Alzheimer’s disease is the most common neurodegenerative disease today. It affects approximately 50% of those over the age of 75. It has edged out diabetes and is now the 5th leading cause of death in the U.S. among Americans 65 years of age and older. Although there are several medications currently approved by the FDA to treat Alzheimer’s, none can reverse the damaged nerve cells. At best, they only delay disease progression. From the onset of Alzheimer’s, the average life expectancy without treatment is 8 to 12 years. With treatment, those afflicted can live up to 20 or more years.
Early stage dementia of the Alzheimer’s type may only be recognized by close family or friends. A person has mild changes in short term memory. Planning and organizing are impaired, affecting ability to manage money or medications. It is in this stage that future planning needs to be discussed. It is inevitable that the disease will progress, and as it does, one’s judgment and insight fail. Since paranoia can later set in, this is the time to get legal, financial and future care plans in place. Such discussion in later stages may be seen by the affected family member as an attempt to steal from them. Such discussion in this stage will also help alleviate doubts and guilt feelings on the part of the caretaker when these difficult decisions need to be later addressed. Think of it as an extension of a living will. All family members at this stage might benefit from counseling for an appropriate situational depression.
The middle stages of Alzheimer’s are usually slowly progressive and last for many years. In this stage, it becomes difficult to perform routine tasks and express thoughts. One becomes more easily confused and agitated. There is greater burden on the caretaker for both physical and emotional support. It is therefore important that caregivers think of taking care of themselves in this stage, so that they can remain healthy.
The late stage of Alzheimer’s disease is unpredictable and can last from several weeks to a year or more. Comorbid illness such as stroke, hip fracture or pneumonia usually predispose to a quicker demise. There is increased difficulty with appetite and swallowing, impaired ambulation and inability to communicate. Full time personal care is necessary. The person is usually beyond self-awareness so depression is uncommon. But, delusions, agitated behaviors and hallucinations may increase. Apathy and immobility, along with incontinence, can lead to bedsores and pneumonia. The immensity of all of the needs of someone in this stage is more than a full time job for a single person. This would be the time to consider Hospice.
Hospice care, once thought of just for victims of cancer, is more and more viewed as an end of life option for those with late stage Alzheimer’s disease. According to the AMA, “Alzheimer’s disease and other progressive dementias are life altering and eventually fatal conditions for which curative therapy is not available.”
Thinking of dementia as a terminal illness from which people are dying over years instead of months allows one to focus explicitly and aggressively on a palliative care plan. Hospices offer excellent multidisciplinary care for the Alzheimer’s patient, as well as supportive services for their loved ones.
Medicare and insurance companies have therefore come to acknowledge the value and validity of hospice care in the setting of Alzheimer’s disease. Necessary criteria include lack of independence in activities of daily living, i.e. bathing, dressing or ambulating. Intermittent or constant bowel or bladder incontinence are reviewed, as is a lack of meaningful speech. Other physical factors considered are pneumonia, recurrent urinary tract infection or other septicemia, pressure ulcers and weight loss. So when the caretaker burden becomes overwhelming in the later stages of Alzheimer’s disease there should be no feelings of guilt or neglect. Although the circumstances are tragic, the medical community has finally recognized this as an end of life situation. A situation that may be best served through the compassionate care of hospice. And, hospice care can be offered in the person’s home, in the nursing home setting or at an inpatient hospice facility.
For a better understanding of what the Medicare requirements are for an Alzheimer’s patient to receive hospice care read Halcyon Hospice’s post Alzheimer’s Disease & Hospice: How to tell when a Loved One May be eligible for Care. Or, you can call Halcyon Hospice directly at 855-328-1700.