Many elderly patients in the United States, and their families, are dealing with the devastating effects of dementia on a person’s life. However, caregivers and doctors often have little information about the prognosis for a given patient with dementia and this may lead to poorer care. A recent article in the October 15th edition of the New England discusses the clinical course of patient’s with advanced dementia, and concludes that over aggressive care for dementia patients, when combined with lack of treatment for distressing symptoms may make life more burdensome for dementia patients in their final months than need be necessary.
Althougn not often thought of as a terminal illness, severe dementia has a high mortality rate. This is often difficult for family members of relatives with dementia to process. After all, their relative with dementia may be bed bound and appear relatively healthy, and they may have only a few relatively benign medical conditions besides their dementia. However, advanced dementia predisposes a person to pneumonia, poor nutrition due to difficulty eating, as well as a predisposition to febrile illnesses such as the flu.
According to the New England Journal of Medicine article, patients with dementia are often not recognized as being close to death, and thus in need of, and eligible for, palliative care. In fact, patients with dementia may be eligible for palliative care provided through a hospice as there is funding for hospice care for people who are deemed by physicians as being within six months of dying.
It is important for families to realize that hospice, or palliative care, doesn’t equal no care. Indeed, patients on hospice receive routine medical care for acute conditions such as pneumonia and urinary tract infections. Rather, hospice care should provide additional services that a person with dementia may benefit from in the final six months of their life, such as assistance with activities of daily living, as well as emotional support in addition to medical palliative care to make sure that the person is not in pain during the remainder of their life.
While hospice may provide needed services for a hospice patient, family members may find that they need to be advocates for their relative with advanced dementia as like many health care agencies, hospices try to find ways to cut costs for clients in different ways. However, the New England Journal of Medicine article wrote that patient’s with dementia often must endure burdensome interventions in the final days of life, many of which could be avoided if the family and the primary care provider knew more about end of life issues in patients with dementia.
More important may be that care of patients with advanced dementia be directed towards comfort as advanced dementia was noted to have a similar survival rate to metastatic breast cancer and end stage congestive heart failure. In fact, the suffering of patients with advanced dementia in the final months of their lives was found to be similar to suffering that people with cancer often experience in their final months of life.
The study notes that palliative care of patients with advanced dementia in nursing homes should be greatly improved, and that the number of Americans with advanced dementia will increase from around 5 million today to nearly 13 million by 2050. Certainly more clinical research is needed with regards to the effectiveness of burdensome hospitalizations and procedures in this population of patients, both in terms of medical outcomes as well as quality of life.
The Clinical Course of Advanced Dementia
The New England Journal of Medicine
Volume 361:1529-1538, October 15th, 2009, Number 16