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Care Home Living as a COVID-19 Risk Factor in Dementia

If your loved one with dementia lives in a care home, you may worry that the setting itself puts them at higher risk for COVID-19. Research shows that people with dementia in nursing homes do face a higher infection rate — about 9% higher in one Swedish study — and that dementia itself is a powerful risk factor for severe illness and death, regardless of where a person lives. The good news is that understanding why this happens gives you concrete steps to reduce risk, from working with staff on infection control to monitoring for early signs of delirium. You are not powerless; this article walks you through what to watch for, what to say, and how to advocate effectively.

Key points

  • People with dementia in care homes have a higher risk of COVID-19 infection, but dementia itself — not just the setting — is the main driver of severe illness and death.
  • The death rate from COVID-19 is nearly identical for people with dementia living at home (31.4%) and in nursing homes (32.5%), showing that dementia is the common risk factor.
  • Delirium is a major danger: COVID-19 patients with delirium have a 44% mortality risk, triple that of patients without delirium. Sudden confusion is a red flag, not just 'dementia getting worse.'
  • You can reduce risk by staying in daily contact with the care home, asking specific questions about infection control, and advocating for a written care plan that includes hand hygiene, isolation, and delirium prevention.
  • Vaccination is a key protection. Discuss with the care home's doctor whether your loved one should receive the COVID-19 vaccine and boosters.
  • If you are considering a care home placement, ask about infection control track record, staffing levels, and state inspection reports before making a decision.

Why care homes amplify COVID-19 risk for people with dementia

Care homes are communal living environments where residents share dining rooms, common areas, and sometimes even bathrooms. This close contact makes it easier for viruses like COVID-19 to spread. For a person with dementia, the risk is compounded because they may not be able to follow infection-prevention steps on their own — they might forget to wash their hands, pull off a mask, or wander into another resident's room. As Teepa Snow, a dementia care expert, points out, 'If you can't do it with a toddler, and you can't do it with a grade-school child, and you're having trouble with a teenager, and I have somebody whose brain is dying, more than likely they will not be able to follow the guidelines on their own.' This means the burden of protection falls heavily on staff and family visitors.

The role of dementia itself, not just the setting

It is crucial to understand that dementia is an independent risk factor for severe COVID-19, separate from living in a care home. One study found that the death rate for people with dementia living at home was 31.4%, while for those in nursing homes it was 32.5% — a nearly identical figure. This suggests that the common factor driving COVID-19 deaths is dementia itself, not just the care home environment. People with dementia often have other chronic conditions like heart disease or diabetes, and their immune systems may be weaker due to age and stress. Additionally, dementia can affect the brain's ability to regulate breathing and clear the lungs, making pneumonia — including viral pneumonia from COVID-19 — a leading cause of death in this population.

Delirium: a hidden danger that increases risk

When a person with dementia gets COVID-19, they are at very high risk for developing delirium — a sudden, severe confusion that can look like a worsening of their dementia. Delirium is not just a temporary confusion; it is a medical emergency. Studies show that COVID-19 patients with delirium have a mortality risk of about 44%, which is triple that of patients without delirium. Delirium can be triggered by the infection itself, by dehydration, by medications, or by the stress of being isolated in a care home. It is often missed because staff may assume the confusion is just the person's dementia getting worse. As a family caregiver, you are the expert on your loved one's baseline behavior — if you notice a sudden change, you must speak up immediately.

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

Step-by-step

  1. Call the care home's director of nursing or infection control officer. Ask directly: 'What is your current COVID-19 infection rate among residents? What steps are you taking to prevent spread, such as testing staff, isolating symptomatic residents, and improving ventilation?' Write down the date and the person's name. If they are evasive, escalate to the facility's administrator or the local long-term care ombudsman.

  2. Request a written care plan that includes infection prevention for your loved one. Ask for specific actions: 'Please ensure my mother's hands are washed or sanitized before meals and after using the bathroom. If she cannot do this herself, please assist her. Also, please keep her at least six feet away from other residents during communal activities.' Have the plan signed by the nursing director and keep a copy.

  3. Monitor your loved one for early signs of COVID-19 or delirium every day, even if you cannot visit in person. Ask a staff member to check for: a temperature over 100.4°F, new cough, shortness of breath, confusion that is worse than usual, or sudden agitation. If you notice any of these, ask for a COVID-19 test immediately. Do not wait for symptoms to worsen.

  4. If your loved one tests positive for COVID-19, ask the care home for a daily update on their oxygen levels, temperature, and mental status. Request that they be placed in a private room if possible, and that staff use full personal protective equipment (PPE) when entering. Ask if they can have a phone or tablet call with you each day to help reduce isolation and confusion.

  5. Work with the care home to create a 'delirium prevention' plan. This includes: keeping the room well-lit during the day, having familiar objects and photos visible, maintaining a consistent routine for meals and sleep, and using a clock and calendar to help with orientation. If your loved one becomes delirious, ask the doctor to review all medications — some can worsen confusion.

  6. Advocate for your loved one to receive the COVID-19 vaccine and any recommended boosters. Discuss with the care home's medical director whether the vaccine is appropriate given your loved one's health conditions. The Mayo Clinic notes that advanced age and underlying conditions raise the risk of serious COVID-19, and vaccination is a key protection.

  7. If you are considering moving your loved one into a care home, ask about the facility's track record with infection control. Request to see their most recent state inspection report. Look for citations related to infection prevention, staffing levels, and resident safety. If you have concerns, consider delaying the move or exploring home care options with supports like adult day programs or in-home aides.

What not to do

  • Do not assume that because your loved one lives in a care home, they are automatically safe. Some families believe that staff will handle everything, but infection control requires active family involvement. Instead, stay in regular contact with the care team and ask specific questions about prevention measures.

  • Do not dismiss sudden confusion as 'just the dementia getting worse.' Delirium from COVID-19 can be mistaken for dementia progression, but it is a medical emergency. If your loved one has a sudden change in alertness, attention, or behavior, ask for a medical evaluation and a COVID-19 test right away.

  • Do not rely solely on the care home to monitor your loved one's symptoms. Staff may be overworked or may not know your loved one's baseline as well as you do. Call or video chat daily to check on their mood, energy, and clarity. If something seems off, trust your gut and push for answers.

  • Do not skip the COVID-19 vaccine or boosters because of concerns about side effects. The risk of severe illness and death from COVID-19 far outweighs the risk of vaccine side effects, especially for someone with dementia. Discuss any concerns with the care home's doctor, but do not let fear prevent a potentially life-saving measure.

  • Do not try to manage COVID-19 at home if your loved one lives in a care home and becomes infected. Care homes have protocols for isolation and medical monitoring that are difficult to replicate at home. If the facility recommends transferring your loved one to a hospital for oxygen or other care, agree to it unless you have a clear plan with their doctor.

Practical tools

  • The 'Daily Check-In' Script

    When you call the care home, say: 'Hi, this is [your name], [your loved one's name]'s family caregiver. I'm calling for a quick update. Can you tell me: 1) Has [loved one's name] had any fever, cough, or trouble breathing today? 2) Have they seemed more confused or agitated than usual? 3) Have they been eating and drinking normally? 4) Is there any COVID-19 in the facility right now? Thank you for taking such good care of them.' Write down the answers and the staff member's name.

  • The 'Delirium Alert' Checklist

    Print this list and give it to the care home staff: 'Please call me immediately if [loved one's name] shows any of these signs: 1) Sudden confusion or trouble paying attention. 2) Seeing or hearing things that aren't there. 3) Being very sleepy or hard to wake up. 4) Being unusually agitated or restless. 5) Slurred speech or trouble finding words. These could be signs of delirium from an infection like COVID-19.' Keep a copy by your phone.

  • The 'Infection Control' Conversation Starter

    When you meet with the care home administrator, say: 'I know you are doing your best to keep residents safe. I would like to understand your current infection control plan. Specifically: 1) How often are staff tested for COVID-19? 2) What is your policy for isolating a resident who tests positive? 3) How do you ensure residents with dementia can follow hand hygiene? 4) What is the ventilation like in common areas? I want to partner with you to keep my loved one safe.'

  • The 'What to Watch For' Card

    Create a small card to keep in your wallet or on your phone: 'COVID-19 signs in dementia: 1) Fever (temp over 100.4°F). 2) New or worsening cough. 3) Shortness of breath. 4) Sudden confusion or agitation. 5) Sleeping much more than usual. 6) Loss of appetite. If any of these appear, ask for a COVID-19 test and a medical evaluation. Do not wait.'

  • The 'Family Advocate' Log

    Keep a notebook or digital document with the date and time of every call or visit to the care home. Note the staff member's name, what you asked, and what they said. If you ever need to file a complaint with the state or escalate a concern, this log will be your evidence. Example entry: 'Jan 15, 10am - Spoke with Nurse Jones. Mom's temp is 99.2, no cough. She seems more confused today. Nurse said they will monitor and call if anything changes.'

Discuss with your clinician

Ask your loved one's doctor: 'Given my loved one's dementia and other health conditions, what is their individual risk of severe COVID-19? Should they receive the COVID-19 vaccine and booster, and are there any contraindications?'

Ask the care home's medical director: 'If my loved one gets COVID-19, what is the protocol for deciding whether to treat them in the facility or transfer them to a hospital? What medications or oxygen support are available here?'

Ask the neurologist or geriatrician: 'Could any of my loved one's current medications increase their risk of delirium or worsen COVID-19 outcomes? Should we adjust any medications proactively?'

Ask the care home's infection control nurse: 'What is the facility's policy on testing asymptomatic residents? How often are staff tested? What is the protocol for notifying families of an outbreak?'

Ask your loved one's primary care provider: 'If my loved one develops delirium from COVID-19, what treatments are available? How can we prevent delirium in the first place?'

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