Annals of Long Term Care

Case 1
A 78-year-old widowed woman who lives in a nursing facility has an acute change in mental status. She is rushed to the local emergency department and found to have gallstone pancreatitis. As her condition begins to deteriorate, she is intubated and admitted to the intensive care unit. Surgery recommends an open cholecystectomy for the patient. When her family arrives to discuss treatment options, they reveal that she has severe dementia and has not been able to recognize anyone in her family for two years. They are not sure if her advanced dementia should impact their care decisions.

Case 2
A 73-year-old married man with moderate dementia presents with his wife for a routine follow up visit. The patient’s wife is the primary caregiver, and she gets little assistance from the rest of the family. She reports that her husband has become increasingly paranoid and is sometimes physically aggressive towards her. She then breaks down in tears and reveals that she feels she cannot care for her husband any longer. She has become depressed and is bitter about having to care for him by herself. She wants help for both her husband and herself but does not know where to turn. When the possibility of placing her husband outside of the home is suggested, she is surprised and confused. She is not aware of the treatment options and does not know what her husband would want.

These cases illustrate the limitations of traditional dementia care. Dementia is often treated using a “curative” model, which is the typical approach to medicine. This model focuses on diagnosing the illness, treating symptoms, and trying to “cure” the underlying cause of the disease. However, dementia is not a disorder that medicine can cure. It is a chronic, progressive illness, much like emphysema or AIDS. Unfortunately, the curative model does not lend itself to chronic, progressive diseases, and its use can limit dementia care.

The Palliative Care Model
Another model of care, the palliative care model, was developed specifically for chronic, progressive illnesses. Palliative care focuses on maintaining quality of life and comfort for patients and for their families. It accomplishes these goals by addressing three, often overlooked, areas. First, there is an emphasis on meeting the patient’s and family’s physical, psychological, spiritual, and practical expectations and needs. Second, palliative care addresses issues of loss, grief, and bereavement. Finally, the palliative approach prepares the patient and the family for the management of self-determined life closure, of the dying process, and of death itself.

In a palliative care model, a multidisciplinary team cares for the patient and family throughout a life-threatening or terminal illness experience. This team can be comprised of physicians, social workers, pharmacists, nurses, nurse educators, nurses’ aides, physical and occupational therapists, case managers, counselors, psychiatrists, trained volunteers, support groups, and clergy. While it is most often used to provide end-of-life care, it is not limited to this time frame. Palliative care can be used to either enhance the “curative” model, or it can be the focus of care. As can be seen in the Figure, curative care is often the primary approach during the initial stages of treatment of a chronic, progressive disease.1 Then, as the disease progresses, palliative measures come more to the forefront.

In recent years there has been an increasing awareness of palliative measures for patients with dementia.2 However, much of the application remains limited to the severe and end-stages of the disease. This need not be the case. Palliative care principles can be applied to the entirety of dementia care. They can be incorporated into treatment, beginning at the initial visit, in order to provide better care for the patient and the family.