As dementia-related illnesses continue to rise among hospice patients, caregivers and providers alike are working judiciously to best find ways to support patients and their families in navigating these new diagnoses.
In July 2023, the U.S. Centers for Medicare & Medicaid Services (CMS) unveiled a newly planned demonstration for those working with dementia patients and their families. The plan, called the Guiding an Improved Dementia Experience (GUIDE), is an eight-year payment model, which aims to focus on thorough and coordinated care for those dealing with dementia, with specific goals including a streamlined service care plan, 24/7 support and respite care for family caregivers.
As of 2023, according to the CMS website, dementia affects more than 6.7 million Americans; researchers estimate there will be up to 14 million dementia cases by 2060.
For providers like Dr. Bethany Snider of Pallitus Health Partners and Hosparus Health, the GUIDE model addresses something that was missing in dementia care both in the health care continuum and across the country: high quality, interdisciplinary palliative care provided at home.
“We have been doing community-based palliative care here since around 2017, so that’s where our desire to fill a gap in the health care system really started,” Snider said, who has worked as the organization’s chief medical officer for the last six years.
Through their innovative programs in that time, Pallitus and Hosparus have found that dementia patients often require support in their homes for years prior to their death. As Snider says, that causes a struggle for family members acting as caregivers to provide support and understand the changes, as the patient’s disease progresses.
With GUIDE, the organizations were able to advance the community needs they began addressing seven years ago and go further in depth with their support for dementia patients and their families.
“The GUIDE Model can provide patients with the services they need, including psychosocial support, spiritual support, symptom management and care coordination,” Snider told Palliative Care News. “And it comes with payment to allow organizations like ours to continue to expand our dementia care programs.”
Dr. Becca Gatian, who has been with Avow Care Services over the last 12 years and its chief operating officer since 2023, agrees. Her organization — which has operated in Collier County, Florida, for more than 41 years — serves 500 hospice patients and 400 palliative care patients.
During the last few years, they have seen higher rates of dementia across age groups, beginning with patients in their late 40s. While Avow aims to assist patients dealing with pain, shortness of breath, nausea from chemotherapy and other symptoms associated with dementia or other diseases, the GUIDE model allows the organization to support the caregivers.
“A lot of times with dementia patients, the biggest issue is the family needing support, understanding, education and training, and with the GUIDE model, Medicare would be reimbursing organizations [like ours] to provide those supports for families,” she said.
Avow is already a part of a few organizations collaborating to promote their work and advocate for better reimbursement practices. However, reimbursement typically amounts to 25% of what the expenses are per patient. By joining the GUIDE program, Avow can increase their reimbursement streams from Medicare and Medicaid,while also advancing their ability to take on all patients in the community who have dementia and support them.
Michaela Vandersee, executive director of Cedar Valley Hospice in Waterloo, Iowa, shared that 33% of the individuals her organization serves have dementia as either their primary or coexisting diagnosis. With the implementation of GUIDE into their practice, Vandersee believes they will be able to assist even more families in the community who may already be struggling.
“Everything we do as an organization is guided by our mission, to ‘enrich lives with knowledge, respect, and compassionate care,’” Vandersee said. “Being selected as a participant in this program — set to start on July 1, 2025 — will allow us to continue to fulfill our mission.”
With nearly three decades of health care experience, Gatian said she is excited about what the addition of the GUIDE program will mean for the future of dementia patients and their families. She estimates that there are potentially 3,000 patients throughout Collier County with dementia diagnoses that could be eligible to participate in the GUIDE program.
“It’s really about understanding and learning all of the different types of dementia and that the dementia population is growing,” Gatian said. “As part of our mission, to create peace of mind through compassionate care and support, our decision to join the GUIDE model aligns with our mission and we felt that it was a really good fit for what we do.”