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Caregiver guide

Coming Home

For families caring for someone with dementia · About 7 minutes to read

Follow Ruth home from the day center, from pick-up to the next center day, first the hard way, then with what helps. Open Explore to start.

Pick-up is the start of her evening. How the afternoon goes can shape the hours that follow, for her and for you.

She may not remember her day, so the day has to travel home with her: through the staff, the things she made, and a notebook in her bag. Questions that test her memory leave her feeling tested, not included. This guide follows Ruth home on an ordinary Tuesday, a few weeks after her first day. The 3D guide shows each moment twice: first what makes it harder, then what helps.

Staff hold the details

“Your loved one may not remember the day’s activities. The staff will gladly provide the missing details.”

13% against 75%

At the program, only 13% of people took naps, against 75% on days at home (133 people). She may come home tired.

Calmer evenings

On center days, behavior problems eased in the evening, and sleep improved that night (121 family caregivers).

Music connects

“Music provides a way to connect, even after verbal communication has become difficult.”

The Pick-Up

Pick-up is where her evening begins. Be there when you said, and take two minutes with the staff before you take her home.

What helps

  • The same time, every time. The time you gave at the door is the one she’s holding on to. “A predictable and consistent daily routine” helps ease worry.
  • Running late? Call the center, so staff can tell her in your words.
  • Greet her first. Her name and a smile before the coat and the bag.
  • Ask the staff, not her. She may not remember the day’s activities, and staff can fill in the missing details. Ask for one good moment you can mention later.
  • Don’t judge the day by her first words. She may say she didn’t like it and still go back the next day. Ask staff how she is actually doing.
  • Bring the day with you: what she made, a song sheet, a photo staff took. Art projects “can create a sense of accomplishment and purpose.”

The Ride Home

The ride isn’t the time for a report. A string of questions that test her memory can leave her upset before you’re home.

Instead ofTry
“So what did you do today?”“Rosa says you handed out the song sheets!” One thing staff told you.
“Do you remember Walt?”“I hear Walt grows roses too.” Share it, don’t test it.
“You had lunch, didn’t you? What was it?”“I’m starving. Shall we have a cup of tea?” Talk about now.
“You can’t say you hated it, you were laughing!”“Sounds like a long day. Let’s get you home.” Answer the feeling.

What helps

  • No quiz. Skip “What did you do? Who did you sit with? What did you eat?” A question like “What did you do this morning?” can highlight memory problems.
  • Lead with one specific thing staff told you, then let her talk, or not.
  • Talk about your own day. “Speak briefly about your day and give them time to ask you questions about it.”
  • Familiar music, without ads. “Choose a source of music that isn’t interrupted by commercials, which can cause confusion.”

Arriving Home

She may come home tired: few people nap at a day program. A drink, the bathroom and a quiet hour bridge the day into the evening.

What helps

  • Her needs first. A drink and a small snack, then the bathroom. Hunger or thirst can add to late-day restlessness.
  • A calm house. “Reduce noise, clutter, or the number of people in the room,” and make early evening “a quiet time of day.”
  • A quiet hour, not a long nap. A short rest is fine, but a long late nap can cost her the night (more in Calmer Evenings).
  • Lamps on and curtains closed if it’s getting dark.
  • Keep the evening plain. A center day is a full day, and “a full schedule can be tiring.”

Carrying the Day Forward

The day can carry on at home through what she made, the songs she sang and the people she met, as long as nobody asks her to remember it.

What helps

  • What she made, where she’ll see it: the paper flower on the fridge, the song sheet on the table.
  • The songs from the day. Ask staff what they sang, and play it at home. “Music provides a way to connect, even after verbal communication has become difficult.”
  • “I remember,” not “Remember?” “Rosa told me you sang with Walt,” rather than “Do you remember Walt?” Asking “Remember when…?” “may highlight the fact that the person has memory problems.”
  • Talk about what’s in front of you. A photo or an object can help you talk about the present.

Let the staff hold the facts, so you can hold the feelings. She doesn’t need to tell you about her day for it to have been a good one.

The Notebook

A notebook in her bag can carry the day both ways. One caregiving tip sheet suggests you “keep a journal or log in the person’s living space as a method of communication with care providers.”

  • From the center: what she enjoyed, who she sat with, how she ate and drank, and one good moment to mention that evening.
  • From home: how she slept, her mood that morning, and anything coming up.
  • Before the next center day, tell staff about a bad night, a doctor’s visit or a change at home, so they can plan her day around it.
  • Keep the routine steady on center days: the same pick-up time and the same quiet hour when you get home.

Day Notebook

One page for each center day, to go back and forth in her bag. Fill in the home half in the morning; the center half is for what the staff tell you, or write. The latest good moment shows at the top, ready for the evening. Your demo holds up to 14 entries while this page stays open. Copy or print them before you leave.

Day Notebook

Today

From home
From the center

Kept while this page stays open

Your Afternoon Too

Pick-up often comes straight from work. A minute in the car before you go in helps you arrive calm, and she takes her cue from you.

The center day is a break for you as well: on center days, caregivers had less stress. Once she’s settled with her tea, take a few minutes for yourself before the evening starts.

Your Next Step

At the next pick-up, ask the staff for one good moment, and start a notebook for her bag.

Then watch the afternoon, start to finish, the hard way and with what helps. For the hours after supper, see Calmer Evenings.

This guide offers general information, not medical advice. Every person is different, and what helps can change over time. Your loved one’s doctor or care team, and the center’s staff, can help you decide what is right for them.

Sources: Alzheimer’s Orange County, Selecting an adult day service program · UCSF Care Ecosystem, Adult day programs · UCSF Care Ecosystem, Anxiety related to dementia · Alzheimer’s Society, Language and dementia: what not to say · Ohio State Wexner Medical Center, How to communicate with someone with dementia · Alzheimer’s Association, Art and music · Michigan DHHS, Caring Sheet 10 · National Institute on Aging, Tips for coping with sundowning · Femia and others, 2007, adult day services and symptoms of dementia · Zarit and others, 2011, adult day care and caregivers’ daily stress