Use careArticle link

COVID-19 Care Challenges and Infection Control for People with Dementia

Caring for someone with dementia during a pandemic brings unique hurdles: they may not understand or remember safety measures like handwashing or distancing, and behaviors like wandering can make staying put feel impossible. You are not alone in facing this—many families and care staff have navigated lockdowns, isolation, and the risk of severe illness. The good news is there are concrete, compassionate steps you can take to reduce infection risk while keeping your loved one calm, connected, and safe.

Key points

  • People with dementia often cannot understand or follow standard COVID-19 precautions like handwashing or distancing due to cognitive impairment and behavioral symptoms.
  • Dementia itself is a risk factor for severe COVID-19 outcomes, including hospitalization and death, especially in advanced stages.
  • Lockdowns and isolation can worsen confusion, anxiety, and agitation; maintaining routine and connection is critical.
  • Use visual cues, distraction, and gentle redirection instead of arguing or forcing infection control measures.
  • Monitor daily for infection signs, including behavioral changes, and act quickly if symptoms appear.
  • Caregivers must protect their own health and have a backup plan in case they become ill.

Why Dementia Makes COVID-19 Prevention So Difficult

People with dementia often cannot follow public health recommendations like hand hygiene, social distancing, or staying home. This isn't stubbornness—it's the disease. Their cognitive impairment may prevent them from understanding or remembering the rules, especially in moderate to severe stages. For example, they might forget to wash their hands after touching a surface, or they may not grasp why they can't hug a visitor. Behavioral symptoms like motor agitation, intrusiveness, or wandering can also make self-isolation nearly impossible. A person who paces or tries to leave the house is not being difficult; they are responding to internal restlessness or confusion. This means standard infection control advice—'just stay home and wash your hands'—often fails without major adaptations.

Higher Risk of Severe Illness and Hospitalization

Older adults with dementia are among the most vulnerable groups for severe COVID-19 outcomes. Research shows that people with dementia have a higher risk of COVID-19 infection, hospitalization, and death compared to those without dementia. This is due to a combination of factors: advanced age, underlying health conditions, and the physical toll of dementia itself. Dementia is a progressive, fatal disease—pneumonia (including from COVID-19) is a leading cause of death because the brain can no longer coordinate the muscles needed to clear the lungs. Additionally, infections are a top reason for hospitalization in people with dementia, especially those with severe functional impairment. During a pandemic, this risk multiplies, making infection prevention a life-or-death priority.

The Unique Stress of Lockdowns and Isolation

When care communities go into lockdown or families isolate at home, people with dementia often experience heightened confusion, anxiety, and agitation. They may not understand why familiar faces disappear or why they can't go outside. Staff in nursing homes may have minimal training in compassionate dementia care while also trying to enforce infection protocols. Family caregivers, suddenly cut off from outside help, face burnout as they juggle round-the-clock care with no respite. The loss of routine, social contact, and physical touch can accelerate cognitive decline and worsen behavioral symptoms. This is not just an inconvenience—it is a serious threat to the person's emotional and physical well-being.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Create a simple, visual handwashing routine. Place a step-by-step picture chart near the sink (e.g., '1. Wet hands, 2. Soap, 3. Scrub for 20 seconds, 4. Rinse, 5. Dry'). Use a gentle, fragrance-free soap to avoid sensory overload. Sing a short, familiar song together (like 'Happy Birthday' twice) to time it. If they resist, try a no-rinse hand sanitizer with a pleasant scent, and demonstrate on your own hands first.

  2. Set up a 'safe zone' for social distancing at home. Use a small table or a strip of colored tape on the floor near the entryway to mark where visitors can stand. Keep visits short (5-10 minutes) and outdoors if weather allows. If the person with dementia becomes upset by the distance, have the visitor wave from a window or use a tablet for a video call instead.

  3. Use a 'distraction kit' to reduce wandering during isolation. Prepare a basket with items they enjoy: a familiar photo album, a soft blanket, a simple puzzle, or a favorite music playlist. When they start to pace or head for the door, gently guide them to a comfortable chair and offer the kit. Say, 'Let's look at these pictures together' instead of 'You can't go outside.'

  4. Maintain a consistent daily schedule, even during lockdown. Post a large, written schedule on the wall with pictures (e.g., a toothbrush for brushing teeth, a plate for meals, a bed for nap time). Stick to regular wake-up, meal, and bedtime routines. Predictability reduces anxiety and helps the person feel secure when the outside world feels chaotic.

  5. If the person lives in a care community, establish a regular video or phone call schedule. Use a tablet or smartphone with a large screen and a simple interface (like a single button to answer). Call at the same time each day, and keep calls short (5-10 minutes). Talk about concrete, positive topics: 'I saw a robin in the yard today' or 'Remember when we baked cookies?' Avoid asking 'Do you remember me?' as it can cause distress.

  6. Monitor for early signs of COVID-19 or other infections daily. Check for fever (use a no-touch forehead thermometer), new cough, increased confusion, or a sudden change in behavior (like agitation or lethargy). People with dementia often show infection through behavioral changes before physical symptoms appear. If you notice anything unusual, contact their healthcare provider immediately—do not wait for symptoms to worsen.

  7. If the person is hospitalized for COVID-19, advocate for a 'dementia-friendly' care plan. Ask the hospital staff to allow a designated family member or caregiver to stay (if infection protocols permit) or to schedule regular video calls. Provide a 'This Is Me' sheet with the person's preferences, routines, and calming phrases. Remind staff that the person may not understand why they are there and may need extra reassurance.

What not to do

  • Do not argue or reason with the person about why they must stay home or wear a mask. This often leads to frustration and agitation. Instead, use redirection: offer a preferred activity or say, 'Let's go look at the garden together.'

  • Do not force handwashing or mask-wearing if the person becomes extremely distressed. Forcing can cause a behavioral crisis and increase the risk of injury. Instead, try alternatives like hand sanitizer wipes or a face shield (which may feel less restrictive).

  • Do not isolate the person in a room alone for long periods, even for infection control. This can worsen confusion, depression, and physical decline. Instead, create a safe, supervised space where they can move around while maintaining distance from others.

  • Do not assume the person cannot learn new routines. With repetition and visual cues, many people with early to moderate dementia can adapt to handwashing or using a tissue. Be patient and celebrate small successes.

  • Do not neglect your own health as a caregiver. Burnout and illness in the caregiver directly harm the person with dementia. Take breaks, ask for help, and follow public health guidelines for yourself. You cannot pour from an empty cup.

  • Do not skip medical appointments or vaccinations out of fear of exposure. Telehealth is often available for routine checkups. Ensure the person receives the COVID-19 vaccine and booster as recommended by their clinician—this is the single most effective protection.

Practical tools

  • Visual Handwashing Chart

    Create a laminated, step-by-step picture chart (4-6 simple images) and place it above the sink. Use bright colors and large images. Point to each step as you guide their hands. This reduces confusion and makes the task feel like a game.

  • Distraction Kit for Wandering

    A basket or box filled with calming, engaging items: a stuffed animal, a fidget blanket, a simple jigsaw puzzle (large pieces), a photo album, or a music player with headphones. Keep it in a visible, accessible spot. When the person tries to leave, offer the kit with a warm smile and a simple phrase like, 'Let's sit and listen to some music.'

  • Daily Schedule Board

    Use a whiteboard or poster board to write out the day's activities with simple icons (e.g., a sun for morning, a toothbrush, a plate, a bed). Review it together each morning. This provides structure and reduces anxiety about the unknown.

  • 'This Is Me' Hospital Passport

    A one-page document (available free from many dementia organizations) that lists the person's name, preferred name, routines, favorite foods, calming phrases, and communication tips. Give a copy to any hospital or care facility staff. This helps them provide person-centered care even during a crisis.

  • No-Touch Thermometer

    A forehead thermometer that gives a quick reading without physical contact. Use it daily at the same time (e.g., before breakfast). Explain simply: 'This checks if you're feeling okay.' It is less invasive and easier to tolerate than an oral or ear thermometer.

  • Simple Video Call Setup

    Use a tablet or smartphone with a single-app interface (like 'Senior Mode' or 'Easy Touch'). Pre-program the video call app to auto-answer or have one large button labeled 'Call [Name].' Place the device on a stand so hands are free. This makes virtual visits possible even if the person cannot manage a phone.

Discuss with your clinician

Ask your doctor: 'Given my loved one's dementia stage and other health conditions, what is their specific risk for severe COVID-19? Should they receive the latest vaccine or booster?'

Discuss: 'If my loved one develops COVID-19 symptoms, what is the best way to monitor them at home? When should we go to the hospital?'

Ask: 'Are there any medications (like antipsychotics or sedatives) that could increase their risk of complications from COVID-19 or make infection harder to detect?'

Discuss: 'What is the facility's policy on family visitation during outbreaks? Can I request a designated caregiver exemption to stay with my loved one if they are hospitalized?'

Ask: 'If my loved one is hospitalized with COVID-19, how can we ensure a dementia-friendly environment and avoid delirium? Are there non-drug approaches to manage agitation?'

Related guides

Sources