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With GUIDE Deadline Near, Hospice Providers See New Possibilities for Dementia Care

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Without family caregivers, most hospice and palliative care patients would be unable to receive care in the home. Now, some emerging payment models are including caregiver support as a key component.

Case in point is the Guiding an Improved Dementia Experience (GUIDE) model, which the U.S. Centers for Medicare & Medicaid Services (CMS) unveiled in July 2023. Providers interested in participating in the GUIDE model have until Jan. 30 to submit applications.

The eight-year payment demonstration is designed to improve the quality of life for dementia patients and their caregivers by addressing behavioral health and functional needs, as well as better coordinating care and improving care transitions between community, hospital and post-acute settings.

The model comes at a time when dementia-related illnesses are on the rise among hospice patients. In 2021, these conditions tied with cancer as the most frequently occurring principal diagnoses for Medicare decedents who elected the benefit, according to the National Hospice and Palliative Care Organization.

While the health care system at large is not equipped to meet the demand for caregiver support, the GUIDE model features components that could drive improvement, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company.

Where GUIDE fits in

The model will provides up to $2,500 in annual reimbursement for caregiver respite services, designed to help dementia patients live out their days at home to the fullest extent possible, according to CMS.

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Hospices have increasingly recognized a growing need to ramp up support aimed at improving access to services such as respite care. But financial obstacles exist when it comes to expanding and diversifying the breadth of caregiving resources in serious illness and end-of-life care.

A significant challenge to overcome is that most providers do not have the infrastructure for caregiver support built into their service offerings that CMS requires, Lee said.

“For a lot of hospice providers, caregiver services are not their bread and butter,” Lee said. “CMS putting dollars into this is a great first step. What they’re saying to Medicare Part B providers is that if they do X, Y, Z to support patients and caregivers, then they’ll provide anywhere from $65 to $390 per beneficiary per month, depending on the complexity of the dementia, to support these dementia patients. For hospice providers, it’s first knowing whether you can apply, then whether you have the staffing and care management resources and access to respites services.”

The GUIDE model could create more comprehensive support around the care management for dementia patients, according to Dr. Cameron Berg, executive vice president of clinical strategy of Pearl Health, a New York based, value-based primary care company.

“GUIDE will be comprehensive, inclusive of the diagnostic, therapeutic and support services needed for the efficient and humanistic management of dementia,” Berg told Hospice News in an email. “Because caretakers assume a disproportionate burden in dementia care, we have seen quite a lot of fragmentation in the care delivery of end-of-life services for patients with dementia. A comprehensive and prospective process of enablement will be far more efficient than the current piecemeal landscape that tends to see dementia as one of many challenging chronic illnesses. It’s quite different.”

Biggest areas of need

Caregivers often struggle with care navigation such as facilitating health care communication, providing transportation for medical appointments and addressing medication, physical and mental health needs, among others.

When it comes to patients with dementia, these challenges can be compounded by the long-term and unpredictable disease trajectories, said Sonya Dolan, director of operations at Mettle Health.

“For caregivers of people with dementia, they are in for one of the longest journeys that is so hard and so different from others. It’s a whole different animal,” Dolan told Hospice News. “It’s spending a lot of time and money, and this care requires constant vigilance of heightened levels of anxiety caring for an unpredictable array of patient needs. If there was money to provide more additional care for the caregivers, that could help fill a lot of areas that are lacking for these people.”

If hospices had greater financial resources towards caregiving services, they could build out interdisciplinary staff to better address some of the largest needs among caregivers, including mental health support, Dolan said.

Caregivers of patients with longer prognoses face difficult emotional challenges, including feelings of guilt, frustration and grief, she stated. What they often express is the need for a safe place to voice their feelings and concerns and receive feedback on how to navigate their own challenges alongside patient care needs, Dolan said.

“The main thing is having staff who can set aside time to just spend with the caregiver to address what they’re going through and experiencing,” Dolan said. “It’s having someone to witness and help address the scariest moments of caregiving. Those are things that hospice is really set up to address, but what can be lacking in trying to spread teams out for that emotional care. Caregiver issues really run the gamut. If there’s some kind of stronger reimbursement for them, then that’s a huge piece of patient care for [providers] to wrap their arms around.”

Stronger reimbursement support around caregiver services such as respite care, assistance with social determinants of health are key pieces to engaging patients further upstream, with an end result of better quality outcomes, Lee said.

Having more financial resources to support education and training for family caregivers is another key piece, he stated.

“Ultimately, if someone has access to adequate resources and also understands the patient’s disease and needs, then that is going to save a trip to emergency health care visits somewhere down the line,” Lee said. “And that’s going to reduce expensive medical utilization because some basic caregiver needs were met. It’s a win for the providers, a win for saving health care costs and for the patients and families who are getting that support.”

Insufficient payment avenues and a fragmented health care system are some of the challenges at play, Lee stated.

“Alzheimer’s and dementia are some of the most challenging illnesses that you could face right now,” Lee told Hospice News. “We have these patients living longer with more complex needs while realizing there are gaps that exist in caregiving for the last three decades. In terms of caregiving support, not much has changed. The only way we could avert a crisis is to empower family caregivers – that will be critical to adequate care in the home. The piece that is challenging for the provider is compensation. Resources and programs are very unsustainable when you only get so much towards support each year.”

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