A dementia routine worksheet for families

Routine isn't rigidity. It is a way of spending less memory.

When somebody is living with dementia, the hardest part of a day is often not the task itself. It's the deciding: what happens next, where things are kept, who this person in the kitchen is, what is being asked. Every one of those is a small withdrawal from an account that is running low.

A routine doesn't fix memory. What it does is move as much of the day as possible onto habit, which lives somewhere else and lasts longer. The reward isn't tidiness. It's that there's more left over for the parts of the day worth having.

Before you fill anything in

Three things worth deciding first, because they shape everything below.

Build the routine around what already works. Not around what would be efficient. If they have washed at night for fifty years, the routine washes at night.

Write it for somebody else. The test of this worksheet is whether a person who has never met them could get through a Tuesday with it. That person might be a caregiver on a first shift, a sibling who visits twice a year, or you at three in the morning when you're past thinking clearly.

Leave the failures in. The most useful column is the one nobody writes down: what makes this part of the day go wrong. That is the knowledge that currently exists only in your head, and it is the first thing lost when you aren't there.

The worksheet

Copy these five blocks onto a page. For each one, fill in four lines.

1. Waking and the first hour

• What happens, in order:
• Who does it:
• What makes it go well:
• What makes it go wrong:

2. Midday

• What happens, in order:
• Who does it:
• What makes it go well:
• What makes it go wrong:

3. Afternoon

• What happens, in order:
• Who does it:
• What makes it go well:
• What makes it go wrong:

4. Late afternoon and evening

• What happens, in order:
• Who does it:
• What makes it go well:
• What makes it go wrong:

5. Night

• What happens, in order:
• Who does it:
• What makes it go well:
• What makes it go wrong:

What to write in "what makes it go wrong"

This is the part people leave blank, so here is what belongs in it. Real examples from real households, in the form they're usually discovered.

• The radio being on while somebody is trying to talk to them.
• Two people in the bathroom at once.
• Being asked a question with more than two options in it.
• A mirror, at a particular time of day.
• Cold hands on skin. Warm the flannel first.
• Being helped from the left when they're expecting it from the right.
• The word "shower." Not the shower, the word.
• Anybody rushing, even quietly. Especially quietly.

None of these is obvious, all of them are learnable, and every one of them is currently in somebody's head rather than on a page.

The late afternoon block is the one to plan hardest

Many families find that the difficult hour is the same hour every day, often in the late afternoon as the light changes. It has a name, which is less useful than the pattern itself.

What tends to help isn't a new activity but a lowered demand: fewer decisions, less noise, more light, a familiar task with no right answer. Folding. Sorting. Peeling. Something with hands in it and no test at the end.

What tends to make it worse is what most of us do instinctively, which is increase the stimulation to distract from the distress.

One page on the fridge

Whatever you write, the version that gets used is the short one somebody can read standing up.

Put on the fridge: the order of the day in five lines, the three things that make it go wrong, what this person likes to be called, and one phone number that reaches a human who knows them. Keep the long version wherever you keep the important papers.

What to change, and what to leave

Change the routine when the person changes, not when it stops suiting the household. A routine that is now too demanding should be cut back, and a routine that has become too thin can be widened.

But change one thing at a time, and give it a week. If you change three things and the week goes badly, you've learned nothing except that the week went badly.

What this worksheet can't do

It can't tell you whether a change you're seeing is the condition, an infection, a medication, pain somebody can't report, or something else entirely. Those look alike from the outside and they aren't alike.

A sudden change, over days rather than months, is worth a call to their physician rather than a redesign of the afternoon.

Handing it to somebody else

The worksheet earns its keep the first time somebody who isn't you has to run the day.

A sibling covering a weekend, a new caregiver on a first shift, a hospital nurse who has never met your mother: all of them are about to make the same mistakes you made in the first month, unless somebody writes down what you learned. The worksheet is that document. It is worth keeping it on one page for exactly this reason.

What a stranger needs from it, in order: what the day normally looks like, what makes it go wrong, and what to do when it does. Names help. So does the sentence that works, written out word for word, because the phrasing that settles somebody is rarely the obvious one and it doesn't survive being paraphrased.

Two things belong on it that families usually leave off. The first is what not to do, which is often more useful than what to do and is never obvious to a newcomer. The second is who to call and in what order, so that a person having a hard afternoon doesn't become a person having a hard afternoon while somebody looks for a phone number.

When the routine stops working

It will, periodically, and usually not because the worksheet was wrong. Routines stop working when the illness moves, when something physical changes, or when something in the house changed that nobody connected to it.

Before redesigning the day, rule out the ordinary causes: pain, constipation, a urinary tract infection, a new medication, poor sleep, a hearing aid with a flat battery. A sudden change in somebody with dementia is a medical question until proven otherwise, and a surprising amount of what looks like decline is something treatable wearing a costume.

When the cause really is the illness moving, change one thing at a time. Families under pressure tend to redesign the whole day at once, which feels decisive and makes it impossible to tell what helped. Move the hardest task to the best hour, leave everything else alone for a week, and see. Then the next thing.

Keep the old version of the worksheet when you rewrite it. Six months of superseded pages is the clearest record anybody will ever have of how the illness actually moved in this particular person, and it is worth more to a physician than a general description of decline.

Frequently asked questions

Why does routine help with dementia?

Because it moves the effort off the part of memory that is failing. A day that runs the same way every day asks less of recall and more of habit, and habit survives longer. It isn't about rigidity; it is about removing decisions that have become expensive.

What should the worksheet actually contain?

What the day normally looks like, what tends to make it go wrong, what to do when it does, what not to do, and who to call in what order. One page. The point is that somebody who has never met the person can run a reasonable day from it.

Why is the late afternoon so hard?

For many people with dementia the hours before and after dusk are the most difficult of the day, and a routine that works at ten in the morning often doesn't hold at five. It is worth planning that block harder than any other, and worth not scheduling anything demanding into it.

The routine suddenly stopped working. What now?

Treat it as a medical question first. Pain, constipation, a urinary tract infection, a new medication, bad sleep or a flat hearing aid battery account for a great deal of what looks like sudden decline. Rule those out with the physician before redesigning the day.

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If this is where you're

If the worksheet is more than one household can carry alone, somebody can carry part of it: dementia support at home

Abloom Senior Living runs a small residence in Woodbury, and the nurses and certified caregivers who staff it also work in people's own homes across Saint Paul, Maplewood, Woodbury, Cottage Grove and Stillwater. If you would rather talk to somebody than read another article, tell us about your week and we will read it before we reply. We won't put you on a list.

This article is general information from a care provider. It is not legal, financial, or medical advice. For questions about a specific person's health, medication or safety, talk to their physician.