What are 7 things I should avoid saying to someone with dementia?

Avoid saying phrases that test memory, correct false realities, or express frustration when speaking with someone who has dementia.

7 Phrases to Avoid

• 1. "Do you remember when...?"
  This can feel like a stressful test or highlight memory loss. (Instead, say: "I remember when...")
• 2. "Do you recognize me?" or "Who am I?"
  This causes anxiety or guilt if they cannot recall. (Instead, offer a warm greeting and gently state your name or relationship).
• 3. "Your [family member] died [years ago]."
  Reminding them of a bereavement can cause fresh, painful grief as if hearing the news for the first time. (Instead, comfort them or gently redirect the conversation).
• 4. "You're wrong" or "That's not what happened."
  Correcting factual errors causes agitation, embarrassment, or defensiveness. (Instead, validate the underlying emotion and change the subject).
• 5. "I already told you that."
  Pointing out repetition or forgetfulness makes the person feel ashamed or frustrated. (Instead, answer the repeated question patiently as if it is the first time).
• 6. "You're not making any sense."
  This dismisses their attempt to communicate and increases their distress. (Instead, focus on the emotion behind their words and respond with empathy).
• 7. "Why are you doing/acting like that?"
  Dementia impairs logical reasoning, so asking "why" only increases their frustration when they cannot explain. (Instead, look for physical comfort needs like pain, hunger, or fatigue).

Dementia patients often get scared at night due to a common phenomenon called sundowning, which causes increased confusion, anxiety, and restlessness as daylight fades.

Why Nighttime Fear Happens

• Disrupted internal clock: Damage to the brain changes the body's 24-hour biological clock, mixing up signals for sleep and wakefulness.
• Shadows and low light: Fading evening light creates long shadows that aging or damaged eyes misinterpret, which can trigger a sudden fear response.
• Extreme exhaustion: Physical and mental fatigue from the day depletes the brain's ability to cope with stress by evening.
• Unmet physical needs: Hunger, thirst, pain, or the need to use the bathroom can cause distress that the person cannot easily communicate.
• Disorientation in time and place: Darkness and quiet surroundings can make patients feel like they are in the wrong place or need to "go home" or "go to work," even if they are already safe.

How to Help

• Turn on lights early: Keep rooms well-lit in the late afternoon to reduce confusing shadows.
• Close the curtains: Draw the blinds before sunset to block out the fading light and transition of day into night.
• Stick to a routine: Keep wake times, meals, and bedtime consistent every day.
• Stay calm and reassure: Approach the person quietly, speak in a soft voice, and offer gentle physical comfort without arguing about reality.

You can find more detailed advice on managing these behaviors through the Alzheimer's Society or the Alzheimer's Association.

Good daily activities for people with dementia focus on bringing a sense of purpose, joy, and comfort while matching the person's current abilities.

Music and Movement

• Listening to music: Play favorite songs or familiar tunes from the person's youth to lift their mood and spark happy memories.
• Singing along: Join in with classic choruses or hymns, which can encourage communication and reduce stress.
• Gentle dancing: Sway or clap to the rhythm, or do chair-based movements to stay physically active.

Practical and Household Tasks

• Folding laundry: Match socks or fold clean towels and washcloths to encourage a feeling of productivity.
• Preparing food: Wash vegetables, stir ingredients, or set the dining table for a shared meal.
• Simple tidying: Wipe down counters or put away plastic containers.

Creative and Cognitive Engagement

• Looking at photo albums: Browse through old pictures together and let your loved one lead the storytelling.
• Working on puzzles: Choose large-piece jigsaw puzzles or simple word games.
• Painting or crafting: Use large brushes and simple materials, focusing entirely on the process rather than the final product.

Outdoor and Sensory Time

• Gardening: Water plants, pull a few weeds, or pot flowers in a safe outdoor space.
• Going for walks: Take a short, predictable route at the same time each day for fresh air and gentle exercise.
• Pet therapy: Spend time with a calm, friendly dog or cat to provide comfort and reduce anxiety.

To keep a person with dementia from wandering or leaving the house safely, you can secure doors, remove visual triggers, and manage daily routines.

Modify Doors and Exits

• Install out-of-sight locks: Place a secondary deadbolt or slide bolt high up on the door (above eye level) or low down near the floor (below knee height) where the person is less likely to see or reach it.
• Use doorknob covers: Put loose-fitting, childproof doorknob covers on exit doors so the knob spins without opening the latch.
• Disguise the door: Hang a curtain over the door or paint the door and frame the same color as the wall to make it blend in visually.
• Use visual deterrents: Place a dark-colored mat or a large "STOP" sign on the floor or directly on the door.
• Set up chimes and alarms: Install electronic door sensors or smart doorbells that sound a chime inside the house the moment a door is opened.

Hide Triggers and Cues

• Remove departure items: Keep coats, hats, shoes, pocketbooks, wallets, house keys, and car keys completely out of sight and away from entryways.
• Reduce anxiety triggers: When a person tries to leave because they say they want to "go home," they are usually looking for comfort or safety. Validate their feelings, offer reassurance, and distract them with a snack, a drink, or a familiar activity rather than arguing.

Plan for Safety

• Never leave them locked alone: Do not lock a person inside the house or yard completely unattended in case of a fire or medical emergency.
• Use tracking technology: Consider wearable GPS trackers, smartwatches, or shoe inserts if wandering remains a risk.
• Prepare an emergency plan: Keep a recent close-up photo of the person ready, notify trusted neighbors, and register with local safety programs or the Alzheimer's Association.

The average life expectancy after a diagnosis of early-onset dementia (onset before age 65) is approximately 8.5 to 10 years, though survival times vary based on the specific disease subtype.

Survival by Subtype

• Early-Onset Alzheimer's Disease: Averages about 9.9 years after diagnosis.
• Frontotemporal Dementia (FTD): Averages about 6.9 years after diagnosis.
• Alpha-Synucleinopathies (including Lewy body dementia): Averages about 7 years after diagnosis.

Key Influencing Factors

• Age and Overall Health: Younger individuals often have better baseline physical health at the time of onset, which can support longer survival compared to late-onset diagnoses.
• Comorbidities: Additional health conditions or co-occurring diseases can shorten overall life expectancy.
• Sex: Studies indicate biological sex and specific underlying pathology alter individual trajectories.

You can learn more about general estimates and prognosis tracking via resources like the Alzheimer's Society or specialized tools like a Dementia Care Central Life Expectancy Calculator.