go to the psychiatrist or neurologist…he was a Puerto Rican doctor, but finding a (specialist) who speaks Spanish was the most difficult part, and like another whole year went by to be able to make the diagnosis.” 40 y.o. daughter, about E.R. visit: “…they could not communicate with her, she got more violent and fearful. If there had been a Hispanic person that spoke her language she would have stayed calmer.” 46 y.o. daughter, about nurse assessment ordered by Spanish speaking primary care doctor: “(the nurse did not know Spanish…the exam was in English…I am not a professional nurse and I had to serve as an interpreter for my daddy.”

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Illustrative Quotes: Language Issues 49 y.o. daughter: “I take her to all her appointments because I can translate…I realized that she and papi used to go to the doctor, but he would not tell them the problems they had…if they had communicated more, I believe it would have been detected earlier.” 57 y.o. daughter: “It would have been better if they had found me an interpreter. But I feel embarrassed having to ask…there are many things I don’t understand too well, but there is no one in the office who speaks Spanish.” 59 y.o. wife: “he (doctor) knows that my husband and I don’t speak English, and…he keeps talking as if I knew. Sometimes my husband has things he feels and I can’t explain to the doctor.”

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Qualitative Results: Influences of Hispanic Culture on Carers

Major sub-themes: – For Latinos, dementia means craziness, leading to

delayed help seeking. – Learned caregiving within families across

generations (grandparent to parent to caregiver). – Avoidance of nursing home placement at all

costs, often stated in comparison to non-Hispanics.

– Strong desire for culturally-sensitive community support services for Hispanics, ranging from doctors to support groups.

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Illustrative Quotes: Influences of Hispanic Culture on Carers

59 y.o. daughter: “Mild dementia, my mother hates that word because for us, Latin people, that word is craziness, so every time they say dementia, I think if she had a handbag she would want to hit people with it.” 40 y.o. daughter: “in my observation this is seen a lot in the Hispanic community…and that kills the persons (with dementia symptoms) because…if someone tells them ‘look, go see a psychologist’ it is not because you are crazy, is to look for help…”

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Illustrative Quotes: Influences of Hispanic Culture on Carers

33 y.o. daughter: “We, Hispanics, are very affectionate, and when we love, we truly love and we don’t have the heart to turn our back on a relative when they need us. My mother did it for me and for my grandmother also.” 30 y.o. daughter: “…it is the way that one is raised. What they teach you…my mother took care of my grandmother, my grandmother took care of her mother.” 57 y.o. daughter: “I believe part of the culture is taking care of them, and protecting them, because this is what they want…to be protected, they want to be loved…”

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Illustrative Quotes: Influences of Hispanic Culture on Carers

45 y.o. daughter: ”I have gone through a Calvary to support my mother…one has to do what one has to do, and I will never, I have always said, I will never put her in a nursing home.” 55 y.o. wife: “I would like for things to change, that there were support groups (for Hispanic people) so that one could speak to other people…and be able to help one another like in Alcoholics Anonymous…and maybe one could have a little bit less of tension.” 36 y.o. daughter: “…a lot of Hispanic persons would not have a fear of going and consult with doctors (if) there were more Hispanic doctors…they would inform people a lot about Alzheimer’s disease in Spanish, about the consequences.”

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Study Conclusions and Next Steps Latino carer experiences with care providers were often fair to poor regardless of their socioeconomic status. Language barriers and lack of culturally-sensitive health care and community support services were clearly evident. Need to develop Spanish language and Latino culture-sensitive home and community-based services to educate family carers about dementia and how to prepare for the future.

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Lessons for Care Professionals Be sensitive to underlying Latino cultural values of bonding, trust, importance of interpersonal relationships Understand strength of kinship in providing care to those in need – Both might lead to difficulty in help-seeking

Language barriers amplify cultural misunderstandings by care professionals Latinos of all socioeconomic levels are at risk for these poor care provider experiences.

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