By Elizabeth Lee, RN, BA, CHPN Oxford’s Hospice and Palliative Specialist and Carol Combs, MSW Oxford’s Memory Care Program Coordinator
Hospice is a wonderful and caring option for people who are facing end of life illness. The primary goal of hospice care is to help maintain the highest quality of life in the last stages of an illness.
Hospice serves individuals with any terminal illness, including Alzheimer’s disease. The Hospice Interdisciplinary Care Team includes the physician, nurse, social worker, chaplain, aide and grief services. This team works together with the patient and family to help manage the unique needs of end stage Alzheimer’s disease and other related dementias.
Hospice focuses on comfort, support and managing pain rather than providing treatment. People with Alzheimer’s disease become more disabled over time; and with advanced dementia, individuals can no longer communicate their wants and needs. Focusing on the senses—touch, hearing and sight—can bring comfort when verbal communication cannot.
An Alzheimer’s patient could be eligible for Hospice care if they:
- Are unable to ambulate without assistance
- Are unable to dress or bathe without assistance
- Are unable to swallow
- Are unable to speak or communicate meaningfully
- Have urinary and fecal incontinence
- Have UTI’s (urinary tract infections), decubitus ulcers and/or aspiration pneumonia
The end of life path of hospice patients can be divided into one of three typical patterns:
- A short period of obvious decline at the end (typical for most cancers)
- Long-term disability with periodic intensification and unpredictable timing of death (typical for a patient with chronic organ system failure)
- Steadily declining function with a slowly dwindling course to death (typical for a patient with frailty, dementia or Alzheimer’s)
End of life decisions become more complicated if wishes have not been or cannot be expressed by the dying person. Families then have to speak for the person based on their knowledge of the individual’s values and beliefs.
What is the current quality of life, and how will the on-going treatment potentially impact quality of life?
Patients and families need to understand benefits versus burdens before treatment continues or is introduced. This requires truth telling and explanations in a language the patient and family are able to understand.
Family members caring for a dying loved one with Alzheimer’s often express relief—for the patient and themselves—when death comes. It is important to understand that these feelings are normal.
Hospice can help the patient and caregiver deal with the challenges faced in the patient’s final months, and offer grief support both before and after the loved one dies. Hospice helps ensure the highest quality of life while being treated with dignity and respect.