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Making Decisions and Managing Difficult Situations

Terminal Stage and End of Life Care

As dementia worsens, people are able to do less for themselves. During the end stage, there is difficulty in eating resulting in weight loss. The person loses the ability to walk and becomes bedbound. There is a gradual loss of speech though they may repeat some words or cry out from time to time. The person no longer has control over the bladder and bowel and needs to be cleaned, bathed, and turned.

Several medical problems develop as dementia progresses, including infections and problems with eating, drinking, and swallowing.

Infections and Fevers: Almost half of the people who have dementia will get pneumonia at least one time. Repeated infections are also common. These infections are not always preventable and may not get better with antibiotics.

Eating and Drinking Difficulties: As dementia reaches the end stage, eating and drinking difficulties occur in almost all people. They will forget or refuse to eat or drink.

Swallowing Problems: Some people hold food in their mouth or let the food spill out, even when they are assisted by a caregiver. A person may appear to be swallowing but it is possible that the food, liquid, or saliva may go down the wrong way and enter into the lungs. This can cause a lung infection called aspiration pneumonia.

Heart or Breathing stops: Unlike what we see on TV, very few people with end-stage illnesses survive by others restarting their hearts or lungs (resuscitation).

Families of person with dementia may eventually face very difficult decisions regarding medical treatment for the person in their care. One of the most common decisions is whether to use a feeding tube when the person can no longer chew and swallow food. There is no good evidence to demonstrate that feeding tubes prolong life nor improve the quality of life in the person with end-stage dementia. Some families, however, wish to have the patients fed by this means. Others feel that this is a quality of life issue and that their loved one would not want to live this way. At that time, care can be focused on comfort measures and hospice services may be of assistance in allowing the person to die naturally.

Often persons in the early stages of the illness can communicate wishes about which interventions they may want at the end of life or whether they would prefer to let nature take its course, providing they are protected from undue pain or distress. Because deciding for someone else is stressful, it is always helpful to discuss the issue of interventions with the person with dementia at an early stage in the illness.

(Adapted with permission from Laguna Honda Hospital and Rehabilitation Center)