First study to track movement of individuals with dementia until death

A new study from the Regenstrief Institute and Indiana University has found that, at time of death, individuals with dementia are more likely to be living at home than in a nursing home. This contradicts the commonly held view that most individuals with dementia in the United States eventually move to nursing homes and die there.

"Transitions in Care for Older Adults With and Without Dementia" appears online in advance of publication in the May 2012 issue of the Journal of the American Geriatrics Society.

Most individuals with dementia, even advanced dementia, die of a physical condition such as heart disease, cancer or pneumonia. This study is the first to track movement of individuals with dementia until death regardless of whether the cause of death was recorded as dementia or as another condition.

The study follows these individuals to determine where they receive care and in what order. Rather than finding individuals with dementia progressing on a straight line from home to hospital to nursing home as presumed, the researchers found that individuals with dementia go back and forth. The number and direction of transitions in care can be numerous and follow no determined path.

"This is a study on what it is like to live with dementia over a five- to 10-year period," said Regenstrief Institute investigator Christopher Callahan, M.D., Cornelius and Yvonne Pettinga Professor in Aging Research at Indiana University School of Medicine and director of the Indiana University Center for Aging Research. "You probably won't proceed on a straight line from home to hospital to nursing home. You will experience multiple transitions as you progress from mild to moderate to advanced dementia."

While 74 percent of the time individuals with dementia go to a nursing home after hospitalization, they don't remain there. Approximately a quarter will return to the hospital in less than a month. Many of the remainder will return home.

The researchers determined that a majority of care for those with dementia, even advanced dementia, is provided in the community by families.

"These results challenge previous assumptions," said Dr. Callahan, who founded the IU Center for Aging Research in 1997. "Our findings will provide important information for all those concerned with managing the care of older adults - families, physicians, social workers, policy-makers, Medicare and Medicaid, insurance companies, hospital and nursing home administrators, as well as aging individuals. Caring for people living with dementia requires the attention of our entire health care system."