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COVID-19 Mortality in Care Homes: What Alzheimer’s and FTD Families Need to Know

During the pandemic, people living with dementia in care homes faced a starkly higher risk of dying from COVID-19—about two to three times higher than residents without dementia. This wasn’t just about age or other health conditions; dementia itself made the infection more dangerous. If you’re a family caregiver, understanding why this happened and what you can do now—whether your loved one is still in a care home or you’re considering placement—can help you advocate for safer care and reduce future risks. There are concrete steps you can take, from infection control conversations to delirium prevention, that make a real difference.

Key points

  • People with dementia in care homes had a COVID-19 death rate 2–3 times higher than residents without dementia, even after adjusting for age and other health conditions.
  • Delirium is a common and deadly complication of COVID-19 in dementia—tripling the risk of death. Early detection and prevention are critical.
  • FTD patients, though younger, face similar mortality risks to Alzheimer’s patients. Do not assume youth equals safety.
  • The location (care home vs. home) matters less than the quality of infection control and care. Both settings saw high death rates for people with dementia.
  • Advocate daily: monitor for subtle changes, ask for testing, and ensure the care home has a clear infection control and delirium prevention plan.
  • Advance care planning is essential—discuss hospitalization wishes and document them before a crisis occurs.

Why Dementia Raised the COVID-19 Death Rate in Care Homes

Research from early in the pandemic showed that people with dementia living in nursing homes had a COVID-19 mortality rate of about 6.23 per 1,000 person-months, compared to 2.55 per 1,000 for residents without dementia—a more than double risk. This wasn’t simply because people with dementia were older or had more chronic conditions; studies found that dementia was an independent risk factor for severe illness and death, even after accounting for age and other health problems. For Alzheimer’s disease specifically, one study of 204 patients found that 41.9% of those who caught COVID-19 died, and those with Alzheimer’s were older (average age 80) than those with frontotemporal dementia (average age 72). The combination of cognitive impairment, difficulty following safety measures like masking or distancing, and a higher likelihood of underlying health issues all contributed to this vulnerability.

The Role of Delirium and Rapid Decline

One of the most dangerous aspects of COVID-19 in people with dementia is the high risk of delirium—a sudden, severe confusion that can be the first sign of infection. Studies show that COVID-19 patients with delirium have a mortality rate of about 44%, triple that of patients without delirium. For someone with dementia, delirium can be harder to spot because it may look like a worsening of their usual confusion, but it signals a serious medical crisis. Additionally, prolonged illness or isolation during COVID-19 often led to rapid deconditioning—muscle loss from lying in bed or sitting for long periods—which further weakened residents and increased their risk of falls, pressure sores, and death. This is why early detection and aggressive support are critical.

FTD vs. Alzheimer’s: Different Ages, Similar Risks

Frontotemporal dementia typically affects people at a younger age (45–65) than Alzheimer’s, which is more common in those over 65. In the study that compared the two, FTD patients were younger (average 72) and had fewer other health conditions, yet they still faced a high death rate from COVID-19—about 41.9% of those infected died. This shows that dementia itself, not just old age, drives the risk. For FTD families, this is especially alarming because younger residents may be overlooked as ‘low risk’ by care home staff, but they need the same vigilant protection. The behavioral symptoms of FTD—like impulsivity, poor judgment, or resistance to care—can also make infection control harder, as residents may not cooperate with masking or hand hygiene.

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

Step-by-step

  1. Ask the care home for their current infection control plan. Request a written summary of how they prevent and respond to respiratory outbreaks, including COVID-19, flu, and RSV. Specifically ask: ‘How do you isolate residents who test positive? How do you ensure staff are tested and masked? What is your protocol for notifying families of an outbreak?’ Keep a copy in your loved one’s file.

  2. Monitor your loved one daily for subtle changes that could signal infection or delirium. Use a simple checklist: Are they eating less? Sleeping more? More confused than usual? Agitated or withdrawn? Any of these can be early signs of COVID-19, even without a fever or cough. Report any change immediately to the nursing staff and ask for a COVID-19 test.

  3. Ensure your loved one is up to date on COVID-19 vaccinations and boosters. Talk to their doctor about the timing, as people with dementia may have weaker immune responses. The care home should have a record of vaccinations; confirm this and ask if they offer on-site shots.

  4. Advocate for delirium prevention strategies. Ask the care home to: keep your loved one’s room well-lit during the day, encourage them to get out of bed or sit in a chair, provide hearing aids and glasses if they use them, and avoid sedating medications unless absolutely necessary. Delirium is a medical emergency—if it occurs, the home should contact a doctor immediately.

  5. If your loved one lives in a memory care unit, ask about cohorting policies. During outbreaks, homes may group COVID-positive residents together. Ensure that staff caring for the positive group do not also care for the negative group, and that there is adequate staffing to prevent neglect.

  6. Prepare a ‘go bag’ for a potential hospital transfer. Include: a list of medications, a copy of their advance directive, a change of clothes, glasses, hearing aids, and a comfort item like a favorite blanket. Discuss with the care home’s social worker what hospital they would be taken to and whether that hospital has experience with dementia patients.

  7. If you are considering a care home placement, ask about their COVID-19 mortality rate during the pandemic. While this may not be publicly available, you can ask: ‘How many residents died of COVID-19 in 2020–2022? What changes have you made since then to improve safety?’ Compare this with other homes you tour.

  8. For FTD specifically, ask the care home staff if they have training in managing behavioral symptoms during isolation. Residents with FTD may become agitated if confined to their room; ask how they would handle this without using restraints or excessive sedation. Request a meeting with the director of nursing to discuss your loved one’s specific needs.

What not to do

  • Don’t assume that because your loved one is younger (with FTD) they are safe. FTD patients have a similar COVID-19 death rate to older Alzheimer’s patients. Instead, insist on the same protective measures as for any high-risk resident.

  • Don’t wait for a fever or cough to suspect COVID-19. Many older adults with dementia present with ‘atypical’ symptoms like confusion, falls, or loss of appetite. If you notice any change, ask for a test immediately.

  • Don’t rely solely on the care home’s assurances without checking in person or via video call. If possible, visit (following their safety rules) or ask for a video call to see your loved one’s condition. Isolation can hide neglect or rapid decline.

  • Don’t skip discussing advance care planning. COVID-19 can lead to rapid decisions about hospitalization, intubation, or comfort care. Have a conversation with your loved one (if they can participate) and their doctor about their wishes. Document these in a living will or POLST form.

  • Don’t assume that a home care setting is always safer. One study found that people with dementia living at home had a similar death rate (31.4%) to those in nursing homes (32.5%) when they got COVID-19. The key is the quality of care and infection control, not just the location.

Practical tools

  • Daily Check-In Script for Care Home Staff

    Call the care home each morning and say: ‘I’m checking on [name]. Have they eaten breakfast? Have they had any change in alertness or behavior? Is there any sign of infection? Please test them if anything seems off.’ This keeps you informed and signals that you are an engaged advocate.

  • Delirium Prevention Checklist (for care home staff or family visitors)

    Print this list and give it to the charge nurse: 1) Keep room lit during day, dim at night. 2) Encourage sitting up or walking with assistance. 3) Provide glasses and hearing aids. 4) Avoid sleeping pills or sedatives unless prescribed. 5) Offer fluids and snacks frequently. 6) Reorient the resident with a clock, calendar, and familiar photos.

  • Advance Directive Wallet Card

    Create a small card that states: ‘I have dementia. If I become seriously ill with COVID-19, my healthcare proxy is [name and phone]. My wishes are: [choose one: full treatment, limited treatment, comfort care only].’ Keep a copy in your loved one’s room and give one to the care home director.

  • Infection Control Questions for Care Home Tours

    When touring a facility, ask: ‘What is your staff vaccination rate? How do you isolate a resident with COVID-19? Do you have a dedicated wing for positive cases? How do you notify families? What is your policy for cohorting staff?’ Write down the answers and compare across homes.

  • Emergency Contact List for Hospital Transfer

    Create a one-page document with: resident’s name, date of birth, dementia type (Alzheimer’s or FTD), medications, allergies, primary doctor’s name and phone, healthcare proxy’s name and phone, and advance directive summary. Laminate it and keep it in the ‘go bag’.

Discuss with your clinician

Ask your loved one’s doctor: ‘Given their dementia, should they receive the latest COVID-19 booster? Are there any contraindications with their current medications?’

Discuss: ‘If they get COVID-19, what are the criteria for hospitalization vs. staying in the care home? What would be the risks of each?’

Ask: ‘Are there any medications (like anticoagulants or steroids) that might be appropriate if they become infected, and what are the side effects?’

Inquire: ‘How can we monitor for delirium at home or in the care home? What signs should I look for that warrant a call to you?’

If your loved one has FTD, ask: ‘Are there any specific considerations for COVID-19 treatment given their younger age and potential for behavioral issues?’

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