From the Ivory Tower to the Real World: Translating an Evidence-Based Intervention for Latino Dementia Family Caregivers into a Community Setting



Fig. 9.1
“The Confianza Triangle” of successful recruitment as applied to the Southern Caregiver Resource Center (SCRC) example in this chapter. In the figure, (1) a community agency first establishes trust with Latino individuals, (2) the researcher (or SCRC) establishes trust with the community agency, and (3) the researcher (or SCRC) indirectly establishes trust with the Latino individuals



The La Maestra Community Health Center and San Ysidro Health Center were selected as partners for this program for many reasons, such as their more than 75 years of providing exemplary health and mental health services to San Diego’s Latino community, but equally important was the leadership of both these agencies. Mr. Velasquez had worked closely with the former chief executive officer of San Ysidro Health Center, Mr. Ed Martinez, for over 10 years on Latino and dementia programs, which included the Dementia Care Network project (El Portal de Esperanza, “the Portal of Hope”) developed by Mr. Velasquez in 2002 and funded by The California Endowment and a physician education project in 2003 funded by Forest Laboratories. Mr. Velasquez and Mr. Martinez engaged in collaborative programs educating families, professionals, and elected officials about the growing concern of Alzheimer’s disease and associated dementias in the Latino community.

After an introduction by Mr. Martinez, Mr. Velasquez developed a relationship with Ms. Zara Marselian, chief executive officer for La Maestra Community Health Centers, who also began collaborating on dementia-specific projects with Mr. Velasquez and Mr. Martinez. After the Dementia Care Network project ended, Mr. Martinez and Ms. Marselian jointly funded a Memory Screening Clinic in collaboration with the University of California San Diego that continues to operate to this day. When San Diego County Behavioral Health Services and Rosalynn Carter Institute for Caregiving presented the opportunity to develop a REACH program in San Diego, Mr. Velasquez knew that both the San Ysidro Health Center and La Maestra Community Health Center would be a natural match for the program because of the commitment from their leadership.

After the partnerships were in place, a small team of external consultants was engaged to evaluate the SCRC’s readiness and cultural competence to engage the Latino community effectively and deliver the evidence-based programs with fidelity to the original REACH protocols.

Next, an advisory committee was formed, consisting of several original REACH researchers, Latino dementia caregivers, local university professors, promotoras from partnering agencies, and the SCRC’s management team. The committee met regularly to discuss ways to tailor the REACH protocols to fit the unique needs of Latino caregivers in San Diego County. The committee evaluated two proposed treatment modalities (and written materials that went with them) for their cultural relevance and sensitivity, clarity, and likely effectiveness with the target group. Special emphasis was made on certain components that these modified interventions needed to have to ensure fidelity to the original programs from which they derived. These components included keeping patients and caregivers safe; caregivers learning to manage (or respond differently) to difficult behaviors from the person with dementia; caregivers learning skills to handle negative emotions; and caregivers practicing a range of communication skills—especially how to obtain more help from other family members. Providing information on local resources was also critical. In addition, for practical reasons (e.g., staffing and overall costs), each of the original programs needed to be shortened.

Lastly, because data collection plays an important role in the evaluation of an evidence-based program, the SCRC partnered with the Health Services Research Center (HSRC) at University of California San Diego to develop a database to house the data obtained from the baseline and post-treatment assessments. The HSRC also provided technical assistance on data tracking and monitoring and prepared the empirical reports that were submitted back to funding sources.

Figure 9.2 depicts the chronology of how the partnership has formed and the actions taken to implement and evaluate the program.

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Fig. 9.2
Chronology of partnership



Implementation: Examples of “Culturally Tailoring”



Renaming the Program


The acronym of the program, REACH, does not correspond to a word with any meaning in Spanish. Based on careful considerations from several focus groups consisting of dementia caregivers, promotoras, and care managers, we renamed REACH I (the small group program) CALMA (Cuidadores Acompañándose y Luchando para Mejorar y Seguir Adelante, which translates to “caregivers giving each other company and striving to get better and move forward”), and we renamed the REACH II program (based on in-home visits and provision of extensive information about caregiving and cognitive impairment) CUIDAR (Cuidadores Unidos Inspirados en Dar Amor y buscar Respuestas, which translates to “united caregivers to give love and seek answers”). Although the new names are not direct or literal translations, the acronyms are meaningful to the target group and conceptually appropriate.


Training the Promotoras and Care Managers


Training workshops for promotoras orient them to the SCRC services and teach them about key aspects related to dementia caregiving. The original length of the training was 10 hours (five 2-hour sessions), but we later condensed it into 5 hours due to logistical issues. Topics covered introduction to the two REACH models, eligibility criteria, and administrative protocols/procedures (e.g., referral protocols); additional services available in the San Diego area for older adults and caregivers; elder abuse and mandated reporting laws; Alzheimer’s disease, dementia, and related cultural beliefs (e.g., Alzheimer’s disease being equal to normal aging); skills to reduce caregiver stress; and plans for monthly promotora meetings and regular in-services. Lastly, we gave promotoras reading materials in both English and Spanish on topics related to Alzheimer’s disease and associated dementias, caregiving facts and statistics, and common signs of depression and anxiety.

The purpose of the 2-day training workshop for care managers was to train the two bilingual/bicultural master’s degree-level care managers hired by the SCRC to deliver the REACH interventions. On the first day, Dr. Gallagher-Thompson and Dr. Cardenas trained them in how to deliver the CUIDAR home-based caregiver intervention (corresponding to REACH II). They highlighted adherence to the original treatment protocol by including topics such as the following:



  • CBT (the theoretical base from which the program was developed)


  • Identifying caregivers’ risk priorities


  • Simple relaxation techniques (e.g., breathing exercises)


  • Using a “stress diary” to log stress and anxiety level daily, as well as the situations that trigger these feelings


  • Listing positive activities and tracking their completion daily


  • Developing an “action plan” for both the caregiver and care-recipient to implement skill practice


  • Using a thought record to examine and alter negative thinking patterns about caregiving


  • Completing the health passport Mi Guia de Salud (“My Health Guide”), in which caregivers record specific details related to their medical check-ups, medications taken, and medical providers’ contact information


  • Developing a “maintenance plan,” which involves asking caregivers to think about situations or events likely to occur in the next few months that will cause stress and recording skills learned in the program that can be used to help deal with the situation

On the second day, care managers, interventionists, and promotoras were brought together to learn the CALMA group program (corresponding to REACH I). They received background information and results from the original REACH I group program. During the training the interventionists participated in live demonstrations of each of the four CALMA group sessions.


Description of the Final Modified Interventions Used in San Diego County


We redesigned the CALMA small group program to include four group sessions to be offered by a trained care manager with assistance from a promotora. The care managers acted as lead group facilitators responsible for teaching the skills and exercises covered in the session. The promotoras assisted the care managers in various ways, such as walking around the classroom to assist individual caregivers with the exercises and materials (especially for caregivers with literacy issues or needing help writing their responses). We also offered three between-session telephone calls. Care managers would check in with caregivers on how things were going as they were implementing suggested changes and practicing their assigned exercises at home. The four CALMA group sessions encompass the key components from REACH I: managing stress with relaxation exercises; increasing pleasurable activities (i.e., behavioral activation); cognitive restructuring; assertiveness training to help manage anger and frustration; and getting the help one needs. We eliminated certain components from the original protocol because other SCRC services readily offered them. The format of the sessions closely followed the original REACH I procedures. For example, each session started with a review of the previous class material and home practice assignments and ended with an introduction of a new relaxation exercise. Additionally, to ensure program fidelity, we required care managers to audio-record the sessions, which a consultant later reviewed and rated, and both care managers and promotoras had opportunities to ask questions and receive feedback from weekly supervision meetings.

The CUIDAR home-based program was redesigned to include four individual home sessions offered by a care manager and three telephone calls in between home sessions (a shortened version of the original REACH II protocol). We tailored each session to the individual caregiver’s needs by determining which modules included in the Caregiver’s Guide were most relevant and important.

The decision as to which content areas would be covered was based on review of baseline assessment information and consultation with Dr. Gallagher-Thompson, who met by teleconference biweekly with the care managers for the first year of program implementation. Following the original REACH II model, each session took place with the individual caregiver in his or her home and lasted up to 2 hours. The telephone calls provided an opportunity for the care managers to check in and give feedback to the caregivers on the specific skills that were being taught.

Care managers could choose among the following modules:



  • Learning to build and maintain a strong social network (Social Support)


  • Managing caregiver stress by learning to use relaxation exercises (Managing Stress)


  • Increasing caregiver pleasurable activities (Pleasant Activities)


  • Restructuring negative or unhelpful thoughts to improve one’s mood (Understanding Your Feelings)


  • Maintaining one’s physical health by attending to the caregiver’s medical appointments and tracking personal health-related information (Healthy Life)


  • Home safety tips to reduce potential hazards or injury to dementia patient (Home Safety)


  • Tips on how to better communicate with someone diagnosed with dementia (Communicating with Your Loved One)


  • Managing difficult dementia-related behaviors, such as wandering, asking the same question repeatedly, and forgetting names and faces (My Loved One’s Behavior)

We examined the content to make it specific to the region (e.g., challenges involved in border crossing and whether comparable services would be available in Mexico to those in CA) and improve the look and feel of the materials and make them more user friendly. For example, the Caregiver Guide contained culturally appropriate photos and images throughout and had pockets to insert worksheets for each module. Every module is color-coded and includes a brief introduction to its topic to orient the caregiver to the section. Additionally, we gave special attention to the language used in each module for cultural appropriateness and ensured that the literacy level was maintained at the 6th grade level or lower to meet the average reading level of the target Latino group. Lastly, several modules included a cultural Dicho, which is a special idiom or quote known in the Latino culture that is often used to make a point or motivate a change in behavior.

We implemented several measures to maintain fidelity to the original REACH interventions. Consultants again carefully reviewed final materials, and the care managers were required to attend training sessions (described earlier) to learn the steps to deliver the interventions correctly. For both programs, care managers were required to audio-record their sessions for fidelity checks. These were done by Veronica Cardenas, who is a bilingual/bicultural Spanish speaking psychologist who worked on the original REACH projects in northern CA with Dr. Gallagher-Thompson. Feedback was provided to the care managers in a timely manner so that the interventions would be delivered as planned.

We further modified the programs following the initial launch. At first, the four sessions in both programs were to be offered every other week (per consultants’ recommendations) as a way to extend the length of contact with caregivers and allow more time for materials to be absorbed and applied to caregivers’ situations. The SCRC quickly discovered, however, that a significant number of caregivers were not returning or were missing from sessions. As a result, the four sessions were offered in consecutive weeks—a modification that significantly improved participant retention and satisfaction with the program.


Outcomes


The REACHing Out program has been successful and exceeded target expectations for enrollment. The overall program also was successful in other target outcomes related to caregiver psychological well-being, to be described below. The original target of the Rosalynn Carter Institute for Caregiving was to serve 25 Latino caregivers in one year, whereas San Diego County’s goal was to serve 200 Latino caregivers annually for the duration of the contract. Since enrollment began in June 2010 through January 2014 (the period for which data are currently available), a total of 647 caregivers enrolled in CALMA and 39 in CUIDAR. In the 2012–2013 fiscal years alone, the SCRC enrolled 231 Latino caregivers into the combined programs. Thus, these programs appear to have been well received in the Latino communities in southern San Diego County. In fact, they have now become “institutionalized” into the standard SCRC program offerings—a significant milestone that was not anticipated at the outset but is perhaps the most important outcome of this body of work.
We need to view results in the context of translational research – from ivory tower to community – rather than in the context of traditional academic research .

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Jun 22, 2017 | Posted by in PSYCHIATRY | Comments Off on From the Ivory Tower to the Real World: Translating an Evidence-Based Intervention for Latino Dementia Family Caregivers into a Community Setting

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