LET THE VOICE OF THE SPIRIT GUIDE YOU.
When Words Fade, Humanity Remains: 21 Keys to Supporting a Loved One with Dementia
The balance of the mind can be severely tested by challenges that affect us all, directly or indirectly.
Among these, dementia—whether it arises after a stroke, with aging, or as part of a neurodegenerative disease—holds a unique place. It does not strike only the person afflicted but also those who love them.
For the person affected, the early signs of the disease are often a source of deep suffering: the realization of fading abilities, the anxiety of a world growing increasingly incomprehensible. For loved ones, it is a different battle: that of watching someone dear slip away day by day, while carrying the physical and emotional weight of caregiving.
How can we ease these shared sorrows ?
I discovered a moving text by Sébastien Xhayet, which offers precious guidance. It is not a medical manual, but a human compass : how to behave with someone whose memory falters, whose reality is fragmenting, and who often struggles with quiet anxiety in a world that has grown unfamiliar.
This text is an outstretched hand.
May it bring you clarity, guidance, and perhaps lighten the burden weighing on your heart.
“If one day I am affected by dementia or Alzheimer’s, I wish for my family and loved ones to display this text where I live. May they remember it, absorb its meaning, and refer to it whenever my bearings begin to falter.”
If one day I am affected by dementia:
- Announce your presence gently Each time you enter the room, introduce yourself simply: “Hello, it’s [your first name].” Do not ask me if I know who you are. That kind of question can deeply unsettle me, make me doubt, or plunge me into anxiety.
- Enter my reality If I talk about visiting my parents or waiting for someone who is no longer here, do not correct me. Join me in this reality, even if it is not yours. It may be unclear, but it reassures me.
- Do not challenge what I believe My mind may carry me to uncertain places and times. Opposing me with harsh truths will only add to my confusion. Grant me the right to my own reference points, however discordant they may seem.
- Do not take anything personally If I do not recognize you, it is not rejection. It is my memory betraying me. Even if my words bewilder you, know that my affection remains alive—somewhere within me.
- Help me preserve my personality If I can no longer use cutlery, do not feed me right away. First, try foods I can eat with my fingers. Maybe I can still manage, in my own way.
- Offer me your hand first, not your explanations When I am anxious, sad, or lost, listen without minimizing or rationalizing. Hold my hand. Stay close to me. This gesture speaks louder than a thousand words.
- Speak to me with respect Even if I am ill, I am not a child. Speak to me gently, but without condescension. I remain an adult worthy of attention and consideration.
- Keep alive what I loved Even with dementia, some passions may endure: reading, listening to music, walking, singing… Help me find a path, however fragile, back to these old joys.
- Appeal to my happy memories Ask me to tell you a story, a meaningful memory, or an anecdote. You might be surprised by the precision of my recollections, even if the present escapes me.
- Take the time to understand my agitation If I become restless or agitated, there is a reason. Try to guess what is troubling me: discomfort, pain, or an unexpressed need. Agitation is often a way of saying what I can no longer put into words.
- Treat me as you would want to be treated I am still a whole person. What I am going through could happen to you too. Surround me with the patience, tenderness, and respect you would wish to receive.
- Anticipate my unspoken needs I may be hungry without knowing how to say it. Irritability or anxiety can sometimes be the only signs. Provide snacks. This simple gesture can prevent much distress.
- Do not talk about me as if I were not here Even if I am silent or seem absent, I can still hear you. Speak with me, not about me. My humanity deserves your direct gaze and clear voice.
- Do not carry the burden alone If you cannot assist me every moment, it is not your fault. It is not something you caused. Rest, ask for help, and find a suitable place. You are already doing so much.
- Visit me as often as you can If I live in a care facility, your presence is precious, even if I do not always recognize it. It grounds me, reassures me, and connects me to the world.
- Be gentle with my mistakes I may confuse names, faces, and places. It is not out of carelessness—it is my memory failing. Take a deep breath. Forgive me, silently.
- Let me hear my music The songs I once loved can rekindle a spark. Play them within my reach. They speak to me in a language dementia cannot erase.
- Respect my gestures, even if they seem odd If I pick up objects, move them, or hold them close, do not take them away. Help me replace them without frustrating me. These rituals give me structure.
- Do not keep me from life’s moments I may struggle to keep up, but I can still feel the warmth of a celebration, the joy of laughter, and the comfort of a family meal. Do not exclude me. Include me, differently.
- A simple touch can change everything A tender look, a hand on my shoulder, a sincere smile… These gestures still speak to my heart, even if my words have wandered away.
- Remember who I am Behind the confusion, behind the absences, I am still me. Perhaps slower, more fragile, quieter… but always the person you once knew, and whom you love.
Text by Sébastien Xhayet