The CDC (Centers for Disease Control) reported this year that in 2006 Alzheimer's disease moved up one place to become the 6th leading cause of death in the USA. 72,914 Americans died of the disease. While life expectancy for Americans increased to an average 78.1years, statistics showed that Alzheimer's disease was the only one of the 15 leading cause of death where death rates increased (age is one of the major risk factors for Alzheimer's).
When people get a diagnosis of Alzheimer's disease they not only have to face living with the illness itself, they often begin to consider their death. Many ‘patients', and their families, wonder how they will die and start to ask health care workers for more information about end of life issues.
Statistics vary about the length of time people survive with Alzheimer's from diagnosis to death, but it is about 8 years. The cause of death varies, but is one of three ways;
- from another medical condition such as heart disease or cancer.
- from the interplay of another illness and Alzheimer's where their dementia has not affected their functioning to a great degree.
- from end stage Alzheimer's where the disease impacts on all areas of their life and they die from the complications of the condition. Pneumonia is one such end condition.
Although it can be difficult to predict the exact timing and nature of death we have to think about a number of challenges that a diagnosis of Alzheimer's disease brings. There is a difference between when a person stops living with dementia and starts dying from it. There are a number of prognostic indicators that are used by healthcare services that assist in making decisions about what time people with dementia have left. For example, the National Hospice Organization Medical Guidelines Task Force 1995, is based on a number of variables that are found to predict six month mortality in someone with advanced dementia more accurately than other models. They found 12 variables to be the most accurate. They were, a low Activity of Daily Living score, male gender, cancer, the need for oxygen therapy, heart failure, shortness of breath, no more that 25% of food eaten at most meals, an unstable condition, bowel incontinence, bedridden, over 83 years of age and being asleep most of the day.
It is difficult to start talking to people following a diagnosis of Alzheimer's disease about dying from this life-limiting illness. Still reeling from the implications of the diagnosis you are then asking them to help plan their care while they are better able to articulate and communicate their wishes. Timing and great sensitivity is required to make the judgment about end-of-life care. Avoid talking about the issue and you as a caregiver or service provision service, risk poorer quality of care and give less voice to the person dying with Alzheimer's.