Hospice is a philosophy of care that provides comfort as life nears its end (usually within six months or less), rather than using aggressive lifesaving measures that are unlikely to offer any promising outcomes. Hospice does not provide 24-hour, direct caregiving services. Rather, hospice care augments what is currently being provided in a person’s home or residential facility (including long-term care facilities, a common site of death for someone with dementia). Medicare, Medicaid and most private health insurances pay for hospice. Some hospice agencies provide needed care regardless of one’s ability to pay.

As experts in end-of-life care, hospice teams offer knowledge and support to long-term care staff as they collaborate to serve the best interests of the resident and family. Hospice teams can complement a busy facility’s staff by offering one-on-one time with the patient and their family.

Challenges in FTD

Even though criteria exist for hospice, it is still often difficult to accurately predict the last six months of life for a person with any type of dementia. Additionally, the criteria for hospice eligibility do not fit the person with FTD because they are based on the progression of Alzheimer’s disease (AD), which does not match the progression of FTD. For example, memory impairment is generally less severe in FTD. Additionally, people with FTD are generally younger and more physically robust and have fewer chronic illnesses.

In 2011, FTD experts identified red flags that may indicate that an FTD patient is in the last six months of life. These red flags, which can be important catalysts for discussing hospice enrollment, include:

• The need for assistance with all activities of daily living (eating, dressing, personal care, etc.).
• Difficulties with swallowing and chewing—including food pooling in one’s mouth, which can trigger coughing and choking episodes and increased risks for aspiration pneumonia.
• Severe language impairment.
• Immobility that poses increased risks of tissue breakdown and blood clots.
• Incontinence of bowel and bladder, which may lead to infections and sepsis.
• Frequent falls that may lead to fractures and other serious injuries.
• Significant weight loss and wasting.
• Signs of motor neuron disease causing more rapid decline.

Outcomes and Benefits

Switching the focus from routine health care to comfort care requires a detailed risk/benefit analysis of every health care decision, including those regarding medications, current treatments, screenings, CPR, hospitalizations and feeding tubes. It frequently involves simplifying routine medications, ending routine screenings, diet liberalization, frequent assessments for discomfort and administering effective analgesia, along with other non-pharmacological and sensory measures to keep the person comfortable at all times.

Research studies on hospice* are based primarily on people in the end-stages of more common forms of dementia, such as Alzheimer’s disease. These studies indicate that the benefits of hospice for people with dementia and their families include:

• Interdisciplinary support for patients and families.
• Lower rates of restraints, feeding tubes and hospitalizations.
• More effective symptom management.
• Respite care.
• Dying in their place of choice.
• Lower health care costs.
• Families’ perception of higher quality of care leading up to death.

Anecdotal reports from FTD caregivers show that replacing aggressive end-of-life medical intervention with comfort care can give them a long-awaited—albeit limited—sense of agency over the disease. After being at FTD’s mercy for so long, many family caregivers say that choosing comfort care can provide a sense of control and resolution in the disease’s end stage.

A sense of closure can be similarly provided via the loved one’s death certificate. FTD deaths are seldom officially characterized as such (“pneumonia” or “failure to thrive” are more commonly listed). Hospice and facility care staff can help families advocate for FTD’s inclusion on the death certificate, in order to improve government data tracking in advanced dementia.

*Fulton et al., 2011; Goldfeld et al., 2011; Jones, 2013; Kiely et al, 2010; Miller et al, 2012; Mitchell et al., 2009; Shega & Tozer, 2009; Teno et al., 2011