Interpreting Behaviour

Depending on their stage of dementia, the person may not be able to communicate in words that they have pain or where it is, even when they're capable of speech. They may not even know within their own mind what part of their body is hurting or what that means. In these cases pain can come out as upset behaviour such as agitation, irritability or shouting, or alternatively it may come out as withdrawing into their shell and not wanting to move. Distraction caused by the pain may be confused by others as simply part of the symptoms of dementia.

See our information on pain assessment tools. Pain or discomfort could obviously be caused by any number of things, including an invisible pressure sore, constipation and wind, toothache, headache or an injury or illness.

An infection can cause a change in behaviour - for example a urinary tract infection (UTI) can cause greater confusion.

A sudden step-change in behaviour caused by an incident, such as remembering a loved one has passed away, is likely to return to normal before very long.

Whilst we covered the possibility of pain or discomfort above in relation to a relatively sudden step-change in behaviour, it should also be considered even when there didn't appear to be a step-change - a physical problem may have increased gradually, or there may only be certain conditions under which it becomes uncomfortable. As above, consider using a pain assessment tool, and consider the possible causes.

The person may have difficulty remembering where the toilet is, or finding it, or getting there in time (given slower mobility and/or realisation they need it only a shorter time in advance). This may make them, for example, anxious or restless trying to find the toilet. See our section on signs, labels and talking buttons around the home. You can also try taking the person to the bathroom at the appropriate intervals (and at their regular time for bowel movement). Also consider whether there's difficulty opening a zip, in which case try velcro fasteners or pull down clothes (making sure a change doesn't cause more confusion). Consider getting a commode (in the UK you can be provided with one as loan equipment by social services or the NHS).

Incontinence can be uncomfortable on the skin and very embarrassing, and can also lead to pressure sores.

If the person feels thirsty but doesn't know what to do, where to get a drink, or is embarrassed to ask for one, then this will obviously affect their behaviour. Consider having cups of ready-diluted squash available, or labelling where to get a drink.

Older people have a reduced sense of thirst, and dementia reduces this still further over time. The result is they may not feel thirsty even though they are in fact dehydrated. Dehydration can cause many physical problems, including impairment of brain functions. For more information see our section on dehydration, which includes how to assess whether someone is dehydrated.

If the person feels hungry but doesn't know what to do, where to get food, when a mealtime is, or is embarrassed to ask for something, then this will obviously affect their behaviour.

An infection can cause a change in behaviour - for example a urinary tract infection (UTI) can cause greater confusion. A urine test may help identify a UTI.

Poor eyesight or hearing has two forms of effect. Firstly it reduces the person's wellbeing, by disconnecting them from their surroundings and from conversations, making them feel more disoriented and isolated. Likewise, it reduces their ability to enjoy television, photographs, music etc.

Secondly, it can also result in confusion or misinterpretation and misunderstanding, so they may respond to what they think they heard rather than what they did hear.

See our sections on eye tests and on hearing tests.

Disruption of sleeping patterns and poor quality sleep obviously affect anyone's mood and their ability to understand things. See our section on sleeping.

Many medications can have side effects such as drowsiness, or that may influence behaviour (including positively). Whilst unwanted side effects are uncommon, and those that do occur usually do so within a few days of starting the medicine, it's worth being aware that they can sometimes start much later e.g. after six months.

Never start, stop or change prescribed medications except under the directions of the prescribing doctor.

Lack of fresh air can result in sleepiness during the day, headaches, or increased confusion etc. See our section on the home environment and fresh air.

Noise

Noise could be defined as anything that's either too loud, goes on too long, is distracting at an unhelpful time, or is a sound they might think unpleasant. What may be noise to one person may be a nice long musical film to another, and if the person isn't able to control the sound or move away from it then it could irritate them or simply bombard their senses too much. This can potentially be a problem in a care home, especially if a TV is left on all the time (not something we recommend) or is turned up loud because of someone else who's hard of hearing.

Some sounds can also make you anxious - such as the loud, strident music during the tense bit of a thriller film.

Clutter

Clutter could be confusing to look at, or make it more difficult to find an item wanted - see our section on the home environment and clutter.

Pictures on the wall, or curtains, might potentially be confusing, too 'busy' or may be unsettling in the half-light - see our section on the home environment and 'busy' paintings and patterns. Mirrors can also be confusing.

Lighting

Good lighting is important from several points of view, noting that old folks are only a third as sensitive to light as younger people - but don't make lamps unpleasantly bright or dazzling to them. It might also help with day/night sleep patterns.

Poor lighting can make objects hard to find or cause shadows that seem menacing, and if the room looks gloomy it can make you feel gloomy.

For more information see our section lighting.

Unfortunately, a TV programme that's very suitable can be followed straight afterwards by one that's highly unsuitable and frightening. Advert breaks can also be confusing, being a series of short unconnected items and often directly telling you to do something. Try to choose channels carefully (and it's usually possible to remove channels from the list available), and consider DVDs. For radio, consider m4dradio.com.

In their own home

Someone with dementia may not fully recognise their own home, instead thinking of somewhere they used to live. It's not uncommon for someone to say occasionally that they want to go home even though they're already there – their view of 'home' may be a mixture of a past home, the situation of living with a loved one, and simply where they feel comfortable.

For orientation within their home see our sections on signs, labels and talking buttons, highlighting light switches, and room layout.

In a care home

Obviously, a care home will not only be unfamiliar visually, but the whole concept of sharing a home with a lot of other people they don't know is likely to be unfamiliar. It's not uncommon for someone to think occasionally that the other residents have been visiting them in their own home and are now overstaying their welcome. However, most of the time the reassuring presence of carers, and perhaps of others, should help comfort them in another way - that they're not on their own and someone else knows what to do, even at the times they aren't interacting with them. Consider having a particular favourite item of furniture or ornament in their room to make it feel more like their old home.

Photos of loved ones

Photos of loved ones' faces in the day room (or in an album if in a care home) could help make it feel more like the home they're thinking of. We'd avoid putting new photos in the bedroom, unless in a care home so there's nowhere else to put them, in case they're mistaken for real people in the dark. We'd suggest adding a big label with their name, and perhaps their relationship e.g. '(SON)'. Having a frame line around the photo might help avoid any confusion with a real person, but avoid a black frame line in case it's thought to denote they've passed away. Be careful in case a photo of a loved one who has passed away may upset them.

Disorientation of age

The person may also be disoriented in terms of their age and situation - for example thinking of themselves as having small children they need to take care of, or needing to go to work or being at work. When asked how old they are they may think they're 39, for example, and be shocked, upset or unbelieving if they're told their true age - in which case use birthday cards without their age printed on, even when celebrating a milestone age. Try to find a solution to these sorts of disorientation that moulds rather than directly confronts their view of reality - for example, having photographs on the wall of their children at a couple of age steps up to the present adults might help, labelled with who they are and perhaps 'growing up' and 'now'.

Lack of cues

Someone with dementia may be very disoriented as to what time of day it is, and as to when things are normally done. This may partly be because they can't read a clock any more - in which case there are 'day and night' clocks that also display whether it's morning, afternoon, evening or night, and also talking clocks and watches that speak the time when a button is pressed - see our section on day/night clocks, talking clocks and watches.

They may not recognise the cues that govern a normal wake-sleep cycle, including lack of daylight at night - and of course given that the sun comes up and goes down at very different times of day between summer and winter we also rely heavily on clocks and the things we do in our normal daily routine.

Reduced sense of passage of time

They will also have less of a sense of the passage of time, particularly if they're bored with nothing to occupy them or are anxious that they haven't seen anyone for a while - either of which could make them feel that more time has elapsed than really has. See our section on entertainment, and consider having a simple reminder on the wall of what will happen in the day, for example to say that a carer will come to cook lunch and tea, or to say that you phone them however many times it is every day. If they worry they've forgotten to do something, the reminder could say there's nothing they need to do - they can enjoy some music or watch the television. 'Talking buttons' are available that can play a short message you've recorded for reassurance.

Equally, someone may not think as much time has elapsed as really has, particularly if they have naps during the day.

All these factors may combine to make the person expect things to be happening at the wrong time, and for example to become anxious or upset that they aren't happening.

Lack of structured daily routine

Try to have a structured daily routine, and use it to signpost the stage of the day and what happens next, for example saying "It's eleven o'clock so here's your elevenses, I'll let you know when it's lunchtime in an hour or two". This also helps if someone's lost track of what time of day things are done at, or if they're anxious they're going to forget to do something.

'Sundowning' behaviour in early evening

It's common to see changes in behaviour in late afternoon or early evening - something known as 'sundowning'. In this case try to consider all the potential causes and factors described in this section on behaviour, and try the general helpful techniques.

Someone on their own can feel very anxious that they don't know where other people are - either a particular loved one whom they rely on to know what to do or how to do it, or the reassurance of seeing people in general. Even when someone such as a spouse is nearby, the person with dementia may follow them around to keep sight of that reassurance. Even if you say you're just popping into the other room for a couple of minutes, within that time they may forget how long you said you were going for.

There are potentially three aspects to consider:

• the feeling of not knowing what to do or how to do it
• the feeling of not being in contact
• the lack of an activity to occupy and relax them.

We deal with each of these below.

Not knowing what to do or how to do it

For not knowing what to do, consider having a simple reminder on the wall of what will happen in the day, for example to say that a carer will come to cook lunch and tea, or to say that you phone them however many times it is every day. If they worry they've forgotten to do something, the reminder could say there's nothing they need to do - they can enjoy some music or watch the television.

Not being in contact

For the feeling of not being in contact, consider 'talking buttons' that can play a short message you've recorded for reassurance, mentioning how you get in contact with them and how carers come to visit at what points each day. Also, having an easier to dial phone will help (you may of course find you get a lot of calls, although equally this may reduce as they get the reassurance that they're able to contact you if needed).

Lack of an activity

See our section on activities and entertainment for things to occupy them.

Someone with dementia or poor mobility may be unable to control their own body temperature by adjusting clothing or room heating. In our section on their body temperature we include the following issues relating to the room:

• having shawls available during the day, and bedclothes layers the person can roll up or down for themselves at night
• central heating settings at night
• central heating can be controlled and monitored remotely via the internet by retrofit systems
• the heat from direct sunshine through windows in the summer
• having an electric fan ready for hot days in the summer.

There's inevitably a loss of independence (not being able to do what they want, when they want it, or needing to rely on others) resulting from poor memory, physical difficulties, restrictions to keep them safe, the need to keep things to a sensible time of day, and obviously when they're no longer in their own home but in a care home with others.

Try to identify any ways they feel restricted, and consider what substitutes are possible - for example, if they're no longer able to paint then they may enjoy stencils, a spirograph, scratch paper, or scratch art.

In a care home there's also very little room to keep their own things, and irreplaceable items may be best kept at your own home, so they may feel they've lost things they wanted to look at. If that's the case then you could store things and bring them in every now and again or when requested, and of course irreplaceable photographs can be scanned and copies reprinted.

Boredom

Nobody likes to be bored, and whilst you're probably on the go all the time and would like a rest it's easy to overlook that it may be just the opposite for them. It may also be there's an activity or entertainment going on but that they're not interested in it, or the same type of thing has been going on too long for them and they need a change.

Our section on entertainment has suggestions for good activities, some of which can be done on their own and some of which need to be guided or shared.

Beneficial activities

Even when the problem isn't boredom, activities particularly such as music or singing can improve the mood and distract from other issues such as anxiety - although you should still consider what else can be done to alleviate the core issue (for example a sign to remind the person that you phone them, and a carer comes, however many times each day).

Obviously, if the real issue is pain or discomfort then this needs to be identified and resolved, rather than masked with something distracting.

Overwhelming or overexciting

Also consider whether an activity might be too loud or overwhelming, or have been oversuccessful and got overexciting (think of a child who's getting overexcited).

In the latter case you could try tactfully offering them a cup of tea or something that puts a natural pause in the activity without them feeling you're stopping what they were enjoying so much (but do see our note on avoiding hot drinks being boiling hot).

If the person's reacting against doing something that could be postponed, for example they don't want to have their hair washed and you can't find why, then try doing it another time. The problem may not be the activity as such, it may be to do with other things that have happened recently, or something else they were wanting to do instead, a misunderstanding about what the activity was, or simply some old memory they happened to be thinking of at the time.

If there isn't an obvious incident that's being responded to, consider whether there's a repeating pattern of when, where, around whom, during what, after what, about what etc the behaviour occurs, and likewise when (etc) it doesn't occur. Any pattern may be blurred and not fully consistent, but there may be some indication of a key influence.

In addition to considering what's happening, consider what's not happening that they might have been wanting (for example, are they just bored and wanting entertainment, or frustrated that they aren't able to do something). It may be useful to consider what sort of feelings they appear to have, looking through the list further below.

It's worth noting that the person may be responding to a memory from a time long gone rather than to something happening at the time, and whilst that memory may have been triggered by seeing or hearing something, equally there may be no obvious prompt.

For example, if you're dialling a telephone number that's written down then you need to read and remember part of the number, dial it, look back at the written number and remember how far through you are, and read and dial the next part. Tomorrow you don't need to remember what the number was, and you won't.

Similarly, if you drop off something for dry cleaning on your way to work, you remember that you need to pick it up on your way back, where the shop is, where you put the ticket, and what clothes you're expecting back. In a year's time you don't need to remember the particular set of clothes you took, so they don't go into long-term memory.

One of the first symptoms of dementia to be noticed is reduced short-term memory ability. This makes certain tasks more difficult to do correctly, as in the phone-dialling example, and means that other tasks (or parts of them) may get forgotten, as in the dry cleaning example.

Try to arrange things so that short-term memory doesn't need to be relied on - for example using an easier to dial phone with photo-buttons that dial preset numbers, labelling things with very simple directions that can be followed in sequence (see our section 'instructions with steps'), and providing reminders when something is to be done.

For example, we recognise the faces of our loved ones, we know the layout of our home and where to find a tin of soup, we remember all the steps of opening the tin (and being careful of sharp edges) and heating it up in the microwave. We remember that we eat at certain times of the day, and when we sleep.

Similarly, if someone petted a dog as a child and was bitten, then that event will have been stored and whenever they see a dog their memory will tell them to steer clear of it ('once bitten, twice shy'). This example illustrates the fact that long-term memories are often of traumatic or difficult events in addition to particularly nice or landmark ones.

As dementia progresses, long-term memory (like all brain functions) becomes affected too. This affects the ability not only to recognise people and places, but also to perform tasks and to keep to the usual routine. Try following the advice in our section on signs, labels and talking buttons, and our section on day/night clocks, talking clocks and watches.

Moreover, when searching through memory for a fit to the current situation nothing may be found - so that placing a plate of food in front of them may not trigger an understanding of what to do. In this case try different prompts that may trigger the right memory, such as saying "Here's your lunch, and there's your knife and fork to eat it with". If you're having lunch too, they may also find it easiest (and least embarrassing) to follow your lead.

When searching their memory for the nearest fit to the current situation a poor fit may be returned, leading to misinterpretation of the situation and what to do. For example, a teddy bear might remind them of the dog that bit them, and therefore be regarded as an unpleasant and dangerous thing rather than a nice one.

Continuing the previous example, it's possible that the old memory of being bitten by a dog, once retrieved, may linger and end up becoming thought of later that day as something that just happened earlier in the day.

When it appears that a bad memory may have been picked up, whether in error or not, try to redirect them to a good memory - preferably in a related area. For example, in the above case you could try asking whether they had a doll rather than a teddy bear when they were little, or what their favourite toy was that they used to play with.

Someone with dementia may mix up the past with the present in a more continual way - to them they may still have children who need to be picked up from school.

Try to find a solution that moulds rather than directly confronts their view of reality - for example, having photographs on the wall of their children at a couple of age steps up to the present adults might help, labelled with who they are and perhaps 'growing up' and 'now'.