ALZ Sucks®: Providing Support for LGBTQ+ People with Alzheimer’s Disease and their Families
Alzheimer's Los Angeles
LGBTQ+ older adults who develop symptoms of Alzheimer’s are frequently mis-diagnosed due to prejudices and face unique barriers when accessing health and long-term care. In partnership with SAGE, Alzheimer’s Los Angeles (AlzLA) will produce five educational videos and a facilitator guide, profiling LGBTQ+ adults with dementia and their family caregivers. Using social media and face-to-face sessions, the videos will reach an under-served and stigmatized population with information to improve their access to quality dementia healthcare.
Please describe the mission of your organization.
Alzheimer’s Los Angeles’ mission is to improve the lives of local families affected by Alzheimer’s and dementia by increasing awareness; delivering effective programs and services; providing compassionate support; and advocating for quality care and a cure.
In which areas of Los Angeles will you be directly working?
- County of Los Angeles
In what stage of innovation is this project?Pilot project or new program
Please list the organizations collaborating on this proposal.
If you are submitting a collaborative proposal, please describe the specific role of partner organizations in the project.
SAGE, the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBTQ+) older adults, will be collaborating with AlzLA on this project. Their mission is to lead in addressing issues related to LGBTQ+ aging. SAGE will be responsible for the following activities: • Review materials produced, including script and educational materials; • Mobilize their constituency during the promotion of LA 2050 and encourage them to participate during the voting period; • Assist with dissemination of final materials; and • Assist with the coordination of screening events.
In addition, other local LBGTQ+ organizations will be approached to partner in dissemination of the finished videos to the populations they serve.
What is the need you’re responding to?
Alzheimer’s disease (AD) is challenging for everyone; however, LGBTQ+ adults living with AD and their families face unique challenges. Often, they do not reach out for a medical diagnosis for fear of poor treatment based on their identity. According to a Lambda survey, more than half of LGBTQ+ individuals report discrimination when seeking healthcare, making them less likely to access care for symptoms of dementia. They also experience health disparities, higher rates of diabetes and high blood pressure, which increase their risk for dementia. Among this population there are high levels of social isolation and stigmatization as they age, making it difficult to find support. With the rising incidence of AD and the growing population of LGBTQ+ older adults, it is time to look for ways to better meet their needs and those of their families. This population has distinct aging experiences and requires specific, targeted outreach to overcome service barriers and mistrust of providers.
Why is this project important to the work of your organization?
This project combines AlzLA’s longstanding commitment to serve L.A. County’s diverse communities through culturally tailored services with our interest in extending our effectiveness through innovative social and multimedia work. It also builds on SAGE’s position as a national educational resource on aging and LGBTQ+ issues. SAGE hosts the National Resource Center on LBGTQ+ Aging, while locally, AlzLA has a track record of successfully completing culturally targeted educational media projects. In 2017, we created “Recuerdos Perdidos”, an award-winning Spanish/English educational telenovela (soap opera) (https://youtu.be/npgY9l81yls) and the “Faces of Caregiving”, a video series showcasing personal stories of five Japanese-American caregivers (https://www.alzheimersla.org/the-faces-of-caregiving-2/). The proposed LGBTQ+ educational videos will draw on this experience while partnership with SAGE will help to assure appropriateness of content and assist with dissemination.
Approximately how many people will be impacted by this proposal?
- Direct impact
- Indirect impact
Please describe the broader impact of your proposal.
A 2019 University of California study suggests members of the LGBTQ+ community are 29% more likely to suffer from dementia – one in seven reported memory loss and other symptoms of cognitive loss. It is believed that these higher rates may be due to higher rates of depression, high stress, and a lack of regular access to healthcare. AlzLA aims to help identify and support LGBTQ+ older adults and their primary caregivers living with Alzheimer’s disease in Los Angeles County. It is AlzLA’s intent that education and social media awareness activities using personal profiles will help highlight the unique issues faced by LGBTQ+ older adults and encourage access to medical care and supportive services for both patients and their caregivers.
Please explain how you will define and measure success for your project.
The LGBTQ+ project will highlight the personal stories and struggles of five individuals or families coping with Alzheimer’s personally or in a loved one. It will cover the basics of Alzheimer’s; how to advocate for yourself as you navigate insensitive healthcare systems; the importance of completing a Durable Power of Attorney (DPA); and other key aspects of care. Short-term success will be measured by ability to achieve project goals: i. Produce five LGBTQ+ video profiles and a facilitator guide ii. Host facilitated screening events reaching 100 members of the LGBTQ+ community iii. Reach 1,000 community members through on-line and social media strategies that incorporate portions of the various profiles Through surveys, attendees/viewers will report measurably increased knowledge of Alzheimer’s and of strategies for improving access to healthcare services.
In the long-term, the project’s goal is to get agreement from three additional local organizations serving the LGBTQ+ communities (possibly the L.A. LGBT Center, Triangle Square and L.A. Department of Aging) to adopt or promote the videos as a strategy to improve access of their clients to healthcare, thus multiplying the impact of this innovative tool and dramatically expanding our reach and impact.
Which of the live metrics will your submission impact?
- Healthcare access
- Older adult well-being
Which of LA2050’s resources will be of the most value to you?
- Access to the LA2050 community
- Host public events or gatherings
- Communications support
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