Coordinating Care for Patients with Dementia Challenges Case Managers
Proportion of people with dementia on rise
Case managers will see more patients with chronic illnesses along with signs of dementia.
- Family caregivers might be unaware of the early signs of dementia. They may be angry at the patient’s noncompliance.
- Case managers can work with adult day care facilities to help patients with dementia and comorbidities adhere to their medication and treatment regimens.
- One technique to employ is a feedback loop between case managers, primary care providers, patients and caregivers, and community-based organizations that see these patients.
As the population ages, case managers sometimes find their patients with chronic illnesses, like diabetes and heart failure, show signs of dementia.
The proportion of Americans with Alzheimer’s disease and related dementias is expected to grow from 1.6% of the U.S. population in 2014 to 3.3% of the population in 2060. (Find out more at: https://www.cdc.gov/media/releases/2018/p0920-alzheimers-burden-double-2060.html.)
Case managers might see patients who have not been diagnosed with dementia forget their medications, or not eating, exercising, or sleeping well. Their family caregivers might say the patient is driving them crazy, but cannot explain any recent behavioral changes.
“You can almost diagnose dementia by the anger in the family and the spouse,” says Toni P. Miles, MD, PhD, professor of epidemiology at the University of Georgia College of Public Health.
Since dementia is common, particularly in areas with many retirees, case management teams should include a member with dementia training and expertise, she suggests.
Patients’ families often miss the signs of dementia. Case managers and providers also might miss the signs. “Usually, dementia is a problem with older adults. We’re used to depending on these people for their wisdom and finances, and these are critical people in their social circles and families,” Miles says. “The hardest part is just seeing it.”
Once they recognize the patient might have dementia, there are actions they can take. “What makes families and providers angry is they assume the patient’s noncompliance is willful, and it’s not,” she explains. “The person just can’t get their act together.”
Primary care providers (PCPs) also might miss opportunities to screen for dementia. “Some primary care providers do not want to entertain a diagnosis of dementia because they feel like there’s not anything they can do about it, and not everybody who acts crazy has dementia,” she adds.
Screen Patients for Dementia
It is important for patients with signs of cognitive impairment to be evaluated for dementia and their ability to manage their own health needs, says Stephanie Hughes, MPP, public health researcher with RTI International in Chicago.
“Research suggests that people with dementia who receive care coordination may experience improved quality of life and benefit from increased connection to community-based supports and services,” Hughes explains. “Their caregivers may also experience decreases in depression and feelings of stress or burden.”
Clinicians should try to identify the cause of cognitive issues. Case managers can collect information from adult day center staff to identify causes other than Alzheimer’s disease. What appears to be dementia could be a side effect from medication or the result of poor sleep habits or sleep apnea, Miles says.
“Dementia can be caused by things, or it can be its own primary problem,” she adds.
PCPs struggle with how to start a conversation around dementia, says Tina Sadarangani, PhD, ANP-BC, GNP-BC, assistant professor at New York University Rory Meyers College of Nursing.
“From a case management perspective, there is a lot that goes into care for persons with dementia and their caregivers,” she explains. It is helpful for case managers to facilitate these discussions with PCPs and families.
Also, the staff of adult day care centers, which provide Medicaid services, know which patients show signs of dementia — even when it is undiagnosed, Sadarangani says.
“Maybe a person at the care center will say, ‘I do art with Mr. X every day. He’s very agitated, and that’s not normal for him,’ while a primary care provider who sees the person every six months might say, ‘He seems normal to me,’” Sadarangani explains.
Adult day center staff have excellent observational and functional assessment skills, she adds. (See story in this issue on how case managers can work with adult day care centers to help dementia patients.)
“The analogy is the school teacher: If you have a child with developmental disabilities or behavioral issues, the teacher has a lot of information on the student, how he or she interacts with other people, and the student’s academic performance,” Sadarangani explains.
Case managers might ask the adult care center staff about any concerns or issues they suspect. They also should keep in mind that undiagnosed dementia could be a factor in the patient’s difficulty in staying healthy.
“If you have someone you’re seeing who is not taking care of their diabetes or wound and are not managing very well, you have to think about it,” Miles says. “They know what to do, but can’t get their act together and get it done.”
The goal of case management is to care for the whole person to identify and overcome their obstacles to staying well and avoiding hospitalizations and emergency department (ED) visits.
“This is why we have case managers and why we’ve evolved in medicine to have medication reconciliation and all of these support services,” Miles notes.
The challenge is how to pay for population healthcare coordination. “We still need to learn more about the impact of care coordination healthcare utilization and costs,” Hughes says. “There are so many variables involved in care coordination, including characteristics of the patient and of the healthcare system, frequency of contact, and details of how coordination is delivered.”
One technique — with negligible cost — is for case managers and caregivers to work together to assist with care management, Hughes says.
“People with cognitive impairment often need this support,” she adds. “Informal caregivers may also be assessed for unmet needs.”
Also, case managers should keep in mind that people with dementia tend to benefit from more frequent contacts and in-person interactions with a care coordinator. “This may require smaller caseloads than with clients who have other conditions,” Hughes adds.
When there are problems with patients’ adherence to treatment regimens, case managers could suggest a dementia screening test. Case managers can help families and other providers see the patient’s dementia as a factor in their health management.
“Just because a person has a diagnosis of mild-to-moderate dementia doesn’t mean they can’t engage in advance care planning and making decisions for themselves,” Miles says. “But, if you don’t see it, you can’t plan for it.”
People with mild-to-moderate dementia should not be infantilized. They can participate in decisions, but some of those decisions should be made soon, through advance care planning, before they progress to advanced dementia.
Case managers will need to discuss potential changes. For instance, they need to consider how to modify the patient’s home environment or anticipate a move to a long-term care setting.
“Maybe the time to move is before they no longer can navigate those stairs,” Miles says. “Ask yourself, ‘What is happening that will change the way that person is able to care for themselves and others in their household?’”
While it sounds simple, it is a difficult concept, emotionally, for families and patients. “There’s a whole recognition that you are not going to be the person you thought you were, and a lot of people are not going to accept that,” Miles explains.
Case managers also need intimate knowledge of the individuals, their social history, and their likes and dislikes. A patient with dementia might have worked as a physician before he was ill, and it would help for the people working with him to say, “Hello, Dr. Smith,” Sadarangani says.
The case manager is the ideal person to facilitate the feedback loop between healthcare providers and caregivers, she adds.
Case managers can identify resources available to patients with dementia and partner with informal caregivers involved in their care, including staff at adult day centers. “They can help create meaning for patients with dementia,” Sadarangani says. “A lot of experts in dementia care say we see dementia incorrectly as a death sentence. It needs to be framed as a positive journey that can provide fun and meaning if done correctly.”
The challenge for case managers is to provide meaning and resources that mitigate caregiver strain and leverage the capacity and strength of available community-based organization resources, she says.
The proportion of Americans with Alzheimer’s disease and related dementias is expected to grow from 1.6% of the U.S. population in 2014 to 3.3% of the population in 2060. Case managers might see patients who have not been diagnosed with dementia forget their medications, or not eating, exercising, or sleeping well. Their family caregivers might say the patient is driving them crazy, but cannot explain any recent behavioral changes.
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