Supporting a parent with dementia from far away

On the phone, you can’t see the fridge, the mail or how they look. That is why the Alzheimer’s Association suggests looking again at their needs every time you visit, and keeping in touch with the people who see them often.

When you can’t see for yourself, your mind may jump to the worst. A regular call time, a local point person and a written emergency plan can turn some of that worry into action.

Distance carers often juggle jobs, children and travel costs alongside caring. Being honest about what you can and can’t offer helps everyone plan.

By the middle stage of Alzheimer’s, a person typically needs supervision around the clock. Your role from afar will shift as their needs change, so it helps to look again at the plan regularly.

Phone and video calls give companionship. A set time to talk, written on a calendar or whiteboard, gives them something to look forward to.

Photos, postcards, letters and small parcels show you are thinking of them, too.

Many long-distance carers become information coordinators, working through home care, insurance and benefits. Learning about their condition helps you understand their needs now and plan for later.

From a distance you can help with bills, benefits and utility accounts, book appointments, set up grocery deliveries and arrange transport to medical visits.

If possible, one person should handle conversations with all of their health care providers, so messages don’t get mixed up.

If a parent, sibling or friend gives daily care, you can offer emotional support by phone, video, email or letter. You can help arrange respite or day programs, or visit so they can have real time off.

Tips

• Ask about feelings, and say back what you hear
• Choose a quiet time, without TV or radio in the background
• Give them extra time to answer, and allow pauses
• Speak slowly and clearly, in short sentences
• Use questions with simple answers rather than wide, open ones

Phone calls may suit the earlier stages best. Because you can’t see their face, listen closely to what they say and how they say it.

Tips

• Don’t sit with a bright window behind you, so your face is clear
• Keep your look familiar, such as your usual hairstyle
• Look at the camera, not the screen, so it feels like eye contact
• Put the device at eye level, showing your head and shoulders
• Silence pings and notifications, which can confuse

Looking through a photo album together, or playing a favourite song, can help you connect even when words are harder.

• Instead of “Don’t you remember?”, try: “I was just thinking about our trips to the lake.”
• Instead of “What did you do today?”, try: “Did you have soup for lunch?”
• If they sound worried, try: “What is worrying you right now?”
• To show you heard: “You’re worried about the money. That sounds hard.”
• To end warmly: “I’ll call you again on Sunday at ten. Let’s write it on your calendar.”

Before you hang up, agree on a day and time for the next call. They can mark it on a calendar, and you can set a reminder on your own phone.

Learn the home’s routine, such as mealtimes, bedtime and activities, and ask whether your parent has their own phone or whether to call through staff. Ask staff what activities they did, so you have something to talk about next time.

If video or phone calls become confusing, try postcards, letters, or a parcel with meaningful items and a short note. Easier phones, with big buttons or photo speed-dial, may also help.

• Are bills paid, or is unopened mail piling up?
• Are they bathing and grooming?
• Are they eating regular meals, or is there spoiled food?
• Can they still drive safely?
• Do friends and relatives visit regularly?
• Do nearby family carers have the information and support they need?
• Has the home, inside or out, changed?

• Are family carers burning out, or could they use respite?
• Are safety steps in place around the home?
• Are they doing meaningful activities each day?
• Are they getting help with dressing, bathing and grooming?
• Is there safe transport to medical appointments?

Set regular times to talk with helpers, aides and other care providers. If your parent lives in a care community, ask for regular updates from the nurse in charge, and ask to be told about incidents such as a fall.

• A dementia clock showing the day and date
• A memo board or voice reminders on a smart speaker
• A phone with photo buttons for key people
• A video doorbell that can alert a family member

Ask them to check in or visit regularly, and to call you if something seems off. An online care calendar can help everyone see who is doing what.

Places of worship, neighbourhood groups and volunteer groups may offer meals, rides or company.

In the U.S., your parent’s local Area Agency on Aging can help with meals, chores and transport, and refer you to other services. The Eldercare Locator (1-800-677-1116, or eldercare.acl.gov) can connect you with the right one, even from another state.

Home care and adult day services can help with personal care, meals and company, and give family carers a rest.

These professionals can assess your parent’s needs, arrange services and keep an eye on how things are going.

An elder law attorney can help put health care, legal and financial documents in place.

• Ask the local carer what would help most
• Book time with the doctor, lawyer or financial adviser while you’re in town
• Plan time with neighbours, friends and relatives to hear about any changes

• Are rooms and hallways well lit, with night lights?
• Are smoke and carbon monoxide alarms working?
• Do window and door locks work?
• Is there fresh, suitable food in the cupboards and fridge?
• Are there loose rugs, trailing cords or clutter to trip on?
• Is there a list of emergency numbers by the phone?

Look out for changes in hygiene, appearance, weight or mood, signs they are struggling with housework, missed appointments, or bills and renewals not being handled.

Seeing a big change all at once can hit hard. Give yourself a moment, and share what you notice with the local carer and their doctor.

Check how the family members giving daily care are coping. Offering to take over for a day or a weekend can make a big difference.

Leave room to reconnect through conversation, music, walks or simple shared activities. These moments matter as much as the to-do list.

It might include

• Doctors, dentist, carers, social workers, neighbours and landlord, with phone numbers
• Health conditions, past falls and hospital stays
• Help they need with washing, dressing, cooking and eating
• Their usual routine: day programs, groups, places of worship
• Where legal papers such as power of attorney are kept

Agree on one or two people who live close, have a key, and are willing to go over if something happens. Make sure your parent has important numbers saved in or near their phone.

Six in 10 people with dementia will wander at least once. If your parent goes missing, the people nearby should start looking right away, close to home first. If they aren’t found within 15 minutes, call 911 and say the person has dementia.

Get ready now

• Ask neighbours to call if they see your parent lost or out of place
• Keep a recent close-up photo to share with police
• List places they might head for, such as an old home or workplace
• Look into a wandering response service

Make sure the hospital has your number and knows who has legal authority to help with decisions. Sending the key-facts folder with them helps staff understand who your parent is.

Make sure at least one family member has written permission to receive medical and financial information. Your parent may need to sign a release so their doctors can share updates with you.

Under U.S. privacy rules, providers may talk with family involved in a person’s care if the person doesn’t object. If the person can’t decide, providers may share what is in their best interest.

A power of attorney for health care and one for finances let a trusted person make decisions if your parent can no longer do so. Being next of kin doesn’t automatically give you that right.

Find out whether your parent has a will, a living will or other advance wishes, where they are kept, and keep copies.

With your parent’s permission, keep a secure record of bank, insurance, utility and phone accounts. Keep financial and legal documents where they can be found quickly in an urgent situation.

Checking their bank and other accounts regularly helps you spot unfamiliar payments early.

• Block repeat callers and ask the phone company about nuisance-call blocking
• Check accounts regularly for unfamiliar payments
• Put a “no cold callers” sign on the door
• Remind them it’s fine to say “I’ll think about it” and hang up

If a scam happens, be patient and kind. Your parent may already feel embarrassed. Contact the bank right away.

Think about the time and cost of travel when deciding what you can offer. The Alzheimer’s Association has information on care costs, insurance and benefits, and an elder law attorney can help you plan.

Many distance carers feel guilty about not being nearby. Living out of town does not mean you aren’t involved or that you don’t care.

Try saying to yourself

• “I’m doing what I can, from where I am.”
• “Making calls and doing paperwork is real care.”
• “I can’t fix dementia. I can help them feel loved.”

The person nearby may feel you don’t see how hard it is, and you may feel left out of decisions. Asking how they are and offering practical help, like arranging respite, can ease the strain.

You may notice big changes all at once, or hear that your parent didn’t know who you were on the phone. Grieving someone who is still alive is real grief.

The Alzheimer’s Association runs ALZConnected, a free online community where you can talk with other long-distance carers. Your own doctor can also point you to carers’ groups near you.

Free and confidential, every day of the year, with interpreters in more than 200 languages. Staff can help with care options and connect you with local services where your parent lives. Callers who are deaf or hard of hearing can dial 711 for relay.

A free public service of the U.S. Administration for Community Living. It connects you with your parent’s local Area Agency on Aging for meals, transport, in-home help and respite. You can call, text, chat or search at eldercare.acl.gov. Phone lines are open weekdays, 8 a.m. to 9 p.m. Eastern.

Free, confidential support 24/7 in the U.S. by call, text or chat (988lifeline.org). You can contact 988 if you are struggling yourself, or if you are worried about a loved one.