When the Primary Caregiver Gets Sick: Does Your Family Have a Backup Care Plan?

In many families, one person holds the caregiving routine together.

They know when their loved one wakes up, which breakfast feels familiar, where the medication information is kept and how to make a difficult afternoon more manageable.

Everyone else knows that person is dependable.

But what happens when the dependable person gets sick?

A spouse develops the flu. An adult child needs surgery. A caregiver has an emergency or gets stranded out of town.

Suddenly, the family faces two concerns: helping the caregiver and making sure the person living with dementia receives appropriate care.

For Staten Island families navigating Alzheimer’s or another dementia, a dementia caregiver backup plan begins with one practical question:

“If the primary caregiver couldn’t be here tomorrow, who would step in, and what would they need to know?”

What Is a Dementia Caregiver Backup Plan?

A dementia caregiver backup plan is a written arrangement identifying who can provide care when the primary caregiver becomes unavailable. It should explain the person’s daily routine, assistance needs, current medication information, emergency contacts, relevant authorizations and options for longer coverage.

The plan should be specific enough that another caregiver can use it without repeatedly calling the person who is sick.

It also needs to match the individual. Someone who needs companionship and meal preparation has different needs from someone requiring help with transfers, toileting or continuous supervision.

The goal is to make a handoff safer, calmer and easier to manage.

Why “My Family Will Figure It Out” Leaves Too Much Unanswered

A family may have several relatives willing to help but still have no workable arrangement.

One person assumes a sibling will take time off work. Another believes a neighbor can stay overnight. Someone suggests hiring an aide without knowing whether a provider can accept a new client immediately.

Good intentions become more useful when they turn into clear commitments.

For example, a backup arrangement might say:

“My sister can cover the first four hours. My brother can stay that evening. If coverage is needed beyond tomorrow, our designated family coordinator will contact the providers we have already spoken with.”

That is a proposed arrangement to confirm, rather than an assumption to rely on.

The Alzheimer’s Association recommends preparing for unexpected caregiving needs and trying respite providers before an emergency occurs.

The Backup Caregiver Readiness Checklist

Use these ten questions to identify gaps in your family’s plan. Discuss them with the person living with dementia to the extent they can participate, and involve appropriate professionals when instructions require medical or legal guidance.

1. Who Could Step In Immediately?

Choose a first contact and at least one alternate.

Ask each person directly about availability, travel time and the tasks they can realistically perform.

A relative who lives nearby may be able to arrive quickly but cannot necessarily provide a full day of care. Someone farther away might coordinate appointments, payments or provider calls.

Record each person’s role and contact information.

Also decide who will activate the plan. If the primary caregiver cannot make calls, another person should know how to begin.

2. Who Knows the Daily Routine?

Write down what an ordinary day looks like:

• Usual waking and bedtime.

• Meal and snack times.

• Bathroom reminders and personal care routines.

• Rest periods and preferred activities.

• Evening habits and supervision needs.

Include details that a new caregiver would otherwise have to guess.

“Likes music” is helpful. “Prefers familiar songs at a quiet volume after lunch” is more useful.

Describe how the person prefers to be addressed and how to offer assistance respectfully. Preserve their choices and independence wherever possible.

3. Where Is the Current Medication Information?

Keep one clearly dated medication list in an agreed location.

The Alzheimer’s Association recommends making current medication information, including dosage and frequency, and medical team contacts readily accessible.

Ask the treating clinician or pharmacist what additional information the backup caregiver needs. This may include allergies, storage instructions and whom to contact with medication questions.

Arrange a clear record of doses already given during a handoff.

A written list does not establish that every helper is trained or authorized to administer medication. Confirm responsibilities with the appropriate professional or care provider. Backup caregivers should follow prescribed instructions and seek professional guidance when anything is unclear.

4. Who Are the Doctors and Emergency Contacts?

Create a short contact sheet with:

• Primary care clinician and relevant specialists.

• Pharmacy.

• First backup caregiver and alternate.

• Family coordinator.

• Existing home care agency or other care provider.

• Person authorized to make relevant decisions.

Include names, telephone numbers and after-hours instructions when available.

Ask the healthcare team which changes require a call, urgent evaluation or emergency assistance. Put those personalized instructions where the backup caregiver can find them.

For an immediate medical emergency or immediate danger, call 911.

5. What Foods, Activities or Routines Provide Comfort?

A useful care plan describes the person beyond their diagnosis.

Include familiar meals, favorite music, meaningful interests and reassuring routines.

For example:

“He enjoys looking through family photographs after breakfast.”

“She prefers a quiet room and one person speaking at a time.”

“Offer a choice between two familiar outfits.”

Record dietary restrictions, allergies and any clinician-directed eating or swallowing instructions separately from preferences.

Comfort information should help the backup caregiver get to know the person while respecting the care instructions already in place.

6. What Situations Tend to Cause Anxiety or Agitation?

Document patterns the primary caregiver has observed.

Perhaps rushed personal care is upsetting. Perhaps several visitors speaking at once feels overwhelming. A certain time of day may require more patience or reassurance.

Write down what has helped in the past, using specific examples rather than labels such as “difficult.”

For instance:

“When he asks for his wife, acknowledge that he misses her and offer to sit with him. Ask the primary caregiver or care team which responses work best.”

Ask the healthcare team how to respond to concerning changes. The backup plan should make it easy to seek help rather than assume every change is part of dementia.

7. What Assistance Is Needed With Daily Activities?

Be clear about help needed with bathing, dressing, toileting, eating, walking and getting into or out of bed.

Describe supervision needs as well.

Does the person need someone nearby while walking? Can they safely remain alone? What help is needed overnight?

Review these questions with the care team when there is uncertainty.

A willing helper may need training or additional support to perform certain tasks safely. Identify those limits before assigning responsibility, especially when equipment, transfers or skilled care are involved.

8. Who Has Appropriate Legal Authority?

Providing daily care and making legal decisions are separate responsibilities.

Ask a qualified New York attorney and the healthcare team which documents, permissions and designated decision-makers should be available.

Questions to resolve include:

• Who can make healthcare decisions when legally appropriate?

• Who can manage relevant financial matters?

• What happens if the designated person is unavailable?

• Which providers need copies of documents or information-sharing authorizations?

The Alzheimer’s Association explains that legal documents help clarify decision-making and that requirements vary by state. It also recommends naming successor agents in relevant planning.

Do not assume that being the closest relative or the backup caregiver automatically grants every form of authority.

9. Where Are Important Documents Kept?

Choose a secure, accessible location for the care folder.

It might contain the daily routine, contact sheet, current medication list, relevant document copies, provider information and clinician-approved emergency instructions.

Tell designated helpers where it is and how to access it.

Keep private health and financial information limited to people who need it. Avoid placing sensitive details in public posts or broadly shared messages.

Date the folder and identify who is responsible for updating it. Several conflicting versions can make a handoff harder.

10. What Happens if Care Is Needed Overnight or for Several Days?

Plan beyond the first afternoon.

Who can cover bedtime? Who can respond during the night? What happens if the caregiver is hospitalized for a week?

Possible arrangements include appropriately prepared family members, paid in-home support or temporary residential respite. Adult day programs may help with daytime coverage but do not solve an overnight gap.

The Alzheimer’s Association describes several forms of respite care, including care at home and temporary stays in care communities.

Contact potential providers ahead of time. Ask about dementia experience, assessments, staffing, admission requirements, availability and costs. Treat coverage as confirmed only when the provider has agreed to it.

Put the Plan Into Practice Before You Need It

Once the information is assembled, arrange a brief practice handoff.

Have the backup caregiver spend time with your loved one while the primary caregiver is available to explain the routine.

Then review what was missing.

Could the helper find the contact sheet? Were instructions clear? Did a task require training? Was the coverage period realistic?

A short practice visit can reveal details that a written checklist misses.

Revisit the plan after medication changes, changes in care needs, a move or a change in helper availability. Set a regular reminder to check telephone numbers and commitments.

Where Staten Island Families Can Begin

Start with the person’s healthcare team. Ask whether a social worker or care coordinator can help assess backup needs and identify suitable services.

For dementia information and help finding resources, families can contact the Alzheimer’s Association’s free 24/7 Helpline at 800-272-3900.

When evaluating local support, be precise:

“We need someone who can assist with these tasks, during these hours, including this overnight need.”

Ask who covers a worker’s absence, how quickly services can begin and which responsibilities the service can accept.

A resource referral is a starting point. Your family still needs to confirm that the arrangement fits the person’s needs.

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Frequently Asked Questions

What happens if a dementia caregiver gets sick?

The family should activate its agreed backup arrangement and maintain the person’s required care and supervision. If no arrangement exists, contact trusted helpers, the healthcare team and suitable care providers to establish coverage. Use emergency services for immediate medical emergencies or danger.

Should Alzheimer’s families have a backup caregiver?

Yes. Families should identify willing, capable backup support before the primary caregiver becomes unavailable. Confirm what each helper can do and arrange professional assistance for needs beyond their abilities.

What information should a backup dementia caregiver have?

Provide the daily routine, assistance and supervision needs, current medication information, allergies, medical contacts, emergency instructions, comfort preferences, relevant authorizations and document locations.

How do you create an emergency care plan for someone with dementia?

Identify the person’s needs, confirm backup helpers, write clear instructions, review medical and legal questions with appropriate professionals, arrange longer coverage and practice the handoff.

Who can care for someone with Alzheimer’s if the primary caregiver is unavailable?

Depending on care needs, options may include prepared relatives or friends, qualified in-home providers, adult day services or residential respite providers. Availability, training, costs and suitability need to be checked in advance.

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One Conversation to Have This Week

As someone who cared for my mother for seven years, I understand how much of caregiving can live in one person’s memory.

Writing down that knowledge and sharing responsibility is a practical way to support both the caregiver and the person receiving care.

If one person currently carries most of the caregiving responsibility in your family, ask:

“What would happen if they couldn’t be there tomorrow?”

You don’t need to expect an emergency to prepare for one. Creating a backup plan now can make an already difficult day a little less overwhelming.

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About the Author

Hal Blake is the Broker/Owner of Your Home Sold Guaranteed Realty Advisors LLC on Staten Island. Having cared for his mother for seven years before her passing in June 2021, Hal understands the personal challenges families face when caring for someone living with Alzheimer’s.

Through the company’s Worthy Cause series, he shares resources to support caregivers and raise awareness. Hal and his team support the Walk to End Alzheimer’s and donate a portion of every commission to the cause.