End of Life Strategies

Facts 

• Roughly one half of all people diagnosed with dementia will pass from a medical illness, not dementia.  The other half will require the primary caregiver to make decisions about how the end of life plays out. 

• Have discussions about end of life wishes preferably while an individual can still contribute to the decisions.  Document these in a living will, with a Do Not Resuscitate order (DNR) or a Medical Orders for Scope of Treatment form (MOST, varies by state).  

 

Considerations for end of life and dementia 

Falls  

• Fall prevention is a critical element during the end-stage of dementia. 

• Falls lead to complicated decisions about care including surgery, immobilization, rehabilitation, and possible change in living situation. 

• When lack of mobility creates a high risk of falls it is preferable to place the individual in a wheelchair.  A wheelchair not only prevents falls, but it also permits the use of medications for agitation, aggression, and delusions that are too high risk to use otherwise. 

 

Dysphagia – difficulty swallowing 

• Normally chewing and swallowing are passive activities as a bolus of food is moved to the back of the throat then into the esophagus and stomach.  

• As cognitive changes progress, the nerves that control swallowing are affected. 

• The person loses the ability to passively move food into the esophagus, so it more easily goes into the trachea and lungs leading to aspiration pneumonia.   

• The person will have increasingly frequent episodes of intense coughing. 

• Liquids are more difficult to swallow than food and often lead to coughing episodes.  Thickeners are sometimes used. 

• Difficulty swallowing can be an indication to consider hospice. 

 

Apraxias – loss of learned motor movements 

• Early in dementia a person may begin to lose the ability to perform learned motor movements but if shown can imitate the skill; for example, watching the caregiver brush their own teeth then imitating the skill and doing it themself. 

• As dementia progresses adjustments need to be made such as offering a straw for drinking or serving finger foods when the person can no longer use utensils. 

• When a person can no longer feed themself and only knows how to open their mouth, a significant decision by the caregiver needs to be made that directly impacts longevity. 

Option One 

• • Feed the person, putting food and drink in their mouth. 

• • If the risk of choking is too high, a feeding tube can be inserted. 

• • A person can live for a long period of time when they are receiving nutrition. 

Option Two 

• • Provide food and drink only if the person shows a desire for it when it is offered. 

• • Dehydration provides calmness and euphoria and is not uncomfortable for the person in the end stage so long as oral care is provided. 

• • A person will usually pass within a week with no food and a couple of days with no fluids. 

• • Hospice can be consulted at this time to provide comfort measures. 

 

Hypothalamus and Vital Center 

• The hypothalamus and vital center are specific parts of the brain that control temperature regulation, breathing, blood pressure and heartbeat. 

• As dementia progresses, these areas of the brain begin to fail. 

• Indications that the hypothalamus and vital center are failing: 

• • Cold intolerance 

• • Loss of appetite; in rare instances the appetite may increase 

• • Excessive daytime sleepiness 

• • Hospice can be consulted at this time for comfort measures.