Why dementia rarely starts with forgetfulness: 10 early signs most people don’t recognize
Ordinary activities such as bathing or sleeping can quickly turn into a battle of wills for caregivers and people with dementia. In those exasperating moments, your loved one is trying to tell you something, experts say.
What Is End-Stage Lewy Body Dementia?
End-stage Lewy body dementia is the final stage of the progressive disease and is characterized by a worsening of cognitive symptoms, according to the Lewy Body Dementia Association, Inc. Typically, death from Lewy body dementia occurs within five to seven years of initial diagnosis. There is no cure for the disease.
As Lewy body dementia progresses, a gradual and sometimes rapid decline occurs, notes LBDA. Behavioral and cognitive symptoms become more dramatic, generally due to infection, pain or other medical issues, although some treatments improve symptoms for a period of time.
Initially, Lewy body dementia presents as cognitive impairment, acting out dreams, visual hallucinations, sleep disturbances and motor problems such as difficulty with movement and balance, tremor, and rigidity, advises LBDA. These symptoms become progressively worse, although mental abilities can take an unpredictable course in fluctuation.
In its later stages, Lewy body dementia causes difficulty in basic self-care and daily living activities, including toileting, dressing and bathing, according to LBDA. Sufferers may have difficulty swallowing, talking and walking, or may find it difficult to participate in activities or communicate with others.
Aspiration pneumonia and weight loss are common in later stages of the disease, and the sufferer may require constant care to ensure that basic needs are met. Hospice care is often required for late-stage Lewy body dementia patients. “Dementia-related behaviors are a form of communication,” says Monica Moreno, senior director for Care and Support at the Alzheimer’s Association.
Needs, emotions or surroundings can trigger troublesome behaviors. As the person with dementia loses the ability to communicate, the caregiver has to become a detective to understand what’s really going on, Moreno says. That sleuthing requires briefly hitting the pause button when a loved one is resisting, rather than plowing ahead with a task.
Here’s how to assess and address eight common dementia-related behaviors.
1. Repeating the same questions
A loved one who asks the same question every few minutes doesn’t remember asking it, let alone your answer. But the person may remember that something is on the agenda, which can produce anxiety. Have the answers in written form to minimize questions.
“Keep a calendar or whiteboard, and write things down so that the person can refer to that,” suggests Helen C. Kales, M.D., a geriatric psychiatrist and chair of the Department of Psychiatry and Behavioral Sciences at the University of California Davis Health. “Say to them, ‘We’ve talked about this and whenever you have a question, look right here.’ ”
Because boredom may be a factor, Kales suggests giving the person simple tasks like folding laundry, tearing the lettuce for a salad or setting the table.
2. Wandering
Six out of 10 people living with dementia wander at least once, according to the Alzheimer’s Association. For some, the urge to wander often occurs later in the day because of sundowning. But the reasons for wandering are generally a change in location or an unmet need, says Ardeshir Hashmi, M.D., section chief of Cleveland Clinic’s Center for Geriatric Medicine.
If you are visiting another person in their home or staying somewhere new, your loved one may find it disorienting, triggering agitation. Bring familiar objects or favorite possessions to reassure and anchor the person in a new place.
Most people with dementia can answer yes or no questions, so ask them what they need. Is it the toilet? Maybe they’re hungry or in pain. To keep the person safe, lock doors and use tracking devices that alert you by phone when the person ventures too far, Hashmi says.
3. Resistance to bathing
Struggles over bathing are often about privacy and preserving dignity, Kales says. Close the bathroom door and have towels handy to wrap the person in as soon as they get out.
“Give them a soapy washcloth to wipe themselves so they can maintain some independence,” Moreno says.
The caregiver’s gender may be the problem. For example, a woman may prefer her daughter to bathe her instead of a male relative.
Poor depth perception or a fear of falling can also trigger resistance, so consider installing a shower seat and a hand shower for easier bathing. Family caregivers have the benefit of knowing the person’s past habits. If the person always bathed at night, preferred showers over baths and liked cooler water temperatures, try those options first.
“Bathing doesn’t have to be daily,” Hashmi says. A few times a week is fine, and they can even be sponge baths.
4. Incontinence
Someone in the middle or late stages of dementia may not know where to find the bathroom or even recognize the need to go. Proactively staying out of trouble is better than automatically using incontinence products, Hashmi says. Instead, take the person to the bathroom every few hours and have them wear easy-to-remove clothes.
If your loved one needs incontinence undergarments and resists wearing them, investigate potential causes. Is the disposable underwear causing discomfort?
“Maybe it’s rubbing … against their leg, or they don’t know how to use this undergarment,” Moreno says. “Sometimes it’s addressing their feelings about loss of independence.”
Have everything ready if they need to be changed, to keep the exercise as short as possible, and “connect to the next activity” so they know what to look forward to, Hashmi says.
5. Insomnia
Because dementia can disrupt the sleep-wake cycle, it’s important to develop good sleep habits: Allow one short nap a day, eliminate electronic devices before bedtime and put the person to bed at the same time each night. Natural light helps regulate circadian rhythms, so make sure they get outside during the day, preferably in the morning, Kales says. Don’t overlook obvious culprits, such as medications or caffeine, and avoid sleeping pills because they worsen confusion and sundowning in dementia patients, Hashmi says.
6. Delusions, hallucinations and paranoia
Dementia often affects a person’s reality. They may have false beliefs contradicted by reality (delusions), hear or see things that aren’t real (hallucinations) or suspect someone is harming them (paranoia).
If the person’s reality isn’t hurting or upsetting them, move with it. “You don’t have to say it’s true, but don’t confront the person,” Kales says. If the thoughts are upsetting or harmful, see if something in the surroundings might be setting your loved one off.
Moreno recalls one woman who was frightened because she kept seeing someone in the house. The family realized it was her own reflection. When the mirrors were removed, the behavior stopped.
If the behavior endangers your loved one or anyone else, get it evaluated. Medications may be contributing factors and so can poor vision or hearing problems, says Eilon Caspi, a gerontologist and an assistant research professor at the University of Connecticut.
7. Why dementia patients think they’re always sick
Dementia patients may think they are always sick due to a combination of cognitive decline, emotional distress, and the physical symptoms associated with the disease. The brain’s shrinkage and changes in brain function can lead to confusion and a distorted perception of reality, causing individuals to feel ill or unwell. Additionally, the emotional impact of dementia, such as depression and anxiety, can exacerbate these feelings. It is essential for caregivers to understand these perceptions and work with healthcare professionals to address the underlying issues.
8. Sexual inhibitions
Lack of inhibitions can accompany dementia, and a person’s confused state of mind often makes matters worse. They may be unaware of their surroundings or confuse the caregiver for someone else.
Protecting the caregiver from harassment is paramount. Finding a caregiver whose gender doesn’t attract the person being cared for is one solution, Hashmi says. Antidepressants, which can reduce that sexuality, are another.
“Sometimes, caregivers feel squeamish about sexual behavior,” Kales says. Ask yourself who is it affecting,
9. Why does dementia patients want to go home – Search
it usually reflects a deep emotional need for safety, comfort, and familiarity rather than a literal desire to leave their current location. “I Want to Go Home”: Why People With Dementia Say It and 8 Caregiver Moves That Actually Help
Emotional and Cognitive Factors
For many people with dementia, “home” is more a feeling than a physical place. It represents security, comfort, and a sense of self that may feel lost due to cognitive decline. Dementia affects memory, perception, and emotional processing, causing patients to experience their surroundings as unfamiliar or unsafe, even in their own homes. Requests to go home often arise from anxiety, fear, loneliness, or confusion, and may increase during periods of stress, fatigue, or overstimulation.
Neurological Causes
Dementia, including Alzheimer’s disease, damages the hippocampus and parietal lobes, which are critical for spatial awareness and navigation. The hippocampus helps build mental maps of environments, while the parietal lobe allows understanding of one’s position relative to objects. When these areas deteriorate, familiar rooms or surroundings can feel unrecognizable, prompting the patient to seek a place they perceive as safe—often expressed as wanting to go home. ScienceInsights
Behavioral and Memory Influences
- Disorientation and Memory Loss: Patients may believe they are still living in a previous home or time period, reflecting memories from their past.
- Wandering and Searching Behavior: Some may physically try to leave, seeking familiar cues or satisfying unmet needs like hunger or the need to use the bathroom.
- Reliving Past Routine: Requests may be linked to past responsibilities or routines, such as going to work or caring for children.
- Response to Overstimulation: Loud noises, multiple conversations, or unfamiliar visitors can trigger a desire to escape to a perceived safe place. CareYaya
Caregiver Strategies
- Understanding that “home” is a symbol of comfort and security allows caregivers to respond with empathy rather than correction. Effective approaches include: elderloveusa.org+1
- Validation: Acknowledge the feeling behind the words, e.g.,
- “You miss home. Tell me what you loved about it.”
- Gentle Redirection: Engage the patient in familiar activities or sensory experiences
- Environmental Modifications: Create a calm, familiar environment to reduce anxiety.
- Routine and Familiarity: Maintain consistent daily routines to help patients feel secure. By addressing the emotional and cognitive needs rather than focusing on the literal meaning of “home,” caregivers can reduce distress and improve quality of life for dementia patients. HelpDementia.com
- As with managing all dementia behaviors, Kales says, “trial and error is the way to go. HelpDementia.com
10. Loss of appetite
- Chewing and swallowing become more difficult as dementia progresses. But taste buds can also change so that even favorite dishes are rejected. When you’re trying to feed your loved one a healthy meal, but they aren’t eating:
- Rule out a dental problem, like a painful tooth.
- Make mealtimes an activity and a way to connect with other people, Moreno says. Someone with dementia shouldn’t eat alone.
- Experiment with texture. Choose softer foods or those that can be cut into smaller bites.
As with managing all dementia behaviors, Kales says, “trial and error is the way to go.
Caregiver Training: Aggressive Language/Behavior | UCLA Alzheimer’s and Dementia Care Program
Dementia is preventable through lifestyle. Start now. | Max Lugavere | TEDxVeniceBeach