Dealing with complex medical issues in late-stage dementia

Created date

December 30th, 2019
A woman sitting in a wheelchair places her hand on top of someone else's, which rests on her shoulder.

A woman sitting in a wheelchair places her hand on top of someone else's, which rests on her shoulder.

“The medical community has learned a lot about end-of-life decisions from people with cancer,” says Anne Kenny, M.D., geriatrician and palliative care physician in Farmington, Conn., and author of Making Tough Decisions About End-of-Life Care in Dementia (2018, Johns Hopkins University Press). “It is time for us to offer the same end-of-life care to people with dementia-related diseases.”

Many people think of dementia as strictly a chronic condition and forget that it is also terminal. Because of this, some health care providers view it as a disease to be actively treated, and caregivers find themselves unprepared and unsupported when decisions have to be made in the later stages.

Establishing goals

“You have to know your overall goal for your loved one,” Kenny says. “Is it comfort care, life-sustaining care, or something in between? Knowing goals can help guide your decisions about medical care details.”

This is where an advance directive can be helpful, but not enough people have them. Families may have had conversations with loved ones about what kind of care they would want if faced with a terminal disease, but that isn’t always helpful when the time comes. “It is hard to talk about death,” Kenny says, “so many people discuss generalities but do not address details that would guide family members in specific situations.”

In addition, goals may change throughout the course of a dementia-related illness. “People can live well with dementia up to a point,” Kenny says. “But when the phase arrives where the person is no longer living well, it is time to have a discussion with your loved one’s health care provider to help guide what types of medical interventions they may or may not want.”

Palliative care and hospice 

“Palliative care focuses on comfort and dignity in the final months of life,” Kenny explains. “Families and caregivers are included in the plans of care.”

The goal of palliative care is not to treat or cure but rather to alleviate pain and other symptoms while supporting the individual’s day-to-day life. Hospice care adds counselors, clergy, and respite care planning to deal with the mental, spiritual, and social needs of the individual and families.  

The palliative approach to care has been the focus of many studies, and a recent review of the research showed that palliative care alleviates disease symptoms and helps families with advance care planning. There are also intangible benefits. “The research evidence also shows that palliative care increases satisfaction for patients and families and significantly improves quality of life,” Kenny says.

Nutrition decisions

As someone moves into the later stages of dementia, they may have problems with food intake. “Approximately 90% of people in the late stages of dementia will develop problems eating,” Kenny says. “They may lose their appetite or have difficulty chewing and swallowing.”

A good first strategy is to check for any treatable causes. “Someone could have ill-fitting dentures, mouth sores, or problems with their natural teeth,” Kenny says. “But you may or may not see an improvement in eating once a problem has been fixed.”

Sometimes a loss of appetite in late-stage dementia can occur simply because less energy is being expended. “People gradually become less active as dementia progresses,” Kenny says. “Not as much food is needed.”

To increase their loved one’s appetite, some caregivers may want to try appetite stimulants or alter the diet itself—for example, change the texture, consistency, or switch to a higher protein content. “Such strategies may help someone eat more for a short time,” Kenny says. “But research shows that they do not improve function or prolong survival in people with late-stage dementia.” 

Feeding tubes are an option every family has to weigh carefully. Years of research have yielded more information about this intervention for people with late-stage dementia. “Feeding tubes have not been shown to prolong survival, improve nutrition, or prevent aspiration pneumonia,” Kenny says. 

“Inserting a feeding tube is a surgical procedure with all the related potential complications,” Kenny continues. “In addition, studies show that people end up in emergency rooms because of complications such as obstruction or dislodgement.”

The purposes of eating can shift in the late stages of dementia. “Hand feeding can be a good choice for several reasons,” Kenny says. “Feeding becomes less about providing nutrition,” Kenny says, “and more about offering food for pleasure, comfort, and the opportunity to interact with another person,” Kenny says. 

Treating infections 

Infections, especially those affecting the lungs and urinary tract, occur in about two-thirds of people in their last years of life. There are several reasons for this. “The immune system weakens, and they might have difficulty coughing and clearing the airway,” Kenny explains. “People tend to eat and drink less, so urine flow decreases, which allows bacteria to multiply in the urinary tract.” 

Again, goals are important. The majority of symptoms of infection can be treated without a trip to the hospital. In addition, in end-stage dementia, treating infections with antibiotics has not been shown to significantly prolong life. 

Continuing medications for chronic diseases

Most older adults have at least two chronic health conditions and take an average of five medications. Pills may become difficult to swallow, and you may not be able to crush them without affecting how they work. “Your health care provider may help you sort out which drugs can be discontinued without posing a significant health risk,” Kenny says. 

“One study about statins [cholesterol-lowering drugs] showed that they may be safely discontinued for people with late-stage dementia,” Kenny says. “Reducing the burden of maintenance medications can lessen the likelihood of possible interactions with symptom-alleviating medications that could benefit the patient more.”