What is BPSD?

In the later stages of dementia, most people with dementia will develop behavioural and psychological symptoms of dementia (BPSD).  It refers to a wide range of non-cognitive disturbances that commonly occur in people with dementia.

Symptoms of BPSD? 

BPSD includes symptoms that affect behaviour, mood, perception and personality, such as:

 Behavioural symptoms:

• Agitation or aggression
• Wandering or pacing
• Screaming or vocal outbursts
• Repetitive behaviours
• Disinhibition
• Resistance to care

Psychological symptoms:

• Depression
• Anxiety
• Delusions (false beliefs, e.g., “my spouse is stealing from me”)
• Hallucinations (seeing or hearing things that aren’t there)
• Paranoia
• Sleep disturbances

These can be very distressing for the carer and for the person with dementia. 

It’s very important in the first instance, to rule out or treat any possible underlying causes, such as: 

• uncontrolled pain 
• untreated depression 
• infection, such as a urinary tract infection (UTI) 
• side effects of medicines 

If you’re caring for someone who’s showing these behaviours, it’s important to try to understand why they’re behaving like this, which is not always easy. 

You may find it reassuring to remember that these behaviours may be how someone is communicating their feelings or needs (see Fundamental Needs & Communication tabs for further information).  

Sometimes these behaviours are not a dementia symptom. They can be a result of frustration with not being understood or with their environment, which they no longer find familiar but confusing. 

(Source Coping with dementia behaviour changes – NHS) 

How to support someone with symptoms of BPSD 

In the first instance it can be helpful to work out if there are any triggers to the behaviours. 

• Do some behaviours happen at a certain time of day? 
• Is the person finding the home too noisy or cluttered? 
• Do these changes happen when a person is being asked to do something they may not want to do? 

Keeping an accurate diary or ABC charts for 1 to 2 weeks can help identify these triggers. 

If the change in behaviour comes on suddenly, the cause may be a health problem. The person may be in pain or discomfort from constipation or an infection. Ask a GP for an assessment to rule out or treat any underlying cause. 

Other things that can help include: 

• providing reassurance 
• a quiet, calming environment 
• activities that give pleasure and confidence, like listening to music or dancing 
• therapies, such as animal-assisted therapy, music therapy and massage 

Listed below are some common behavioural changes we may see with some recommendations of things you may want to consider:

(taken from Coping with dementia behaviour changes – NHS)

• Repeating the same question or activity

Repeating the same question or activity may be a result of memory loss where the person cannot remember what they’ve said or done. It can be frustrating for the carer, but it’s important to remember that the person is not being deliberately difficult. 

Try to: 

• • be tactful and patient 
  • help the person find the answer themselves, for example, if they keep asking the time, buy an easy-to-read clock and keep it in a visible place 
  • look for any underlying theme, such as the person believing they’re lost and offer reassurance 
  • offer general reassurance, for example, that they do not need to worry about that appointment as all the arrangements are in hand 
  • encourage someone to talk about something they like talking about, for example, a period of time or an event they enjoyed 
  • try not to react negatively to the repetitive behaviour as frustrating as is may be, this can worsen the behaviour.

• Restlessness and fidgeting

People with dementia often develop restless behaviours, such as pacing up and down, wandering out of the home and agitated fidgeting. 

Try to: 

• • make sure the person has plenty to eat and drink 
  • have a daily routine, including daily walks 
  • accompany them on a walk to shops or consider tracking devices and alarm systems (telecare) to keep them safe 
  • give them something to occupy their hands if they fidget a lot, such as worry beads or a box of items that mean something to them 

• Sleep disturbance

Dementia can cause problems with the person’s body clock or sleep-wake cycle. A person with dementia may get up repeatedly during the night, unaware that it’s night time.  

Try to:

• • provide plenty of activity and exposure to daylight 
  • make sure the bedroom is comfortable and provide a nightlight or blackout blinds if needed 
  • cut down on caffeine and alcohol in the evening 

• Following a partner or carer around

Dementia makes people feel insecure and anxious (see Anxiety tab for further information). They may “shadow” their partner or carer as they need constant reassurance they’re not alone and they’re safe. 

They may also ask for people who died many years ago, or ask to go home without realising this is their home now. 

Try to: 

• • have the person with you whilst carrying out tasks if appropriate or give them tasks they can do to ‘help’ you 
  • reassure them that they’re safe and secure if they’re asking to go home 
  • avoid telling them someone died years ago and talk to them about that period in their life instead 

• Loss of self-confidence

Dementia can make people feel less confident about going out or doing other activities. This may seem like they’ve lost interest in people or activities they usually enjoy. 

Try to: 

• • remember they may still be interested in an activity but feel they’ll have trouble coping with it 
  • reassure them the activity, or getting there, will be straightforward 
  • explain clearly where they are going and who they may be seeing 
  • consider simpler activities or social occasions as for example, joining in a conversation among a large group of people may be too difficult 

For further information on managing symptoms of BPSD please see below:

Coping with dementia behaviour changes – NHS

What antipsychotic drugs may be prescribed for a person with dementia?

Antipsychotic drugs are sometimes used in dementia care to manage severe behavioural and psychological symptoms—but they come with significant risks and must be prescribed with caution.

The drug with the most evidence to support its use in dementia is Risperidone. It is licensed for short term (up to six weeks) treatment of persistent aggression in people with moderate to severe Alzheimer’s disease when there is risk of harm to the person or others. However, this is only if non-drug approaches have already been tried without success.  

What symptoms do antipsychotics not help with? 

Antipsychotic drugs do not help with other behaviours such as:  

• distress and anxiety during personal care  
• repetitive vocalisations  
• walking about  
• social withdrawal  
• changes in levels of inhibitions (for example, doing or saying things that may be inappropriate).  

These changes are likely to need personalised non drug approaches (see non-pharmacological approaches to managing BPSD tab)

Risks associated with prescribing in dementia

Antipsychotic drugs are a group of medications that are usually used to treat people with Severe Mental Illness (SMI) such as schizophrenia. In some people antipsychotics can eliminate or reduce the intensity of certain symptoms. However, they also have serious side effects. For people living with dementia, these include:  

• Increased risk of death  
• Stroke 
• Drowsiness (so increased risk of falls and fractures and possible reduction in reduced oral intake)  
• Postural hypotension (further increasing risk of falls and fractures due to blood pressure dropping as people stand)  
• Worsening of dementia symptoms  
• Parkinsonism (shaking and unsteadiness)  
• For people with dementia with Lewy bodies or Parkinson’s disease dementia, antipsychotics can worsen the motor features of the condition, and in some cases cause severe antipsychotic sensitivity reactions.  

Benzodiazepines are sometimes used as an alternative to Antipsychotic drugs. However, they also have serious side effects including: 

• drowsiness  
• light headedness  
• confusion  
• unsteadiness (especially in older people)  
• dizziness  
• slurred speech  
• muscle weakness  
• memory problems  
• nausea (feeling sick)  

Doctors prescribe benzodiazepines for anxiety, insomnia and other purposes. However, there is a risk of dependence and interactions with other drugs Experts do not recommend using benzodiazepines for more than 2 weeks.

Alternatives and best practice

Before considering antipsychotics, the following should be done:

• Rule out physical causes (e.g. pain, infection, constipation)
• Try non-pharmacological approaches first (e.g. sensory stimulation, therapeutic touch, environmental adjustments)
• Use the lowest effective dose for the shortest possible time
• Review treatment regularly—typically every 6 weeks

For further information on Antipsychotics & Dementia please see below:

• Alzhiemers Fact sheet 408LP pdf
• Appropriate prescribing of antipsychotic medication in dementia guide pdf
• Coping with dementia behaviour changes – NHS

What is delirium?

A person can have both dementia and delirium at the same time and dementia is the single biggest risk factor for developing delirium.

Here’s a quick summary:

• Dementia is a long-term, progressive condition affecting memory, thinking, and behaviour.
• Delirium is a sudden, temporary state of confusion and altered awareness, often triggered by illness, infection, medication, or environmental changes.

Key Points:

• People with dementia are much more likely to develop delirium, especially during hospital stays, infections, or after surgery.
• Delirium can be hard to spot in someone with dementia because the symptoms—confusion, disorientation, memory issues—can look similar.

It’s important not to assume a sudden change is just “worsening dementia.” Delirium is a medical emergency and often treatable if caught early.Delirium is a sudden and severe disturbance in mental abilities that results in confused thinking and reduced awareness of the environment. It typically comes on quickly—over hours to days—and can fluctuate in intensity throughout the day.

Key Features of delirium:

• Acute onset: Sudden and noticeable change in mental status.
• Fluctuating course: Symptoms often vary in severity over short periods (e.g., worse at night).
• Disturbance in attention and awareness: Trouble focusing, staying on a topic or responding appropriately to surroundings.
• Cognitive impairment: Problems with memory, orientation (to time, place or person), language or perception.
• Possible hallucinations or delusions.
• Often reversible: if the underlying cause is treated.

Managing Delirium

First line treatments for managing delirium are non-pharmacological approaches and could include things like:

• Cognitive Impairment: Regular visits from familiar people (e.g. family and carers), re-orientation to surrounding area or provision of stimulating actives. 
• Dehydration or Constipation: Encourage person to drink
• Infection: Recognise and treat any infection, avoid catheterisation if possible and adhere to infection control procedures on the unit. 
• Immobility: Encourage mobilisation where possible or help person to carry out a range of active movements. 
• Pain: Assess for pain, pay attention to non-verbal signs of pain and administer analgesia if required. 
• Poor Nutrition: Optimise meal-time experience, support with eating & drinking if required and if person has dentures, ensure they are well-fitted. 
• Sleep Disturbance: Avoid performing nursing tasks during the night where possible and reduce noise during sleeping periods. 

If you suspect someone has delirium, it’s a medical emergency. Prompt evaluation and treatment of the underlying cause are critical.

Delirium & Antipsychotics

Antipsychotics are sometimes used to manage delirium, but their role is limited and cautious, depending on the cause and symptoms of the delirium.

Antipsychotics may be used short-term to control severe agitation, hallucinations or delusions that:

• Pose a risk to the patient or others
• Interfere with essential medical care (e.g., pulling out IV lines, not cooperating with treatment)

Important Considerations:

• They do not treat the underlying cause of delirium.
• Should only be used when non-drug approaches fail.
• Doses are typically low and for the shortest duration possible.

Preventing Delirium  

To effectively prevent delirium, a multifaceted approach is crucial. This involves addressing potential causes like dehydration and infection, minimizing the use of urinary catheters and promoting mobility. Furthermore, it’s essential to manage pain effectively, review medications for negative impacts on brain function, ensure adequate nutrition and sleep and enhance staff knowledge about delirium.

1. Address cognitive impairment and disorientation:

• • Ensure access to visual cues like clocks and calendars.
  • Orientate individuals by talking to them and reminding them of their surroundings and the current time.
  • Encourage the use of hearing aids and glasses if needed.

2. Prevent dehydration and constipation:

• • Encourage regular fluid intake to prevent dehydration.
  • Support individuals in managing constipation, including addressing any underlying causes.
  • Consider alternative methods like subcutaneous or intravenous fluids if necessary. 

3. Manage infection proactively:

• • Actively look for signs of infection and treat them promptly.
  • Minimize the use of urinary catheters to reduce infection risk. 

4. Promote mobility and prevent bed rest: 

• • Encourage and support patients to mobilize and engage in active exercises, even if it’s just light movement.
  • Avoid prolonged bed rest during the day whenever possible. 

5. Detect and treat pain: 

• • Actively assess for pain, especially in individuals with cognitive impairments.
  • Ensure pain is effectively managed to prevent it from contributing to delirium. 

6. Review medication:

• • Review medications to identify and minimize those that could negatively impact brain function. 

7. Ensure adequate nutrition and hydration: 

• • Provide nourishing meals and encourage regular fluid intake to prevent dehydration.
  • Ensure dentures are clean and fit well. 

8. Promote Good Sleep: 

• • Optimize the sleep environment by minimizing disturbances and ensuring a comfortable temperature.
  • Consider strategies like relaxation techniques and earplugs to promote sleep. 

9. Enhance staff knowledge:

• • Educate staff about delirium, its risk factors, prevention strategies and management techniques.
  • This includes awareness of the importance of early detection and intervention. 

Hypoactive Delirium

Hypoactive delirium is a subtype of delirium that’s often overlooked because it doesn’t involve the agitated or restless behaviour people typically associate with mental confusion. Instead, it presents as:

• Drowsiness and lethargy: The person may seem unusually sleepy or sluggish.
• Reduced motor activity: They move less and may appear withdrawn or uninterested.
• Quiet confusion: Unlike hyperactive delirium, which is loud and disruptive, hypoactive delirium is subtle—patients may stare into space or seem disconnected.
• Difficulty focusing: Trouble maintaining attention or awareness of surroundings

It can often be mistaken for depression, fatigue, or even normal aging, especially in older adults. Despite its quiet nature, it’s associated with worse outcomes than hyperactive delirium if not recognized and treated.

Common causes can include infections (like UTIs or pneumonia),dehydration or electrolyte imbalances, medication side effects (especially sedatives or opioids), organ failure (e.g., kidney or liver) and advanced age or pre-existing cognitive issues like dementia.

Treatment focuses on identifying and addressing the underlying medical cause, whether that’s adjusting medications, treating an infection, or correcting fluid imbalances.

For further information on delirium please see below:

• Virtual reality training video on what it is like to experience Delirium, Delirium Training Video (Virtual Reality

What are the Fundamental Needs?

Developed in the UK by mental health professionals specializing in dementia, the Newcastle Model is an approach developed to help understanding distressed behaviours in people with dementia. Instead of seeing behaviours as problems to medicate, it encourages caregivers and clinicians to ask:

“What unmet need is this person trying to communicate?”

The model highlights eight fundamental needs that, when unmet, can contribute to challenging behaviours.  People with dementia may not be able to verbalize these needs, so behaviour becomes communication. Recognizing and addressing these needs helps prevent or reduce behavioural challenges.

Physical Comfort 

Things to consider: 

• • How frail is the resident?  
  • Is the resident in any pain?  
  • Are there any diagnosed conditions that could be causing discomfort?  
  • Any difficulties with elimination, do they suffer with constipation, UTIs?  
  • Are they sleeping okay?  
  • What is their dietary intake like? Has this changed recently? Any weight loss noted?  
  • Are they able to express if they are hungry or thirsty? 

Safety 

Things to consider: 

• • Do they feel safe in their environment?  
  • If the resident feels unsafe this can cause distress – is any distress evident?  
  • Does the resident display aggression? If so how is this expressed & managed currently? 
  • Do they feel threatened by other residents or the environment?  
  • Is there increased confusion? 

Positive Touch 

Things to consider: 

• • Does this person accept touch apart from personal care, ie will they seek to hug or hold hands?  
  • Do they feel involved with the home, do they feel they belong?  
  • Do they isolate themselves?  
  • Is reassurance offered and/or accepted? 

Love & Belonging  

Things to consider: 

• • There is a need to feel valued, does this person feel valued/ cared about?  
  • Are they lonely?  
  • Do they mix with others and join in with activities?  
  • Are they asked for an opinion and given a choice? 

Self Esteem  

Things to consider: 

• • Would you say this person is spoken to, not at?  
  • How are they involved in their care?  
  • Are they treated with respect?  
  • How do you support them to maintain their dignity? 

Control Over Their Environment 

Things to consider: 

• • How is their room personalised with their familiar belongings?  
  • Do they have freedom to walk around/go outside?  
  • Do they have freedom of choices?  
  • How is independence encouraged as much as possible? 

Fun  

Things to consider: 

• • What have they previously enjoyed doing, hobbies etc?  
  • Do they involve themselves in activities?  
  • Is there regular times for 1-1 activities if they are unable to process group activity?  
  • Are they asked what they would like to do?  
  • Is their low mood due to them not having any fun/ laughter? 

Occupation & Exploration 

Things to consider: 

• • What was their past employment?  
  • Do they show curiosity about things?  
  • Do they instigate conversation/activities? 

For further information on Fundamental Needs please see below:

Communicating with someone with dementia – NHS

Pain & Dementia

Assessing pain in people living with dementia can be complicated if the individual has difficulty in communicating pain. Some people believe that people with dementia don’t feel pain, but this isn’t true. It can, however, be hard to tell if they are in pain, meaning that it is not treated properly. This can cause discomfort and distress, possibly contributing to what may seem like BPSD. (see tab on non-pharmacological approached to BPSD for further info)

How to know if someone is in pain?

The most obvious way to find out if a person with dementia is in pain is to ask them – but as their condition progresses, they may have difficulty telling you.  They may not be able to describe where the pain is coming from and may say “no” if you ask if they’re in pain.

They might use the wrong words to explain how they feel – for example, saying “injection” rather than “indigestion”.   

It may help to ask specific questions, such as:  

• “Is your arm aching?”  
• “Does it hurt here?”  
• “Does it sting?”  

What might pain look like?

1. Observation and Behavioural Indicators: 

• • Facial expressions: Look for grimacing, frowning, brow lowering or changes in facial expressions indicating distress.  

• • Body language: Observe for guarding a body part, restlessness or changes in body posture.  

• • Vocalizations: Listen for moaning, groaning or increased vocalizations – especially if they are new or worsening.  

• • Changes in behaviour: Note if the person becomes more withdrawn, agitated or changes their eating or sleeping patterns. Sometimes hitting out may be the only way the individual can express their pain or discomfort. 
  • Physical changes: Observe for increased heart rate, blood pressure or changes in temperature or breathing patterns.  

2. Additional Considerations: 

• • Self-report: While self-report is the “gold standard”, it may not be possible in patients with dementia. The individual may be able to express pain sometimes, but not at others or may use phrases unfamiliar to you.  
  • Family and caregiver input: Involve family members or caregivers who are familiar with the patient’s baseline behaviour.  
  • Prioritise pain management: Once pain is identified, implement appropriate pain management strategies, starting with non-pharmacological approaches and progressing to medications if needed.  

You could also try to think back to how they acted when they were in pain prior to their diagnosis, as you may be able to spot similar signs in their behaviour.  

In addition to being aware of changes in the presentation of the person you are caring for, pain can be assessed using validated scales, such as the Abbey pain scale. 

Vascular dementia & pain

Vascular dementia may be associated with increased pain perception. This is thought to be due to brain damage from strokes or other vascular events impacting pain processing pathways. While pain is not a primary symptom of VaD, it can be a significant issue for individuals experiencing this type of dementia.  

Ways to treat or manage pain

If pain is identified as a problem for your resident a review by their GP would be the most appropriate course of action in the first instance. They will be able to advise on any appropriate treatment or management.

For further information on Pain & Dementia please see below:

• Communicating with someone with dementia – NHS

Dementia end of life care – late stage dementia 

Dementia is a progressive, life-limiting condition with no cure, so everyone with dementia will die with or from it. Good end of life care is essential to make sure the person with dementia and their family are well supported.  

Identifying the end stages of life 

Signs that a person with dementia might be approaching the end of life include:   

• reduced appetite: loss of interest in food and drink or refusing it completely   
• increasing frailty   
• weight loss   
• swallowing difficulties (eg coughing/ throat-clearing; taking a long time to chew food; choking; storing food in their mouth)   
• frequent infections   
• reduced mobility, perhaps requiring care in a bed or chair   
• frequent falls   
• reduced communication   
• becoming withdrawn and less aware  
• agitation/ restlessness   
• drowsiness/ sleeping more   
• incontinence   
• needing help with most daily activities   

However, these may also be signs of another condition that could be treated, like pain or delirium. If you are unsure, it is worth consulting the person’s GP. 

End of life care for a person with dementia 

Whether a person has dementia alone or other health conditions alongside, it is essential that they receive supportive, respectful end of life care. This often involves a shift away from treatments that may cause distress or have limited benefit, focusing instead on comfort.   

Making clear plans about how the person with dementia will be cared for will help everyone support them in the best way possible and give family and friends peace of mind. If possible, the person themselves should be involved in these decisions.  

You may wish to consider:  

• an advance care plan: this includes how the person would like to be cared for and where they would prefer to die  
• ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) document. The ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they are not able to make decisions or to express wishes. See here for further information on ReSPECT – ReSPECT | Resuscitation Council UK

You can ask the GP or a dementia specialist Admiral Nurse for advice on putting these together. 

If the person with dementia has not previously made their wishes known and now lacks the mental capacity to do so, other people may need to make decisions on their behalf, in their best interests. 

Things to consider for the person when approaching end of life

• Resuscitation 

Deciding that someone should not be resuscitated if their heart stops can be extremely difficult. But resuscitation is often unsuccessful for a person with advanced dementia and could cause distress and trauma.  

For this reason, in consultation with the person with dementia (if possible) and their family, a health professional may suggest putting a ‘Do not attempt CPR’ (DNACPR) order in place. The NHS has more information that may be helpful (see here for more information Do not attempt cardiopulmonary resuscitation (DNACPR) decisions – NHS) 

• Eating and drinking at the end of life 

At the end of life, people may have a reduced appetite or not want to eat or drink at all. This can be hard to accept, but it is a natural part of the dying process.   

Invasive interventions like tube or drip feeding are unlikely to extend the person’s life and may cause distress. Instead, their care team might suggest focusing on giving food and drink for comfort and enjoyment, rather than nutrition.   

For example, you could:   

• • carefully offer food and fluids from a teaspoon   
  • offer favourite foods or those with an appealing taste and texture   
  • give just a few mouthfuls at a time   
  • use ice chips or artificial saliva spray to keep their mouth comfortable   
  • ask the person’s care team for a referral to a speech and language therapist if they have difficulty swallowing   

• Infections 

Frequent infections are common towards the end of life, especially chest infections, pneumonia and urinary tract infections (UTIs).   

It is important to consult the person’s GP if they are showing signs of infection. If they can still swallow, they may be prescribed antibiotics to be taken by mouth which could help to relieve their symptoms. However, the GP may feel that antibiotics are not appropriate – for example, if the person has swallowing difficulties and antibiotics would have to be administered by drip – and prescribe other types of medication to keep them as comfortable and peaceful as possible. 

• Frailty, mobility and falls 

In the later stages of dementia, many people become increasingly frail and experience mobility problems and falls.   

Family and the person’s care team may want to discuss whether it is right for them to go to hospital if they fall. For example, if they have a suspected fracture or other serious injury, they will need to be assessed in hospital. Otherwise, it may be possible to support them to stay at home or in their care home.   

Becoming frail and less mobile may lead to other health problems – for instance, if the person spends long periods in a chair or bed, they may develop constipation and pressure sores. Their GP may refer them to a district nurse for treatment and advice.   

• Emotional care

Although the person with dementia may not be able to express their feelings, it is important that they feel loved, safe and secure. You could try:  

• • using scents that they find appealing such as a favourite perfume, aftershave or soap   
  • looking at photos together   
  • playing music   
  • giving them a gentle hand massage   
  • compiling a memory box to look through and handle together   
  • brushing their hair   
  • offering small amounts of their favourite food and drink   
  • giving them something comforting to hold, such as a fluffy blanket or soft toy   
  • talking about happy occasions in their past   
  • compiling a life story: a record of the person’s past and present life, likes and dislikes and future wishes which you can look at together and share with professionals and carers to help them better understand and support the person  
  • Faith, spirituality and culture at the end of life 

It is important that any religious, spiritual or cultural beliefs and values are respected at the end of life. For example:   

• • If the person with dementia follows a religion, a visit, blessing or prayer from a religious leader may provide comfort   
  • If their religious or cultural community has rituals around the end of life (eg receiving the last rites) they may need reassurance that these will be followed   
  • There may be particular people that they want to see before they die to ensure they feel at peace   

You could include this information in their care plan or life story.   

Sources of support 

Specialist Admiral nurses can be a great resource should you require any support with someone who is in coming to the end of their life. More information can be found by clicking the Admiral Nurses link under the ‘useful links’ tab or by clicking here: What is an Admiral Nurse and how can they help? – Dementia UK

For further information on End of Life Care please see below:

Alzheimers fact sheet – 531 End of life care 

Continence & Dementia

Incontinence may occur as people age and people with Dementia may no longer recognise the need to go to the toilet or recognise when they may be soiled, this can be concerning for all involved with the person, as well as the person. 

Personal care can be problematic with older people as they want to preserve their dignity and may not accept assistance readily, staff need to work towards preserving dignity and support in a way that minimises anxiety.  

This may need to include keeping care in a routine approach, such as predictable times i.e. following meals and may also include reminders to the person.

Things to look out for

Staff may need to look out for any verbal or visual cues in the person that would show they may need to go to the toilet such as: 

• Pacing 
• Playing with clothes 
• Becoming more agitated 

Things that could help

Environmental factors to aid someone may need to be considered such as using bright colours on toilet doors and pictures of a toilet on the door, even leaving the door ajar so the toilet can be seen. 

Also, any equipment that may be required such as grab rails and raised toilet seats should be explored as appropriate. 

Professional support is available if required and continence services can be accessed by referral by health professionals i.e. G.P. or community nurses. They may be able to give advice on products and what is available.

Additional things to consider

Possible underlying medical needs should be explored, such as:

• Prostate problems 
• Medication side effects 
• Constipation 
• Dehydration/lack of nutrition: It can be difficult at times to encourage someone to have adequate fluids but the risk of not encouraging this can lead to an increase in UTIs and increased confusion. 

Finally, remember that dignity for the person needs to be paramount and offer reassurance as required. 

For further information on Continence please see below:

https://www.alzheimers.org.uk/get-support/living-with-dementia/toilet-problems-continence

Sleep & Dementia

We know that sleep changes with age. Both the quality and quantity go through changes and, because of this, older people should not expect to sleep as well as they did when they were younger. 

In general, sleep becomes less deep and people wake up more often during the night or earlier in the morning. These changes are a normal part of ageing and don’t necessarily affect sleep quality or mean you have a sleep disorder.

Sleep and brain health | Age UK 

How dementia affects sleep

• Changes in brain chemistry
  Dementia can reduce melatonin production, the hormone that regulates sleep, making it harder to fall asleep.
• Disrupted body clock
  Damage to the brain’s circadian rhythm centre can cause confusion about day and night, leading to nighttime wakefulness and daytime sleepiness.
• Sundowning
  Some people become more confused or agitated in the evening, which can interfere with settling down for sleep.
• Excessive daytime sleep
  Especially in later stages, people with dementia may sleep more during the day and less at night.
• Sleep disorders
  Conditions like insomnia, sleep apnea and restless leg syndrome are more common in dementia and can worsen cognitive decline.

Disturbed sleep among people living with dementia in nursing homes is widespread and is associated with diseases and all-cause mortality.

How well someone sleeps can be impacted by important related factors including:

• • lighting
  • climatic conditions (temperature or weather)
  • fresh air
  • comfort
  • an individual order
  • room furnishings
  • privacy

Nursing activities at night, such as incontinence care and standardized nursing home processes, such as being woken up at fixed times in the morning for breakfast, also influence sleep.

Things to help aid sleep routines

Individual routines were mentioned as strategies that had a positive influence on sleep and include things such as:

• • the right time for dinner
  • the chosen time to go to bed
  • pre-sleep activities, e.g., taking a walk before sleep to calm down and avoid being upset 

Perspectives on sleep of people living with dementia in nursing homes: a qualitative interview study | BMC Geriatrics | Full Text

Medications for insomnia

NICE guidance clearly states medications to aid sleep in insomnia should be avoided when possible due to significant adverse effects, including dependence, cognitive impairment, falls and fractures. This is particularly important to note for our dementia and care home populations.

Shortchanging Our Sleep: Why Older Adults Deserve Better Insomnia Care | British Geriatrics Society

For further information on Sleep & Dementia please see below:

• • dementia-uk-dementia-and-sleep-leaflet.pdf
  • Dementia and sleep – Dementia UK
  • Shortchanging Our Sleep: Why Older Adults Deserve Better Insomnia Care | British Geriatrics Society
  • Sleep and brain health | Age UK

Medication Compliance & Dementia

Medication non-compliance in dementia patients residing in care homes is a significant concern, with rates ranging from 17% to 100%. This issue is often linked to cognitive impairments, difficulties swallowing, medication side effects and lack of caregiver support. 

Factors Contributing to Medication Non-Compliance

• Cognitive Impairment: Dementia-related memory loss and cognitive decline make it difficult for patients to remember to take medications or understand their purpose.  
• Difficulties Swallowing: Some individuals with dementia may have trouble swallowing pills, leading to medication refusal.  
• Side Effects: Certain medications can cause unpleasant side effects, such as nausea or drowsiness, which may discourage patients from taking them.  
• Lack of caregiver support: Inadequate support from family or professional caregivers can contribute to medication non-compliance.  
• Polymedication: Individuals with dementia often take multiple medications, increasing the complexity of medication management and the risk of errors.  

Strategies to Improve Medication Compliance

• Clear communication: Explain the purpose and importance of each medication to the patient and caregivers, using simple language and visual aids.  
• Simplify medication regimen: Work with a pharmacist to explore options like once-daily dosing or alternative medication forms (e.g., patches or liquid solutions).  
• Environmental adjustments: Ensure a calm and quiet environment during medication administration to minimize distractions and anxiety.  
• Caregiver training: Provide caregivers with adequate training on medication administration techniques and strategies for managing challenging behaviours related to medication refusal.  
• Multidisciplinary approach: Involve a multidisciplinary team, including doctors, pharmacists, nurses, and social workers, to address medication-related issues and provide holistic care.  
• Addressing Underlying Conditions: Treat any underlying conditions, such as depression or pain, that may contribute to medication non-compliance.  

Importance of Addressing Non-Compliance

Medication non-compliance can lead to several negative consequences, including:  

• Worsening of dementia symptoms: Reduced effectiveness of medications can lead to a faster progression of dementia symptoms. 
• Increased hospitalizations: Non-compliance can result in falls, infections or other complications that require hospitalization. 
• Higher healthcare costs: Non-compliance contributes to increased healthcare utilization and costs. 
• Reduced quality of life: Unmanaged symptoms and complications can negatively impact the patient’s overall well-being and quality of life. 

Covert administration of medicines 

Covert administration of medication means giving someone medicine without their knowledge, typically by disguising it in food or drink. It’s a serious and legally sensitive practice used only when absolutely necessary—usually for people who lack the mental capacity to understand or consent to treatment, such as those with advanced dementia.

Covert administration is only likely to be necessary or appropriate where: 

• a person actively refuses their medicine and 
• that person is assessed not to have the capacity to understand the consequences of their refusal. Such capacity is determined by the Mental Capacity Act 2005 and 
• the medicine is deemed essential to the person’s health and wellbeing. 

Covert administration must be the least restrictive option after trying all other options. Carry out a functional assessment to try to understand why the person is refusing to take their medicines. You should also consider alternative methods of administration. 

You should follow the principles of the Mental Capacity Act. If a person is assessed as lacking the relevant capacity, you should follow the best interest process. Record decisions and reflect these in a management plan. Consider how covert medicines, such as sedatives, may be a factor in depriving a person of their liberty. 

The decision-making process must be easy to follow and clearly documented. 

Mental Capacity Act 2005 & Covert Medication Plans

Before considering covert administration, you should test decisions and actions against the five key principles under the Mental Capacity Act 2005 and apply the  Code of Practice. The legal framework for acting and making decisions on behalf of individuals who may lack capacity for certain decisions applies to all people aged over 16. 

1. Every adult has the right to make his or her own decisions. You must assume they have capacity to do so unless it is proved otherwise. You must not assume someone lacks capacity because they have a medical condition or disability. 
2. A person is not to be treated as unable to decide unless all practicable steps to help them do so have been taken without success. You should make every effort to encourage and support people to make the decision for themselves. If you establish lack of capacity, it is important to involve the person as far as possible in making decisions. 
3. A person must not be treated as unable to decide merely because he or she makes an unwise decision. People have the right to make decisions that others might regard as unwise. You cannot treat someone as lacking capacity for this reason. Everyone has their own values, beliefs and preferences which may not be the same as those of other people. 
4. Anything you do or decide for or on behalf of a person who lacks mental capacity must be in their best interests. 
5. When deciding or acting on behalf of a person who lacks capacity, you must consider: 

• • whether there is a way that would cause less restriction to the person’s rights and freedoms of action 
  • whether there is a need to decide or act at all 

Any intervention should be the result of the person’s circumstances. 

Policy 

The medicine policy should include a clear explanation of your covert medicines process. The policy should be specific and up to date. Your staff must read, understand and follow the policy. 

Best interest 

All decisions must be in the person’s best interest. Consider the impact on the person’s health and wellbeing. It must be a multi-disciplinary team decision: 

• you can hold a ‘best interest’ meeting remotely but you should keep clear records of who was involved and what was agreed 
• involve care staff, the health professional prescribing the medicines and a family member or advocate, to agree whether administering medicines covertly is in the person’s best interests 
• the decision must not be taken alone. 

Medicine specific 

You must identify the need for covert administration for each medicine prescribed. Each time new medicines are added or the dose changes of an existing medicine, you must: 

• identify the need again 
• make and record further ‘best interest’ decisions 

This will help to make sure treatment continues to be in the person’s best interest. 

Some medicines can become ineffective when mixed with certain foods or drink. Crushing a tablet or opening a capsule before administration may make its use ‘off-licence’. You must tell the prescriber if medicines are being administered in this way. Altering the characteristics may change a person’s response to the medicine. For example, crushing a tablet designed to release slowly over 24 hours might result in overdose, or it could increase any adverse effects due to the whole dose being released too quickly. 

Always take pharmaceutical advice from an appropriate healthcare professional. You must make sure medicines remain safe and effective when prescribed for administration covertly. 

Regular reviews 

Use covert administration for as short a time as possible. Consider what action you will take if the person has fluctuating capacity. If a person has fluctuating capacity, the service should have a covert plan in place. You must only use the plan when the person lacks capacity. 

You should regularly reassess the need for continued covert administration. Make sure: 

• regular formal reviews are scheduled to confirm whether covert administration is still needed. You should base the timescale of reviews on the person’s individual circumstances 
• that you record and regularly review assessments of mental capacity. 

Records 

Include in a medicine care plan: 

• actions taken to give medicines in the normal manner 
• how medicines will be administered covertly 
• specialist input to show suitability of the method chosen, for example crushed or mixed with certain food or drinks 
• whether the medicine is unpalatable 
• adverse effects (actual or perceived) 
• swallowing difficulties 
• lack of understanding about what the medicine is for 
• lack of understanding of the consequences of refusing to take a medicine 
• ethical, religious or personal beliefs about treatment 
• what to do if the person refuses food or drinks. 

Medicines administration records should clearly record which medicines you administer covertly and when. This is particularly important for people with fluctuating capacity. 

Depression & Dementia  (taken from 444 Supporting a person with dementia who has depression, anxiety or apathy)

Anxiety & Dementia  (taken from 444 Supporting a person with dementia who has depression, anxiety or apathy)

It’s common to feel anxious from time to time. Anxiety is an unpleasant feeling caused by the fear or thought that something bad is about to happen. It can also cause physical changes such as higher blood pressure, heart rate and sweating. 

For most people, these thoughts and feelings are not overwhelming and pass quickly once the source of anxiety is gone. However, for some people these feelings don’t go away. Over time, they prevent the person from doing the things they want or need to do. This is when anxiety becomes a mental health disorder.  

Anxiety is common in people who have dementia. It can also make thinking clearly and remembering things even more challenging. Anxiety seems to be more common in people with dementia who still have good insight and awareness of their condition. It can be particularly common in people with vascular or frontotemporal dementia (FTD) but less so in people with Alzheimer’s disease. 

What causes anxiety in someone with dementia?

In dementia, the most common causes of anxiety include:  

• worrying about difficult issues such as health, money problems or relationships 
• damage to the parts of the brain involved in emotions  
• stress, pain or exhaustion  
• hallucinations (seeing or hearing things that aren’t real) and delusions (believing things that aren’t true)  
• drinking too much caffeine or alcohol  
• side effects of certain medicines  
• stopping a medicine too quickly – particularly one prescribed for a mental health problem

People may also be more likely to have anxiety if they have:  

• a history of traumatic or upsetting events, such as violence, abuse or neglect  
• had anxiety disorders in the past  
• close relations who have had anxiety  
• a personality more susceptible to negative feelings  
• other long-term medical conditions or disabilities.  

People who have had anxiety in the past are more likely to have it again.  

In the later stages of dementia, anxiety may be related more to becoming confused or disoriented. For example, a person may worry that they need to go to work or pick up children from school. They may be cared for by someone they don’t recognise or feel comfortable with.  

The person may be discouraged from doing things they want to do for reasons they don’t fully understand, such as going out of the house, getting up during the night or cooking without someone to help them. In such circumstances it can be natural for someone to become anxious.  

There are things that carers and people around them can do to support a person with dementia to feel less anxious as their condition progresses. See here for further information Supporting a person in the later stages of dementia | Alzheimer’s Society

Symptoms of anxiety

People with dementia who have anxiety may have a range of symptoms. These could include:

• • feeling tired
  • feeling insecure
  • feeling irritable
  • struggling to think as well as usual  

Anxiety can also cause physical symptoms, such as:

• • a fast or irregular heartbeat (palpitations)
  • shortness of breath
  • dizziness
  • nausea (feeling sick)
  • diarrhoea

Anxiety can also cause changes in behaviour, such as:

• • becoming agitated or restless
  • pacing
  • fidgeting
  • harming themselves by repeatedly rubbing, picking or scratching their skin or pulling their hair
  • feeling the need to hoard certain items in the home
  • following a particular person or seeking a lot of reassurance

Treatment for anxiety

Anxiety can be treated with a range of approaches, depending on the person’s needs. If a person with dementia has mild anxiety, it may help to listen to their worries and reassure them. 

Many things can cause anxiety or make it worse. Addressing these as much as possible can help a person to feel less anxious. For example:  

• • if they are worried that they will lose their balance and fall, doing things to stop this from happening can help to make them feel less anxious. This could include encouraging the person to do exercises to become physically stronger, installing grab rails or reducing any clutter in their environment. (see Physio tab for further information on support available)  
  • if pain is contributing to the person’s anxiety, they should have regular pain relief to help them feel more comfortable.  
  • if they are worried about being lonely or cut off from people, their friends and family members can help to make them feel included and remain socially active. 

It may help to adapt a person’s surroundings so it feels calmer, safer and less stressful. For more information see here for more information: Making your home dementia friendly | Alzheimer’s Society

It may also help to create a familiar routine for their everyday life that includes meaningful, stimulating and engaging activities. 

How to support a person with dementia who has anxiety  

Always involve the person with any decisions and choices to make, whilst encouraging them to: 

• • talk about their worries or fears  

• • • Help the person find the right time and space to share their thoughts.  
    • If something very upsetting or traumatic has happened recently or in the past, the person may find it helpful to talk about them.

• • continue with treatment  

• • • Keep taking anti-anxiety medication

• • stay active  

• • • Regular physical activity can reduce feelings of anxiety and also help with sleep problems. Where possible, support and encourage them to regularly go outdoors and spend time in natural environments (they may need support to do this).  
    • Take part in group activities, such as dancing or singing.  

• • eat and drink well

• • • Eat a wide range of healthy foods.  
    • Drink plenty of fluids to avoid dehydration.  
    • Drink alcohol and caffeinated drinks moderately, if at all.  

An important part of any support for these conditions is being able to understand the needs of a person with dementia and communicating as effectively as possible.

For further information on Anxiety & Dementia please see below:

• • Supporting a person in the later stages of dementia | Alzheimer’s Society
  • 524 Understanding and supporting a person with dementia
  • 525LP Changes in behaviour.pdf
  • 444 Supporting a person with dementia who has depression, anxiety or apathy
  • 500-Communicating
  • Communicating with someone with dementia – NHS
  • Making your home dementia friendly | Alzheimer’s Society

Apathy & Dementia  (taken from 444 Supporting a person with dementia who has depression, anxiety or apathy)

Apathy in dementia is a loss of motivation or drive. A person may need a lot of encouragement just to do seemingly small things. Without this support they may well do nothing.  

Some people describe apathy as appearing to ‘give up’ or withdrawing into a shell. It can be very hard to witness as it may feel like losing the person. It can also be difficult to support someone who doesn’t appear to care what happens to them, who doesn’t smile or laugh or seem to have feelings about other people.  

Most people with dementia will develop apathy – particularly during the later stage of the condition. The timing and nature of apathy may differ depending on the type of dementia. 

What causes apathy in a person with dementia?  

There are several reasons why a person with dementia might develop apathy. A very common reason is that it develops gradually as an emotional response to the difficulties of living with dementia.  

Dementia can make many things much harder to do. Simple, everyday activities that used to be easy need a lot more effort and patience – and often things go wrong. This can be very upsetting and can knock a person’s confidence.

For many people, the natural reaction to these negative feelings is to stop trying to do things and allow others to do them instead. While this may feel safer and less stressful, it can end up causing the person to become increasingly isolated from other people and the activities they used to enjoy. They may need a lot of support and encouragement to prevent this from happening.  

For some people with dementia, apathy may be caused by damage to certain parts of the brain involved in motivation. Almost everything we do is driven by decisions about effort and reward. If something is thought to be ‘worth the effort’, this provides motivation which then drives action.  

However, when these thought processes stop working properly, the person may not be motivated to act or get started with a task. For some people, if they do manage to get started, they may struggle to keep going or become overwhelmed as they forget what they were doing and give up. Apathy like this tends to happen more often during the later stage of dementia, although it can happen much earlier in certain types of dementia, such as dementia with Lewy bodies (DLB), Parkinson’s disease dementia and frontotemporal dementia (FTD).  

Symptoms of apathy  

A person with dementia who has apathy will be less motivated to do things. They may:  

• sit for long periods without appearing to do anything rely on other people to suggest and organise activities  
• be less interested in joining conversations or talking to new people  
• not be worried about their own problems  
• have unemotional responses to news or personal events – they may seem to be uninterested or detached  
• have no energy or motivation to do routine or daily tasks, such as brushing their teeth or having a shower  
• sleep a lot during the day.  

Some of these symptoms overlap with those of depression, such as losing interest in things and lacking energy. This is why it can be hard to know whether a person has depression or apathy. The main difference between the two conditions is that depression involves more negative feelings, such as sadness or guilt.  

Treatment & Support for apathy  

Apathy is very difficult to treat with medicines or talking therapies. It is generally thought that the most helpful approach is to support a person to stay as active as possible and help them to keep their confidence levels up. This means creating safe spaces where they can try new activities or talk to people without worrying about getting things wrong and where their dementia is not something to be ashamed of. Even if they find it difficult to take an active role in these activities, they can still benefit from being involved.  

A person with apathy may also be offered an antidepressant medicine. However, there isn’t much evidence that these medicines help people with apathy who have Alzheimer’s disease, mixed dementia or vascular dementia. In fact, there is some evidence that these medications may make apathy worse. 

How to support a person with dementia who has apathy 

• Try to find tasks and activities they will enjoy and find meaningful  

• • Have a basic daily routine to provide a reassuring structure to each day.  
  • Have a weekly routine with a few activities that suit the person’s preferences and personality. This could be a group session or simply visiting the park and seeing grandchildren.  
  • Identify activities that the person has a realistic chance of actively contributing to and feeling in control. This will help to rebuild their confidence.  

• Create a safe space where they are free to get things wrong 

• • Try to apply these principles to day to day life by not getting angry or upset when mistakes happen.  

• Break tasks down into simple steps 

• • Several small steps may be easier than trying to do lots of things at once. 
  • Maintaining simple, everyday skills can help bring a sense of achievement and improve self-esteem.  

• Don’t blame the person for being ‘lazy’, unhelpful or uncaring

• • Apathy is not a conscious choice. 
  • If you feel frustrated, try to remain as calm as you can.  

• Be patient and provide encouragement to keep going  

• • It can be tempting to take over or do a task for someone who is struggling. While this may get things done more quickly, it can also knock their confidence and over time they may lose important skills.  
  • Be positive and focus on what they achieve, not on what they can’t do.  

An important part of any support for these conditions is being able to understand the needs of a person with dementia and communicating as effectively as possible.

For further information on Apathy & Dementia please see below:

• • • 524 Understanding and supporting a person with dementia
    • 525LP Changes in behaviour.pdf
    • 444 Supporting a person with dementia who has depression, anxiety or apathy
    • 500-Communicating
    • Communicating with someone with dementia – NHS
    • Supporting a person in the later stages of dementia | Alzheimer’s Society

Communication & Dementia

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason clearly will change. Communication with the person will become more difficult as their dementia progresses. Their symptoms may mean that they have problems finding the right word or following a conversation.  

Communication for a person with dementia can also be affected by pain, side effects of medication and sight or hearing loss. 

If the person is not able to express themselves they can lose confidence, feel anxious or depressed or become withdrawn. This can be upsetting and frustrating for the person and those around them.  

Your understanding of the person and their needs may help you to work out what they are trying to communicate (see fundamental needs tab for further information on unmet needs and behaviour as a way of communicating this). The person’s behaviour and body language can also give you signals about how they are feeling. When you’re thinking about how to communicate with the person, bear in mind their needs and background – including their cultural and spiritual needs. For example, some people may feel uncomfortable if you’re too close to them when communicating. 

Communication Styles for Dementia Care 

1. Person-Centred Communication 

• • Focus on the individual’s needs, preferences and history. 
  • Use their name frequently and respect their identity. 
  • Speak to them as a person, not just a patient. 

2. Calm and Reassuring Tone 

• • Speak gently, warmly and slowly. 
  • A soft tone helps reduce anxiety and agitation. 

3. Respectful  

• • Treat them with dignity and respect in every interaction. 

4. Consistent and Predictable 

• • Use similar phrases and routines to provide comfort. 
  • Repeating familiar words helps memory and comprehension. 

Communication Techniques

1. Use simple, clear language 

• • One question or instruction at a time. 
  • Avoid open-ended or abstract questions. 

2. Non-verbal cues 

• • Use eye contact, smiles and gentle touch. 
  • Point or gesture when giving directions or choices. 

3. Validation and emotion-focused responses 

• • Acknowledge their feelings, even if their facts are incorrect. 

4. Distraction and redirection 

• • If someone is distressed or fixated on something, gently shift their focus. 

5. Active listening 

• • Nod, smile or give verbal feedback. 

6. Yes/no or either/or questions 

• • These are easier to process than open-ended ones. 

7. Offer choice with limited options 

• • Avoid overwhelming them. 

8. Observe and respond to non-verbal signals 

• • Watch for signs like fidgeting, facial expressions or tone of voice—these can indicate needs, discomfort or emotion. 

9. Use reminiscence to connect 

• • Talking about their past (e.g., childhood, former job, family) often triggers more accurate and comforting memories than recent events. 

Practical Communication Aids for People with Dementia

1. Memory Boxes/ Life Story Boxes 

• • Small boxes filled with meaningful personal items (e.g., photos, old coins, medals, scent bottles) can trigger conversation, emotion and identity. 

2. Reminiscence Books or Scrapbooks 

• • Contain photos, captions and simple stories from the person’s past. 
  • Encourages storytelling and positive emotions. 

3. Communication Boards 

• • Boards with pictures, symbols or words that allow the person to point to needs (e.g., toilet, food, pain). 
  • Very useful for people with limited verbal ability. 

4. Whiteboards or Daily Orientation Boards 

• • Can display the date, weather, schedule or who is on duty today. 
  • Helps reduce disorientation and anxiety. 

5. Talking Mats. 

• • A way to engage with people with communication or cognitive difficulties. 

6. Labelled objects and signs 

• • Labels with words and images on cupboards, doors or objects 
  • Supports independence and wayfinding. 

7. Activity cards 

• • Cards with simple prompts or images for conversation starters, for example an image of a dog with the name ‘Max’ underneath if the person likes to talk about the dog they used to have called Max, a picture of a boat if someone likes to talk about boats, a picture of the persons family etc. These will need to be tailored to the individual and what we know about them and their interests. 
  • Encourages engagement and choice-making. 

8. Use a visual timetable 

• • This can help them understand what to expect and reduces anxiety.    

9. Music playlists  

• • Personalised music taps into emotional memory and can prompt singing, movement or calm. 
  • Can be paired with photos or discussion about the artist/ song era. 

See here for a compilation of short videos on aiding communication with someone with dementia Ian James – YouTube

Dementia and mobility

Mobility and dementia are closely linked, especially as the condition progresses. Dementia doesn’t just affect memory—it can also impact coordination, balance and physical strength making movement more difficult and sometimes risky.

How Dementia Affects Mobility

• Brain changes
  Dementia causes damage to areas of the brain that control motor skills. This can lead to slower, jerky movements and difficulty walking.
• Balance and coordination issues
  People may become more prone to falls due to impaired spatial awareness and muscle control.
• Visual and sensory changes
  Dementia can affect how someone perceives their environment, making navigation harder—even in familiar places.
• Fatigue and apathy
  Reduced motivation or energy can lead to a more sedentary lifestyle, which in turn weakens muscles and reduces mobility.
• Medication side effects
  Some dementia medications may cause dizziness or low blood pressure, increasing fall risk.

Types of Dementia and Mobility Impact

 Supporting Mobility

• • Physical therapy
    Tailored exercises can improve strength, balance and confidence.
  • Assistive devices
    Canes, walkers and grab rails help maintain independence.
  • Home modifications
    Remove trip hazards, add handrails and improve lighting.
  • Routine movement
    Encourage short walks, gardening or chair-based exercises.
  • Professional support
    Occupational therapists and physiotherapists can offer guidance.

What are Sexually Inappropriate Behaviours (SIB) in dementia?

SIB encompasses any verbal or physical sexual behaviour that’s socially inappropriate or out of context. Examples include:

• Sexual talk: Crude comments or unwanted sexual advances.
• Implied acts: Obsession with pornography, frequent requests for genital care.
• Physical acts: Public masturbation, disrobing, groping others without consent.

Why does it happen?

• Brain changes: Damage to the frontal or temporal lobes leads to disinhibition and poor social judgment, especially common in frontotemporal dementia (FTD).
• Misinterpretation of cues: The person may misread caregiving as sexual attention. Sensory deficits and cognitive confusion can cause misinterpretations.
• Unmet needs & environment: Boredom, loneliness, lack of privacy or sexual outlet can contribute. Personal habits before dementia may persist.
• Medical triggers: UTIs, other discomfort, plus certain meds (e.g. levodopa, benzodiazepines) can exacerbate disinhibition.

Non‑pharmacological approaches to managing SIB

• Calm redirection: Redirect attention to an alternative activity.
• Environmental alteration: Increase privacy, reduce overstimulation, separate from triggers.
• Structured routine: Engage in social, tactile or physical activities.
• Address unmet needs: Check for physical discomfort or illness before attributing behaviour solely to sexual intent. (see fundamental needs tab for further information)
• Important: Medications are a last resort, only after exhausting non-pharmacological methods—due to potential risks in elderly populations.

Safety, consent & legal issues

SIB can lead to sexual harassment or even assault, including toward staff or other residents. In such cases, safety protocols, strict supervision or involvement of law enforcement may be required.

Consent concerns arise if the person with dementia lacks mental capacity—this may legally classify as abuse.