Recuerdos Perdidos/Lost Memories Telenovela Project

Health Care Access

County of Los Angeles

Expand existing project, program, or initiative

The Recuerdos Perdidos/Lost Memories Telenovela Project was developed in alignment with Alzheimer's Los Angeles' longstanding commitment to serve Los Angeles' diverse communities through culturally appropriate programs, and a more recent interest in extending its reach through innovative multimedia and social media work. Awareness of Alzheimer's disease and related dementias among Latinx people in the U.S. has been estimated to be 20 years behind awareness in the "mainstream" population due to lack of knowledge about the disease; stigma and shame felt in response to their relative's disease-related behaviors; and the paucity of culturally and linguistically matched information and education about the disease to support Spanish-speakers with dementia. As a result, people with dementia do not get appropriate care and their family caregivers report higher rates of depression. There is a serious need for culturally appropriate education and support programs to help these caregivers.

The Recuerdos Perdidos/Lost Memories Telenovela Project is a community education and outreach project that uses telenovelas (four-part, soap opera-like format videos) as a tool for engaging L.A. County's Latinx family caregivers and increasing their understanding of Alzheimer's disease and related dementias (ADRD). The Project uses the telenovela as the central tool during community education events. Project staff, working with an established network of community-based providers, arrange for screening events of the telenovela, during which they facilitate discussions. The program highlights the struggles of a Latinx family in East L.A. as they experience their grandmother's decline into dementia. Season One introduces the audience to the family; Alzheimer's disease and its warning signs; how to get a diagnosis; and what to expect with disease progression. Season Two follows the same family as the dementia progresses. This Project seeks to improve understanding of the difficult symptoms of ADRD and how to manage them, and how to access medical care and supportive services. The telenovela is available online and on social media. It can be viewed in either English or Spanish, including subtitles to facilitate simultaneous viewing by family members with differing language preferences. The telenovela is freestanding and can be used without training. However, facilitator guides have been developed for use in facilitated group workshops.

In L.A. County, there are nearly 44,000 Latinx people living with a dementia and that number is expected to double in ten years. Dementia is more common in this ethnic group, yet Latinx people are less likely to be diagnosed or receive care. Due to higher levels of poverty and lower levels of education, these conditions are not well understood, and this community faces significant barriers to accessing care. Alzheimer's Los Angeles (LA) seeks to increase awareness about ADRD among the local Latinx community. This innovative intervention permits wider dissemination of complex health knowledge and addresses the stigma that is often associated with dementing conditions. In the short-term, through the telenovela, Alzheimer's LA hopes to reach 200 local Latinx caregiving families in-person and 5,000 online. In the long-term, Alzheimer's LA hopes the telenovela will be used broadly, locally and nationally, to educate families and decrease the stigma that can prevent them from seeking care.

An external evaluation conducted by the UCLA School of Public Health on the impact of the Recuerdos Perdidos/Lost Memories Telenovela Project demonstrated that it effectively reached and educated underserved Latinx family caregivers. The data indicated that nearly 90% of the participants stated that watching the telenovela helped them to increase their understanding of Alzheimer's disease; recognize the signs of Alzheimer's (86%); understand the process of getting a diagnosis (84%); and to see how the disease affects the whole family (91%); 97% stated they would recommend watching this telenovela to others. In terms of combating the stigma of Alzheimer's disease, the participants were asked to state their level of embarrassment over disease-related behaviors and how easily they might criticize behaviors. On both items, after watching the telenovela, there were statistically significant declines in levels of embarrassment and tendency to criticize the patient or caregiver.