An excerpt from Living in the Moment: A Guide to Overcoming Challenges and Finding Moments of Joy in Alzheimer’s Disease and Other Dementias.

When confronted with an injury or an illness in a loved one, it’s human nature to respond, “Do everything! Whatever it takes!” Pulling out all the stops may make sense for a patient who’s forty or sixty, even seventy. For someone who’s eight-five or ninety-five, it may not.

The decision to take a less aggressive approach isn’t necessarily based on age; rather, it’s because the patient is frail. We do not advocate “slow medicine,” but focused care for the goals of the elder. Those with dementia often feel under attack and become combative in hospital settings. To prevent elders from fighting the treatments or pulling out intravenous (IV) lines and monitors, they’re often heavily sedated and restrained. This can lead to pressure ulcers, choking on food or phlegm, blood clots, delirium, and an earlier death. Aggressive treatment often means a worse outcome. This makes it important to figure out what doctors call the “goals of care.” Simply put, this means defining why the patient is getting medical treatment in the first place: Is the goal a complete cure? Is it to make the patient as comfortable as possible? Is it to make it possible for the patient to stay at home? Is it to preserve function as long as possible? Ask yourself: What would your loved one want? Would he or she want to undergo the stresses of being in the hospital? To even be there? To be treated at all costs?

Consider a ninety-two-year-old woman with dementia who has become terrified of hospitals. She develops the flu—a condition that may demand hospitalization. If she is sent to a hospital instead of being treated at home, she won’t understand what’s happening to her.

A hospital is a very confusing and scary place for someone with dementia. Imagine being in that world of IV tubes, beeping heart and respiration monitors, blood draws, and uncomfortable procedures. Now imagine that you have no idea what’s going on, why you’re being put through all this. Frightened, the patient may become aggressive, fighting the hospital staff members—who will respond by tying the patient to the bed and sedating him or her.

Staying immobile in this way will put patients at higher risk for bedsores, aspiration of food or water into the lungs, and blood clots. For every day that they spend in bed, they will lose 5 percent of muscle mass. Over five days that is a 25 percent muscle loss. Even if patients sit up straight to eat (which isn’t always the case) or lie flat after feeding, their increased confusion makes them more likely to suck in, or “aspirate,” food into her airway. Aspiration can lead to pneumonia, and pneumonia is a major cause of death for elders. So, in such cases, the most aggressive treatment may actually hasten a patient’s death.

An alternative is to have an evaluation done in the elder’s home, a doctor or nurse practitioner house call, starting with antibiotics, if indicated for bacterial infection, and following up with a visiting nurse to make sure the elder is better. Care in familiar surroundings with familiar caregivers is much more comforting to those with dementia and fear of new environments.

One of the most disturbing things about dementia is the feeling that we are losing control. We all have goals and hopes. We all like to feel that we have some power to decide things for ourselves. Over the course of a lifetime, we all develop a unique understanding of what’s most important, what’s most meaningful to our quality of life. This helps us to organize our lives.

As people grow older and less able to understand and cope, these goals and hopes inevitably shift. While a retired athlete may have wanted to remain healthy enough to play tennis, he later may become content with a daily walk. A woman who adamantly insisted on staying in her home may become so lonely and so infirm that moving to an assisted-living facility becomes a godsend, not a defeat.

It’s important for families and patients to periodically review their goals and hopes with the medical and caregiving team. Remember that medical schools tend to emphasize curing disease. Most training programs provide only one month on geriatric medicine, and they devote even less time to the care of dementia. Few doctors spend more than a few days on special courses in end-of-life care. Psychologically, it’s hard for most doctors to admit that they can’t fix something. After all, most of them got into medicine because they wanted to triumph over problems, not learn to live with them.

Because of this reality in the medical culture, families need to be proactive. They need to ask the questions rather than wait for the medical team to do so. This process will be easier for everyone if patients, families, caregivers, and medical professionals can agree on the goals of care.

As you think about these goals, ask yourself: What would my loved one really want? What can he or she expect to get out of treatment?

Often, the patient and the family might want different things. Many, many times I have had to face a son or daughter who wants to put the parent in a nursing home or wants a medical procedure that the parent doesn’t want. I believe we should honor our elders’ wishes rather than doing what makes us feel most comfortable. As much as possible, our feelings of fear and loss shouldn’t get in the way of the patient’s wishes. The eighty-five-year-old woman who lives alone and is falling frequently and can’t remember she is falling and refuses help at home needs to have someone with a durable power of attorney or her chosen “decider” help determine what arrangements will let her be as independent as possible while living as safely as possible.

Every few months, or as changes occur, ask your family and your medical team:

• What are the priorities?
• What makes life worth living for my loved one? How can we best support that?
• How should the plan for care be structured to help achieve these goals?

Having a plan not only avoids many problems, it also actually enhances the quality of life. It helps everyone to cope, to respond, and to prepare for the future. The key is to agree on guidelines that honor the values of the person being cared for and then to make sure that everyone follows through.

Elizabeth Landsverk is a geriatrician and author of Living in the Moment: A Guide to Overcoming Challenges and Finding Moments of Joy in Alzheimer’s Disease and Other Dementias.

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