61 Unspoken Truths About Alzheimer's

Alzheimer’s disease casts a long shadow, altering not just the memory but also the very essence of relationships, families, and communities. Amid memory lapses, disorientation, and the myriad changes Alzheimer’s brings, it’s easy to lose sight of the person at the heart of it all. It could be your mother who can’t remember a cherished family story, your spouse who struggles with tasks once second nature, or your lifelong friend who suddenly can’t recognize you. It’s a heartbreaking and disorienting journey for those diagnosed and those who love them.

Yet within this challenging landscape, the core essence of the individual — their needs, emotions, and fundamental humanity — remains. Through the lens of those living with Alzheimer’s, this list invites you to walk a mile in their shoes.

About the Disease

1. I’m still here: Alzheimer’s affects my memory and cognition, but I’m still the person I’ve always been.
2. It’s not contagious: Alzheimer’s is a disease, not something you can “catch” from me.
3. Progression varies: The disease progresses differently for everyone; I may not exhibit all the typical symptoms or in the expected order.
4. It’s more than forgetfulness: Memory loss is the most talked-about symptom, but Alzheimer’s also affects thinking, reasoning, and emotional control.
5. Early signs may be subtle: Sometimes, the symptoms aren’t dramatic memory lapses but subtle changes in behavior, mood, or cognitive abilities.
6. Sensory changes: My senses, like taste, smell, and hearing, could change, affecting my perception of the world.
7. Complex triggers: My reactions or episodes may be triggered by complex stimuli, like loud noises or crowded spaces.
8. Not just an “old person’s” disease: Alzheimer’s can affect younger people too, known as early-onset Alzheimer’s.

Emotional Experience

1. Frustration is common: I may become frustrated easily, but it is the disease — not you or me — causing this.
2. Isolation hurts: I may seem distant, but deep down I don’t want to be isolated from loved ones or social activities.
3. I can feel: I still have emotional needs and can feel joy, sorrow, love, and fear.
4. Dignity matters: Treat me with the respect and dignity I deserve as a human being despite my illness.
5. Empathy over sympathy: Rather than feeling sorry for me, try to understand my experience and emotional needs.
6. Outbursts aren’t personal: If I become angry or emotional, understand that it’s the disease affecting my behavior.
7. Laughter is healing: Humor and laughter can bring me joy and relaxation.
8. I may grieve: I may go through a grieving process as I become aware of my declining abilities.
9. Stigma hurts: The societal stigma around Alzheimer’s can be emotionally damaging.
10. Music and emotion: Music can often reach me emotionally, even when words fail.

Communication

1. I’m not invisible: Even if I don’t remember you, or can’t articulate it, your presence matters to me.
2. Don’t dismiss me: Just because I may not understand everything doesn’t mean I don’t have feelings or preferences.
3. Include me in conversations: Even if I can’t fully participate, being included makes me feel valued and respected.
4. Eye contact matters: Simple acts like making eye contact can make me feel seen and connected.
5. Don’t talk over me: If I’m struggling to communicate, give me time to express myself rather than speaking for me.
6. Every gesture counts: Small acts of kindness, like holding my hand or a gentle touch, remind me that I’m not alone.
7. Speak directly to me: Even if I can’t reply, speaking to me directly rather than through someone else honors my dignity.
8. Listen with your heart: Even when words fail me, you can still communicate with me through gestures, expressions, and even just by sitting with me.
9. See my struggles, but also my strengths: Acknowledge the difficulties I face and recognize the strength it takes for me to go through each day.
10. Speak clearly: Use simple sentences and direct language to make it easier for me to understand you.
11. Be patient: Give me time to respond, and try to maintain eye contact to help keep my focus.
12. Nonverbal cues matter: Sometimes, what you don’t say speaks volumes; your facial expressions and body language help me understand.
13. Repetition helps: Repeating key points can aid in understanding and retention.
14. Reality is relative: I may experience reality differently due to the disease; correcting me isn’t always helpful and can be frustrating for both of us.
15. My reality is valid: If I perceive things differently or remember events that didn’t occur, understand that this is my reality and it’s very real to me.
16. One-on-one works best: I may find communicating one-on-one rather than in a group easier.
17. Visual aids: Pictures or other visual aids might help me understand and communicate better.

Daily Life

1. Routine helps: Familiarity and structure can help me feel comfortable and less anxious.
2. Help me stay active: Physical and mental activities are good for my overall well-being, even if they need to be modified.
3. Involve me: Don’t make all my decisions. Include me as much as possible.
4. I can still enjoy things: I can still enjoy activities, even if they’re simplified or modified to suit my capabilities.
5. Familiarity is comforting: Familiar places, faces, and activities can offer a comforting sense of normalcy.
6. Simple choices: Offering me simple choices empowers me but avoids overwhelming me.
7. Adaptable activities: Activities I used to enjoy can often be adapted to my current abilities.
8. Timing matters: I may have “better” times of the day when I am more alert and engaged.
9. Watch for signs: If I’m restless or agitated, it might indicate an unmet need.

Care and Support

1. Small tasks are big: I might struggle with everyday tasks; offering specific help is often more helpful than saying, “Let me know if you need anything.”
2. Respect my independence: Let me do as much as possible for myself, even if it takes longer.
3. Safe environment: My safety is crucial — remove hazards and provide clear paths to navigate in my living space.
4. Nutrition matters: Eating a balanced diet can positively impact my overall well-being.
5. Plan for the future: Discussing end-of-life care and financial plans sooner rather than later is better.
6. Respite for caregivers: My caregivers also need time to recharge; their well-being affects my care.
7. Personal space: Even though I need assistance, I still value my personal space and privacy.
8. Validate feelings: Instead of dismissing my emotions, validate them. Validation can bring comfort.
9. Travel precautions: If traveling or changing settings, prepare in a way that minimizes my discomfort and confusion.
10. Respite for caregivers: My caregivers also need time to recharge; their well-being affects my care.

Medical Care

1. Best treatment for me: Alzheimer’s affects people differently, so what works for one patient may not work for me.
2. Medication side effects: Medications can have side effects that may affect my behavior or interactions.
3. Pain is possible: If I’m acting differently, consider that I might be experiencing pain but can’t communicate it effectively.
4. Consistency in healthcare: A consistent healthcare team can provide stability and better quality of care.
5. Holistic approaches: Complementary therapies like music, art, or pet therapy can be beneficial.
6. End-of-life wishes: Discuss my end-of-life care wishes early while I can still make decisions for myself.

Respect and Human Dignity

1. See me, not just my disease: Always remember that I am more than my diagnosis. I have a lifetime of experiences, relationships, and memories. Even as I face the challenges of Alzheimer’s, my need for human connection, respect, and dignity remains. Treating me with the full respect that any human deserves can make all the difference in my quality of life.

The names and faces may differ, but the emotional and physical challenges of living with Alzheimer’s often bear striking similarities. When the diagnosis comes, it’s usually followed by a storm of confusion, not just for the individual affected but also for the loved ones watching the person they know begin to change. This isn’t just about symptoms and medical jargon. It’s about Mom forgetting her famous recipe, Dad getting lost on his way home, or a partner not recognizing the love story you’ve built over decades. This list is more than just information — it’s a roadmap of needs, desires, and unspoken feelings. It’s a call to keep love, patience, and understanding at the forefront. Because at the end of the day, what makes the experience bearable for everyone involved is the human connection that persists even when memories fade.