Far too many people with Alzheimer’s disease and other forms of dementia spend their days feeling bored, confused, uncomfortable, and isolated. But that need not be the case, according to a growing number of experts who say that employing a treatment approach known as palliative care for dementia throughout the course of the disease can help improve quality of life for patients, and in turn lighten the burden for their families and caregivers.
The purpose of palliative care is to relieve symptoms and stress for people with serious illnesses. In a larger sense, this caregiving philosophy helps ensure that a dementia patient’s life retains a sense of meaning, despite the devastating effects of the disease.
While those may seem like obvious goals, researchers say that palliative care is not typically offered to dementia patients. In fact, to many people, the phrase “palliative care” calls to mind drugs and other treatments that are administered to relieve pain and other symptoms in cancer patients who are nearing death.
Some even believe—incorrectly—that the purpose of palliative care is to hasten a patient’s death. In fact, palliative care can benefit people with any serious illness.
And, importantly, palliative care can be introduced early in the course of dementia, when a patient likely has years of life remaining. Some hospitals now have physicians and other health professionals who specialize in palliative care. Research has found that this proactive approach benefits both patients and their caregivers.
The goal of palliative care
Dementia is caused by the gradual dying off of neurons and other brain cells. Over time, the loss of these cells leads to memory loss and impaired thinking characteristic of Alzheimer’s disease and other dementia.
Although Alzheimer’s disease and most other forms of dementia are irreversible, people who develop these cognitive diseases may live with their symptoms for a long time—roughly eight to ten years after diagnosis, on average. The goal of palliative care for dementia patients is to make their remaining time as satisfying and comfortable as possible.
People sometimes confuse palliative care with hospice. The latter refers to care given to patients at the very end of life; Medicare, for example, limits coverage for hospice to people who have a life expectancy of six months or less.
While hospice is part of palliative care, the latter refers more generally to treatments and interventions offered to mitigate symptoms and improve life quality in any seriously ill person. (Medicare covers some forms of palliative care, as do some private insurers.)
Planning and pain management
When people are first diagnosed with dementia, they usually still have the capacity to communicate and think clearly enough to discuss complex issues. Experts say that a caregiver should use this time to work with the patient to make plans for the future, when he or she will no longer be able to make important decisions about care.
One vital step is to draft a living will, which establishes the type of medical treatment a person desires if he or she becomes unable to express those wishes. In addition, the dementia patient should designate a person to make medical decisions when he or she is no longer able to do so. Creating a careful plan early on can help minimize stress and anxiety for both the patient and his or her loved ones as dementia progresses.
As symptoms worsen, people with dementia may struggle to express themselves. While pain is not a symptom of dementia, patients may have other medical conditions that cause discomfort (such as arthritis or neuropathy), which they may not be able to describe.
As a result, pain is often undertreated in people with dementia. That’s not only unpleasant for the patient, but persistent pain and undetected infections increase the likelihood of aggression and other inappropriate behavior.
In contrast, studies have found that when the pain of people with dementia is well-managed with medication, they experience less stress and are more likely to engage in constructive activities. Caregivers should look for nonverbal cues, such as crying out or refusing care, which may suggest the patient is experiencing pain.
If you care for a person with dementia, discuss with his or her doctor whether it makes sense to eliminate or adjust the dose of any medications the patient takes. A person with a limited life expectancy may not gain much benefit from remaining on a drug whose benefits are long-term benefits, such as cholesterol-lowering medications.
In addition, aggressively treating conditions such as high blood pressure and diabetes may cause side effects such as dizziness and falling that could result in harm.
Loneliness, boredom, and other negative feelings are commonly experienced by people with dementia and can cause them to become restless, disruptive, and more likely to wander away from a residence. Filling their days with enjoyable and engrossing activities can help alleviate these problems.
One survey found that dementia patients in nursing homes got the most pleasure from human or pet companionship, so encourage friends and family to visit when possible, and to bring their dogs and cats, if possible. (A few studies have found that aggression among patients in a nursing home was reduced following pet visits.)
Studies also suggest that dementia patients feel more satisfied and engage in fewer disruptive behaviors when they participate in meaningful activities. Many people with dementia become apathetic, or lose interest and enthusiasm for life’s pleasures, so a patient will likely need gentle encouragement to take up an activity.
The patient will be more likely to take an interest in activities that reflect his or her identity in some way. For example, a person who liked to bake is likely to enjoy making a batch of cookies, while a jazz fan might get pleasure from listening or dancing to favorite tunes. Encouraging people to participate in activities such as sorting playing cards or stringing beads can prove satisfying.
Studies suggest that people with dementia benefit from physical activity even if their mobility is limited. A 2016 study in the American Journal of Psychiatry found that several nursing facilities in the United Kingdom that implemented exercise programs for dementia patients, such as walking, dancing, and chair volleyball, witnessed reductions in the incidence of problems such as apathy, anxiety and delusions. Increasing social interactions helped improve patient behavior, too.
In late stages of dementia, a caregiver should ensure that his or her loved one’s wishes are followed regarding end-of-life care. Of utmost importance, the caregiver should discuss with physicians what measures should, and should not, be taken to sustain the patient’s life, such as cardiopulmonary rescue (CPR) in the event of a heart attack.
Proponents of palliative care emphasize that even some less dramatic procedures and treatments have questionable value for the dementia patient, and may cause considerable discomfort.
For example, although people with dementia often lose the capacity to swallow, gastric feedings tubes do not offer any benefit. A review of seven studies found no evidence that tube feeding improves the nutrient intake or survival of people with dementia.
To learn more about how this comforting and life-affirming approach can help your loved one, contact Get Palliative Care.
Read more about end-of-life care.
Timothy Gower is an award-winning journalist who writes about health and medicine. His work has appeared in more than two dozen major magazines and newspapers, including Prevention, Reader’s Digest, and the Los Angeles Times.