Doctor Donna Benton is the Director of the USC Family Caregiver Support Center (USC FCSC), clinical psychologist, and a researcher. Currently, her research focuses on low-income Black and Latina women caregivers to learn about their finances and to develop peer-led online courses.
Online courses will assist these caregivers to reduce their out-of-pocket caregiving costs and to provide more effective care. Dr. Benton’s research is focused on two caregiver education programs, KINDER and CONFIDENCE. These programs and others offered by the USC FCSC are important to support families caring for those with dementia who oftentimes are overwhelmed, overworked, and do not take care of themselves with caregiving. Both projects are completed in partnership with USC Leonard Davis School of Gerontology doctoral alumnae Dr. Kylie Meyer of the University of Texas Health Science San Antonio’s Caring for the Caregiver Program.
Dr. Benton’s department prides themselves on making educational programs that address the needs of caregivers by talking to them to learn what they need.
“National surveys have shown that caregivers don’t know the resources available to them. They say things like ‘I wish I had learned or knew about that before like how do I change a diaper? Or how do I make my mom comfortable? Do I have to keep repeating things?’ said Benton.
Educational intervention programs are meant to help answer caregivers’ questions. Most recently, the USC Leonard Davis School of Gerontology of course is examining loneliness and social isolation in light of COVID-19 but one of their main areas of research for the past decade has been on understanding the impact of intersectionality and how it affects aging. That means taking into account the different health disparities that arise based on factors such as race, income, and ethnic groups.
Family caregivers, who are typically unpaid, come from all backgrounds, and experience challenges like loneliness, isolation, financial hardship, and lack of preparation to provide care to a family member. Funding supports research to understand how to shift costs off of families and provide more support through community-based programs. With this research, USC researchers hope to push for equity for these low-income caregivers and break up the silos of funding to provide long term-care and aging support for these communities so people can live well and age well.
KINDER (Knowledge and Interpersonal Skills to Develop Exemplary Relationships) is a new online program to help family caregivers learn strategies to enjoy healthy and rewarding caregiving relationships. The program runs for 8 weeks where participants learn from peer caregiver experiences how to work through their caregiving relationship challenges. The program, funded by Archstone Foundation, is still undergoing evaluation and is part of a research study. Yet, their motto really focuses on the caregiver’s experience with the slogan being -
“You can’t pour from an empty cup.”
Caregivers need to know the importance of taking care of themselves first so they can support their family or loved one who is struggling. The program seeks to provide caregivers with strategies to enjoy a healthy and rewarding relationship with their loved one who is living with dementia.
The KINDER program focuses on helping caregivers who recently started to assist someone with dementia and are finding it difficult to manage caregiving challenges. Through weekly lessons the course teaches caregivers about dementia, how to communicate with the care recipient, strategies to have difficult conversations with care recipients, how to balance safety and independence, how to manage family dynamics, and how to cope with stress. Each week a one-hour lesson follows the experiences of family caregivers who are attending a support group, as they share and work through their caregiving relationship challenges. Plus the course includes resources for participants including self-care tips, reflective exercises, and quizzes. The idea is to make these fun and interactive sessions. Each lesson has been built based on prior research, clinical experience, and focus groups conducted with family caregivers. Participants who complete all the course material each week then get a certificate at the end!
Those who wish to see if they are eligible can check their eligibility here or email questions to email@example.com.
CONFIDENCE is a new program that is in the initial stages of development, with support from AARP Foundation. This project is focusing on low income Latina women caring for someone with dementia. The goal is to help them understand how to lower out-of-pocket costs from caregiving.
According to Dr. Benton, “Many times when we are a caregiver, we pay for the person we care for and there are lots of out-of-pocket costs that may be covered by someone else.”
The program would help caregivers to find local funding assistance to displace out-of-pocket spending on caregiving expenses, such as through Area Agencies on Aging and other senior resources, and plan for future financial challenges. This includes costs like incontinence equipment, prescription costs, and home modifications.
“When we begin caregiving, we forget that it can be very long term care for a caregiver. Often it is over 2 years. On average caregiving costs run between $7,000-$10,000 a year. Black and Latina families spend a higher proportion of their income on these costs than the average caregiver. If we can help them to save more that’s what is important,” said Benton.
Depending on their circumstances caregivers may not have access to healthcare information and insurance to help assist with caregiving and may not know the community resources available to them.
Therefore, the makers of the CONFIDENCE Program want to find out why caregiving costs are so high among Black and Latina caregivers, and offer resources to support caregivers’ financial security. In order to do that they plan to create a three session program that will be live and led by caregivers trained to deliver this program. Focus groups and an advisory council made up of caregivers will inform the content of sessions. CONFIDENCE is expected to launch in January 2021.
Since the course will be online there is no limit on the number of participants, so it can benefit the most people. USC prides itself on its online courses for caregivers even before the pandemic.
“We wanted to reach more caregivers and on average they are younger, and in ethnic communities often even younger than 40. So generally they have some access to technology and understand how to use it,” said Benton.
Many of their participants tune in on their phones and the organization is working to make the program bilingual in English and Spanish.
Other organizations also offer support and classes online like Dementia: Conquering the Challenges of Caregiving by GetSetUp and Care Training Resources by the Alzheimer’s Association. Caring for the Caregiver also offers the Learning Skills Together Program to teach families how to provide complex care tasks, like medication management and safely transferring someone with lived mobility.
Most importantly if you are a caregiver you aren’t alone, reach out to online resources and local resources to assure you are taking care of yourself. Caregiving requires a lot of time, patience, and love so make sure you are getting those in return so your cup is full!
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