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Tue, Aug 13 8:24am · HABIT for Spanish Speakers:  Part 2, The Recruitment Strategy in Living with Mild Cognitive Impairment (MCI)

Hispanic Couple

Last week, we shared with you facts about the need for more evidence-based interventions for Spanish speakers with a diagnosis of mild cognitive impairment (MCI). In today’s blog, we would like to update you on how recruitment for the pilot study on the Spanish translation and cultural adaptation of the Memory Support System (MSS) has been going.

For this pilot study, we are hoping to recruit 20 Spanish speakers and their partners. We initially sought to recruit only those diagnosed with MCI but, given the many barriers discussed last week (e.g., lack of healthcare access or English proficiency), it quickly became apparent that we could find very few Spanish speakers in Jacksonville who had been diagnosed. We then decided to also allow Spanish speakers aged 50 years or older with cognitive concerns to participate.

We then had to look beyond the Clinic to find our participants. A key to this has been working on outreach to the Hispanic community in Jacksonville, FL, to provide education in Spanish on MCI and information about our study. So far, we have:

  • Partnered with the Alzheimer’s Association Central and North Florida Chapter, the Mayo Clinic Office of Health Disparities Research, the St. Luke’s Episcopal Church and Community Center, and local Hispanic community leaders.
  • Used media posts on Facebook and digital boards at Mayo Clinic Florida.
  • Written communications in a local Hispanic newspaper and letters to Spanish-speaking healthcare providers.
  • Given presentations at local churches and programs for English as second language students and for the U.S. citizenship exam as well as interviews at a local Hispanic TV channel.

As of today, we are excited to share with you that over 40 Hispanics have expressed interest in participating, and 4 participants and their partners have already completed the Spanish MSS training. We will continue delivering the MSS throughout the rest of 2019 and the first semester of 2020. We believe that this is an important step towards developing and promoting interventions that are linguistically and culturally appropriate for the Hispanic community.

Thank you to all our participants! If you have any ideas to help reach more people, let us know!

Tue, Aug 6 8:09am · HABIT for Spanish Speakers: Part 1, The Need in Living with Mild Cognitive Impairment (MCI)

Hispanic Mother Daughter

A while back, we told you about a research grant we received from the Alzheimer’s Association Research Fellowship to Promote Diversity (AARF-D) program to carry out a study on the Spanish translation and cultural adaptation of the Memory Support System (MSS).  We wanted to give you an update on how recruitment for that study has been going.  In today’s blog, let’s talk about why there is a need for more interventions for Spanish speakers in our country.

In the United States, Hispanics represent 17.8% of the population. Compared to people of Caucasian origin, Hispanics are 1.5 times more likely to develop mild cognitive impairment (MCI) or dementia. However, many Hispanics face linguistic, cultural, and economic barriers that limit their access to early diagnosis, treatment, and research.

It is estimated that 1 in 9 Hispanic adults aged 45 years and older are experiencing subjective cognitive decline (self-reported memory problems that have been getting worse over the past years) and among them:

  • Nearly 1 in 2 reports that their cognitive decline interfered with social activities, work, or volunteering.
  • About half have to give up day-to-day activities and need help with household tasks.
  • Less than half have discussed their symptoms with a healthcare provider.

Regarding caregiving, 1 in 6 Hispanic adults are caregivers and among them:

  • Nearly half have provided care to someone for at least 2 years.
  • One third have provided care for at least 20 hours per week.
  • About 58% are women and 9% are age 65 or older.
  • About 38% are caring for a parent or parent-in-law
  • Nearly 1 in 4 non-caregivers expect to become caregiver within 2 years.

We initially sought to recruit only Spanish speakers diagnosed with MCI, but given the fact that many do not have access to healthcare or have not seen their doctor about their memory symptoms, it quickly became apparent that we could find very few Spanish speakers in our area who had been diagnosed with MCI. So, we had to change how we looked for these participants with cognitive concerns. We had to leave the clinic and hospital system and get creative. Next week, we will talk more about how we did this, so stay tuned!

References:

https://www.cdc.gov/aging/

https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf

 

Oct 2, 2018 · HABIT Habla Español in Living with Mild Cognitive Impairment (MCI)

Hispanic Couple

Hispanics are the largest ethnoracial minority group in the United States (currently at 17.8% and projected to increase by almost 400% by 2060). Among Hispanics, 76% are Spanish dominant or balanced bilinguals (equally fluent in English and Spanish). Of those 65 years of age or older, 21% do not speak any English. Compared to Caucasians, Hispanics are about 1.5 times more likely to have Alzheimer’s disease and face many barriers to care (e.g., language, different cultural beliefs) that limit their access to early diagnosis, treatment, and research.

As a core component of the HABIT program, the Memory Support System training (AKA “the calendar”) has been proven effective in helping participants with Mild Cognitive Impairment (MCI) follow their treatment plan, remain independent, and improve their memory and self-efficacy. Care partners participating in the Memory Support System have also seen improvements in their mood compared to care partners not in the program. Like pretty much all programs for MCI in the United States, the Memory Support System has only been used in English with Caucasians so far.

This past April under the mentorship of Dr. Melanie Chandler (HABIT Director at Mayo Clinic Florida), I applied for the Alzheimer’s Association Research Fellowship Award to Promote Diversity Program, by proposing a research study to do the Spanish translation and cultural adaptation of the Memory Support System training. The goal of this program is to support minority researchers in training who are involved in Alzheimer’s research. Today, I am excited to announce that we were awarded a $140,000 grant to conduct our proposed study!

During this new research study, we will invite 20 Spanish-speaking Hispanics with MCI and their care partners to learn the new Spanish Memory Support System. We will measure cognitive functioning, day-to-day activities, self-efficacy, and mood before and after the program to see how it works with Hispanics.  This research study is an important step to develop and promote interventions that meet the needs of the Hispanic community and will also lead the way to more evidence-based programs for other languages and cultures.