Guest post by Emma Roy
Quick Snapshot
“Can the way you respond change how secure another person feels in that moment? This guide helps you recognise emotional distress, respond with compassion, choose meaningful support, and know when professional help matters—so every person with dementia or Alzheimer’s feels safer, valued, and truly understood.”
Memory may fade, language may become less reliable and familiar surroundings may sometimes feel confusing, but emotional needs do not disappear. A person with dementia may forget why a conversation began but still feel the embarrassment, fear or comfort it created. This is why supporting mental wellbeing requires more than keeping someone occupied or repeatedly reassuring them. It involves understanding what an emotional or behavioural change may mean, identifying the cause and responding in a way that protects the person’s identity and sense of control.
As evening arrives, some people become anxious and repeatedly ask to “go home” despite being in the place where they live. In effective alzheimer’s care, correcting them may not solve the problem because the request may not be about the building itself. “Home” may represent safety, family, an earlier period of life or relief from an environment that has become difficult to understand.
Effective support begins with a more useful question than “How do we stop this behaviour?” Ask instead:
What is this person experiencing, what may have triggered it, and what would help them feel safer without taking away their dignity?
Distress rarely has a single cause. It often develops through an interaction between changes in the brain, emotional experiences, physical health and the surrounding environment.
Neurological changes can reduce a person’s ability to interpret situations accurately, regulate emotions, recognise faces, find words or understand another person’s intentions. An ordinary care task may therefore feel intrusive. A reflection in a mirror may be mistaken for another person, while a dark rug may appear to be a hole in the floor.
Psychological distress may arise from grief, fear, loss of independence or awareness that familiar abilities are becoming more difficult. A person in the early stages may worry about making mistakes or becoming dependent. Someone with more advanced dementia may not understand why they are being assisted with dressing or bathing and may experience that help as a threat.
Physical discomfort or illness may also be expressed through pacing, shouting, withdrawal or resistance when the person cannot clearly explain what is wrong. Changes in behavior should therefore be considered possible signs of an unmet physical need rather than automatically attributed to dementia.
Environmental pressure can intensify these difficulties. Busy environments filled with noise, unfamiliar caregivers, harsh lighting, or constant activity can overwhelm someone who has difficulty sorting through multiple sensory inputs.
The NHS recommends checking for possible triggers and underlying causes of behavioural changes, including physical discomfort, health problems and environmental pressures, rather than assuming that the behaviour is simply part of dementia.
These conditions can produce similar outward behaviour, but they are not interchangeable.
• Depression
Depression may involve persistent sadness, tearfulness, hopelessness, irritability, disturbed sleep, appetite changes, loss of enjoyment or statements suggesting that life is no longer worthwhile. However, diagnosis can be complicated when the person has difficulty describing feelings.
Look for sustained change rather than one quiet afternoon. Has the person stopped responding to activities they previously enjoyed? Are they waking unusually early, eating less or appearing distressed across different settings?
Depression should not be dismissed as an inevitable reaction to dementia. It deserves professional assessment, particularly when symptoms persist, interfere with eating or sleeping, or include thoughts of self-harm.
• Anxiety
Anxiety may appear as repeated questioning, following a carer from room to room, fear of being left alone, pacing, refusing to leave home or repeatedly checking doors and belongings.
The repeated question may not be a request for new information. It may be an attempt to regulate fear. Answering with increasingly detailed explanations can therefore fail because the emotional need—not the factual question—remains unresolved.
• Apathy
Apathy is primarily a loss of motivation, initiation or interest. The person may sit passively and rarely begin activities, yet they may not appear sad.
This distinction matters. A person with depression may feel unable to enjoy an activity, whereas someone with apathy may enjoy it once another person gently helps them begin. Instead of saying, “Would you like to go outside?” a carer might bring the person’s coat, sit beside them and say, “Let’s walk to the garden together.”
• Loneliness
A person can be surrounded by carers and still feel lonely. Task-based contact—giving medication, preparing meals or assisting with washing—is not the same as emotional connection.
Loneliness does not always look like sadness. It may show itself through repeated requests to go home, searching for deceased family members, or needing frequent reassurance. The person may be expressing a need for familiarity, belonging or secure attachment rather than literally asking for a different building.
• Delirium
Delirium develops quickly and affects a person’s attention, awareness, and ability to think clearly. Unlike the gradual progression associated with dementia, delirium usually develops over hours or days and may fluctuate significantly.
Sudden confusion, unusual sleepiness, marked agitation, hallucinations, reduced attention or an abrupt decline in daily ability require urgent medical assessment. Infection, dehydration, medication changes, pain and other illnesses may trigger delirium. It should never be assumed that a rapid deterioration is simply dementia becoming worse.
When distress is repeated, memory alone is not reliable enough to identify its cause. A short written record can reveal patterns that are otherwise missed.
Record three elements:
– Trigger: What happened immediately before the distress? Note the time, activity, environment, people present and physical circumstances.
– Response: What exactly did the person do? Replace labels such as “aggressive” with observable details such as “pushed the carer’s hand away and shouted during dressing.”
– Outcome: What happened next? Record how others responded, whether the situation intensified and what eventually helped.
For example, a person may appear to “refuse personal care every morning.” A closer record might reveal that resistance occurs only when they are awakened quickly, the bathroom is cold and a carer begins removing clothing without first explaining the task.
The response can then be changed: allow more waking time, warm the room, introduce each step, preserve privacy and offer limited choices.
This method does not diagnose illness, but it helps families and professionals distinguish predictable triggers from unexplained changes that need clinical investigation.
Strategies that help in early dementia may become confusing or demanding later.
• Early-stage dementia
A person may still recognise changes in memory and reasoning. Emotional support should acknowledge, rather than minimise, the fear and frustration this can create.
Include the person in decisions, discuss future preferences while they can communicate them clearly and use practical systems that preserve independence. Phone reminders, written plans, labelled storage and simplified financial safeguards may be helpful.
Adapted psychological therapy may also be appropriate. A Cochrane review of 29 studies involving 2,599 people with dementia or mild cognitive impairment found that cognitive behavioural therapy-based interventions probably produce small improvements in depression, quality of life and daily functioning. The findings did not clearly show that anxiety improved, and the study mainly involved people with mild or moderate dementia. The findings should therefore not be applied automatically to severe dementia.
• Moderate dementia
At this stage, lengthy explanations and open-ended questions may place too much pressure on memory and language.
Use one instruction at a time, demonstrate tasks and offer two concrete choices. Reduce the number of transitions in the day and allow more time for the person to process what is happening.
Emotional validation becomes increasingly important. Correcting inaccurate statements may increase distress without improving understanding.
• Advanced dementia
Mental wellbeing must often be assessed through non-verbal communication. Facial expression, muscle tension, vocalisation, sleep, appetite, movement and willingness to accept care may communicate comfort or distress.
Use familiar voices, gentle pacing, music, touch when welcomed, preferred scents and simple sensory experiences. Activities should no longer be judged by completion. Listening to part of a familiar song, feeling fabric, holding a meaningful object or watching movement outdoors may provide connection without requiring explanation or recall.
An activity should meet an identifiable emotional or functional need.
A familiar, manageable task—such as sorting envelopes for a former office worker—may feel more meaningful than completing an unfamiliar craft.
Before choosing an activity, ask:
The Alzheimer’s Society Activities Handbook recommends matching activities to the individual’s interests and abilities.
Evidence does not support presenting any single activity as a cure for depression, anxiety or cognitive decline. Personalised activity is best understood as one part of a broader support plan that also considers health, relationships, environment and professional treatment where necessary.
General instructions to “speak calmly” are not always enough. Carers often need language they can use immediately.
• When the Person Repeatedly Asks the Same Question
Instead of:
“It’s understandable that it’s hard to remember. The appointment is tomorrow, and I’m happy to remind you again.”
Try:
“You seem worried about the appointment. I will be with you, and we have everything arranged.”
This responds to the anxiety beneath the repetition.
• When the Person Wants to See Someone Who Has Died
Instead of repeatedly announcing the death, try:
“You’re thinking about your mother. She was very important to you. What did you enjoy doing together?”
Respond to the emotion behind the words instead of concentrating on whether every detail is accurate.
• When Personal Care Is Resisted
Try:
“You’re safe. I’m going to help with your sleeve first. Do you feel like wearing the blue top or the green one today?”
If distress rises, pause when it is safe to do so. Continuing forcefully may teach the person that care interactions are threatening.
• When the Person Says, “I Want to Go Home”
Try:
“Home feels important to you. What part of it do you wish you could experience again?”
The answer may reveal a need for a spouse, a familiar task, a pet or a sense of safety.
• When the Person Believes Something Inaccurate
Avoid beginning with, “That is not true.”
Try:
“That sounds frightening. You are safe with me. Let’s sit somewhere quieter and work out what you need.”
Emotional reassurance should come before factual correction.
Carer stress does not remain contained within the carer. It can alter voice, facial expression, pacing and decision-making.
A tired carer may speak more quickly, repeat an instruction with increasing frustration or complete tasks for the person because waiting feels impossible. The person with dementia may detect the tension without understanding its cause. They may then become anxious, resistant or agitated, creating a cycle in which both people feel increasingly threatened.
Reducing this pressure requires more than telling carers to practise self-care.
Families can divide responsibilities by task rather than relying on vague offers of help. One person might manage medical appointments, another could prepare meals and another could provide two hours of regular companionship.
Before a difficult care task, the carer can pause, lower their shoulders, slow their speech and decide which parts are genuinely necessary at that moment. Not every refusal needs to become a confrontation.
After a difficult episode, carers should review the trigger rather than blaming themselves or the person. One useful question is, “What can we learn from this for next time ?” is more productive than asking, “Why are they being difficult?”
WHO’s iSupport programme provides structured exercises covering dementia education, the caregiving role, carer wellbeing, everyday care and responses to behavioural changes. Its purpose is to reduce the physical and psychological impact of caregiving while improving carers’ practical skills.
Seek Prompt Medical Advice
Contact a healthcare professional when emotional or behavioural changes are persistent, severe, unexplained or interfering with essential daily needs, including:
Seek Emergency Help Now
Immediate emergency help is necessary when there is:
Supporting mental wellbeing begins with seeing the person, not just the symptoms. Observe what changes, respond to distress with patience, and adapt care to the person’s history, abilities and needs. Small choices—slowing down, listening closely and preserving dignity—can create safety and connection.
Use what you notice to guide each response, involve professionals when concerns persist, and ask yourself: does this person feel understood, respected and secure right now..??
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