Sun Down Dementia: Getting Your Family Through the Evenings, Holidays and Costs

Sun down dementia is the name families give to the confusion, worry and restlessness that can build in the late afternoon and evening for someone living with dementia. If your mother is calm at noon and pacing by five, you are not imagining it, and you are not alone.

The direct answer is that there is no single cure, but small changes to the day often take the edge off. I’m Mike McClernon, and this guide focuses on coping at home, getting through the holidays, and one question that comes up in nearly every first call: does Medicaid cover dementia care? I keep the medical side general, so please talk to your parent’s doctor about anything that changes suddenly.

What does sun down dementia look like at home?

Most families notice a pattern. As daylight fades, the person becomes more anxious, suspicious, tearful or restless. They may ask to go home when they are home, follow you from room to room, or insist someone is in the house.

It is a pattern, not a diagnosis, and it can ease or worsen from week to week. Tiredness, hunger, pain, a noisy house and changes in light all seem to play a part. Doctors do not agree on one cause, so it helps to treat it as a puzzle with several small pieces.

I already wrote an explainer on what sundowning is and why it happens. This post is about the part that comes next: what to do with the clock in your hand, at four in the afternoon, with a worried person who needs you.

Keep a simple log

For one week, jot down the time symptoms begin, what happened that day, what your parent ate and who visited. Patterns show up quickly, and the doctor can use the notes. If you see new symptoms, the overview of dementia symptoms can help you describe them.

What helps in the late afternoon and evening?

Give the day a gentle shape and lower the demands as dusk approaches. These steps are the ones families tell me make the biggest difference.

1. Get daylight and some movement in the morning, such as a walk or time near a bright window.
2. Keep meals and bedtime at the same hours each day.
3. Move busy tasks, appointments and visitors to the morning or early afternoon.
4. Turn lights on before it gets dim, so shadows do not frighten.
5. Keep the house calm in the evening: lower the television, avoid a crowd, close the curtains once it is dark.
6. Offer a light snack and a drink in the late afternoon, and ask the doctor about caffeine.
7. Use a familiar, quiet activity such as music, folding towels or looking at photos.
8. Speak slowly, validate the feeling, and redirect instead of arguing.

That last step is worth practicing. If your father says he must get to work, saying “you retired years ago” starts a fight. Saying “tell me about the job” opens a door. I explain the idea in redirection as a communication technique.

Please do not give any medicine to calm an evening without the doctor’s advice. Medicines can have serious side effects in older adults, and the doctor should make that call.

What about fear, hallucinations and strange things said at dusk?

Seeing or hearing things that are not there can happen with dementia, and it is frightening for everyone. Stay calm, answer the feeling and tell the doctor about it soon.

Do not argue with what your parent sees. Say something like “I can see that scares you, I’m right here” and then change the room: turn on a light, put on music, offer tea. Check for simple causes such as a coat hanging on a door that looks like a person, or a mirror that frightens.

Some hallucinations come with particular types of dementia, and some are triggered by infection or medicine. That is why a medical review matters. I wrote a fuller piece on what stage of dementia brings hallucinations and how memory care staff respond, which many families find reassuring.

How do you handle dementia holidays?

Make the holiday smaller, shorter and earlier. A big dinner at six in the evening is the hardest version for someone with sun down dementia. A quiet lunch at one, with two or three familiar faces, is often a happy one.

Before the day

Tell guests what to expect. Ask them to introduce themselves, not to quiz your parent with “do you remember me”, and to be patient with repeated questions. Set up a quiet room with a chair and a blanket where your parent can rest.

On the day

Keep traditions that bring comfort, such as a favorite song, a family recipe or the old tablecloth. Skip the ones that overwhelm: loud music, many children at once, long trips. Let your parent join in a simple task like stirring or setting napkins.

If they live in memory care

Visit at the time of day they do best, often late morning. Many communities hold their own holiday gatherings, and staff can tell you what time is calmest. Bring a photo or favorite treat, and if leaving is hard, plan a small ritual, like a song, then step out calmly.

Remember that you can have a good holiday that looks different from the old one. The goal is a calm day for the person at the center of it, and for you.

Does Medicaid cover dementia care?

Sometimes, but only for people who meet strict income and asset rules, and it pays for some kinds of care far more than others. Medicare, by contrast, does not pay for assisted living or memory care rent. Confirm every detail with an elder law attorney or your county Medicaid office before you decide anything.

In New York, Medicaid generally covers care in a nursing home for people who qualify. For assisted living, there is a limited program, offered only in certain licensed communities, and there are often waitlists. A Medicaid pending application or a spend down plan can complicate a move, so ask early. I explain the program in my post on whether Medicaid pays for assisted living in New York.

For most families the real picture is a mix: savings, income, maybe a long term care policy, maybe veterans benefits. Two posts help set expectations. See whether Medicare covers long term care for the exceptions, and what the average monthly cost of memory care covers to understand what the monthly fee includes. I do not quote prices here because they vary by community and room.

When does sun down dementia mean it is time to look at memory care?

Look at options, starting with memory care for Alzheimer’s and dementia, when evenings are no longer safe or sustainable for the family, even with every tip above. Warning signs include wandering at night, falls, a caregiver who cannot sleep or who is getting sick, and behaviors you cannot manage alone.

It helps to know the road ahead. The stages of dementia can show how needs tend to grow, though every person moves at their own pace. I plan 18 to 24 months ahead so that a rising level of care does not force a rushed move.

If you decide to tour, the guide to comparing memory care options gives you questions to ask. Visit once in the late afternoon, because that is when you will see how the staff handle the hardest hour of the day.

Get free help from Mike in Glen Cove

I’m a certified senior living advisor with a dementia care certification, and my help is free to families. I have toured more than 90 communities in Nassau, Suffolk and Queens, and I can tell you which ones handle evenings well. Start with the memory care options on Long Island or see how memory care is set up in general.

My office is at 42 Prospect Ave, Glen Cove, NY 11542. Reach out through the contact form for a free first call.

Questions readers ask

Read next

• What Stage of Dementia Brings Hallucinations, and How Memory Care Staff Respond
• The 7 Stages of Dementia Before Death, in Plain Language
• How Do I Compare Memory Care Options in My Area on Long Island?