Table of contents
- Signs dementia is getting worse, area by area
- How the signs differ by type of dementia
- Sudden worsening vs. gradual decline
- What each change usually means for care at home
- A simple way to track changes for the doctor
- When home care is no longer enough
- Florida help when things change
- Where our companion care fits
- Frequently asked questions
- Sources
The usual signs dementia is getting worse are more confusion about time and place, more help needed with dressing, bathing and eating, new changes in sleep, mood or behaviour, and, later, trouble walking, swallowing and controlling the bladder. These changes normally build slowly over months. A change that appears over hours or days is different: it is often a separate, treatable problem such as an infection or a medicine, and it needs a doctor quickly.
This guide covers what to watch for in each area of daily life, how the pattern differs by type of dementia, what each change usually means for care at home, and where Florida families can get help. It describes; it does not diagnose. Talk to your parent’s doctor about any change you see. For the overall stages, see our guide to the stages of dementia.
Signs dementia is getting worse, area by area
Most families notice change in a few areas at once rather than one dramatic event. The table brings together what the Alzheimer’s Association and the NHS describe for the middle and later stages.
| Area | What getting worse can look like |
|---|---|
| Memory | Forgetting events and their own personal history, not recalling their address or phone number, losing awareness of recent experiences |
| Language | Harder to find words and follow conversation; in the later stages, some people lose the ability to speak and communicate through expression and touch |
| Daily tasks | Needing help choosing clothes for the weather, then help with washing, dressing and eating, and finally help with all personal care |
| Behaviour and mood | Withdrawal, suspicion, delusions, repetitive actions, agitation, anxiety, low mood, aggression and sometimes hallucinations |
| Sleep | Sleeping in the day and restless at night; more confusion from late afternoon into the night (sundowning) |
| Eating and swallowing | Loss of appetite and weight; trouble chewing or swallowing, which can lead to choking and chest infections |
| Walking and falls | Less steady, needing help to walk, then help to sit; some people eventually need a wheelchair or stay in bed |
| Continence | Bladder problems first, then for some people bowel problems too |
| Recognising people and places | Confusion about where they are or the date; later, not recognising close family or friends |
Wandering and getting lost
The Alzheimer’s Association says six in 10 people living with dementia will wander at least once, at any stage. Early warning signs include coming back later than usual from a walk or drive, forgetting how to get to familiar places, talking about going to work, asking to “go home” while at home, pacing, and trouble finding the bathroom or bedroom. If your parent goes missing, search nearby first and call 911 if you have not found them within 15 minutes, telling the police they have dementia.
Worse in the evening
Sundowning is a period of more confusion, anxiety, agitation, pacing or disorientation from dusk into the night. The Alzheimer’s Association links it to tiredness at the end of the day, a disrupted body clock, low light and shadows, and picking up on other people’s stress. It also says a urinary tract infection, incontinence, restless legs or sleep apnea can cause or worsen sleep problems, so a new pattern of bad nights is worth raising with the doctor.
How the signs differ by type of dementia
Knowing your parent’s diagnosis helps you judge whether a change is expected for them. Ask the doctor which type they have if you are not sure.
Alzheimer’s disease: a slow, steady slope
Alzheimer’s usually changes gradually. The Alzheimer’s Association says the middle stage is typically the longest and can last many years, with care needs growing over that time. Memory and planning usually change first, and walking, swallowing and continence later.
Vascular dementia: changes in steps
Vascular dementia is caused by reduced blood flow in the brain. The Alzheimer’s Association says thinking changes sometimes occur suddenly after a stroke, or begin as mild changes that gradually worsen. The NHS says later symptoms may get worse slowly or in sudden steps every few months or years. Families often describe a level stretch, then a clear drop.
A sudden drop can mean a new stroke. Call 911 at once for sudden confusion, trouble speaking or understanding, a sudden headache, trouble walking or poor balance, or numbness or weakness on one side of the face or body, which the Alzheimer’s Association lists as stroke symptoms.
Lewy body dementia: good and bad days
Dementia with Lewy bodies is known for fluctuation. The NHS says alertness can swing between confusion and drowsiness within minutes or hours, and the Alzheimer’s Association describes spontaneous changes in attention and alertness. Other features include detailed visual hallucinations, slowness, stiffness and a shuffling walk, acting out dreams in sleep, and fainting or unsteadiness that leads to falls. Swallowing problems can cause chest infections.
Because the condition swings from day to day, compare weeks, not single days. One rule is important: the Alzheimer’s Association says antipsychotic medicines call for extreme caution in Lewy body dementia, because up to half of people have serious reactions, including sudden changes in consciousness, trouble swallowing and acute confusion. If your parent gets much worse after a new medicine, call the doctor promptly.
Sudden worsening vs. gradual decline
Dementia itself usually moves over months. A change over hours or days points to something else. The NHS calls sudden confusion delirium and says to get medical help immediately when someone suddenly becomes confused. Common causes it lists include:
- Infections, especially urinary tract infections, which it says are a frequent cause in older people and people with dementia.
- A stroke or TIA (“mini-stroke”).
- Some prescription medicines, including a new medicine or a dose change.
- Low blood sugar in people with diabetes.
- A head injury, for example after a fall.
Florida heat and dehydration
The CDC says adults over 65 adjust less well to sudden temperature changes, are more likely to have conditions that change how the body handles heat, and are more likely to take medicines that affect temperature control or sweating. The Alzheimer’s Association adds that a person with dementia may forget to drink or not feel thirsty. The CDC’s advice is to drink more water than usual without waiting for thirst, ask the doctor how much to drink if fluids are limited or your parent takes water pills, and check on an older person at least twice a day in hot weather: are they drinking, do they have air conditioning, and are there signs of heat stress?
When to call, and how fast
- Call 911: stroke signs, a serious fall, trouble breathing, or your parent cannot be woken properly.
- Call the doctor the same day: confusion, drowsiness, agitation or hallucinations that came on over hours or days, a fever, new incontinence, or refusing food and drink. Bring a list of every medicine, including over-the-counter ones and supplements.
- Book an appointment: a slow change over weeks or months, so the doctor can review medicines and update the care plan.
A sudden drop is not always a permanent new stage, so ask the doctor what to expect once the cause is treated. Our guide to delirium in dementia explains the signs, recovery time and how to lower the risk at home.
What each change usually means for care at home
Signs of progression are also signs that the care plan needs to change. These are common patterns, not rules; your parent’s doctor and your own sense of what is safe come first.
| Change you notice | What it often means at home |
|---|---|
| Missed medicines or meals, unsafe cooking | Someone checking in daily, medicines managed by another person, stove safety |
| Getting lost, wandering, asking to “go home” | Supervision during the day, door alarms or chimes, a recent photo ready, car keys put away |
| Restless nights, sundowning, getting up at night | Evening company, night lights, and possibly overnight help so the family caregiver can sleep |
| Needing help to wash, dress or use the toilet | Hands-on help with personal care, often daily, and a set routine |
| Unsteady walking, falls, fainting | Clear walkways, grab bars, someone nearby when your parent moves, a falls review with the doctor |
| Trouble swallowing, eating less | Supervised meals, soft foods, a doctor’s or swallow assessment |
| Cannot safely be left alone | Supervision for most or all waking hours, shared between family and paid help |
For a way to work out hours, see how many hours of care someone with dementia needs.
A simple way to track changes for the doctor
Doctors see your parent for minutes; you see them every day. A short written log turns “she seems worse” into something a doctor can act on.
- Write the date and what changed, in plain words: “Could not find the bathroom at night,” not “more confused.”
- Note how fast it came on: over hours, days, weeks or months.
- Note the time of day, so evening patterns show.
- Record eating, drinking, sleep, toilet changes and falls.
- List every medicine and any new one or dose change, with dates.
- Bring the log to each appointment and ask: is this the dementia progressing, or could something else be going on?
Our free printable dementia care log has space for all of this.
When home care is no longer enough
Many people with dementia can stay at home for a long time with the right help, but not everyone, and choosing a facility is not a failure. In the later stages the NHS says a person is likely to need constant care and attention, and the Alzheimer’s Association describes needing help with all personal care, losing the ability to walk and sit, and swallowing problems. A move may make sense when:
- Your parent needs two people to move them safely, or skilled nursing care every day.
- Wandering or night waking cannot be made safe at home.
- Behaviour puts your parent or the caregiver at risk.
- The family caregiver’s own health is breaking down, even with paid help.
Options include memory care in an assisted living facility, a nursing home for people who need daily nursing care, and hospice. The Alzheimer’s Association says hospice focuses on comfort and dignity, and that Medicare hospice requires a physician to certify a life expectancy of less than six months. Our pages on memory care vs. in-home care in Florida and late-stage dementia go further.
Florida help when things change
- Memory Disorder Clinics. Florida’s Alzheimer’s Disease Initiative funds 17 Memory Disorder Clinics across 13 service areas, offering diagnosis and referral for Alzheimer’s and related dementias. Ask one for a reassessment when things change.
- Elder Helpline, 1-800-963-5337. The Department of Elder Affairs’ line connects you to services in every Florida county.
- Aging and Disability Resource Centers. Florida’s 11 Area Agencies on Aging work as ADRCs. In our areas: Area Agency on Aging for Southwest Florida, (239) 652-6900; Area Agency on Aging of Palm Beach/Treasure Coast, (561) 684-5885; Alliance for Aging in Miami, (305) 670-6500. Ask about respite care and caregiver support groups through the Alzheimer’s Disease Initiative.
Where our companion care fits
When the signs above mean your parent should no longer spend long stretches alone, a steady companion can help. Our caregivers are screened for dementia care experience, and you watch each caregiver’s video interview before choosing. We send 3 caregiver video profiles within 48 hours, and your parent has one consistent companion who gets to know their normal days and can tell you when something changes. Our care is non-medical. The rate is $35 an hour · minimum 25 hours a week. No long-term contract. Stop anytime with 7 days’ notice. We serve Southwest Florida, Palm Beach, the Treasure Coast, Miami and the Keys. Call (689) 333-6079 or read about our dementia companion care service.
Frequently asked questions
Can dementia get worse suddenly?
Dementia itself usually changes over months, though vascular dementia can drop in steps and Lewy body dementia can swing within hours. A sudden change is often caused by something else, such as an infection, a stroke or a medicine. The NHS says to get medical help immediately when someone suddenly becomes confused.
Why does dementia get worse at night?
This is called sundowning. The Alzheimer’s Association links it to tiredness at the end of the day, a disrupted body clock, low light and shadows, and picking up on others’ stress. A regular routine, daylight, a lighter evening meal and good evening lighting can help. Tell the doctor, since infections, incontinence or sleep apnea can make nights worse.
How fast does dementia progress?
It varies by person and type. The Alzheimer’s Association says the middle stage of Alzheimer’s is typically the longest and can last many years. Vascular dementia may worsen in steps every few months or years, according to the NHS. Ask the doctor what to expect for your parent.
When does a dementia patient need 24 hour care?
There is no set point. It is often when your parent cannot safely be left alone: wandering, getting up at night, falls, or needing help with all personal care. The NHS says that in the later stages a person is likely to need constant care and attention. Talk to the doctor and your local ADRC about the options.
Does dementia keep getting worse?
Yes. Most types of dementia are progressive. The NHS says vascular dementia symptoms tend to get worse over time, and the Alzheimer’s Association says dementia with Lewy bodies gets worse over time. The pace varies from person to person, and the NHS says treatment can help slow vascular dementia.
Still have questions?
Talk it through with us. A free call about your family's situation, with no obligation.
Call (689) 333-6079- Screened for dementia care experience
- Florida ADRD training before the first visit
Sources
- Alzheimer’s Association: Stages of Alzheimer’s
- Alzheimer’s Association: Vascular Dementia
- Alzheimer’s Association: Dementia with Lewy Bodies
- Alzheimer’s Association: Sleep Issues and Sundowning
- Alzheimer’s Association: Wandering
- Alzheimer’s Association: Late-Stage Caregiving
- NHS: Symptoms of Dementia
- NHS: Vascular Dementia Symptoms
- NHS: Dementia with Lewy Bodies Symptoms
- NHS: Sudden Confusion (Delirium)
- CDC: Heat and Older Adults (Aged 65+)
- Florida Department of Elder Affairs: Alzheimer’s Disease Initiative
- Florida Department of Elder Affairs: Elder Helpline
- Florida Department of Elder Affairs: Aging and Disability Resource Centers
Want a companion screened for dementia care experience?
We'll send 3 caregiver video profiles within 48 hours, so you can watch their video interviews before you decide. $35 an hour, minimum 25 hours a week, no long-term contract. Stop anytime with 7 days’ notice.
