Give the Gift of Your Time
God has made us social people; we thrive in the context of relationships. So do many of those with dementia, who are often desperate for human companionship and an escape from loneliness. All too often, they are ignored by others, including those they love. Their loneliness is exacerbated by their illness, for they often quickly forget when someone has spent time with them. I well remember a time when my mother-in-law told my wife that I no longer loved her because I never came to see her. Based on the facts as she viewed them, her conclusion was valid. But the truth was that I had visited her daily, and she had forgotten. Though Mother would forget my visits, the time was not wasted because she enjoyed them at the time.
Contrary to what we might think, the gift of presence is perhaps most significant in the advanced stages of dementia. It is not infrequent at that time for loved ones to feel that their visits do not count for anything. They assume that they won’t be recognized or their visit remembered, which may be precisely the wrong conclusion. Those with advanced dementia are often like a three-monthold baby. She will not say, “Mommy, I love you, and I’m so glad you are here,” but she is conscious of her mother’s presence, allowing her to feel comfortable and secure. Of course, adults with dementia are not children and should never be treated as if they are.
Focus on the Person
When dealing with dementia patients, it is easy to forget that they are unique people with needs, abilities, and potential. We have seen that they still have feelings and need human relationships. We must never see them as a problem to fix. I learned a lot from Elizabeth, a patient I saw several years ago. She came to the office with her sister, Frances. Immediately Frances told me that Elizabeth had wandered out at night, and the police had found her and taken her home. Frances was in tears when she related the incident, fearful that something worse might happen. Elizabeth herself sat there sulking and rather indignantly tried to explain that she had gotten hungry and wanted to go out to get something to eat. Then she said, “But no one listens to me! Aren’t I important too?” I was taken aback and ashamed, recognizing that though Frances was telling the truth, Elizabeth deserved to be involved in the discussion, and out of respect for her dignity I should have interrupted Frances and asked Elizabeth what her concerns were at the start of the visit.
All too often, the needs and feelings of people with dementia are discounted. It happens within families as well as in the medical community. How often have I heard remarks like this one: “Mr. Jones was complaining of a headache this afternoon, but he is demented, so who knows what he really feels?” Not only is that bad medicine; it also denies Mr. Jones’s value. It focuses on his disease but loses sight of him. Mr. Jones’s description of his pain may have been inaccurate, but it should not have been discounted.
Learn How to Communicate
Recognizing people’s dignity requires us to aspire to understand what they intend and, as much as possible, assure that they understand us. As we noted earlier, effective communication may require much patience from both speaker and listener. When those with dementia have trouble choosing the right word, they might appreciate a suggestion; at other times, they might find that insulting. A great deal of sensitivity is required in our efforts to respect their dignity.
In the later stages of dementia, limited cognition may curtail all verbal communication. At that point various odd behaviors may, in fact, be efforts at communication. Those seeking to understand a specific behavior must be willing to wrestle with what the behavior communicates. Spitting out food might be a way of saying, “I really don’t like what you gave me. Could you feed me something else?” Undressing in public may mean, “I want to use the toilet,” or “I am too hot.” Wandering may mean, “I’m bored and looking for something to do.” I hear patients with dementia repeatedly say, “Please let me go home,” which frequently means, “Can’t I go back to a world where I know and understand what’s going on?”
At such times, we can articulate what we think they mean and ask them if we are right. They may be able to answer us. If they spit out food, we can ask if they would rather eat something else. At times they will not be able to respond appropriately. If they are crying out, and we suspect they are trying to tell us about a particular pain, we can ask if they are hurting and, if so, to point to where it hurts. If we fail to recognize that offensive behaviors might actually be efforts at communication, we might get angry. But if we try to correctly interpret their efforts to communicate, we are respecting their dignity.
Effective communication requires not only trying to understand dementia patients but also enabling the patients to understand us. It may help to speak slowly, using short sentences and simple vocabulary and introducing only one thought at a time. Make sure patients have their hearing aids in and glasses on so they can read your lips. Face them when speaking and repeat your words. It may help to use gestures and body language to make sure you get your message across.
Jesus entered our world so that he could effectively serve us. So, too, we need to enter the world of those who suffer from dementia to effectively serve and respond to them.
Respect Their Autonomy
In earlier stages of dementia, patients are quite capable of making many decisions on their own, and when this is the case their wishes should be followed. As dementia progresses they may still be capable of choosing between a few options but be unable to make wise decisions when faced with more complex issues. So, for example, if you go out for ice cream, offer them a choice between only their two favorite flavors; it is best not to list all the flavors. As decisions become more complex and the implications of those decisions weightier, it is necessary to assess whether patients have the capacity to understand the intricacies of a decision before asking them to make it. A patient quite capable of making a decision about ice cream may not be able to understand the issues involved in deciding to have open-heart surgery. Still, as much as possible, the more we allow the patient to feel they have significant control over their choices, the more we show respect for their inherent dignity.
Respecting autonomy is not always easy. All too often I have seen conflict between an individual with mild to moderate dementia whose primary value is independence, and his family who above everything else desires his safety. I remember Edwardo, who, in the context of a moderate dementia, refused to accept any help from his loving sister and brother-in-law. He insisted on living independently, cooking his own meals, and caring for his apartment. As a result, he lived in filth and became malnourished, and his health rapidly declined. At least his independence did no harm to anyone else. It was extremely troubling not only for his family but also for me, his doctor, to allow him to live that way. Knowing he would be miserable in any other situation, we let him continue till a crisis occurred that required nursing-home care.
Protect Their Dignity
Preserving autonomy as a means of respecting dignity is important, but it is not the only thing to consider. At times we have to protect people with dementia from making mistakes that would discredit their dignity and their reputation. This is necessary because dementia often causes poor judgment, illogical thinking, and lack of inhibition that prevent them from recognizing they have any problem at all. This may be particularly true in frontotemporal degeneration, the form of dementia that Nick and Suzanne had to struggle with. It was complicated because Nick could hold a reasonably decent conversation, and his memory was pretty good.
On first meeting him, no one would guess that he had dementia. Nevertheless, his social skills and judgment were profoundly affected, and his ability to take on a task and get it done (executive function) was very limited. Most distressingly, he lacked the insight to recognize that anything was wrong. Nick insisted that he was capable of continuing in his profession in which many depended on him for their health and livelihood. Everyone but Nick recognized that he was incapable of doing his job. When confronted with his failures, he became upset and angry. Suzanne did not want to embarrass Nick by sharing his diagnosis with his friends and employers. At the same time something had to be done, or others would be hurt and his good reputation damaged. Suzanne finally had to intervene, working behind his back, and she arranged to have Nick relieved of his responsibilities. In this case, respect for autonomy and dignity had to be trumped by the need to protect his good reputation and keep him from hurting others, and in so doing, God was honored.
Driving poses a similar challenge. Allowing those unfit to continue to drive will not uphold their dignity, and it puts others at risk.
Enter Their World
People with more advanced dementia often live in their own little world. This makes it critical for those who relate to them to seek to understand what their world is like. This is intriguingly Christlike, as Jesus took on “the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself” (Phil. 2:7–8). Jesus entered our world so that he could effectively serve us. So, too, we need to enter the world of those who suffer from dementia to effectively serve and respond to them.
Early in the disease, practicing what is termed “reality orientation” can be an effective way to respond to the confusion. When my mom started to think I was someone else, I would gently remind her, “No, Mom, I’m your son, John.” Then every time I saw her, I announced myself, saying, “Hi, Mom, it’s John.” She responded to that for a while, but as her disease progressed, reality orientation was no longer helpful. When later she was convinced I was my dad, my best efforts to tell her otherwise only frustrated her, and she became convinced I was trying to play a trick. That was the time to practice “validation,” to enter her world and go along with her thinking. So I responded by telling her how much I loved her and reminiscing about some of the great family times we had in the past. I didn’t lie to her, but neither did I correct her, much like entering a child’s imaginary world. I remember practicing validation when our eldest son was three. For several weeks he decided he was a frog. Whatever he was eating, he said it was mosquitos. At bedtime he would lie down on his “lily pad,” croak, and say, “Ribbit, ribbit,” and then go off to sleep. It was great fun, and we never felt obligated to practice “reality orientation” by insisting he wasn’t a frog.
There are a number of practical ways in which we can respect dignity by entering the world of people with dementia. Here are a few examples:
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Get to know their past history, if you are not already familiar with it. Talk to them about stories from their past to allow them to enjoy the memories they still have. It may help to compile a picture book and have them explain the pictures in it.
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Share some funny stories. They may not understand them, but if you laugh, they may enjoy laughing along with you.
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Learn what they prefer to be called and use that when speaking with them. It may be the nickname they had as a child.
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Learn their likes and dislikes from earlier in their lives. You might take them to places they used to enjoy and serve them the comfort foods they once relished. Their forgetfulness may enable you to do this repeatedly. If they used to love mac and cheese, they may be fine eating it every day.
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Play the music and sing the songs they used to love.
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Slow down to get into their world. Life for those with dementia moves slowly. Anything you do together will take more time, as it may upset them or even lead to a meltdown if they feel rushed.
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Respect the constrictions of dementia. As the disease progresses, patients will be less interested in the past and future and more focused on the present. They will be less interested in news of the world outside and may not want to leave the comfort of their home or room. What is going on in the lives of other people may not be important to them; eventually, however, they will care only about how they feel in the here and now. To respect their dignity, those around them must learn to enjoy the present moment with them. At times, being touched and held may be all they want. Recognize that caregivers’ need for activity may be far greater than theirs.
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Respect their resistance to change. Establish routines they are comfortable with. Having meals at the same time and going to bed and getting up on a regular schedule are usually best. The world they live in does not require much variety.
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If they perceive that you did something wrong and have become upset by it, accept that their understanding of what happened may be totally different from yours. Do not make excuses but apologize profusely. That will affirm them, avoid arguments, and allow them to feel better.
This article is adapted from Finding Grace in the Face of Dementia by John Dunlop, MD.
John Dunlop (MD, Johns Hopkins University) practiced geriatric medicine for thirty-eight years and taught in the bioethics program at Trinity International University. He now lives in New Haven, Connecticut, where he taught at the Yale School of Medicine. Dunlop is the author of Finishing Well to the Glory of God; Wellness for the Glory of God; and Finding Grace in the Face of Dementia.
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