Dementia is an umbrella term used to describe several symptoms related to changes in cognition, personality, and behavior. Common symptoms include a gradual loss of memory, problems with reasoning or judgment, disorientation, difficulty in learning, loss of language skills, and decline in the ability to perform routine tasks. Alzheimer’s disease , the most common form of dementia in the United States, affects an estimated 4.5 million Americans.

The progression and length of dementia can vary widely from patient to patient. In these diseases, the areas of the brain that control memory and thinking skills are affected first. Over time, cells in other regions of the brain also begin to deteriorate. Eventually, the patient requires complete care.

One must believe that President Reagan received the best possible care during his illness and as he came to the end of his life. But for many others, access to adequate palliative care through the hospice program, which is considered the most appropriate goal for patients with advanced dementia, is sometimes difficult to access.

This is because in order to be eligible for hospice, Medicare patients must have an estimated life expectancy of less than six months. Unfortunately, accurately estimating life expectancy in patients with advanced dementia can be difficult and many patients with advanced dementia who are currently in nursing homes are not receiving adequate palliative services.

To address this issue, a group of researchers set out to identify the factors associated with imminent mortality in newly admitted nursing home residents with advanced dementia. They then used these factors to create a practical risk score to help doctors predict six month life expectancy in this population. The results of their study were published in the June 9, 2004 issue of The Journal of the American Medical Association.

About the Study

All Medicare and Medicaid-certified nursing homes are required to periodically collect data on each resident’s functional, medical, cognitive, psychologic, and social status. This information is referred to as a minimum data set (MDS). For this study, the researchers used this data to create a list of MDS factors that were associated with six-month mortality for patients with advanced dementia.

The researchers enrolled 11,430 participants in the study. They were divided into two groups: the first, the derivation group (6799), was used to determine which factors would be included on the list. The second, the validation group (4631), was used to verify the findings of the first group. All of the participants in the study were at least 65 years of age and had advanced dementia. In each case, the reason for their MDS evaluation was to determine their eligibility for admission to a nursing home.

In the end, the researchers identified 12 variables that were believed to be associated with six-month mortality for patients with advanced dementia. These variables included:

  • Significant impairment of activities of daily living
  • Male gender
  • Age over 83
  • Cancer
  • Congestive heart failure
  • Shortness of breath
  • Need for oxygen therapy
  • No more than 25% of food eaten at most meals
  • Unstable overall condition
  • Bowel incontinence
  • Bedfast
  • Sleeping most of the day

Using these variables, the researchers determined each participant’s risk of mortality. This risk score varied according to the number of variables the participant possessed.

The Findings

The study found that 28.3% (1922) members of the derivation group and 35.1% (1626) members of validation group had died within six months of their admission to the nursing home.

The total possible range of points for the risk score was 0-19 (some variables were weighted more heavily than others). The researchers found that the mortality rate increased as the risk score increased, as shown in the following table:

Risk Score

Mortality Rate

0 points


1-2 points


3-5 points


6-8 points


9-11 points


At least 12


How Does This Affect You?

The researchers concluded that their model offers improvement over current methods for estimating life expectancy among patients with advanced dementia and therefore may permit greater access to appropriate palliative care for many patients.

Unfortunately, while the current, narrow eligibility criteria for palliative care ensures that few patients receiving this care will linger longer than six months, it also excludes a significant number of patients with advanced dementia who will also die within six months. Broader inclusion criteria, on the other hand, would allow more patients access to palliative care, but would also mean that a larger percentage of these patients would linger more than six months, and therefore increase costs to Medicare.

Few would argue the imperfection of the Medicare system, but in the absence of something better, models such as this are an important step in making an imperfect system, a bit more humane, and allowing more Americans to reach the end of their lives with the comfort and dignity they deserve.

God speed, Mr. President.