Caring for someone with dementia at home

Dementia care at home is less dramatic and more exhausting than people expect. There is rarely a crisis. There is a slow accumulation of mornings that take ninety minutes instead of twenty, of the same question asked eleven times before lunch, of a person you have known your whole life becoming slightly harder to reach. Almost none of what helps is clinical. Most of it is routine, environment, patience and the same face showing up at the same hour.

This page is about what that actually looks like, and about the person doing it, who is usually a daughter in her fifties with a job and a bad back.

How common this is

About one in nine people over 65 nationally, and roughly one in eight in California. The reason that is worth stating is that families in this situation almost always feel they are the only ones handling it, and behave accordingly, which is where the trouble starts.

What dementia care at home means day to day

Strip away the brochure language and it comes down to four things, in roughly this order of importance.

1. The same routine, in the same order, at the same times. Memory for sequence outlasts memory for fact by a long way. Somebody who cannot tell you what day it is can still do the morning in the right order if the order never changes. Every deviation costs something.
2. A room that has not been rearranged. The environment is doing a lot of the remembering. Moving the chair, replacing the kettle, tidying the pile on the sideboard: all well intentioned, all expensive.
3. The same person. More on this below, because it is the thing families underestimate most and the thing agencies find hardest to deliver.
4. Somebody who does not argue. Correcting a person about what year it is or where their husband is wins the point and loses the afternoon. This is a learnable skill and it is not intuitive, which is why it is the thing worth asking an agency about.

Why the same caregiver matters more here than anywhere else

With most home care, a substitute caregiver is an inconvenience. With dementia it is a different service. A familiar person is a cue in themselves, and a stranger in the kitchen at seven in the morning can turn a manageable day into a distressed one before anybody has had breakfast.

So when you are asking an agency the question about what happens when the regular caregiver is ill, this is the context in which the answer matters most. A small consistent roster beats a large flexible one. Ask how many different people will come in a normal month, and ask what the number was last month.

The part nobody plans for: the family caregiver

Nationally, 83% of the help older adults receive comes from family, friends or other unpaid caregivers, and nearly half of everyone providing that help is doing it for somebody with dementia. In California the scale of it looks like this, and so does the cost:

Six in ten have a chronic condition of their own. Nearly one in five has depression. Those are not soft numbers about feeling tired, and they are published by a research charity rather than by anybody selling relief.

This is why respite is not a luxury purchase at the end of the list. A daughter who gets four hours twice a week is a daughter who is still doing this in eighteen months. The families who run into real trouble are almost never the ones who asked for help early.

What actually helps, practically

• Write the routine down and put it where a substitute would find it, including the things that seem too obvious to write.
• Keep a short note of what set off a bad afternoon. Patterns show up over two weeks that nobody spots in the moment, and they are usually mundane: hunger, needing the bathroom, the television too loud, a room too dark at four o'clock.
• Light in the late afternoon. Agitation that arrives at the same time each day is common enough to have a name, and dim rooms make it worse.
• Reduce the number of decisions rather than the number of activities. Two shirts laid out beats a closet.
• Say less and slow down. Short sentences, one instruction, a pause that feels uncomfortably long to you.
• Deal with hearing and vision. Somebody who cannot hear the question looks a lot like somebody who cannot understand it, and it changes how everyone treats them.

When home stops being the right answer

It sometimes does, and pretending otherwise is not kindness. The usual triggers are night-time wandering that nobody can safely manage, physical care that has outgrown what one person can do, aggression that is frightening the household, or a family caregiver whose own health has gone. Around the clock cover at home is possible and plenty of families do it, but it should be a decision rather than a slide.

Worth knowing: assisted living in this region is $7,750 a month and a semi-private nursing home room is $13,688, against a published home care median of $40 an hour. At genuinely round the clock hours home care is not the cheaper option, and any page telling you otherwise is choosing its hours carefully. The arithmetic is set out properly in the cost guide.

Where to get help that is not us

The Alzheimer's Association runs a 24/7 Helpline on 800-272-3900, staffed by people trained for exactly this and free to call at three in the morning, which is when a lot of families need it. Its facts and figures report is where the prevalence and caregiving numbers on this page come from; the cost figures come from the CareScout survey. Both are listed at the foot, so you can check us.

Locally, we serve Sacramento, Placer, El Dorado and Yolo counties, and the individual town pages set out what is actually nearby: which hospital, how far, what the area is like for somebody who should not be driving any more.