More than six million Americans are living with Alzheimer’s, and one in three seniors dies with the disease or another form of dementia. As the population of people 65 and older continues to rise, so will the proportion of Americans who are diagnosed with these diseases. Hospice care is a specialized form of treatment that is appropriate for individuals who are in their last months of life. The goal of hospice is to bring comfort and peace to patients and their loved ones while tending to physical, emotional and spiritual needs.
For several decades, cancer was the primary diagnosis of most U.S. hospice patients. However, utilization among patients with other diagnoses such as Alzheimer’s has seen a sharp increase. In fact, hospice patients with a primary diagnosis of Alzheimer’s, dementia or Parkinson’s represented more than four times the number of hospice patients who had cancer in 2019.
Hospice provides symptom and pain management. Individuals facing advanced Alzheimer’s disease are rarely able to express their needs, which can cause frustration, agitation and discomfort. Hospice professionals support patients and help family caregivers spot and address signs of pain or other needs that often go unnoticed to increase a person’s comfort and quality of life. Care prioritizes emotional and physical needs. National data shows people living with dementia and enrolled in hospice reported higher quality care and satisfaction during their last months of life. In fact, 67 percent of people living with dementia who enrolled in hospice reported having their anxiety or sadness managed compared to 46 percent of individuals who were not enrolled.
Support is available for families and caregivers. The benefits of hospice extend to families and loved ones who experience the dementia journey as caregivers. From social workers who help with navigating the medical system to chaplains who can offer spiritual comfort, there is a robust support system within hospice that helps with caregiving tasks and relieves some of the emotional toll. How does one know when it’s time for hospice?
Dementia progression varies greatly among individuals, making it difficult to predict the length and trajectory of the disease. Life expectancy can range from five to eight years for patients with different types of dementia to eight to 10 years for the average patient with Alzheimer’s disease. For patients to meet the eligibility for hospice, they must have an expected life span of six months or less if the disease runs its normal course and their condition must have progressed to a point where hospice care is beneficial and appropriate for symptom management.
Signs that it may be time for hospice for the dementia or Alzheimer’s patient include:
- Worsening cognitive health: Patients exhibit worsening mental symptoms such as decreasing alertness, withdrawal, increased sleeping or mental confusion.
- Declining physical health: Despite medical treatments, patients experience physical symptoms such as decreased appetite, significant weight loss and body changes.
- Complete dependence on others: Patients can no longer perform activities of daily living like eating, bathing or grooming without help.
- Communication challenges: Individuals in the final stages of dementia may be unable to speak or may only say a few phrases. They struggle with making their thoughts clear to others.
People living with Alzheimer’s and other dementias can have long journeys ahead of them so it’s important to take time in the early stages to plan for the future. Many individuals with early symptoms hesitate to consider treatment or future care because of stigma. It can prevent them from acknowledging their symptoms and seeking care that could help them enjoy a higher quality of life. Patients and their loved ones should initiate these important conversations and consult with doctors to understand their options, make care wishes known and create a plan that meets their goals of care.