As more and more aging adults are diagnosed with dementia-related diseases, like Alzheimer’s, the need for comprehensive hospice care grows. But challenges exist, such as the financial burden on patients and families, hospice regulations and differing timelines and goals for end-of-life care.

How can we effectively support dementia patients when Medicare hospice coverage is designed to provide short-term care? How can we help ease the financial and time commitment issues, as well as emotional and mental load on families? 

Examining Financial Impacts of Dementia & Hospice

With 6.7 Americans currently diagnosed with dementia (with a projection of doubling by 2050) , it’s critical to address current and future healthcare needs of these patients. The University of Michigan Health and Retirement study offered a long-term, in-depth look that included interviews and health exams. 

For dementia patients, the financial and time commitment repercussions were clear:

  • More time requirements than other diseases two years after symptoms began, requiring triple the amount of caregiving
  • Five times more likely to enter a nursing home within two years of diagnosis
  • More likely to pay out of pocket for in-home care
  • More than twice as likely to enroll in Medicare within eight years of diagnosis
  • Unpaid care provided by their families for 45 hours per month, compared to 13 hours for those without dementia, after two years

“People diagnosed with dementia saw their out-of-pocket spending for health care more than double, and their net worth decline by more than 60%, within the first eight years of being diagnosed,” according to the University of Michigan School of Health study.

Some of the causes for declining resources include privately paid in-home care or nursing home costs not covered by Medicare, the longer duration of dementia over other hospice-qualified diseases (meaning more years of annual out-of-pocket costs like co-pays and deductibles) and a higher rate of nursing home admittance over those without dementia. 

Family Impact of Dementia

As the study above shows, the impact on families is obvious. The stress of watching a loved one slowly change in front of you is compounded by the time commitment of caregiving and the longer duration of the disease. This can also impact a family caregiver’s ability to work, leading to loss of income.

Current & Future Solutions for Hospice Challenges

Medicare hospice coverage typically covers a six-month period at a patient’s end of life, but can be extended as a patient requalifies. However, dementia can take years, even decades, to progress. The challenges, then, include: 1) Regulatory requirements for hospice coverage and the need for longer care of dementia patients. 2) Compassionate care for patients and families over the duration of the disease. 3) Determining end-of-life goals and quality of life metrics for dementia.

Authors of the University of Michigan study say it provides needed data to help inform policy decisions at the state and national levels, as well as family planning related to dementia care and hospice. According to Hospice News, dementia patients, for example, could qualify for hospice coverage sooner and for longer periods of time if policies allow it.

“There’s a big call to reconfigure the hospice benefit so that it’s really tied into the goals and needs of these patients, rather than a prognostication piece that doesn’t feel accurate for so many conditions,” Dr. Neha Kramer, palliative neurologist, told Hospice News.

Heart to Heart Hospice is also working to increase its number of Dementia Certified Practitioners to provide informed, comprehensive care for Alzheimer’s and dementia patients. Under our care, Heart to Heart Hospice helps ease financial and family burdens by:

  • Providing comfort care via medication, medication management, medical equipment and supplies
  • Preventing unnecessary hospitalizations
  • Offering hours of training for caregivers and on-call support
  • Visits from dementia-informed nurses, aides, spiritual care coordinators and more
  • Short-term respite
  • Comfort and dignity throughout the process
  • Grief and loss support

“Families can rest assured that we will treat their loved ones with dignity and compassion,” said Shari Christian, VP of Clinical Services of Heart to Heart Hospice. “Dementia is difficult, but we come alongside them to hold their hand and provide knowledge that empowers them to persevere.”