Sundowning and difficult dementia behaviors
Families caring for someone with dementia often describe a daily pattern: as afternoon fades into evening, confusion, agitation, and restlessness intensify. It’s called sundowning, and while it’s exhausting, understanding it makes it more manageable.
What sundowning is
Sundowning is a worsening of confusion, anxiety, agitation, or pacing in the late afternoon and evening, common in middle-stage dementia. The causes aren’t fully understood — a disrupted body clock, end-of-day fatigue, low light, hunger, or the accumulated overwhelm of a hard day all play a role.
What helps
Non-drug approaches come first: keep a consistent daily routine, maximize daylight and turn on lights before dusk to reduce shadows, limit afternoon caffeine and naps, and plan calm, low-stimulation evenings. A light snack, soothing music, and a familiar activity can settle a restless evening. Rule out simple triggers — pain, a full bladder, hunger, or a new medication.
Responding in the moment
Stay calm and reassuring — your tone matters more than your words. Don’t argue with or correct confusion; redirect gently. Ensure the environment is safe for pacing and prevent wandering. Meet the emotion behind the behavior, not just the behavior.
When it’s too much to handle at home
Persistent, unsafe behaviors — wandering, aggression, exit-seeking — are one of the clearest signals that a person needs the secured environment and dementia-trained staff of memory care. It’s not a failure to reach that point; it’s often the safest, kindest choice. Tell the doctor about new or worsening behaviors — some have treatable medical causes, and confusion that is new or fluctuating deserves a look for delirium before it is treated as dementia getting worse.
Before anyone reaches for an antipsychotic — especially with Lewy body dementia
This page is about agitation, so it has to say the part that agitation leads to. When non-drug approaches don’t hold, an antipsychotic is often what gets offered. Two things are worth knowing before that conversation, and they are the kind of thing families are told afterward.
First, the class-wide warning. Antipsychotics carry an FDA boxed warning that begins: “Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death.” The trials behind it — seventeen placebo-controlled studies — found a risk of death in drug-treated patients “of between 1.6 to 1.7 times the risk of death in placebo-treated patients” (FDA-approved label, haloperidol ↗). These drugs are not approved for dementia-related psychosis. That does not make prescribing one wrong — untreated terror and violence carry their own risks, and doctors weigh this every day — but it makes it a decision to be part of, not a detail to learn about later.
Second, and this is the one to carry with you: if Lewy body dementia is in the picture, antipsychotics are a different order of danger. Antipsychotics “increase the risk of death in all elderly people with dementia but can be particularly dangerous in those with LBD.” The traditional ones, such as haloperidol, “generally should not be prescribed for people with LBD. They can cause dangerous side effects, such as worsened parkinsonism, or can be fatal.” In rare cases a person with LBD reacts with “a potentially deadly disorder called neuroleptic malignant syndrome” (NINDS, Lewy Body Dementia ↗). This is not a rare-disease footnote: LBD “is often hard to diagnose because its early symptoms may resemble those of Alzheimer’s or a psychiatric illness. As a result, it is often misdiagnosed or missed altogether” — so the family at risk here is frequently one that has been told “dementia” and nothing more.
NINDS asks caregivers to do something concrete about it, because the risk shows up in exactly the settings where nobody knows the person: “emergency room physicians and other hospital workers, as well as staff in long-term care and other facilities, may not know that people with LBD are extremely sensitive to antipsychotic medications.” Its advice is to inform hospital staff of the diagnosis and the medication sensitivity, and to request “that the person’s neurologist be consulted before giving them any medications to control behavior changes.” If your person has an LBD or Parkinson’s diagnosis, that sentence belongs on the paperwork that travels with them — not in your memory of a page you read once.
What this adds up to is one question, asked early rather than in an ER at midnight: which dementia is this, and does that change what is safe to give? See the subtypes for why the answer matters beyond this page. Overuse of these drugs as a chemical restraint is also a residents’-rights issue, and the long-stay antipsychotic rate is on every nursing home’s record here — it is one of the few quality measures where a family can see the practice before they choose.
If there is also a psychiatric diagnosis, memory care may not be the answer on offer. Where dementia sits alongside a schizophrenia, bipolar, or long-standing serious mental-illness diagnosis, many memory-care communities will decline the application — and a family who tours first and discloses later can spend months collecting rejections. Start instead with a geriatric psychiatry evaluation: it sorts out what is dementia, what is the psychiatric illness, and what is a medication effect, and it produces the assessment the better-equipped places will ask for anyway. Your state’s behavioral-health agency and your Area Agency on Aging (1-800-677-1116) know which local settings actually take dual diagnoses. If a Medicaid-certified nursing home comes into the picture, a serious mental-illness diagnosis also triggers a PASRR Level II screening before admission — ask about it early rather than discovering it at the door. The touring guide has the questions that get a straight answer out of a tour.
This guide is general information, not medical, legal, or financial advice. Rules vary by state and change over time. For personalized, unbiased help, your Area Agency on Aging and your state’s Long-Term Care Ombudsman are free.