Although research has highlighted the numerous medical and emotional benefits that hospice can provide patients afflicted with dementia/alzheimer’s, hospice care remains underutilized by this patient demographic.
Hospice Care and Dementia/Alzheimer’s Patients
Hospice impacts dementia/alzheimer’s patients positively. This is demonstrated in several different aspects of the care they receive. Studies have shown that patients afflicted with dementia/alzheimer’s who pass under hospice care are likely to have better pain and symptom management then in an urgent care facility or hospital. Additionally, the families of patients who pass while under the care of a hospice provider have been shown to have a higher level of satisfaction for their loved one’s end-of-life care.
Assessing Dementia/Alzheimer’s Patients for Hospice Care
In the United States, hospice care is generally underutilized by patients who are dying from advanced dementia/alzheimer’s. Many experts in the field believe this is largely due to the difficulty in determining patient eligibility for hospice care. Hospice care is reserved for patients who are afflicted with a life-limiting illness and have been given a diagnosis of six months or less left to live. The most common tool used for assessing patients with progressing dementing illnesses is the Reisberg Functional Assessment Staging (FAST) scale. This scale evaluates several areas of the patient’s physical and mental state. Using this assessment, most patients are deemed eligible for hospice care if they are shown to have bladder incontinence/bowel control and a severely limited ability to communicate in addition to other factors. These patients must be dependent on the assistance of others for all aspects of daily living. Additionally, patients must also have a medical complication that is affecting them alongside their physical and cognitive decline.
The Unique Needs of the Dementia/Alzheimer Patient
Many experts in the field believe that these arguably rigid guidelines prevent and impede the utilization of hospice care for patients with advanced dementia/alzheimer’s. End-of-life care for patients who are afflicted with these diseases needs to be recognized as unique. Much like any other terminal illness, the illness will dictate the requirements of patient care. A patient who is suffering from terminal cancer but has no cognitive decline will need to have a different care regimen than a patient who is dying from advanced dementia/alzheimer’s.
Psychological Needs of Family Members
Hospice is unlike many other forms of medical care in the U.S. because it also helps address the psychological and emotional needs of family members. Hospice provides emotional support to families and caretakers in order to help them adjust to caring for a loved one who has entered end-of-life. End-of-life care for patients who are afflicted with dementia/alzheimer’s poses some unique challenges because of the continuing cognitive deterioration of the patient. Caretakers need to be comfortable caring for their loved one as they continue to decline both physically and mentally. In this confusing time, the guidance provided by the hospice interdisciplinary team can make this period less chaotic and help to mitigate emotional and mental burdens experienced by patient family members to some degree.
Support From Familial Caregivers
As a patient continues to progress in their journey through hospice care, the supportive role of family members often needs to be expanded. A lack of understanding of dementia/alzheimer’s can lead to the incubation of distress within familial caregivers. Hospice workers can lessen the mental and emotional burdens of caregiving by providing clear guidance to families. For many family members, it can be difficult to separate their loved one from the disease. However, if family members are able to clearly understand how dementia/alzheimer’s disease is progressing within their loved one, then they will be better able to cope.
Understanding Comfort Care
The necessity of providing patient-centric comfort care is a central tenet of hospice. The focus of comfort care is to relieve suffering, in all forms. Patient-centric comfort care may include increasing physical comfort, addressing spiritual and emotional needs, and assisting with any tasks of daily living. Patients suffering from advanced dementia/alzheimer’s are unable to communicate their needs, which can make providing effective comfort care especially challenging. The inability to decipher a patient’s needs can cause emotional turmoil within caretakers who feel helpless as they watch their loved one suffer. In the absence of explicit verbal communication, hospice care workers must decipher a patient’s other cues in order to determine what steps need to be taken to address physical pain and discomfort. Sharing this knowledge with familial caretakers will empower caretakers to take on a more active role in the patient’s care.
Emotional Needs of Dementia/Alzheimer’s Patients
Although dementia/alzheimer’s patients may be cognitively lost to the progression of the disease, they will still have emotional needs. Family members can look to hospice to provide this type of emotional nurturing. Hospice care ensures a peaceful surrounding and dignified passing for patients who are afflicted with advanced dementia/alzheimer’s.
Enlisting Hospice For Support
Family members and caretakers need to make informed decisions regarding the care of their loved one. This means that the must recognize dementia/alzheimer’s for what it is – a terminal illness. If families understand the unique difficulties of end-of-life care for dementia/alzheimer’s patients, then they will feel better equipped to manage complications when they arise. Caring for a loved one who is suffering from advanced dementia/alzheimer’s is a daunting task. However, hospice care is designed specifically to care for patients and guide their families during end-of-life. If you are managing the care for a loved one who is afflicted with advanced dementia/alzheimer’s, contact Harbor Light Hospice to learn how we can support you and your loved one.