June 8, 2004
Alzheimer's and other forms of dementia are among the most painful and demanding of all diseases. As memory and thinking skills gradually fade and afflicted persons can no longer care for themselves on a day-to-day basis, care partners must often make the wrenching decision to place a loved one in a nursing home or other facility. Even at that point, though, it often remains difficult to guess how much longer someone with Alzheimer's might require care, a consideration that can have tremendous emotional, financial, and spiritual impact for anyone touched by the disease. But new research is shedding important light on this sensitive issue of end-of-life planning, a difficult but vital component of Alzheimer's care.
Researchers at Beth Israel Deaconess Medical Center and Harvard Medical School in Boston reviewed the records of more than 11,000 men and women who entered nursing homes in New York and Michigan. They identified a number of factors that increased the risk that someone in the later stages of Alzheimer's or advanced dementia would pass away within six months. Although predicting survival remains more art than science, and nobody knows for sure how long any one individual will continue to go on living, a number of risk factors were identified:
- Problems with day-to-day activities. Nursing home residents with advanced Alzheimer's who were completely dependent on others for such day-to-day activities as dressing, going to the bathroom, moving around, eating, or grooming themselves were at greater risk of dying. Those who could complete such tasks on their own, even if they required a lot of help, tended to live longer.
- Being a man. Men with Alzheimer's tend not to live as long as women with the disease, although there's a lot of variation from one individual to the next.
- Having cancer, heart failure, shortness of breath, or an unstable medical condition, or requiring oxygen therapy. If someone with advanced Alzheimer's also has cancer or congestive heart failure, they are more likely to die in the following six months. In fact, anyone with an unstable medical condition, be it heart disease or another ailment, tended to fare poorly. Those who are short of breath (often a symptom of heart disease) or require oxygen therapy (because of lung or heart problems or other ailments) also do not tend to live as long.
- Poor eating. Nursing home residents with dementia who ate no more than a fourth of the food on their plates at most meals were more likely to die within the following six months.
- Bowel incontinence. Men and women with dementia who could not hold their bowel movements fared worse than those who were not incontinent.
- Advanced age. In general, the older someone with Alzheimer's is, the greater the likelihood of death. Men and women who were older than 83 tended to die sooner than younger residents.
- Being confined to bed or sleeping most of the day. Residents who were unable to get out of bed did not do as well as those who could move about. Those who were not awake for most of the day also tended to die sooner.
The more of these factors that someone with Alzheimer's had, the greater the risk that he or she would die within six months, the authors report. For example, an 85-year-old man with advanced Alzheimer's who was confined to bed and totally dependent on others for day-to-day care would not be expected to live as long as a female resident of the same age and mental condition who could still move about the nursing home. However, it's important to remember that each case is different, and there are no hard-fast rules when it comes to knowing how long someone might continue to go on.
Predicting Survival: Important But Imprecise
Predicting how long someone with Alzheimer's, or any terminal illness, might live is important for many reasons. First, having some idea how long someone might be expected to survive gives families a chance to prepare emotionally, financially, and spiritually. It also has important implications for medical care. Toward the end, for example, doctors can abandon heroic efforts to keep someone alive and instead offer palliative care that eases pain and suffering.
Knowing that someone is expected to live six months or less also makes a person eligible for hospice care, a specialized form of medical care geared toward the final months of life. Currently, only a small proportion of people who are admitted to hospice care (less than 1 percent) have dementia as their primary diagnosis, in part because of the lack of accurate prognostic tools and difficulty in predicting survival in this group of individuals.
This latest Harvard study, published in the June 9, 2004 issue of the Journal of the American Medical Association, complements another recent report from the University of Seattle in Washington, in which researchers identified some of the same factors that predict longevity in men and women with Alzheimer's. In that earlier report, investigators found that, overall, women with Alzheimer's tend to live longer than men with the disease (an average of 6 years after diagnosis for women, compared to about 4 years for men), though there is considerable variation from person to person. Advancing age, functional symptoms such as having trouble walking, and accompanying ailments such as heart disease or diabetes were also identified as risk factors for a shortened life expectancy.
"Estimating Prognosis for Nursing Home Residents With Advanced Dementia," Susan L. Mitchell; Dan K. Kiely; Mary Beth Hamel; Pil S. Park; John N. Morris; Brant E. Fries. JAMA. 2004;291:2734-2740