How Do You Say, “I Love You” When Your Loved One Has Alzheimer’s?
by Debbie Barr
In our book, Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey, my coauthors and I share some thought-provoking truths about the way Alzheimer’s disease affects personal relationships. One such truth is that people with Alzheimer’s often continue to experience emotions, whether positive or negative, after they have forgotten what triggered the feeling. That is, even in the absence of memory, their emotions persist.
This is more than just an interesting fact; it is vital information for anyone who wants to sustain an emotional connection with a person whose cognitive abilities are declining due to Alzheimer’s disease.
What does this persistence of feelings apart from memory mean in practical terms? Here are two examples:
- If you say something that causes a person with Alzheimer’s to laugh, the positive feelings generated in that moment are likely to persist even after they have forgotten what had seemed so funny.
- If a person with Alzheimer’s cannot remember that their spouse has died, each time someone reminds them that their mate has passed away, it is as if the person is learning of their spouse’s death for the first time. The sorrow triggered by this “news” can continue to color their mood after they have again forgotten the reason for their sadness.
The authors of a research study that investigated this phenomenon published their findings in the journal, Cognitive and Behavioral Neurology. They wrote, “The fact that these patients’ feelings can persist, even in the absence of memory, highlights the need to avoid causing negative feelings and to try to induce positive feelings with frequent visits and social interactions, exercise, music, dance, jokes, and serving patients their favorite foods. Thus, our findings should empower caregivers by showing them that their actions toward patients really do matter and can significantly influence a patient’s quality of life and subjective well-being.”1
These are exciting and hopeful findings for everyone who wants to reach out in love to a person with Alzheimer’s! My coauthors and I are convinced that just as emotions persist after memories fade, so does the sense of being loved. The warmth of love can also linger on even after the actions or words that delivered the love message are forgotten. This idea is the very heart of our book. We present the five love languages as tools that family members can use to keep love alive even as their loved one’s memory continues to fade with the progression of the disease.
In case you are not familiar with the five love languages, here is a quick overview:
More than 25 years ago, my coauthor, Dr. Gary Chapman, recognized that there are five emotional “languages” or communication channels that we all use to express our love to others. While we can all receive love in all five channels, for most people, one channel is primary, or most emotionally impactful. Gary’s best-selling book, The 5 Love Languages, laid the groundwork for Keeping Love Alive as Memories Fade (affectionately known as KLA to the authors and our publishing team). The uniqueness of KLA is its recognition that because the human need for love doesn’t disappear with a diagnosis of dementia, the love languages can help bridge the emotional gulf between loved ones that the disease inevitably creates.
Below are very brief definitions of the five love languages, with adaptations for using them with people who have Alzheimer’s disease:
- Physical Touch. When reaching out to a person with dementia, touch can either be expressive, such as holding hands or stroking the hair, or instrumental (task-oriented) touch, such as assisting them with bathing or dressing.
- Quality Moments. A quality moment is one in which you give your undivided attention to a person with Alzheimer’s. This adaptation of the love language of Quality Time is necessary because as memory fades, life is increasingly experienced only in moments.
- Gifts. A gift can be either tangible or intangible. A tangible gift is any purchased, found, or handmade token of love. The gift of your time is an intangible expression of love.
- Words of Affirmation. This love language consists of compliments, kind words, or words of encouragement. The words can be spoken or written (if the person with Alzheimer’s can still read).
- Acts of Kindness. This is an adaptation of the love language, Acts of Service. For those with Alzheimer’s disease, an act of kindness is anything done to preserve the person’s dignity or make them feel useful. Examples: including someone in a group conversation even though they can’t contribute, or asking them to “help” by folding towels on laundry day.
Perhaps you have heard Dr. Maya Angelou’s famous observation that “people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” While it cannot be said that those with Alzheimer’s will “never forget” how you made them feel, Dr. Angelou’s words underscore so well the importance of expressing love to them. When you reach out to a person with Alzheimer’s using the love languages, you leave behind an emotional imprint of love that lingers on even after your words or kindnesses are forgotten.
As the disease progresses and the affected person is less and less able to reciprocate or respond to your love, don’t be discouraged. I truly believe, and so do my coauthors, that expressions of love continue to resonate at some deep emotional level as long as a person is alive.
1Edmarie Guzma et al., “Feelings Without Memory in Alzheimer Disease,” Cogn Behav Neurol 27 (2014): 117–129.
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