Art & science dementia series: 3

Signs and symptoms of dementia Babu Sandilyan M, Dening T (2015) Signs and symptoms of dementia. Nursing Standard. 29, 41, 42-51. Date of submission: July 27 2014; date of acceptance: November 17 2014.

Abstract The clinical features of dementia are usually considered in two groups: cognitive and non-cognitive symptoms. Among cognitive symptoms, problems with memory are typical of most forms of dementia, but problems with language and executive functioning are also prevalent. Non-cognitive symptoms is a somewhat unsatisfactory general term for a group of problems that include mood disorders, psychotic symptoms and various other changes in behaviour. In assessment and management, it is important to look for underlying causes of symptoms and try to understand the perspective of the individual with dementia, because their behaviour may be communicating an important message.

Authors Malarvizhi Babu Sandilyan Consultant in old age psychiatry, Berkshire Healthcare NHS Foundation Trust, Reading, England. Tom Dening Professor of dementia research, Institute of Mental Health, University of Nottingham, Nottingham, England. Correspondence to: [email protected], @TomDening

Keywords Agitation, apathy, aphasia, behavioural symptoms, cognitive symptoms, dementia, depression, memory loss, non-cognitive symptoms, psychological symptoms, psychosis

Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.

Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: journals.rcni.com/r/author-guidelines DEMENTIA IS A CONDITION of the brain that presents as a collection of signs and symptoms. These signs and symptoms may not be noticeable during the early stages but are likely to worsen gradually with the progression of brain changes. There can be a wide variation in the signs and symptoms of dementia, depending on the specific brain regions affected, the stage of the illness, individual personal circumstances and the overall health of the person affected. A good understanding of dementia symptoms and a person-centred approach are required to provide appropriate care for individuals with dementia.

In previous articles in this series, the various types of dementia and the enormity of the global health burden of dementia have been considered. This article discusses the various clinical features of dementia, the effect it has on the individual and how healthcare professionals can help. The clinical features of dementia can be grouped broadly as cognitive symptoms such as those related to memory, comprehension, reasoning, judgement and learning; and non-cognitive symptoms such as those involved in mood, behaviour, motivation, abnormal beliefs and unusual perceptions.

Cognitive symptoms of dementia Cognitive symptoms of dementia arise because of the particular higher order brain functions affected by the disease process. They comprise amnesia, aphasia or dysphasia, apraxia or dyspraxia, agnosia and frontal dysexecutive syndrome. More information about these symptoms and how to test for them can be found in Hodges (2007).

Memory – amnesia

The core deficit in Alzheimer’s disease is difficulty in learning new information. This causes memory impairment, which is the classical feature of Alzheimer’s disease and usually among the earliest problems to arise. Forgetfulness is a normal experience as a person gets older, but if the problem is severe and worsens over time, this suggests dementia rather than typical ageing. Patients often present with forgetfulness, and offer examples of losing things around the house, repetitive questioning and forgetting appointments. They often use lists and calendars as aids, but if the memory problem worsens they forget where they have recorded the information or are unable to make sense of what they have written down. The inability to remember new information is called anterograde amnesia. During the early stages of the illness, people affected with dementia are able to retrieve memories from previous years, while showing a memory deficit for recent events. As the disease progresses, the ability to retrieve previous memories seems to become affected and the person appears to live in the distant past. This is called

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retrograde amnesia. Retrograde amnesia is usually accompanied by loss of: Episodic memory – memory for personal life events. Semantic memory – memory for facts and information about the world. Visuospatial memory – remembering known places and faces. Working memory – the ability to remember a list of words or a string of numbers long enough to repeat it immediately after hearing it. Episodic memory loss is one of the earliest signs of Alzheimer’s disease, while working memory is preserved during the initial stages. Amnesia is usually tested by reading a list of words or an address to the person and asking them to recall the information after a few minutes (Kipps and Hodges 2013). Reality orientation (orienting the person, for example, to dates, weather and location), reminiscence therapy (stimulating long-term memory using historical cues) and use of external memory aids such as calendars and diaries may be of practical use, though these methods lack evidence for preserving memory (James and Fossey 2013). People with dementia tend to have repetitive speech, asking the same question again and again because they simply cannot remember the answer or having asked the question. A useful technique in such situations is validation. The principle of validation is to accept that a certain theme may emerge from repetitive speech, which often reflects the unmet needs or the anxieties of the person. Addressing those anxieties can help to alleviate the distress of the individual and avoid this repetition.

Language – aphasia

Language deficits are apparent even during the early stages of Alzheimer’s disease and usually include word-finding difficulties, where the person struggles to find the right word to complete sentences. This can also be an early feature, particularly in frontotemporal dementia. There are different types of language problem depending on the areas of the brain involved (Taler and Phillips 2008). Expressive (or nominal) aphasia is when people cannot find the name of objects or people; problems occur initially with rare things and later this extends to common things. They use circumlocution, a roundabout way of explaining something because they cannot find the right word. For example, they may say ‘a thingummy’ or ‘you know what I mean…’ rather than using a noun at all. Later, the ability to understand spoken language deteriorates. Language has grammatical errors and poor structure, and people resort to simple sentences or become repetitive.

Receptive aphasia is where comprehension of language is impaired. This can be difficult to detect because it is hard to be certain that the person is not deaf, which has similar effects. If the person simply does not understand what is being said and it has been determined that they can hear, receptive aphasia may be the problem. In practice, language difficulties may be apparent during initial conversations with the person. Difficulties in reading, writing, repeating sentences and words, and naming objects will suggest aphasia. In advanced dementia, the ability to understand what is happening and to express oneself deteriorates, resulting in confusion and frustration. At this stage, alternative means of communication may develop to express unmet needs. These means of communication, for example shouting or purposeful walking, may be considered problematic by carers. However, the person’s ability to respond to non-verbal cues and emotions may remain intact.

Actions – apraxia

Apraxia is the inability to perform complex actions, for example buttoning a shirt, despite having usual sensory awareness, musculoskeletal system and co-ordination. This is a result of failure of the higher brain functions that direct such complex tasks. Common types of apraxia in dementia include (Kipps and Hodges 2013): Dressing apraxia – forgetting the sequence of actions required for dressing and an inability to orientate parts of the body to the garment. Ideation apraxia – loss of perception of an object’s purpose, for example using the flat side of a comb to comb hair. Ideomotor apraxia – breakdown between the idea of an action and its execution. For example, when asked to wave goodbye, the person may know the movements that will bring about the action but is unable to perform them. Constructional apraxia – inability to place things in relation to one another, for example drawing a three-dimensional figure. Apraxia is evident when a person struggles with everyday tasks such as brushing their teeth or getting dressed. The problem occurs not because the person with dementia has simply forgotten how to do things, but because the brain cannot co-ordinate all the actions or link them with information from the environment.

Recognising sensory information – agnosia

Agnosia is the inability to interpret information from an intact sensory system. Visual agnosia is where a person fails to recognise objects despite having no problem seeing them. They may fail to recognise common household objects, for example they may

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Art & science dementia series: 3 misidentify the dustbin as the toilet or mistake the kettle for the teapot. The inability to recognise faces, including one’s own, is called prosopagnosia. People with this condition may fail to identify their family members or misidentify their own image in the mirror – this is known as the mirror sign. Being unable to recognise objects affects daily activities, such as using the television, telephone or microwave. In more advanced stages, the inability to recognise family members can result in strained relationships, which in turn affects the person’s mood and behaviour.

Attention and concentration People with dementia often have problems, even at an early stage, in maintaining attention while performing tasks, especially those that require concentration over a longer period of time. Carers often describe people with dementia as being unable to concentrate, easily distracted, or becoming confused by tasks that were previously easily performed. Such symptoms have implications for work, for example if the person’s occupation requires them to operate heavy machinery or drive.

Dysexecutive syndrome

Dysexecutive syndrome reflects problems in frontal brain regions and their functional connections. It causes problems with planning, problem solving and performing actions in a sequence, for example the actions to make a cup of tea. People with this condition have poor concentration and cannot move from one task to another easily, which results in them repeating the same word or action over and over (perseveration). They have difficulty in

BOX 1 Use of language in dementia The language used to describe changes in the mental state and behaviour of people with dementia is variable and has changed over the years. In the past, behaviour was regarded simply as a result of the dementia – this could be described as a neurological view. Seen in this light, the appropriate response might be medication or possibly behavioural treatment. This view has changed since the work of Kitwood (1997), who noted that a person’s behaviour is profoundly influenced by the social setting. Kitwood’s work led to the current model, person-centred care. In this model, some of the terms in current use, such as non-cognitive symptoms or behavioural and psychological symptoms of dementia, have become viewed as inadequate and excessively medical. It is thought preferable to consider behaviour as attempts at communication, often of unmet needs. This has the advantage of offering more flexible and less harmful approaches to supporting the person. For this article, a term that encompasses all of a person’s experiences and occurrences is required, so non-cognitive symptoms is used. This does not preclude viewing the person as a whole or negate the interpersonal communication aspects of behaviour.

inhibiting their actions and a lack of motivation (apathy). Sometimes, they may present with lack of social propriety (disinhibition), tactlessness or even sexual inappropriateness. All of these can be perceived as challenging behaviours and can increase the burden on carers.

Thinking, judgement and mental capacity

The ability to think logically and to make choices and decisions may be affected in various ways by dementia. If someone has memory impairment, it is more difficult for them to retain or use information about their present situation and about recent events. Thinking may be affected by a general slowing of cognitive processes, as in Parkinson’s disease, although this may occur in any form of dementia. Dysexecutive syndrome is likely to lead to errors of judgement. In England and Wales issues related to decision making and mental capacity are covered by the Mental Capacity Act 2005. To have the capacity to make a specific decision requires that a person is able to: understand the information relevant to making that decision; retain the information; use or weigh that information to make a decision; and communicate the decision. All these criteria may be affected by dementia, so an understanding of the principles of the act, and skills in assessing mental capacity are important for nurses working in this field (Higher Education for Dementia Network 2013).

Non-cognitive symptoms of dementia Non-cognitive symptoms of dementia (Box 1) refer to psychological and behavioural disturbances seen in dementia. These disturbances arise from a variety of factors, including the direct effects of dementia on the brain, the premorbid personality traits of the person, social circumstances and environmental causes. Psychological and behavioural disturbances seen in dementia may be considered in three broad categories: psychological, behavioural, and biological symptoms (Figure 1). Non-cognitive symptoms are common in all stages of dementia, but become more problematic and persistent as dementia increases in severity. They occur in up to 79% of nursing home residents with dementia (Margallo-Lana et al 2001). They are frequently more difficult for carers to cope with than cognitive symptoms. For example, forgetfulness is generally better tolerated than aggression or extreme apathy. The behavioural and psychological symptoms of dementia can result in increased cost of care and significant loss in quality of life for the patient and their family and caregivers (Finkel et al 1997).

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Changes in personality and mood, including depression, occur in some form in many people with dementia. Behavioural changes, including agitation and apathy, also occur commonly but occur later in the course of the illness and often persist. Aggressive behaviour is shown by about 20% of people with dementia (Burns et al 1990), while psychotic symptoms occur in 41% (Ropacki and Jeste 2005). However, these figures are approximate and depend on the sample being studied.

Psychological symptoms in dementia

Psychotic symptoms Psychotic symptoms in dementia include delusions and hallucinations. Delusions are false, unshakeable beliefs that are held with extraordinary conviction and subjective certainty. To confirm delusion in dementia, such beliefs should be reiterated on at least two occasions more than one week apart. This allows for differentiation from confabulation (falsifying true memories in retrospect) and delirium (acute confusion, usually a result of underlying physical causes such as infection). The onset of delusions should be after the diagnosis of dementia; episodes should also be severe enough to disrupt functioning and not able to be explained as drug effects or an effect of other medical conditions. Common types of delusion reported by people with dementia are ideas of persecution. People often complain that others are conspiring to harm them, that their possessions have been stolen, a family member is planning to abandon them or their partner is having an affair. Some people have difficulty in distinguishing figures on television or in photographs from reality; this is called delusional misidentification. The person may not be able to recognise themself in the mirror, may believe that a family member has been replaced by an imposter (Capgras’

syndrome), and may fear that there are intruders in the house (phantom boarder). As the disease progresses, they may not recognise their own home and may repeatedly attempt to leave the house. When someone with dementia has a fixed false belief, there is little point in trying to convince them that they are wrong, as this will only cause them to feel humiliated. For example, trying to confirm that their parents are dead when the person believes they are still alive is not helpful. However, it is not appropriate to agree with someone when their conviction is clearly harmful, for example if they believe someone is poisoning them and therefore refuse to eat. Not everything that appears to be an incorrect belief or account of events is necessarily a delusion. For example, confabulations may be either entirely or partially incorrect and sometimes consist of real memories jumbled and retrieved out of context (Kopelman 2010). Confabulations are often about the person’s past experiences and thoughts. These are not delusions as they are less fixed and tend to be more fluid in their content. The cause of confabulation is not well understood but it seems to require memory impairment plus some degree of disinhibition. Some memories that appear to be false may be correct, no matter how unlikely they seem to be. So it is important to attempt to verify the details with someone who knows the person well. Some people with dementia report seeing something that is not there, or hallucinations. These are perceptions that occur in the absence of stimuli. People often report visual hallucinations, such as seeing little people or animals, or auditory hallucinations, for example hearing someone talking to them. Not all hallucinations are caused by dementia. They may also occur in someone who has visual impairment, especially macular degeneration,

FIGURE 1 Psychological and behavioural disturbances occurring in patients with dementia Psychological and behavioural disturbances in dementia

Psychological symptoms Psychotic: delusions and hallucinations Mood disturbances: depression and anxiety

Behavioural symptoms Apathy, aggression, purposeful walking, abnormal vocalisation

Biological symptoms Sleep and appetite

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Art & science dementia series: 3 in which circumstance the term Charles Bonnet syndrome is sometimes used. However, although people with hallucinations are sometimes referred to psychiatrists, there is no significant cognitive impairment. Treatment should focus on identifying the condition and providing reassurance and education, because medications have not been shown to be consistently effective (Hughes 2013). Other types of isolated hallucinations can occur in dementia, for example musical hallucinations. These tend to occur in people who have some degree of both hearing loss and tinnitus. On their own they do not signify mental illness and do not require psychiatric treatment, though management of tinnitus is important. Symptoms such as delusions and hallucinations occur more commonly in dementia with Lewy bodies than in Alzheimer’s disease or vascular dementia (Ballard et al 1995). Visual hallucinations are a core feature in the characteristics of dementia with Lewy bodies. It is important to recognise this because people with dementia with Lewy bodies are excessively sensitive to antipsychotic medications (McKeith et al 1992). Such medications should only be used with caution in people with any kind of dementia and are best avoided in those with dementia with Lewy bodies. A biopsychosocial model has been suggested as one explanation for psychotic symptoms in dementia. Brain regions that allow us to process information and make sense of the world are affected when a person has dementia. These changes, along with psychological and social factors, leave a person with dementia more susceptible to the development of psychotic symptoms. For example, delusions of theft often seem to be an attempt to explain why something is missing when the person has forgotten that they moved it, or may have hidden it because they feared it would be stolen and now cannot find it. Mood disturbances Studies report that major and minor depressive symptoms are observed in approximately one third to one half of patients with dementia (Olin et al 2002, Lee and Lyketsos 2003). Those with a family history of depression are at increased risk of developing major depressive episodes during the course of the disease process. In addition, an episode of depression in earlier life is a risk factor for development of Alzheimer’s disease later (Ownby et al 2006). Diagnosing depression can be challenging, because apathy, which is common in people with dementia, can be mistaken for depression. Further, many depressive symptoms such as sleep disturbances, loss of appetite and weight loss are

common in dementia. A significant change in a person’s mood or activity is often the first symptom of depression. Some useful questions to ask when assessing for depression are: is the person unhappy or depressed? Do they no longer enjoy things they used to? Does the person lack energy? Is their level of activity reduced? Is there loss of appetite and weight? Is there a change in their pattern of sleep? Several assessment scales are available for depression in dementia. Of these, the most used is the Geriatric Depression Scale (Yesavage et al 1982-1983), a 30 or 15-item self-reported questionnaire. The limitation is that only people with relatively mild dementia will be able to complete it. The Cornell Scale for Depression in Dementia (Alexopoulos et al 1988) includes two versions, one to be used with the person with dementia and another with an informant, so the informant version can be used to assess more severe dementia. There is no single cause of depression in dementia – it tends to be a complex interplay of biological, psychological and social factors. Biological changes in dementia, such as imbalance of chemical neurotransmitters, including serotonin and noradrenaline, and structural changes in the deep white matter of the brain as a result of stroke and transient ischaemic attack (mini stroke), are also associated with depression. There is a close relationship between dementia and depression – either can come first or they can co-occur (Bennett and Thomas 2014). People with a history of depression, chronic physical illness and alcohol dependence are more likely to develop depression in dementia. In addition, physical illness such as hypothyroidism, chronic infection and cancer are associated with depression: each may contribute to the other, and the presence of both leads to worse health outcomes (Thomas 2013). Psychological factors such as premorbid personality, previous styles of coping and patterns of thinking can affect the risk of depression. Social and life factors such as loss of a spouse, moving into a care home and social isolation may also contribute to a person developing depression. However, one should not forget that sadness associated with any adverse life event is a natural response to loss, and bereavement is a common experience in old age. In such situations it is sensible to wait a few weeks before making a diagnosis of depression, while encouraging the person to settle into their new environment. Anxiety occurs in about half of people with dementia (Mega et al 1996), with prevalence rates of 5-21% for anxiety disorders and 8-71% for anxiety symptoms (Seignourel et al 2008). Men and women with dementia are equally

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affected by symptoms of anxiety, but such symptoms are more common in people with vascular dementia than those with Alzheimer’s disease. Anxiety is also more common in mild-to-moderate stages than in severe stages of dementia. Anxiety usually occurs alongside depression and seems to limit activities of daily living, resulting in poor quality of life. Assessing anxiety in dementia can be challenging, because several features of anxiety, such as worrying, irritability and restlessness, can occur as part of dementia itself. Further, most people with anxiety may also have depression and/or agitation, making it difficult to delineate these symptoms. Starkstein et al (2007) proposed certain criteria to identify anxiety disorder in dementia. Presence of excessive worry that is difficult to control, along with three out of the following five – restlessness, irritability, muscle tension, fears, respiratory symptoms (rapid breathing, chest tightness) – suggest a high likelihood that the person is experiencing an anxiety disorder (Starkstein et al 2007). Any unexpected or unwelcome life event, such as a move into residential care, can provoke anxiety. The new surroundings of a care home, disorientation to the layout and unfamiliar faces can cause the person to worry. Creating a homely environment by keeping personal photographs and pictures in the room may be reassuring.

Behavioural changes in dementia

Certain behavioural changes in dementia are common and can be considered by carers as challenging or troublesome. Examples of such behaviours are apathy, agitation, aggression (verbal and physical), purposeful walking, sexual disinhibition and abnormal vocalisations. In such situations it is important to recognise factors that cause the behaviour, factors that help it persist and factors that stop the behaviour. Each person with dementia has a unique set of personality traits, personal history, hobbies, likes and preferences, all of which have an influence on their behaviour. Adopting a person-centred approach helps healthcare professionals to understand the context of such behaviours and the messages behind them. Apathy Apathy refers to a lack of pleasure, emotion, motivation or interest. Apathy is possibly the most common of all behaviour changes in dementia; for example, it occurred in 72% of the group studied by Mega et al (1996). It tends to begin in the early stages of dementia. The Cache County study reported that the prevalence of apathy among people with dementia was 27% (Lyketsos et al 2000).

Apathy is stressful for carers of the person with dementia. They may find it difficult to understand why the person appears quite capable of doing things such as changing their clothes or making a cup of tea, but they are not willing to do so. Over time, this can become frustrating. Therefore it may be useful, and may reduce carer stress, to explain the nature of apathy. Apathy is often considered to have three domains: reduced goal-directed behaviour; slowness and lack of focus in thinking; and emotional indifference with flat affect. These components may relate to dysfunction in different neurotransmitters: dopamine, acetylcholine and serotonin, respectively. Although the features of apathy overlap with those of depression, and apathy occurs alongside depression in dementia, apathy may be a distinct entity in its own right (Mortby et al 2012). Some useful questions to ask when assessing apathy include: does the person lack motivation to perform their daily activities despite being able to do so? Does the person often rely on caregivers to do things they are able to do themselves? Are there any other reasons for this, such as medical illness, side effects of medications, sensory impairment or depression? Agitation and aggression The term agitation describes excessive physical activity with the feeling of inner tension. The term ‘restlessness’ is sometimes preferred, but this does not convey so well the inner tension that is usually a part of agitation. Related symptoms include anxiety, irritability, restlessness and abnormal vocalisations. Agitation is observed in 20-45% of people with mild dementia, rising to 90% in people with advanced stages of dementia (Desai et al 2012). Examples of how agitation can manifest include shouting, swearing, verbal threats, pacing, fidgeting, hitting, biting, kicking and scratching. Aggression is usually divided into verbal and physical forms. In the case of dementia, it is often not clear how much intent there is in aggression, or to what degree it arises from misinterpreting a situation. As mentioned above, aggressive behaviour is observed frequently in patients with dementia, and it is common in care homes (Isaksson et al 2011), although precise figures depend on which definition of aggression is used. Verbal aggression is more common than physical aggression. Aggressive behaviour is more likely in severe dementia with impaired language and communication skills, together with loss of self-caring abilities. A common scenario is for a person with dementia to misinterpret staff performing necessary personal care, for example

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Art & science dementia series: 3 changing a sheet, as an assault to which they react by hitting. Anger or irritability when a person is disturbed, for example during personal care and meal times, is far more common than overt, directed aggression. A friendly, respectful approach to divert the patient’s attention can help. It is important to look for possible underlying causes of aggression, such as pain, depression or psychotic symptoms. An analysis of the behaviour will help in understanding and managing it. It is conventional to gain a clear understanding of antecedents (what led up to or caused the behaviour), the behaviour itself, and its consequences for the person and for those around them. Modern approaches to managing challenging behaviour view the behaviour as a form of attempted communication by someone with severe impairments. For example, a person with dementia will take some time to adapt to their new surroundings when they move into a care home. They might believe they have to go home in the evening to cook dinner for their family. When they are not allowed to go out, this can result in frustration and aggression. By recognising the underlying concern of the person and validating their feelings, and through various means such as talking about the person’s family or looking at family photographs, the carer can attempt to alleviate distress. Purposeful walking Purposeful walking is common in people with dementia, and occurs in about 18% of people with dementia in the community, more so as the disease progresses (Klein et al 1999). The term purposeful walking is preferred to ‘wandering’ or ‘walking about’ because the latter two imply aimlessness and lack of purpose, which is not generally the case. Factors that contribute to purposeful walking include social isolation, disorientation in time, feeling lost, lack of cues such as personal belongings, or lack of space to go for a walk. Purposeful walking usually has a purpose, even though the person cannot express it, as these examples illustrate: Anne cannot recognise her own house. She tries to leave the house in an attempt to go ‘home’. Brian has always worked shifts. He does not work anymore, but gets ready at night and goes out in an attempt to go to work. Carol always used to go shopping in the mornings. She now lives in a care home, but still tries to leave to go shopping. Diane has always been busy. She sets out to do the washing up, but when she reaches the kitchen she forgets why she went there. She goes upstairs to empty the laundry basket, and again

forgets about it. Her family thinks she wanders aimlessly around the house. Edward has a toothache. He is unable to sit still because he is experiencing discomfort. He paces up and down the corridor. Frank served in the Special Air Service regiment in the British army and after retiring remained physically fit, running marathons until he developed dementia. He strides around the town if he gets the chance. When helping people with dementia who tend to engage in purposeful walking, the best thing to do may be simply to take them for a walk. However, if that is not possible, it is important to make the environment safe enough for them to walk in. In a care home or hospital this may include removing potential trip hazards, and writing clear signs with verbal and pictorial cues for directions. Well-lit corridors and signs on the doors of toilets and rooms will also assist the person to remain safe and orient themselves. For those who live at home, alarm systems can be set up on doormats and doors to trigger an alert if the person leaves the house. Encouraging the person to carry a mobile telephone and/or identification card and setting up an electronic tracking system can help if the person sometimes becomes lost. If the person is walking because of boredom, engaging them in meaningful activities or giving them useful tasks to do will help. Abnormal vocalisation Abnormal vocalisation is common in dementia, in the authors’ experience, and more so in the late stages of the condition. It includes screaming, wailing, loud disruptive talking and mumbling. It may be associated with several factors, including severe cognitive impairment, severe impairment in activities of living, pain, sleep disturbance, depression, deafness, communication difficulties, and agitation. When assessing someone with abnormal vocalisation, the healthcare professional should investigate whether there is a purpose behind the noise. For example, is it a request for attention or a signal of pain, distress or self-stimulation, or is it because of an inability to communicate verbally? The environment should be assessed to make sure there is adequate lighting, the temperature and noise levels are comfortable and the person has adequate social interaction. It is useful to consider any underlying psychiatric symptoms such as depression or psychosis that might require psychotropic medication. Excessive vocalisation during any personal care intervention may be a clue to uncontrolled pain. Barton et al (2005) proposed a systematic approach to management of this problem.

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Sexually inappropriate behaviour in dementia Burns et al (1990) found that 7% of people with Alzheimer’s disease exhibited sexually inappropriate behaviour. This included indecent exposure, obscene sex language, masturbation, and propositioning. There was no difference in frequency of such behaviour among men and women, but it was associated with increased severity of illness. Hope et al (1997) reported a prevalence of 5% for inappropriate sexual comments in a community-dwelling cohort of people with dementia. There is a dynamic balance of factors that might lead to increased or decreased expression of sexuality (Series and Dégano 2005). When assessing sexual behaviour in dementia, certain areas should be explored in detail. These include the behaviour (description, context and frequency), the environment in which it occurs, and the people who are involved or affected by the behaviour. Issues of risk and the capacity to consent to sexual activity are often important. Management of such symptoms involves identifying any contributing factors, such as environmental stress, psychiatric symptoms or side effects of medications. Education and support for the caregivers, alongside behavioural interventions designed by psychologists, can help.

Biological symptoms in dementia

Sleep disturbances Disturbances in sleep patterns are common in dementia. One possible reason could be neurological changes in the brain causing disturbance in the biological control mechanism of the sleep-wake cycle. Another possible factor is a reduction of daytime activity in people with dementia. Sleep disturbances are varied and often several changes occur, including interrupted sleep through the night, prolonged time to fall asleep and daytime napping. The so-called ‘sundowning effect’ is where there is increased confusion and agitation during late afternoons and evenings. A particular type of sleep disorder called rapid eye movement sleep behaviour disorder occurs in dementia with Lewy bodies and in Parkinson’s disease. Those affected may violently act out dreams during the latter half of their sleep. Sleep hygiene measures, such as setting a fixed bedtime routine, limiting daytime napping, avoiding caffeine before bedtime, taking a relaxing bath in lukewarm water, having a warm milky drink and emptying the bladder before sleep, are generally advocated as first-line measures. Managing other conditions that might interfere with sleep, such as pain or anxiety, is also important. Sedative medications are used to induce sleep but they have side effects, such as over

sedation and causing falls. They should be used cautiously and only for a brief period. Changes in eating habits and appetite Changes in eating behaviours include reduced or increased appetite, altered frequency of eating, improper use of cutlery, preference or craving for sweet foods, or tendency to eat inedible substances. People with dementia might display oral behaviour, which is a tendency to explore objects with the lips and to eat inappropriate items. In severe dementia, cognitive impairment may result in difficulties in recognising food and cutlery. Depression or apathy may cause a loss of appetite, as can other medical conditions or constipation. In more advanced dementia, people will require more help with accessing and eating food. Difficulties with chewing and swallowing become common in end-stage dementia. If lack of appetite persists, it leads to loss of weight and malnutrition. It is important to identify any underlying problems and treat them if possible. Leaving snacks within the reach of the person might encourage them to eat more. Some people will benefit from easy-grip handles on spoons and forks. A dietitian can advise on a meal plan suited to the person’s needs, for example thickened or pureed foods. Swallowing assessments carried out by speech and language therapists are also valuable in managing severe dementia.

Rating scales for non-cognitive symptoms

A number of scales can be used to assess non-cognitive symptoms of dementia, depending on the circumstances. Several of these scales are widely used in research settings. For example: The Cohen-Mansfield Agitation Inventory (CMAI) (Cohen-Mansfield et al 1989) focuses specifically on behaviours such as hitting, pacing and screaming. The Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) (Reisberg et al 1987) focuses on specific symptoms in Alzheimer’s disease, different from those seen in other neuropsychiatric disorders, such as the delusion that people are stealing things, fear of being left alone and fragmented sleep. The Neuropsychiatric Inventory (NPI) (Cummings et al 1994) has frequency and severity scales for behaviours common to Alzheimer’s disease, and includes scales for other types of dementia. It is relatively easy to use and has become the most widely used scale. The Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) Behavior Rating Scale for Dementia (BRSD) (Mack

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Art & science dementia series: 3 et al 1999) focuses on both behavioural and psychological symptoms.

Managing non-cognitive symptoms of dementia: general approach Understanding a person’s life history and their preferences is the mainstay of adopting a person-centred approach in managing non-cognitive symptoms. Non-pharmacological techniques, such as validation, reminiscence, antecedent-behaviour-consequence (ABC) analysis, and music and aroma therapies, should be first-line measures. Enhancing social interactions, adapting the environment to the person’s needs and trying to understand behaviours as the person’s way of communicating their unmet needs will assist in addressing such issues (James and Fossey 2013). In all cases, it is important to consider any factors that can be controlled or treated, especially medical conditions such as constipation, pain and infection. Delirium, or acute confusional state, is the most common cause of a sudden change in behaviour in dementia. Many environmental, medical and individual factors may lead to delirium. It is important to investigate and treat the underlying

cause. Comorbid conditions such as depression and anxiety should also be considered and treatment offered if appropriate. These may require specialist diagnosis and intervention. When considering any psychotropic medication in dementia, it is important to consider the side effect profile of drugs, possible drug interactions, and comorbid physical health complaints before prescribing.

Physical health in dementia Physical health is important throughout the course of dementia, and nurses caring for people with dementia should be skilled in assessment of physical health needs (Higher Education for Dementia Network 2013). Most, though not all, people with dementia are of retirement age and are therefore more likely to have some of the physical illnesses that occur in later life, including cardiovascular and respiratory disease, arthritis, problems with balance and sensory impairment (Forsyth 2013). In addition, some types of dementia are associated with particular physical problems. Vascular dementia is almost always accompanied by other evidence of vascular disease, for example hypertension, ischaemic heart disease or peripheral

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arterial disease. Dementia caused by Lewy body disease is generally accompained by motor disorders, usually slowness and muscular rigidity, even if there is no visible tremor. As dementia progresses, there is a complex interaction between mental and physical health. Medications to treat physical illnesses may contribute to further cognitive impairment, especially drugs with anticholinergic properties such as some antidepressants or drugs used for urinary problems. If people with dementia are admitted to hospital, they are more likely to become disoriented or to develop delirium. They often have longer admissions and their chances of being discharged to their own home are lower than for someone without dementia (Hogg 2013). People with dementia are sometimes not offered active treatment for preventive purposes, such as vaccinations, or for illnesses such as infections or cancer; conversely cancer screening programmes may be considered inappropriate (Torke et al 2013). In advanced dementia, physical problems related to frailty become prominent. These include immobility, incontinence and dysphagia. The combination of such problems may lead to

aspiration and pneumonia, a common cause of death in patients with dementia.

Conclusion Although dementia is usually thought of in terms of cognitive symptoms, such as poor memory, changes in other aspects of mental functioning are equally important. These include changes in mood and relationship with reality, and also those that lead to patterns of behaviour others find difficult to understand or to live with. It is often changes in behaviour, such as becoming aggressive or apathetic, that family carers find most difficult to deal with. These behaviours are often the reason that a person with dementia is referred for specialist advice or for long-term care. However, many of these non-cognitive behaviours can be understood and managed by trying to understand them as a form of communication by the person with dementia NS Acknowledgement Nursing Standard wishes to thank Karen Harrison Dening, Director of Admiral Nursing, Dementia UK, for co-ordinating and developing the dementia series.

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