More than 16 million Americans serve as unpaid caregivers for the 5.8 million people in the U.S. estimated to be living with dementia. Racial disparities exist in both dementia prevalence and in caregiving, with Black communities having the highest rates of dementia of any racial or ethnic group. Compared to their white peers, Black people with dementia have greater emergency department admissions within the last 180 days of life, but are less likely to receive hospice care. Simultaneously, compared to their white peers, Black caregivers of people living with dementia report greater unmet needs, including less access to resource referrals, caregiver education, and care for themselves.
Home and community-based dementia care coordination programs are a critical strategy to provide caregivers with the connections, education, and resources they need to care for family members and find support for themselves. These programs can help to reduce emergency department visits and hospitalizations for people with dementia while also alleviating caregiver depression. Yet, little is known about how such programs can better serve Black caregivers.
The Maximizing Independence (MIND) at Home program provides home- and community-based care coordination for people and families living with dementia. It began as an academic research program and is now being delivered in health plans for lower income individuals in several states across the U.S., and is also available as a self-pay service in a home health agency in the Baltimore region. Through a series of focus groups with Black caregivers, researchers at Johns Hopkins aimed to better understand the unique needs of Black patients and families living with dementia, identify opportunities to improve the intervention, and understand the caregivers’ perceived benefits of participating in the MIND at Home program.
The Playbook spoke with Danetta Sloan, PhD, MSW, MA, assistant scientist at Johns Hopkins Bloomberg School of Public Health and lead author on this recent study, to learn more about the MIND at Home program and how other dementia care coordination programs can better support Black caregivers and their families.
How can programs like MIND at Home proactively identify and address barriers like discrimination and inequitable access to services to better support Black families living with dementia?
When we tried to recruit people into just the intervention itself, we were present in the community and reached out to community-based organizations like the Alzheimer's Association. For recruitment, it’s good to send mailers and have flyers, but there needs to be a presence in the community, because this is a trust-building process. That presence may simply be, “I'm here providing information, but you get to see who I am.” We're present to lend assistance and to be available, and this will help us understand the community needs and tailor programs. It's very difficult to send a letter to someone and have them respond and then start building trust. The trust-building process needs to happen prior to that. I do a lot of this work, but through volunteering my own time outside of usual work hours.
What additional opportunities do you see for dementia care coordination programs to better serve Black communities?
In developing a dementia care coordination program, we must include the community of people that we're serving. It’s important to have people from the community serve on advisory boards, as the MIND at Home program does. Care coordination programs need to integrate the people who experience dementia because that's the best way to understand their needs. Those needs – some of them stay the same – but some constantly change based upon the social determinants of health and where you are.
One professional person of color can’t just be involved either. It has to be a lay person of color who has experienced this or church leaders for instance, who have a pulse on the people in the church in the community or the aging population in under-resourced and underserviced communities. So, I think that's where improvement can be -- in integrating more of the people that we serve in the development and refinement of the program as it's moving forward.
Also, it is important to do evaluations like the one I did and publicly publish the information and share the findings at community-based organizations and events so it is out there for everyone to see. This lets community members know they should be asking to be involved. We don't always have to go out and search for the people that we need to participate, but we have people in the communities who are asking, “Can we be involved in this? I have something to say.” People were also really happy to see me evaluating the program as a Black person where they had really only seen white people in the past.
Has the MIND program responded to the study’s findings with any concrete changes?
MIND at Home is designed to have maximum impact through assessing, addressing, and bridging medical and non-medical service gaps, including social determinants of health. With the comprehensive focus that the model already has, and also coupled with the feedback from this study and other studies that we've completed, it suggests that people who are living with dementia and their caregivers are really receptive to the model.
We are also right now communicating with Medicaid health plans in Texas and Pennsylvania, with plans to expand that to other states. When we develop the model for these Medicaid programs, we include trained community health workers from the populations served so they have an understanding of the needs and context of those communities. This ensures cultural competency or humility on some level. But if we are recruiting and training from the populations served, then that strengthens the care that we're providing to the families.
Another finding included increasing literacy. The MIND program has expanded educational resources and made them more accessible to caregivers to better account for the lower dementia literacy levels and multiple languages.
A key recommendation from the focus group participants was hiring racially diverse staff. How can policymakers and provider organizations support efforts to train, hire, and retain a more racially diverse dementia care workforce?
There is not one answer to this question – it's a multilayer problem. What came to mind when I thought about this was, what are the requirements for providing in-home supports and services? If you have to have a college degree – a doctorate, a masters, or even a bachelors – then you are knocking out a very large population of people of color who cannot afford college. However, they may have the time and resources to participate in a training program. I think that is an opportunity for us to explore.
On another level, we need to take a look at our recruitment methods. How are we recruiting? Where are we recruiting? We need to recruit from the people in the communities that we are serving, and not on a volunteer basis – we need to pay adequate wages. How do we attract people from under-resourced or underserviced populations and not offer an adequate wage?
What role do you believe Medicare and Medicare Advantage (MA) plans play in addressing racial health disparities in palliative and dementia care?
The newer CMS rules for MA plans allow for flexibility and the offering of supplemental benefits and require use of evidence-based clinical protocols. These rules also changed risk adjustment payment models and calculations to more appropriately address or reimburse for the high cost of dementia patients. From what I can see, this is creating really promising changes and lays the groundwork for improving dementia care in the context of MA plans.
The Medicare fee-for-service program, which includes annual cognitive wellness screening and complex case management service codes, is also promising in addressing dementia diagnosis, care planning, and care management. However, provider uptake tends to be low, so some focus needs to be there. The codes don't comprehensively address all of the dementia-related gaps or social determinants of health.
Are there any other program or policy considerations for supporting Black caregivers that you would like to highlight?
I often collaborate with the Black church community. The feedback that I get from them and my community advisory board is that they're always eager to participate, but they need support at home. Long-term care facilities are extremely expensive and most of the people that I work with do not want to send their loved one to a long-term care facility, but they can't manage it at home, especially if they're working or if they also have a chronic illness. So, I see opportunities for us to provide our families with support in the home.
This could mean paying for respite services. It's still less expensive to pay for respite services than it is to pay $15,000 a month to a long-term care facility. Most people living in underserviced or under-resourced communities cannot afford that. What policies can be developed or how can we develop respite programs that are paid for? And what does that look like? Is that someone just coming in to spend eight, 10, or 12 hours a day for a week? How can that be funded? I am not saying defund our long-term care facilities, but I'm saying we need expansions to be able to assist people in staying in their home and providing what's needed in the home so that they can maintain a safe environment. We have another program at Hopkins called CAPABLE, which addresses and supports people to stay within the community in their own home. How can we expand that to support respite?