Significant progress has been made in recent years in dementia research, both in isolating the cause of disease and identifying appropriate treatments. Yet there’s no denying that caring for these patients remains a challenge. Specialized clinics like the UVA Memory and Aging Care Clinic (MACC) ease the burden by not only creating a roadmap for successfully managing these conditions, but also providing patients and caregivers hands-on support at every turn.
The MACC has a multidisciplinary team of highly specialized providers offering individualized care for people living with dementia and other cognitive disorders. As an academic medical center, UVA is well equipped to provide:
Early, accurate diagnosis
“The sooner we can pinpoint the problem, the better our chances of finding a way to manage the disease effectively,” says Carol Manning, PhD, director of the MACC. “Our team is happy to provide second opinions or deal with diagnostic conundrums. We offer neuropsychological testing and the state-of-the-art diagnostics needed to get an accurate diagnosis and establish the current stage of decline.”
Access to novel treatments
Sometimes the most promising treatment option for patients is a therapy still under investigation. “Through clinical trials, we can get patients access to novel drug therapies and behavioral treatments that may not be widely available elsewhere,” says Manning.
Setting the standard for dementia care from the start, the MACC expanded its capabilities further in 2016 with the launch of the grant-funded Dementia Care Coordination Program, a collaboration with the Jefferson Area Board for Aging and the Virginia Department for Aging and Rehabilitative Services. The program was quickly recognized as a model program for the state, receiving a “best practices” award from the Commonwealth Council on Aging and an Aging Innovations Award by the National Association of Area Agencies on Aging.
What makes this program unique is its focus on improving the lives of patients and their caregivers after receiving a diagnosis of dementia by offering resources and support to manage care successfully at home. “One of our goals is to enable people living with dementia to continue thriving in their communities and to decrease unnecessary hospitalizations,” says Elizabeth Boyd, one of the program’s two full-time clinical care coordinators. To do so, Boyd and fellow care coordinator Samantha Fields collaborate with the MACC team to provide the following services to eligible patients across Virginia:
Soon after joining the program, patients meet with their assigned care coordinator in their own home. “This is a more comfortable environment for patients and families, so it allows us to build rapport and establish goals that are authentic and personalized based on their needs,” says Fields. Care coordinators can also get a better idea of a patient’s living situation, identify any potential hazards and make recommendations that will make life easier for patients and families, adds Manning.
Advocacy and open communication
Care coordinators are a direct link to the Memory and Aging Care Clinic. Because they communicate regularly with the patient and family, care coordinators can advocate on a patient’s behalf in real time, sharing information with the broader MACC care team and making recommendations based on their knowledge of the patient’s current status. And if a situation arises in which a caregiver believes emergent care is needed, care coordinators are readily available to discuss the patient’s condition, suggest at-home care strategies and help determine if a trip to the ER is warranted. “A call with our team may prevent unnecessary hospitalizations or, at the same time, may ensure patients get emergency care when needed,” says Manning.
When providing care to people living with dementia, we now know that we can no longer just treat the patient. “Dementia impacts the caregiver and the entire family,” says Manning. Providing caregivers and others impacted by the disease the support they need helps prevent burnout and ensure that the patient can be cared for at home for as long as possible. Just knowing someone is there when and if they are needed is often enough to provide a patient and caregiver confidence to overcome the everyday challenges of dementia. “We provide reassurance, education and validation — which is just as crucial as the other concrete tasks we perform,” says Boyd.
When managing a chronic, progressive condition like dementia, the person’s needs change over time and new challenges arise frequently. Care coordinators are well versed on the resources available within the community and beyond to help patients and caregivers overcome these challenges. Whether it’s navigating the health system, identifying available community resources or simply acting as a sounding board, care coordinators are a reliable point of contact and can help patients and caregivers locate tools they need, says Fields.
Now Recruiting Patients
The initial 3-year grant for the Dementia Care Coordination Program will end this month. However, UVA received a new grant and is actively recruiting select patients for this new grant-funded effort, which will run from October 2018 through September 2020. If you have a patient who has been diagnosed with dementia with Lewy bodies, frontotemporal dementia, mixed Alzheimer’s or Parkinson’s disease with dementia, especially a patient with one of these conditions who lives alone, contact us to find out if he or she may be eligible for the program.
“It can be difficult to identify dementia patients living alone,” says Manning. “This effort will allow us to provide them the care they need to maintain their independence longer.”
To learn more about the Dementia Care Coordination Program, call Jordan McCoy at 434.924.0453 or email her at [email protected]. To refer a patient to the UVA Memory and Aging Care Clinic, call 800.552.3723.