Living with Dementia: How Hospice Care Can Help

Dementia refers to a decline in the mental abilities of a person. There are many types of dementia. Alzheimer’s is the most common form and accounts for approximately 75% of all dementias.1 Alzheimer’s is a degenerative disease that is ultimately fatal. Currently, an estimated 5.3 million Americans of all ages have Alzheimer’s disease. This figure includes 5.1 million people aged 65 and older and 200,000 individuals under the age of 65.

Dementia varies greatly from person to person. The course of dementia and its rate of progression depend on many factors including the type of dementia and the overall health of the person. While the loss of capabilities does not occur in the same pattern in all individuals, there is a consistent grouping of symptoms and behaviors that signal the final stages of dementia.

Intellectual

• Progressive decline in the ability to remember.
• Profound confusion and disorientation.
• Impaired ability to communicate.
• Behavioral changes.

Functional

• Loss of independent mobility.
• Loss of ability for self-care.

Nutritional

• Progressive loss of appetite.
• Loss of ability to eat independently.
• Weakened capacity to swallow, increasing the risk of choking or aspiration (taking fluid and food into the lungs) and resulting pneumonia.

Complications

• Frequent infections, such as pneumonia, urinary tract infections.
• Bowel and bladder incontinence.
• Skin breakdown related to immobility and incontinence.

Hospice care is designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible. Aggressive methods of pain control may be used. Hospice programs generally are home-based, but they sometimes provide services away from home — in freestanding facilities, in nursing homes, or within hospitals. The philosophy of hospice is to provide support for the patient's emotional, social, and spiritual needs as well as medical symptoms as part of treating the whole person.

When the end is near, home caregivers have to deal with not giving care to the patient, they deal with what is referred to as anticipatory grief—the reality that death is inevitable. Previously, the end seemed to be far in the future, but changes in the last few months have made the end of the journey closer. Hospice care can help the caregiver deal with grief at this period.

Even when the patient is in a nursing home, when the end-of-life is at hand, improving the patient’s quality of remaining life may require hospice care. Most hospices establish contacts with their local nursing homes to facilitate accessibility. However, if a family wishes to place a dementia patient in a nursing home that does not have a contract with a particular hospice, that hospice can initiate one. Further, the nursing home can also contact a hospice on the family’s behalf. When the patient receives hospice services, the facility gains an entire team of professionals who help with the care and management of the unique symptoms of the dementia patient. The hospice nurse recognizes the need for facility staff training, care coordination and open communication to address the needs of the patient. It’s a win-win-win proposition for facility, patient and family.

Physicians make the determination when a patient is ready for hospice care. This decision is not made from a single laboratory test. They take into consideration the patient’s history of symptoms above and their progression on the FAST2 (Functional Assessment Staging) scale. The FAST1 scale was developed by Dr. Barry Reisberg & Associates, from New York University Medical Center's Aging and Dementia Research Center to aid in determining the progression of dementia.
The FAST scale lists seven levels of function that help clinicians determine what "stage" the patient is. Here's an example of how it measures stages of disease progression:

• Levels 1 - 5: Patient experiences increasing forgetfulness, inability to perform complex tasks, and needs assistance with dressing.
• Level 6: Patient needs help with bathing and toileting, and is unable to control bladder or bowels.
• Level 7: Patient experiences inability to form intelligent speech, inability to ambulate without assistance, and requires total care.

In some cases after some time with hospice care, some of the symptoms go away and the patient may live longer than the 6 months required for hospice care. At this time physician may have to reassess his prognosis of how long the patient has to live and need for hospice care may cease.

Hospice care can help the patient and caregiver’s deal with the day-to-day challenges that they face during the final months of the patient. Hospice programs generally use a multidisciplinary team approach, including the services of a nurse, doctor, social worker and clergy in providing care. Additional services provided include drugs to control pain and manage other symptoms; physical, occupational, and speech therapy; medical supplies and equipment; medical social services; dietary and other counseling; continuous home care at times of crisis; and bereavement services. Although hospice care does not aim for cure of the terminal illness, it does treat potentially curable conditions such as pneumonia and bladder infections, with brief hospital stays if necessary.

Hospice programs also offer respite care workers, people who are usually trained volunteers, who take over the patient's care so that the family or other primary caregivers can leave the house for a few hours. Volunteer care is part of hospice philosophy. In most cases, when care is provided by a nonprofit hospice, there is no charge while for-profit hospice may charge a nominal fee for such items as medications.

Hospice specialists can manage the specific problems of end-stage dementia and help ensure that these patients have an improvement in their quality of life while being treated with dignity and respect.

References

1. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures: 2009. Accessed November 14, 2009.
2. Reisberg, B., "Functional Assessment Staging (FAST)." Psychopharmacology Bulletin, 1988, 24: 653 - 659.

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