Community-Based Organizations Help with Care Coordination for Patients with Dementia
Key is a feedback loop with primary care, too
Older adults with chronic conditions, often including dementia, sometimes receive services from adult day programs that are funded through Medicaid. These might include services from nurses, social workers, and therapists.
“This is a complex, ethnically diverse population with high levels of functional decline and who might have multiple chronic conditions, including 30% with dementia,” explains Tina Sadarangani, PhD, ANP-BC, GNP-BC, assistant professor at New York University Rory Meyers College of Nursing. “What I, as a researcher, truly believe is that for dementia care and for those with chronic conditions of any kind, we need to reimagine what we think of as a care continuum.”
When most people think of the care continuum, they might imagine it as from the hospital to skilled nursing facilities (SNFs) to home, maybe with a primary care provider (PCP) visit here and there. But that is not all, and case managers can use many more resources than those.
“I believe the continuum of care is much broader than that, even within the community,” Sadarangani says. “A majority of Americans wish to age in place at their homes in their community. When you go to the doctor’s office and you go to the pharmacy to pick up your medication, that is a care transition.”
Adult day programs also are part of the care continuum. They offer resources that could give case managers detailed information about how patients function in their daily lives. “They have a tremendous amount of observations on functional assessment,” Sadarangani says.
Start the Conversation
The New York University Center for the Study of Asian American Health (CSAAH) has worked to culturally adapt the Kickstart-Assess-Evaluate-Refer (KAER) framework created by the Gerontological Society of America:
- Kickstart a conversation about cognition;
- Assess for cognitive impairment;
- Evaluate for dementia;
- Refer for community resources.1
CSAAH adapted KAER to support earlier detection of dementia in Asian American communities. As researchers worked on the framework, they partnered with three senior centers and adult day service centers that serve the Asian American community.1
“The idea is to get improved access to care and health outcomes where there may be high levels of limited English proficiency, low income, etc.,” Sadarangani says.
Researchers studied how community-based organizations (CBOs) and providers could work collaboratively to improve care for patients with dementia, using the framework, she explains.
“We found out that the conversation around dementia starts in the community-based setting,” Sadarangani says. “We found if you want to improve care for Asian American communities, the framework needs to be used by both the CBO and the primary care provider.”
Create a Feedback Loop
Case managers, CBOs, PCPs, and caregivers need to work together to create comprehensive standards of care.
A good way to coordinate care for patients is through a continuous feedback loop between case management, PCPs, and patients/caregivers. “If there was a better feedback loop, couldn’t we deliver a much higher standard of care for these populations?” Sadarangani asks.
PCPs might not know where they could refer patients with dementia for better coordinated care, particularly when patients are from minority communities, she notes. With a feedback loop, case managers can fill in the gaps.
“Perhaps care can start around dementia care, kickstart that in the community setting, and then send it to the primary care provider for proper evaluation and diagnostic testing,” Sadarangani explains. “Then, the primary care provider can refer patients back to the community center as a resource.”
The community center/adult day center can provide breakfast and help patients with medication, as well as provide art therapy and other services that keep older patients independent longer. The services also help prevent burnout in caregivers.
The value of this community resource was never more apparent than when COVID-19 hit. In New York state, the pandemic forced adult care centers to close — some permanently. Others transferred staff to SNFs, and some provided remote services by calling their former patients, Sadarangani says.
“In the wake of a pandemic for which there seems to be no end in sight, these community-based organizations are contending with a number of challenges,” she says. “This should not diminish the work they do. Instead, it should highlight how valuable they are and the key role they play in management and care of persons with dementia.”
Some centers reported an increase in falls, hospitalizations, and emergency department visits in patients who do not have day center care. Some of their family members talked about precipitous cognitive decline, she adds.
“We talk with centers about when they’ll reopen, and some say, ‘I don’t know if some of these people, who have deteriorated so much, could come back,’” Sadarangani says.
Anecdotally, Sadarangani has learned nurse case managers now realize how valuable these programs are for their patients. Some case management programs have paid to keep the day program staff involved with their former in-person patients by phone.
“They gave responsibility for case management to the nurses and social workers at the center because they knew so much more about the patient’s family life and meal access. They know which services they would benefit from,” she explains.
The KAER framework is helpful to show what this population needs. But it also must to be strengthened to achieve comprehensive case management through more emphasis on integrating care for persons with dementia, Sadarangani says.
Including adult day care centers in the care continuum makes a great deal of sense because the populations they serve include older people with chronic illnesses, frailty, and dementia.
“Maybe 30 years ago, these centers had a lot of well seniors and featured dancing and dominoes, but now most of their participants should be in a nursing home,” Sadarangani says.
The closing of adult day care programs during the pandemic has created a big gap in services, she adds. Some of these programs have reopened at least partially. Even with marginal community spread of COVID-19, the benefits of these programs might outweigh the risks — at least for some patients and families, she notes.
“For persons living with dementia, their social needs and psychosocial needs are just as important as their medical needs,” Sadarangani says. “That is the challenge of using case management in a primary care provider office, where the focus is on medical care. For case managers who are involved with these patients, what they need is to be able to excel at integrating care.”
REFERENCE
- Sadarangani TR, Salcedo V, Chodosh J, et al. Redefining the care continuum to create a pipeline to dementia care for minority populations. J Prim Care Comm Health 2020;11:2150132720921680.
When most people think of the care continuum, they might imagine it as from the hospital to skilled nursing facilities to home, maybe with a primary care provider visit here and there. But that is not all, and case managers can use many more resources than those.
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.