How hospice can help people with dementia in their final days

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Many families are unaware that palliative care is an available option for caring for people with dementia at the end of life. Catherine Falls Publicity/Getty Images
  • A new study looked at the medical records of people over 70 with dementia who received palliative care.
  • The study showed that a majority of patients fared better in terms of quality of care and mental health, and were less likely to be transferred to another facility.
  • According to experts interviewed for this article, palliative care is an underused option for people with dementia and can provide support and care for up to six months.

Families of people with dementia are sometimes reluctant to seek palliative care. You may feel like you are abandoning your loved one. But palliative care often provides excellent care and relieves anxiety and sadness compared to patients with dementia who do not receive palliative care, according to a new study published in Health Affairs.

Researchers from the University of California, San Francisco and the Icahn School of Medicine at Mount Sinai, New York, reviewed the medical records of 2,059 people over the age of 70 who died between 2011 and 2017. Among those- latter, 40 percent had been diagnosed with dementia, and 59 percent of those used palliative care.

“The overall goal of palliative care is to provide measures of dignity, support, and comfort to end-of-life patients and their families,” says Gail Trauco, RN, BSN-OCN. It includes regular visits from nursing staff, social workers and clergy and is provided in the patient’s home, in an assisted living or nursing home, in a dedicated area of ​​a hospital or in a free-standing hospice.

Most often, the children or spouses, the patients’ representatives, provided information on the end-of-life care received by their loved ones. The discovery included:

  • 52% described care as excellent, compared to 41% of outpatients
  • 67% said sadness and anxiety were managed, compared to 46% of outpatients
  • Those enrolled in palliative care were less likely to be transferred to another care facility in the days before their death

Krista L Harrison, Ph.D., an assistant professor in the UCSF Division of Geriatrics, was surprised by the results: “Honestly, we expected it not to be positive. Since the palliative care model was designed for cancer patients, we expected end-of-life care to be worse for people with dementia,”

Palliative care services are underutilized, says Dr. Scott Kaiser, director of geriatric cognitive health at the Pacific Neuroscience Institute. “While people may qualify for the last six months of their life, palliative care services are often only started in the last weeks or days.”

Families considering palliative care can begin the process by contacting the patient’s family physician, who can initiate referrals. Families can also contact palliative care organizations directly and start the conversation. According to Trauco, signs that it may be time to consider hospice include:

According to Kaiser, palliative care services can help reduce hospitalizations, control pain and manage other symptoms. “It can fill many common gaps in care, providing a full range of services focused on comfort and support. This includes tailored services to meet the needs of families and other caregivers. Palliative care benefits may also extend to bereavement support for surviving relatives after a patient’s death.

Specialists perform a patient and family assessment before hospice begins to determine patient and family needs. The palliative care provider uses this information to tailor the program to their unique needs.

Medicare pays for palliative care, but “eligibility criteria could mean that some dementia patients face barriers accessing hospice or may be at risk of being de-enrolled,” the researchers found. There must be documentation of continuing decline for patients to remain eligible. A study found that many people are discharged from hospice because they no longer meet the six-month prognosis for death. Although they still suffer from dementia, and it will not resolve, their physical condition has stabilized. This leaves family and caregivers struggling to care for their loved ones.

“To be eligible for Medicare, there are a few minor hurdles to clear before hospice can begin. First, your attending physician and attending physician must certify that you are terminally ill. Second, you must accept palliative care for your condition instead of medical care aimed at curing your condition. Finally, you must sign a document selecting palliative care over other Medicare-covered care for your condition,” says Robert Rees, vice president of Medicare sales for eHealth.

The hospice organization can help you sort out insurance and financial obligations. “All palliative care organizations should have financial support staff,” says Trauco. “Many are free through donations and grants if insurance doesn’t cover them.”

Most people who receive palliative care stop receiving curative medical care for conditions unrelated to their terminal illness. They receive care to ensure their comfort.

Harrison said hospice significantly benefits enrollees with dementia and highlights the need to ensure access to high-quality end-of-life care for this growing population. “Future work should examine whether removing prognostic requirements from palliative care eligibility for people with dementia positively affects timely access and quality of care.”

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