The diagnosis of a rare dementia affects people in different ways and changes in behaviour are common. Behaviour includes what a person does to make something happen, to make something change or to keep things the same. Behaviour also includes how a person responds to things that are happening, both internally – like thoughts and feelings – and externally – such as the people, objects and events around them. In dementia, behaviour may change because of damage directly to areas of the brain that control our behaviour (e.g. doing something that is completely out of character), and/or because of other changes in memory, communication or thinking abilities that affect how we interact with or respond to the world (e.g. doing something we normally do, but repetitively because we’ve forgotten we’ve just done it).

We often take for granted or don’t realise the extent to which our behaviours conform with social and cultural norms. When behaviours occur that are outside of these norms, they are quickly noticed and can draw attention. Even if a behaviour itself is not a risky or dangerous one, for example humming loudly, or not having the words we need to express ourselves, we can become vulnerable simply because we are behaving in a way that people don’t feel comfortable with or expect. If our behaviour poses any elements of danger, inappropriateness or risk, for example stopping to speak to strangers in the street, crossing the road without the usual care or attention, or entering the gardens or homes of our neighbours uninvited, then there is a risk of it escalating with significant consequence.

Changes in behaviour can be physical, verbal or passive in their form. It can be just as difficult to safely manage socially inappropriate behaviours which lead to walking about, moving furniture around, invading other people’s personal space, eating inappropriate or non-edible items, or which present as a response to fear, frustration and anger, as it can to manage more typically ‘aggressive behaviours’. 

As well as seeking to understand why a particular behaviour is happening, it is important to think about consequences and risks that behaviours may cause or lead to. These may be risks to the person whose behaviour has changed, as well as risks to the people around them. There may be identifiable triggers for some behaviours, which once identified, can be minimised or in some cases removed to help to prevent the behaviour if it poses a risk. Alternatively, there may be some changes in behaviour which happen unpredictably and quickly, which pose different challenges for adapting and managing. The frequency and intensity of behaviours is another factor which will influence the way we feel about it and the strategies we have available to us for adapting. 

See the RDS website pages on positive risks, minimal crises and safeguarding for further information on managing risks. You can also see the RDS website page on adapting emotionally for additional support with the emotional impact of behavioural symptoms.While the information in this presentation relates specifically to behavioural changes in PPA, there are some relevant applications across other diagnoses.

Please note that some of the symptoms and strategies mentioned below may be relevant for you, while others may not. Additionally, some of the symptoms and examples described can understandably be distressing to read about, and to experience. Please access this information in the way that works best for you, and to take breaks and come back to the information if needed. If you would like to discuss any of the information below further, please email the Direct Support Team via contact@raredementiasupport.org.

Behaviour changes are particularly common in people living with frontotemporal dementia (FTD). This is because the front of the brain is damaged in the early stages of FTD, and this brain region controls many of our behaviours. Different areas control different aspects of our behaviour, and have been likened to an ‘air traffic control room’ (the circuits which order and monitor our behaviour), a ‘moral compass’ or ‘social rule book’ (for guiding how we behave towards other people and what is appropriate in different situations), and the ‘starter motor and brakes’ of a car (giving us the ‘get up and go’ to start doing things, and ability to stop when something is not needed or not appropriate). Because behaviour is governed by such an intricate system of brain function, behavioural changes are common in many types of dementia. In the sections that follow, we describe a number of different types of behaviour change including:

• disinhibition
• apathy
• obsessions and compulsions
• loss of empathy
• aggression
• sexual behaviours
• eating and drinking behaviours

However it is also important to be aware that there are many dementia symptoms and other reasons which may cause a person’s behaviour to change. Someone might be more: 

• irritable, insistent or withdrawn, because communication difficulties keep them from saying what they need or understanding what people are asking of them.    

• shocked, agitated or distractible, because problems with attention or perception mean someone doesn’t cope well with the temperature, noise, light, crowds, open areas, etc in the environment.

• confused or frustrated, because changes in their thinking speed and flexibility mean that previously familiar tasks have become complex.  

• angry or resistant, because of changes in their physical health, due to medication, not feeling well, underlying illness such as an infection, or pain.  

• anxious or uncertain, because problems with memory or anticipation make it harder to recognise what is expected of them in each situation.

Changes in behaviour can be stressful for the person living with the diagnosis, and for families, friends and carers. Remember that many behaviour changes may not be within someone’s full control when they are caused by dementia.  It is also important to note that some medications may have side effects that can affect behaviour. 

Understanding the causes of a person’s behaviour can enable us to find the most helpful ways to respond. One way to help us understand and respond to someone’s behaviour is by using the ‘CAUSED’ model, which looks at: communication, activity, unwell/unmet needs, story, environment and dementia.

Understanding and finding ways to adapt to changed behaviours can be helpful, but it is also important to acknowledge that many of the changes in behaviour that are caused by dementia can be difficult to accommodate, for everyone concerned. Being open to trying a variety of strategies to match tasks to abilities and having a mindset that is open to change is essential. It is also important to give ourselves permission to accept that some of the changes in behaviour that are caused by dementia are really hard to live with. 

Sometimes there is little we can do to make a difference in the moment. Many of the strategies and tips, described below, for living with changes in behaviour have been built up over years of working with and listening to RDS members. Sometimes they work really well. Sometimes they don’t work at all. Sometimes they work today but not tomorrow. Don’t despair if nothing seems to be the right approach for you. Try to keep an open mind, to try new approaches and to remember that even unsuccessful strategies today may be successful tomorrow.

A brief presentation about understanding and responding to behaviour changes that are caused by dementia is available on the RDS YouTube page.

Disinhibition

Some people experience disinhibition as a symptom of dementia. The terms ‘disinhibition’ and ‘reduced inhibition’ are often used to mean the same thing. Generally, the terms are used to describe the inability to withhold inappropriate or unwanted behaviour. ‘Inappropriate’ or ‘unwanted’ might include behaviours which do not fall in line with the typical social rules and etiquette we mostly follow. This includes things like swearing or remarking on someone’s appearance, that are often (mis-)interpreted as a person being intentionally rude or lacking in manners by those around them. It can be helpful to think of disinhibition as a ‘broken handbrake’ in a car, whereby the ability to ‘stop and hold’ isn’t working as well as it should. 

Disinhibition is also closely related to several other changes in behaviour that can give rise to inappropriate, unwanted or simply unnecessary actions:

• impulsivity – the tendency to act without thinking. All of our brains work to balance when to act and when not to. We can all blurt something out, buy something we had not planned to, or run across the street without looking. But for people living with dementia, and in particular FTD, the balance may be tipped more towards acting than not acting, when we notice or think of something we want or need.
• perseveration – when someone ‘gets stuck’ on a thought or action. If disinhibition is thought of as ‘broken handbrake’ (starting to do something we wouldn’t normally), perseveration is a problem with ‘putting the brakes on’ (stopping doing something we have started). An example would be going to get a jumper out of a drawer and then unpacking the whole drawer, not because we need to, but because we can’t inhibit or put the brakes on the ‘getting out’ behaviour we have started, or suppress our reaction to the other jumper ‘stimuli’ in front of us.
• utilisation behaviour – a kind of impulsivity, in which there is difficulty resisting impulses to operate or manipulate objects that are within reach. For example, repeatedly grasping and turning door handles, or lifting an empty mug up and down to the lips, for no real purpose. 
• Imitation behaviour – when someone reproduces something they have seen or heard someone else do or say. This is sometimes referred to as echolalia.

Disinhibition can feel confusing or upsetting to experience or witness. People without dementia can perhaps identify with the idea of disinhibition by thinking about occasions when we fail to inhibit or suppress our everyday routines or habits. Walking into a room and pressing the light switch even though the light is already on, or getting out of a lift because the doors open even though it’s not our floor, are harmless example of ‘automatic behaviours’ when we fail to respond appropriately to the situation and fail to inhibit an ‘unnecessary’ behaviour.

Our behaviour is shaped by lots of different control circuits in the brain. Disinhibition may reflect damage to several of those circuits, usually because of loss of brain cells in different parts of the brain’s frontal lobes. One of the reasons why disinhibition is so common is that the brain systems that enable us to start (initiate) and stop (inhibit) behaviour are closely linked. For example, in the phrase ‘The captain wanted to stay with the sinking …’, it’s hard not to think of the word that completes the phrase as ‘ship’. If asked to finish the sentence with an unrelated word, people with a healthy inhibition system could hold the word ‘ship’ at bay and instead say something else like ‘banana’ or spaghetti’. For people with disinhibition problems, this fine balance is easily disrupted. It would be very hard for someone with disinhibition to resist the lure of the most obvious response, because that’s the one which is most active in all of our minds. 

The same applies in other situations: if we see someone whose appearance is striking, or have to swerve because of someone’s bad driving, there may be comments or words that occur to all of us. Some of us will find alternative things to say or say nothing at all; the person with disinhibition may not be able to. Not because they are a ‘rude person’ or immoral; just because the ‘brakes’ in their behaviour control system aren’t working as they used to.

The environment which we are in can also influence our behaviour. Overstimulating or unfamiliar environments, changes in routine, or high levels of stress can contribute to disinhibited behaviour. If our brain has a reduced ability to suppress inappropriate or irrelevant information, we are more likely to react to those cues and triggers. In the case of utilization behaviour, those triggers may be objects around us, prompting the actions associated with those objects. And in the case of imitation behaviour, the triggers may be what other people do and say, prompting an unintentional copying of those acts.

Apathy and loss of motivation

Loss of motivation is described as the absence of an internal drive to accomplish a task. It is sometimes also referred to as ‘apathy’. The pathways in the brain which are responsible for our motivation can be damaged by dementia. If a person has apathy, they will have little or no motivation to do things they previously found worthwhile, pleasurable, meaningful, or interesting. Apathy impacts everyday activities. It can make life less enjoyable and is known to significantly increase stress on carers, family and friends. Apathy is a particular problem where it interferes with caring for the person, for example managing their personal hygiene. Milder forms of apathy, though frustrating to live with, may be relatively harmless.

Apathy and laziness are not the same thing: apathy is caused by the loss of our ‘starter motor’ function in the brain in the frontal lobes, which drives our impulses and helps us initiate activity. The frontal lobes also help us to plan activities before we start, and then to carry through activities once we have. So together, damage to these parts of the brain can take away the ‘spark’ needed for us to decide what we are to do, as well as preventing us from being able to follow the steps involved in the task appropriately and see it through to the end.  Therefore, the people who are supporting and caring for a person living with dementia may need to start taking over these initial starter motor functions to help them. Once the activity is started, it is often possible that it can be continued, in some cases through to completion. 

Apathy is also different from depression, although depression can co-exist alongside apathy. People who are depressed often experience additional feelings such as hopelessness and sadness. They usually find it difficult to take pleasure in activities and have little sense of joy. This is not the case with apathy, where people will often experience joy and happiness once they are completing an activity or task. It is important to exclude depression in people who are experiencing apathy. There are some overlap in symptoms, but depression, unlike apathy can be treated with therapy or in some cases, medication. It is important to consider that an ‘apathetic’ person may be depressed, and to describe their symptoms to a GP or medical professional, as antidepressant medication may be helpful where appropriate.

Studies show that apathy in a person living with dementia is a particularly difficult symptom for family, friends and carers to adjust to. It is difficult to predict or find triggers for, and therefore less open to positive strategies for adapting and managing. It is particularly important for carers, family and friends to access support strategies for themselves, such as regular breaks or opportunities to talk, as well as looking for ways to support a person living with apathy. See the RDS website pages on adapting emotionally and becoming a carer for further details. If you would like to discuss support further, please email the Direct Support Team via contact@raredementiasupport.org.

Obsessions and compulsions

Obsessive, compulsive and repetitive behaviours and rituals are common in people living with dementia. These behaviours are distinct and different from the experiences of people living with obsessive compulsive disorder (OCD).  

Obsessions are constant worries, thoughts or pre-occupations about something, whereas compulsions are repetitive acts or behaviours. For people living with OCD, problems tend to be driven by fear or anxiety that something bad will happen if they do not follow a specific ritual. Whereas people living with dementia, and particularly frontotemporal dementia (FTD), tend to have minimal or no insight or awareness into their obsessions or compulsions. It is not clear to others or to them why they have become ‘fixed’ on certain ideas, objects or patterns of behaviour. These behaviours tend to be involuntary rather than driven by anxiety or fear. So although these behaviours may look quite similar, there is a definite distinction between symptoms of OCD and the obsessive or compulsive behaviours that people living with dementia may experience. 

What causes obsessive and compulsive behaviour?

Some obsessions and compulsions are the direct result of damage to the parts of the brain responsible for controlling our behaviour. These physical changes – often in the frontal and temporal lobes of the brain – don’t necessarily predict what someone might develop obsessions or compulsions about, but rather create a general tendency to get ‘fixed’, ‘rigid’ about or ‘stuck’ on something. That might be an idea (e.g. “he is trying to poison me” or developing pseudo-religious beliefs), an object (e.g. buying hundreds of bottles of shampoo or compulsively putting everything in bin bags) or patterns of behaviour (having to have lunch at exactly 12pm or being very fixed about the order in which washing, grooming and dressing take place).

Other forms of repetitive behaviour may also arise indirectly because of impairments in memory and other thinking skills. For example, a person with memory problems may repeat an action or question because they have forgotten what has been done or said. They may keep checking they have their wallet or handbag with them or keep checking their fridge to make sure they have enough food. Communication difficulties can also lead to repetitive behaviours, for example if an individual is trying to convey a specific need, such as hunger, thirst, pain, or discomfort, but is unable to communicate it effectively.

Repetitive singing or humming can be a challenge, especially when the same song or tune is being repeated over long periods of the day or evening. The brain operates a neurological ‘reward system’ that is triggered within the brain by humming and singing. Repetitive humming and singing is in part to do with this system being not only triggered, but caught in a sort of ‘loop system’ from which the singer (or hummer) can’t extract themselves. 

Most of us ‘feel good’ when we sing – and remembering this whilst you are trying to live with this behaviour might help to a degree.

The impact that some types of dementia can have upon communicating through words and language, may mean that singing or humming may in fact be providing a simple form of communication, making up for limited vocabulary and a decreasing ability to express oneself. 

Anxiety, uncertainty, lack of confidence and any additional stress can also cause some obsessions and compulsions to increase. Sometimes these types of behaviour provide a form of security for the person exhibiting them.

Environmental factors, such as a change in routine, unfamiliar surroundings, or overstimulation, can contribute to repetitive behaviours in individuals with dementia. These behaviours may serve as a response to the unfamiliar or overwhelming environment.

Certain medications can have side effects that may contribute to obsessive behaviour. It is important to consult with a healthcare professional to evaluate and adjust medication regimens if necessary.  

Empathy

Empathy means putting yourself in someone else’s shoes. Being empathetic means that we try to understand and feel what someone else is going through. It is the ability to emotionally understand what other people feel, see things from their point of view and imagine ourselves in their place. Empathy helps to give us insight and patience.

A lack of emotional warmth – or ‘emotional blunting’ – and an indifference towards other people including family and friends can be symptoms of dementia and are especially common in people living with a diagnosis of frontotemporal dementia (FTD). For example, someone with a loss of empathy might see their partner in floods of tears having just been told of a death in the family but just carry on about their business without acknowledging the loss or expressing concern, in a way that is completely at odds with their previous character. 

What causes changes in empathy?

 In people living with dementia, changes in empathy may be caused by damage directly to parts of the brain that are responsible for controlling social skills and behaviours. Changes in these regions at the front of the brain create multiple problems. They can limit someone’s ability to understand other people’s emotions (known as ‘cognitive empathy’). But they can also limit the ability to share in and respond appropriately to other people’s feelings (known as ‘affective empathy’). Research suggests that especially in conditions like FTD, cells in the areas of the brain responsible for social behaviour and empathy don’t get so triggered as healthy cells by information about other people’s emotions. Sadly, this physical disconnection of brain cells is often mirrored in a social disconnection or detachment between the person with dementia and those around them. 

As dementia advances, people living with a variety of dementias may find it harder to relate to others with empathy. This may not necessarily be because of direct damage to the emotion and empathy circuits of the brain, but due to the loss of other skills involved in these complex social interactions. For people living with memory loss, an inability to recall personal experiences and significant events makes it harder to understand the perspective of others. This can make it difficult for people living with dementia to relate to and empathise with others’ emotions and situations or offer the right comfort at the right time.

Responding to other people’s emotions – whether positive or negative – and knowing what to say or do (or not say or not do) also requires lots of cognitive skills such as attention, reasoning, and judgment. Impairments to these cognitive skills can make it harder for individuals to recognise and respond appropriately to social cues, leading to the impression of reduced empathy.

As the dementia progresses, further cognitive decline will mean that people living with a diagnosis of dementia may have decreasing capacity to cope with many complex situations and have no choice but to focus more on their own needs and efforts. This reduced capacity and necessary self-focus may make it difficult to notice, understand or empathise with the emotions and experiences of others.

Whether it is down to a direct loss of empathy or an inability to pick up the necessary signals, a lack of empathy is not within the control of the person living with dementia. It can be painful and cause tension within relationships and can sometimes be embarrassing if it is evident in public. 

Sexual behaviour

The brain controls our behaviour and emotions, including our sexual feelings and behaviours. It is important to remember that people show and share their affection and love for one another in many different ways. There are many ways of being intimate and sharing affection in addition to having sex, for example by cuddling, hugging, touching and massaging, or spending time in shared moments of togetherness. For many people, having a mutually meaningful sexual relationship continues to provide the feelings of intimacy, pleasure, joy, reassurance and security that it did prior to the diagnosis of dementia. For others, sexual intimacy becomes more difficult to sustain for a variety of reasons.  

Please see the RDS website page on adapting emotionally for additional information about the effect of changes in the desire for sex and changes to sexual behaviour on personal relationships. 

What causes changes in sexual behaviour?

The temporal and frontal lobes of the brain are important for the control of sexual behaviour, and damage to these areas can lead to changes in the type of sexual behaviour people demonstrate. Someone who has been diagnosed with dementia may have more sexual feelings or fewer sexual feelings than usual, and may do or say different things –sometimes seemingly inappropriately – as a result. Changes within the brain may mean that the sexual desires and feelings of a person living with dementia can change unpredictably. This is especially the case if the ‘reward’ centres of the brain are affected, meaning that certain ideas or activities are more or less pleasurable than previously. 

The social filters that we use to decide what behaviour is appropriate in a particular situation can be affected by the damage to the brain that dementia causes. There may be a decreased ability to inhibit sexual needs and desires (see the previous section on disinhibition for further information).

Dementia can affect cognitive functions such as judgment, reasoning, and impulse control. These cognitive impairments can lead to a loss of understanding or inhibition regarding sexual behavior, with a person not fully able to comprehend the implications or consequences of their actions.

The memory difficulties experienced by many people living with dementia may include forgetting familiar people or relationships. This type of memory loss can result in sexual advances towards family members, carers, or strangers due to the inability to remember the nature of their relationship. It may also mean that people forget recent sexual activity and initiate it more frequently than they would otherwise have done.

Dementia can cause alterations in emotions and sensory perception. The experience of heightened emotions or agitation can influence sexual behaviour. Additionally, sensory changes may affect the perception of touch or pleasure, leading to a change in sexual preferences or sexual desire.

When sexual behaviour happens in places or with people that are not considered to be appropriate, people may feel anxious, embarrassed or frightened. The consequences of these behaviours often escalate quickly and with unprecedented outcomes for the person living with the diagnosis, who has not intended harm by them.    

It is also possible for well-intentioned gestures to be misinterpreted as being sexual in nature. For example, for those with language and comprehension problems and a reduced vocabulary of words and gestures, an effort to express gratitude for something mundane like a cup of tea or the post being delivered could result in the person with dementia moving to kiss someone. Although this is an intention to offer no more than a general positive indication of thanks, such an action would understandably not necessarily be interpreted that way by the person being kissed.

Aggressive behaviour

Resistant or aggressive behaviour can take many forms and can be verbal as well as physical. Resistant behaviours are ones that oppose the efforts or interventions being made by family, friends or carers to assist with care or safety needs. Resistant behaviours may display themselves subtly, for example by ignoring, refusing or only partially accepting an effort to assist or an intervention, but can go on to become aggressive in some cases. 

Verbally aggressive behaviour may include swearing, screaming, shouting or making threats. 

Physically aggressive behaviour may include hitting out, damaging objects or property or physical violence towards another person.  

In everyone, aggression occurs when the ‘drive’ to respond to a provocative or anger-producing situation or stimulus is not inhibited or ‘damped down’ enough. Both this ‘drive’ and ‘damping down’ are dependent on brain cells in the different parts of the front of the brain, and the chemical messaging between them. So in people whose dementia affects these regions of the brain, aggression may occur because of too much ‘drive’ (e.g. an abnormally strong emotional response to situations, whether provocative or not), not enough ‘damping down’, or both. 

What causes aggressive behaviour?

For people living with dementia there may be many additional challenges that contribute towards resistant or aggressive behaviour. There are many reasons for this.

• Impaired vision or hearing can lead to misinterpretation of sights and sounds, and misunderstanding may be further increased by a reduced ability to understand what is going on in the wider environment generally (see the RDS website page on the senses for more information)
• It is natural to feel afraid if we do not recognise the people or places around us. Fear can lead us to behave in ways we would not otherwise.
• A reduced ability to communicate needs may mean that someone living with dementia is less able to express their wishes and may find themselves acting aggressively in frustration, fear, or as a means of trying to express an otherwise uncommunicable issue 
• A reduced ability to discern humour and sarcasm, and a tendency to interpret words and actions more literally, can result in escalations towards aggression where they previously would not have happened 
• Hallucinations or an altered sense of reality can sometimes contribute as a cause of aggressive behaviour – especially if the people around are not able to enter into the reality that is being experienced

Other factors that contribute to resistant or aggressive behaviour are similar to what might cause anyone irritation or distress:

• Tiredness and pain or physical discomfort are often contributory factors.
• Depression can be the root cause of aggressive behaviour, and often goes unrecognised or untreated in people living with dementia. It is important to give space and time for people to discuss how the diagnosis is affecting them, and to consider how mood and behaviour may be influenced by depression. Speak to a medical professional about anti-depressant and/or talking therapies that are available.
• It is natural to feel defensive if we feel embarrassed or humiliated, especially when independence, privacy and dignity feel threatened.
• Reactions to medications also contribute to aggressive behaviour. Please speak to a medical professional if there are concerns about medication.

Eating and drinking

Eating, drinking and meal times are often social experiences, providing an opportunity for time to be spent together with family and friends, as well as enjoying the food and drink itself. A diagnosis of dementia can change the way people feel about eating, drinking and mealtimes more generally.

What causes changes in eating and drinking?

Taste sensitivity diminishes with age, and some people living with dementia find their sense of taste changes significantly.Dementia can affect a person’s ability to recognise foods, to feed themselves or to coordinate chewing and swallowing. It can affect how well a person can concentrate on eating or the mealtimes in general. It can also change the preferences a person has for types, textures or even colours of food. There may be changes in appetite or cravings for certain foods. Changes in the senses of smell and taste may contribute to appetite changes, whilst changes in vision and spatial awareness can make the activity of the mealtime process harder to navigate and less pleasurable. For example, eating food which tastes bland or unidentifiable, being unsure where a plate of food is in relation to the table or not being able to reliably transfer food from the plate to our mouth without spilling or dropping it can significantly reduce the pleasure of a mealtime experience (see the RDS website page on the senses for more information).  

There are many other general factors which can affect our eating habits, for example having dentures or dental plates that are well fitted, getting enough exercise and the side effects of some medications. See our later stages information for further details about issues relating to nutrition in the later stages of dementia.

This page provides information about some of the more nuanced changes that are experienced by people diagnosed with rare dementia. A dietitian may also be able to offer more support.

Drinking and hydration

A diagnosis of dementia can affect a person’s ability to recognise that they are thirsty, to remember how much they have drunk and to understand the importance of staying hydrated. It can also impact the ability to drink because of physical difficulties (such as lifting a cup to a person’s mouth) and visual or perceptual changes (such as being able to perceive water in a clear glass). Because of these changes, people living with with dementia may be more likely to become dehydrated, which can lead to issues such as constipation, urinary tract infections and worsening of some of the more typical dementia symptoms, such as difficulties with concentration, alertness and confusion.

A diagnosis of dementia can result in changes to food preferences and eating and drinking habits. This may be because certain foods are now easier to manage, taste differently than they used to, or remain more recognisable than other food types. 

Appetite changes can lead to people overeating or not eating enough. This may be because the person forgets what has been eaten recently, or due to a reduced awareness of the time of day and what food intake is appropriate. 

Changing food and drink preferences

Weight changes may occur as a result of changed abilities to eat and drink as well as changes in dietary preferences. Weight loss is a common feature in many dementias, and indeed may precede the development of symptoms. The reasons behind this are not entirely clear. Additional reasons for weight loss can include people forgetting to eat, changes in what they like to eat, or not being given enough time and help to finish their meals. 

While it is important to have a balanced diet, finding foods that people enjoy is very important, as eating is both about nutrition and enjoyment. If people are eating a balanced diet, then additional supplements are usually not needed, but if there is significant weight loss then sometimes drink supplements with additional calories may be needed. Discuss this with a GP, dietitian, medical professional, or care home staff if appropriate (see the RDS website page on other professionals for further information and the British Dietetic Association resource on Eating, drinking and ageing well for more information).

Overeating or an increasing preference for particular types of food or drink can result in people gaining weight. The part of our brain which lets us know that we have eaten enough, and that we are feeling ‘full,’ is damaged in some types of dementia. This can result in people responding to the sight of food regardless of whether they are hungry or not. Look for low fat or low sugar alternatives to usual foods and drinks. Likewise, low or zero alcohol drinks can replace drinks with alcohol content, where this is becoming problematic for health or social reasons.

People living with a diagnosis of dementia may find it harder to recognise the feelings of being hungry, thirsty or full. Food preferences and appetite changes can also occur because of damage to specific parts of the brain which control appetite, oral and eating behaviour.   

The senses of smell, taste and vision can be affected by a diagnosis of dementia, which also causes changes in food preferences. Not being able to recognise or name what we are eating can significantly impact how we feel about eating it.  See the RDS website page on the senses for more information.

Behavioural variant frontotemporal dementia (bvFTD) and semantic variant PPA (svPPA) typically cause changes in food preferences, appetite and eating habits. Posterior cortical atrophy (PCA) often results in people changing the way they eat and what they eat to compensate for not being able to see either the food or the food environment as clearly.

If chewing or swallowing difficulties develop, this will also affect the type of food people want to eat and the way they react to certain foods. Whilst this webinar focusses specifically on PPA, some of the information is applicable across other diagnoses.

Manners and etiquette

What causes changes in manners and etiquette ?

The whole context of mealtimes can be changed when someone cannot engage as easily in the activity as before. Not being able to recognise what food items are on the plate and being fearful of spilling or dropping food and drink and making a mess, can impact the way we feel about eating and drinking and the way we behave during mealtimes. Mealtime etiquette and culturally recognised table manners can also be affected by damage to the parts of the brain responsible for these activities. 

In some cases, this is because of damage to parts of the brain which are responsible for governing social behaviour, which makes it difficult or impossible for a person living with dementia to behave any differently. Eating more quickly than is socially acceptable, over-filling the mouth with food, and taking food from other people are examples of this type of changed behaviour. 

Eating food off other people’s plates or taking it from places which are not appropriate can occur if the trigger to eat is driven by the sight of food, and when the socially regulated restraints have been reduced or lost because of damage to the areas of the brain which are responsible for controlling these.  

In other cases, changes to eating etiquette may be due to the difficulties being experienced in recognising food, locating where it is on the plate, using a knife, fork or spoon to break it up, and then getting food from the fork or spoon into the mouth.  

Anxiety about spilling or making a mess, or about appearing impolite in front of others can play a big part in the way people behave at mealtimes. When a diagnosis of dementia causes visual and spatial difficulties, a person may be unable to differentiate their plate from other plates that are near theirs on the table, and mistakenly eat off, or place their utensils alongside the wrong one. 

Ask for the help that is needed in order to maintain pleasurable eating and drinking experiences. Let people know what is and isn’t helpful and give them permission for sensitive involvement.When eating out, request a table with additional space so that moving around it, and eating from it, is easier.

Using crockery and cutlery

What causes changes in the use of crockery and cutlery?

Difficulty using crockery and cutlery can arise if there are visual or spatial difficulties which make it difficult to see where utensils are, or to recognise their function and appreciate where they are in relation to each other on the table or tray. Problems can be made worse if the ability to control motor movements is reduced, making it difficult to manage the use of utensils in a purposeful way. There can be an increased difficulty in recognising the function and purpose of utensils in some dementia diagnoses. This can occur early on in diagnoses such as semantic variant PPA and may develop as the disease progresses in other types of dementia too. 

Safe eating and drinking

What causes eating and drinking to become less safe?

A diagnosis of dementia can affect a person’s ability to eat and drink safely for a variety of reasons. For example, changes in thinking abilities might lead to difficulties in concentrating on the food or drink being placed into the mouth, or with moderating the amount eaten. There may be difficulties recognising food or drink, which can lead to unsafe eating and drinking habits, eating inappropriate non-food items, as well as unsafe handling of food or drinks. Not being able to understand fully what they see or how they feel can make it particularly difficult for people living with dementia to respond to the usual cues that are associated with eating and drinking. There may other symptoms of dementia which mean that people eat or drink more rapidly than is safe or have less control over the manipulation of food or drink in their mouth. Agitation and not being able to sit for the duration of a meal can also add complexities around safe eating and drinking. Muscular control over the food in the mouth and throat can also sometimes also be affected in some types of dementia.

People experiencing problems with the motor control of their speech or swallowing function often experience heightened anxiety in relation to these functions. Heightened sensitivity to the symptom is also common, and can impact how we cope with the issues that arise. People with difficulties swallowing may become increasingly anxious about mealtimes and seek to avoid them, or to get them ‘over and done with’ as quickly as possible.

As people living with dementia become less able to control the food and drink that is being offered, it becomes increasingly important to find ways to include them in as many decisions as possible, and to ensure that a safe environment for eating and drinking is provided.

Having food that people enjoy, with manageable textures, presented on practicable crockery and with cutlery that is as accessible as possible is important. Having good lighting in the area where food is eaten, ensuring comfortable and safe seating options are available, cutting food up into manageable-sized pieces, and providing verbal cues and motivation for safe eating and drinking are also important. If agitation and restlessness make it difficult for a person to be seated at mealtimes, preparing a selection of bite-sized or finger food options may be helpful.

Swallowing difficulties  

Chewing and swallowing are complex processes involving the coordination of many different muscle groups. People living with a diagnosis of dementia may sometimes find it difficult to feed themselves or to chew and swallow food and drinks. Causes for this include forgetting to chew and swallow as well as not being triggered by or not recognising the usual sensations we rely on to prompt our swallow reflex. Food may be held in the mouth or might spill or be spat out because of the triggers to swallow failing to initiate a swallow reflex. Some people find that eating food off a teaspoon is more manageable than alternative utensils and that interspersing mouthfuls with small amounts of cold products can help initiate the swallowing reflex, however it is important to seek tailored advice and support from a speech and language therapist for more detailed guidance.

People often worry about choking. Problems swallowing can increase the risk of things going down the wrong way (into the airway). This, in turn, can increase the risk of chest infections or choking. A cough is the body’s natural response to foreign bodies entering the airway or windpipe. It is our way of protecting our lungs. Coughing is under neurological control and so can be affected by a diagnosis of dementia. This may mean that people are not able to produce a cough of adequate strength to clear their windpipe. 

Food and drink do sometimes go down the ‘wrong way’ for everyone and our cough reflex usually protects our airway when this occurs. Sometimes it doesn’t and the risk of developing an infection increases. However, it is important to recognize that it doesn’t cause an infection in itself, rather it raises the risk of an infection developing.

In some cases, a speech and language therapist may advise that fluids should be thickened, or food softened, to with swallowing more safely and easily. Softened food is typically preferable to pureed food so long as it is safe, and in all cases, keeping food and drink as visually attractive as possible is important. Seek professional advice and support from a speech and language therapist or dietitian on the thickening of fluids or the softening of foods.

Malnutrition

It is natural to be concerned about people living with dementia being able to access enough well balanced and nutritious meals.

Introducing smaller, more frequent meals can be a helpful way to increase dietary intake. Providing nutrient rich food types (not just fat rich) at mealtimes and as snacks in between meals can also help increase nutrition. For example, cheese, fruit, nut butter on toast, rice pudding, Greek yoghurt and custard are all examples of nutrient-rich food types.

Where there are concerns that a person may not be eating enough or not getting sufficient nutrients from their food, nutrient dense food fortification may be advised. Options for fortifying foods typically include skimmed milk powder, Greek yoghurt, ground nuts, eggs, cheese, nut butters, pea protein powder and soya protein powder. Additional dietary supplements may sometimes be recommended, but this should always be alongside the advice and support of a speech and language therapist or dietitian. 

Dehydration

When we are trying to ensure adequate fluid intake, it is important to remember that all fluids count towards the overall total daily intake. This includes milky drinks, fizzy drinks and fruit juices as well as water and squash. Ice lollies can also be a helpful way of adding to the hydration total. Making sure that favourite drinks are available and accessible in containers that are easy to use helps promote drinking habits. Getting into the habit of taking a full glass of liquid with medications, having drinks with and between meals, and making drinks a social opportunity are all ways of further maintaining good hydration. Carbonated water, and drinks with distinctive flavours, such as lemon and ginger can provide sensory cues that trigger intake and swallowing for some people.

Weight changes

Weight changes may occur because of changes in abilities to eat and drink as well as changes in dietary preferences. Weight loss is a common feature in many dementias, particularly in the later stages. Reasons for weight loss can include people forgetting to eat, changes in what they like to eat, or not being given sufficient time and help to finish their meals.

While it is important to have a balanced and nutrient rich diet, as referenced above, finding foods that people enjoy is also very important, as eating is both about nutrition and enjoyment.

Overeating can occur if people living with dementia forget that they have already had a meal, or when they last ate, or if they are finding it increasingly difficult to recognise appetite or respond to the feelings of hunger. An increasing preference for particular types of food or drink can result in people gaining or losing weight. A referral to a dietitian is typically helpful as well as opting for low-fat or low-sugar alternatives to usual foods and drinks where relevant. Likewise, low or zero-alcohol drinks can replace drinks with alcohol content, where this is becoming problematic for health or social reasons.

Misplacing of non-food items in the mouth

Depending on the type of dementia a person is living with, and the stage to which symptoms have progressed, there may be an increased likelihood for non-food items to be put into the mouth (referred to as hyper-orality). People living with semantic dementia may find it difficult to discern food from non-food items relatively early in the disease journey. There are some obvious circumstances in which this might occur, for example the mistaking of washing up liquid for fruit squash, or the mistaking of brightly coloured washing tablets, or berries on a plant  for sweets. Providing additional labels to these items, in a format that people find accessible, such as in bold type or by using  images they recognise can be helpful. Moving hazardous items into cupboards that are less frequently used, or out of the way completely may help reduce the risks. Making people around us aware of the potential hazards and making ourselves aware of simple first aid procedures and the procedures to follow in the case of suspected ingestion of non-food items are sensible precautions.

Alternatives to oral eating and drinking

Very occasionally people consider the options of not eating and drinking orally. This is a complex decision, involving many different health professionals including the person living with dementia and carers, the speech and language therapist and the medical team, and should not be undertaken without full consideration of the impact and ongoing consequences (see the Alzheimer’s Society website for more information on artificial feeding and hydration).

People who can help

Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.