When I wrote my book, The Five Love Languages: The Secret to Love That Lasts, I never dreamed that I would one day apply this concept to the Alzheimer’s journey.
However, I was surprised when I got a call from Debbie Barr, who was my administrative assistant when I wrote the original book, asking if I would consider writing a book with her boss, Dr. Ed Shaw, who was the director of the Memory Counseling Program at the Wake Forest Baptist Hospital. I agreed to at least visit with Dr. Shaw and sit in on some of his focus groups with caregivers of Alzheimer’s patients. Dr. Shaw’s wife, Rebecca, was diagnosed with early onset Alzheimer’s at the age of 53. Several years earlier, he and Rebecca had attended one of my marriage seminars in which I shared the five love language concept, and they had found it very meaningful. Now, he was using the concept in his counseling with Alzheimer’s patients and spouses.
About 5.5 million people in America have Alzheimer’s disease, the most common cause of dementia. The Mayo Clinic defines dementia as a continuous decline in thinking, behavioral, and social skills that disrupts a person’s ability to function independently. According to the Alzheimer’s Association, a new case is diagnosed every 66 seconds. When I met these caregivers, mostly spouses of the person with the disease, I was hooked. Thus began the journey of writing and publishing the book Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey.
For those who have not read the earlier book, the five love languages are:
Words of Affirmation – words of affection and appreciation;
Quality Time – giving someone your full, undivided attention;
Gifts – a tangible symbol of love such as a purchased, handmade, or found gift;
Acts of Service – doing helpful things for another person to lighten their load; and
Physical Touch – deliberate affirming touch.
Our greatest emotional need is to feel loved by the significant people in our lives. What I discovered is that out of the five, each of us has a primary love language. One is more important to us emotionally than the other four. It is similar to spoken languages — each of us grew up speaking a language with a dialect, and this is the one we understand best. We call it our “native tongue.” The same point is true with expressions of emotional love. Seldom do a husband and wife have the same love language. By nature, we speak our own love language, so many couples may miscommunicate to each other emotionally, despite loving each other. The key to expressing love effectively is to learn to speak the other person’s primary love language, which helps you meet this great emotional need for love.
At the beginning stage of Alzheimer’s, the patient still has a lot of cognitive ability so discovering each other’s primary love language and how to speak it thus creates a close emotional bond as the couple begins this unwanted journey. In these early stages, the patient can still speak the love language of the spouse; however, as the disease develops, much of their cognitive ability diminishes, and memory loss continues. In the latter stage the patient cannot talk and eventually cannot care for themselves. Here is the typical pattern:
Early stage (2 to 4 years) — Short-term memory loss, apathy, personality changes (sometimes becoming sweeter, sometimes becoming angry), impaired judgment, difficulty performing multiple tasks such as cooking.
Middle stage (2 to 10 years) — Behavioral problems, language difficulties, continued memory loss, repeating, wandering, delusions, and disinhibition (like cursing or other things they would never have done before). Common delusions include believing a stranger has been in the house, that people on TV are actually present, or that dolls are real. Paranoid delusions, or false beliefs that make the patient suspicious or distrustful, may also be present, such as “Someone has been stealing my money, or clothes.” The patient may accuse the spouse of infidelity.
Late stage (1 to 3 years) — Loss of ability to respond. Swallowing becomes difficult. Unable to smile or tend to bodily needs. More and more dependent.
Learning how to cope with these changes in the patient can be difficult for the caregiver. One helpful strategy is to acknowledge, affirm, and redirect. Acknowledge what the patient said. For example: “I hear you saying that you think someone is stealing your money.” Affirm the truth: “I guess that might be possible, but I think everyone loves you too much to do that.” Redirect: “Let’s go out on the deck and have a cup of coffee.” Trying to reason with the patient has no value. Redirecting their attention to something else is a positive response. This strategy is also helpful if the patient is expressing anger or accusing the caretaker of something that is not true. As caregivers we want to love the patient even when they are not very lovable.
Research reveals that long after cognitive awareness is gone, the patient can still feel loved. The amygdala, the emotional center of the brain, is still alive. They can also feel hurt from angry outbursts from the caregiver. This information is extremely important for the caregiver; it calls for patience and unconditional love.
The patient does not continue to have the same love language as when they were healthy because different parts of the brain are being impacted by the disease. However, the five love languages give the caregiver five ways to express love to the patient. When one of those languages emotionally connects with the patient, you will receive a response.
Dr. Shaw shares that while receiving gifts was not his wife’s love language when healthy, near the end of the journey when he gave her an ice cream cone, she would respond with the sound “yum.” He said, “I could live for three weeks on that ‘yum.’” He knew that he had touched her emotionally.
Research indicates that the sound of music tends to bypass the cognitive part of the brain and go directly to the mood center. In earlier stages the patient may even sing the song with you, even though they are no longer talking. My wife’s brother was a college professor before he suffered from Alzheimer’s disease. In the very latter stage, he was in an Alzheimer’s Care Center. He could not talk but simply sat and looked straight ahead. He would not turn his head if you sat to his left or right. She decided to sing some songs that she thought might touch him emotionally. She sang, “You are My Sunshine,” with no response. Then another song, with no response. Then she sang “Jesus Loves Me.” He reached out his hand and touched her hand and tears came to his eyes. She knew that she had connected with him emotionally. That was her last memory of her brother as he died three weeks later.
If caregivers and family do not understand that the emotional part of the brain is still alive, they may well say, “Why should I visit them in the facility? They don’t even know who I am.” While they may not know who you are, you can still give them a moment of pleasure. And, it will be a moment of pleasure for you also. The “happy chemicals” in the brain are released when the emotional center of the brain is touched. Endorphins are released when we laugh, and serotonin levels increase when a person feels significant or important, thus the value of words of affirmation. Oxytocin is produced when we are hugged or receive a gift. Dopamine is released in the caregiver when we see the patient respond positively. The caregiver thrives on these moments of pleasure.
On the Alzheimer’s journey, one of the hardest decisions families face is when to consider placement in a long-term care facility. Many worry that placing their loved one in a facility amounts to abandonment. Families consider facility placement at various stages in the journey for many reasons, depending on each unique circumstance, but most families find this decision necessary when their loved one has reached the stage when assistance is needed with toileting, bathing, dressing, and feeding. The physical, mental, and emotional state of the primary caregiver (often the spouse) must also be considered.
Family counseling is the most helpful way to facilitate the discussion and decision-making process. The initial family session, led by the involved medical or mental health provider, typically includes the spouse and adult children, but not the patient. Everyone wants what is best for the patient. One husband said, “I was full of uncertainty and guilt-ridden about the decision. However, it became apparent very quickly that the new environment was better for her. All of the agitation she had in reaction to me went away. I’ve learned that a one-hour visit each day is best for both of us. We hug and kiss and play old songs that we both love. Sometimes we even dance. Our time together now is quality time. I know she is getting the best care possible.”
Another important consideration is the caregiver’s emotional need for love. The caregiver may be comforted by looking back and remembering a healthier stage of life when their spouse spoke their love language. However, the day arrives when their spouse can no longer reciprocate love. Love becomes a one-way street from the caregiver to the patient, but the caregiver still has the human need for love. Other immediate family members, extended family, and friends can play the important role of loving the caregiver. Knowing the caregiver’s primary love language will help their family and friends express love in the most effective manner. Thus, I encourage caregivers to share their love language with those closest to them. They want to help, so give them the information that will make their help most meaningful.
Learning your love language is helpful in building and maintaining relationships even if your life is not touched by Alzheimer’s, but in the event that a spouse, parent, or sibling one day is diagnosed, this understanding can be invaluable on the Alzheimer’s journey.
Dr. Gary Chapman is the best-selling author of The 5 Love Languages, which has sold more than 14 million copies in 50 different languages and remains on the New York Times best seller list. Dr. Chapman also serves as senior associate pastor at Calvary Baptist Church in Winston-Salem, North Carolina and has been a family counselor for more than 35 years. He and Karolyn, his wife, have been married more than 50 years and have two adult children, Shelley and Derek.