The number of dementia patients is expected to rise by 40%, or 139 million people globally, by 2050, according to new data from the World Health Organization (WHO). Hospices have been caring for dementia patients in larger numbers in recent years and will have a significant role to play as rates of cognitive decline continue to rise.
About 15.6% of hospice recipients during 2018 had some form of dementia as a primary diagnosis, according to the National Hospice & Palliative Care Organization (NHPCO). This amounts to more than 177,000 people nationwide.
Rising dementia rates will take a massive human toll and could drive up global health care expenditures.
“Dementia has significant social and economic implications in terms of direct medical and social care costs, and the costs of informal care,” WHO reported. “In 2019, the estimated total global societal cost of dementia was U.S $1.3 trillion, and these costs are expected to surpass US $2.8 trillion by 2030 as both the number of people living with dementia and care costs increase.”
While the WHO report did not give country-specific projections, a 2013 study estimated that the number of people in the United States with Alzheimer’s disease would triple between 2010 and 2050, reaching 13.8 million.
These trends will impact quality of life for families as well as the patients themselves, disproportionately affecting women. Women represent about 65% of total deaths associated with dementia and provide the majority of caregiving for loved ones with that condition, according to WHO. Women perform about 70% of family caregiving hours around the world, an estimated five hours per day in most cases.
Some hospice providers have recognized the growth of dementia diagnoses among their patients and have developed disease specific programs oriented towards those individuals.
ABC Hospice in Alabama last year launched its Memorable Journey program, which is tailored to the unique needs of dementia patients. Any patient with dementia is able to receive those services, regardless of whether that condition is their primary terminal diagnosis. ABC is a portfolio company of Alleo Health System.
Wisconsin-based Agrace Hospice in Jan. 2020 opened a dedicated inpatient facility for dementia patients. On the caregiver side, Hope Hospice in California recently started a respite care program designed to assist families of individuals experiencing cognitive impairment.
A dementia diagnosis often means a longer length of stay for a hospice patient due to the illness’ unpredictable trajectory. Many of these patients need recertification, multiple times in some instances. Longer stays have correlated with higher margins for hospice providers, according to the Medicare Payment Advisory Commission. However, long stays can also attracted the attention of regulators.
The U.S. Centers for Medicare & Medicaid Services (CMS) sees high proportions of patients exceeding the six-month hospice benefit as a red flag that can trigger a costly audit. Hospices will have to be careful to submit complete and accurate documentation with detailed explanations of the patients’ needs and with all required signatures.
The rising rates of diagnoses that lead to longer stays could prompt discussion of possible reforms to the Medicare Hospice Benefit and associated rules. The benefit was designed in the early 1980s based primarily on the needs of cancer patients, who have a much more consistent disease trajectory.
Some providers, as well as the NHPCO, have already begun questioning the necessity of the six-month terminal prognosis requirement. Whether or not CMS or other stakeholders would be amenable to such discussions remains to be seen.
“Hospices will need to develop more accurate predictors to meet the expected 6 months or less prognosis. I do not think that Medicare will extend the hospice period,” Raul C. Perez, chief of patient care services at California’s Hope Hospice, told Hospice News. “Something does need to change, however the challenge continues to be the same, regarding who will bear the cost of expanding the benefit.”