Behaviour that challenges? Behavioural and Psychological Symptoms of Dementia (BPSD)? Dementia-related behaviour? Or is there a simpler way of looking at this altogether?
Without dementia, our behaviour in response to our feelings is normally tempered by social norms and beliefs. However, in extreme circumstances, with neither time nor headspace for reflection or moderation, we act directly on our ‘fight or flight’ instincts. People without dementia aren’t normally criticised for lashing out at an attacker or trying to escape from extreme danger.
In most dementias, the person’s memory retains facts less and less reliably over time, but it continues to store, as efficiently as ever, the feelings those facts have generated. So those feelings can exist without any context to explain them. We all need to find facts to fit our feelings, so that we can make sense of them and decide what to do next. Feeling fine without knowing why you feel that way is one thing, but unexplained distress can be deeply disturbing, even terrifying. Trying to interpret feelings using out-of-date or misinterpreted facts can create a mismatch, resulting in seemingly odd behaviour. For a carer, trying to deal with behaviour you don’t understand has risks for both you and the person concerned, and your response can unintentionally make it worse. So understanding the cause is the key to responding in a way that makes the person feel valued, free, accepted and safe.
Aggression – verbal or physical (unacceptable negative response) This may be a perfectly normal response to extreme fear, pain or frustration. Sometimes the context isn’t obvious to the carer or even the person concerned, so quizzing them won’t help. They are unlikely to be able to join you on your wavelength, but you might be able to find theirs. See also illusions, irrational behaviour and PTSD.
Appetite changes If the parts of the brain that process sensory information are affected, the senses of smell and taste can change. Even favourite foods can lose their appeal, but a liking for sweet things seems to increase over time, especially the comforting yumminess of chocolate. When that is combined with lack of stored factual memories of whether the last meal or snack was recent or longer ago, it’s easy to see why someone with dementia might accidentally miss a meal, eat twice or have a less healthy diet than before.
Confabulation (fabricating ‘imaginary’ experiences) Most of us piece together the elements that we’re sure about from a past event, and then ‘join the dots’ to complete it, using memory, logic and common sense. The necklace isn’t in its place. Granny is forgetful and the carer remembers her losing it before, so she’s ‘obviously’ misplaced it again. Granny says the carer took it. Obviously. She must have done. That carer has daily access to the drawer. However, neither of them saw what happened, so maybe they’re both wrong. Perhaps Mum noticed the clasp was damaged when the carer wasn’t there and told Granny she was getting it mended, but Granny’s memory didn’t store those facts. The carer ‘jumped to the wrong conclusion’ but Granny ‘confabulated’, because that’s what people do when they have dementia. Actually, they both got it wrong for similar ‘joining the dots’ reasons; it’s just the way it’s described that’s so different.
Crying (for no apparent reason) You may not know why someone is crying, and they might not know themselves, but upset feelings are real and painful, so don’t dismiss them just because you don’t understand why it’s happening. Physical pain, frustration, sadness, unexplained loss or bewilderment – all may be possible explanations.
Delusions aren’t behaviours – they’re false beliefs. In dementia these are usually caused by illusions, misinterpretations or ‘joining the dots’ errors (see confabulation).
Disinhibited behaviour (usually behaving inappropriately in public) This can be a response to emotion without context (see paragraph 3) or may be caused by damage to areas of the brain concerned with impulse control, social and sexual behaviour, as in Fronto-Temporal Lobe Dementia.
Falls People with dementia are more likely to fall and there are many reasons (see illusions, incontinence, hoarding, sleep disturbances, pain, disinhibited behaviour, irrational behaviour, PTSD) as well as difficulties in managing balance and mobility issues.
Hiding (deliberately?) Putting something down somewhere that seems logical at the time, but then not being able to find it later, is easily done at times when our concentration has lapsed momentarily. See confabulation: the carer might assume that Granny has ‘hidden’ her necklace, when perhaps she has ‘misplaced’ it, or it might even have been moved by someone else.
Hoarding (keeping things ‘in case they come in useful’, even when that’s not likely) Many older people have lived through times of deprivation or shortages, when this type of behaviour might have been normal, even sensible. But when that habit is combined with memory changes in dementia, the result may appear to be a pointless accumulation of random things that are of no possible use to anyone.
Illusions (misinterpretations by the brain when facts are missing) This can happen fleetingly to anyone when startled. Sensory impairment causes extra problems when combined with dementia. If we don’t see or hear clearly, we use memory to fill in the details – that loud bang was probably a door slamming (if someone just left the house), a firework (if it’s Bonfire Night) or a dropped pan (if someone is washing up). See also confabulation and PTSD.
Incontinence (escaped wee or poo) This can be a matter of not getting there in time, not managing to hold on, leakage, not knowing you need to go, etc etc. Factors include distraction, not finding the toilet, not managing clothing, mobility issues, constipation, infection, bowel disease etc etc. These can happen to anyone but dementia can make them harder to manage, and ‘just in time’ can easily become ‘just too late’.
Irrational behaviour (behaviour for which others can see no logical explanation) The person behaves in line with their feelings, which may have been caused by something the carer knows nothing about (see paragraph 3 re mismatch). See also illusions, PTSD.
Mood swings Recent factual memories give context to our feelings, so our mood tends to remain stable unless something new happens. But in advanced dementia, when there are few reliable recent facts to go on, a feeling can easily trigger out-of-date and possibly traumatic memories, and the person’s mood can change in an instant. (See also illusions, confabulation, PTSD.) Fortunately, it can improve just as quickly, if we know how to respond.
Paranoia (false belief of personal threat) This can be associated with illusions, hiding etc – when memory hasn’t stored the facts of an item being moved, it can seem ‘obvious’ to the person that someone else did it with malicious intent. However, unless you know the facts, it isn’t safe to assume that they didn’t either. Anyone with dementia can be vulnerable to financial and other abuse, so if the person raises a concern, don’t dismiss it without checking. See also PTSD.
Perseveration (repeating an action or part of an action) If your memory didn’t store what you’re in the middle of doing, you can get ‘stuck’ part-way through the process.
Poor appetite Eating alone can be a cheerless activity; being watched can be distinctly off-putting. Eating is a multifaceted occupation and an important social ritual. Care workers are rarely encouraged to eat with their clients, and may not even be allowed to do so. They often use the time to complete other tasks or paperwork, or if the person can’t feed themselves unaided, they spoon-feed them. Better to eat with them as a social activity whenever possible, giving any help required as unobtrusively as possible to preserve their dignity. See also swallowing difficulties.
Post-traumatic stress disorder (PTSD) If people with dementia have been through horrific experiences in the past, sometimes their ‘joining the dots’ errors can lead them to memories of past trauma. Such memories, without their context to explain them, can become self-perpetuating, which must be unbearable.
Repetitive questioning (asking the same question over and over again) If your memory hasn’t retained the answer, you won’t know what it is, so you may well ask again – and again.
Restlessness (a feeling of wanting to get going and do something) If your memory didn’t store what you were about to do, it can retain just that restless feeling. This is sometimes linked to physical discomfort and/or lack of exercise (see also irrational behaviour, sundowning, wandering).
Seeing things differently This can be the result of damage to the back of the brain eg in posterior cortical atrophy (PCA). Sometimes, however, it is simply misinterpretation or illusion, as we normally rely on context to make sense of what our eyes see.
Sleep disorders Disrupted routines, night staff in day clothes and noisy night-times can all make it hard to distinguish night from day. Bright or daylight-type (blue toned) light in the evening and night can upset our body’s circadian (day/night) rhythm. Inactivity and memory changes affect our ability to gauge the passage of time. Pain and anxiety can cause insomnia and some prescribed medications can cause sleep disturbance as a side effect.
Social withdrawal (avoiding social situations one used to enjoy) Limited access to recent facts can lead to embarrassing social encounters, so it can become easier and less painful to stay away.
Sundowning (trying to leave a care facility in the afternoon/evening) Going home at the end of a day at school or work, or collecting children from school, may have been normal and habitual. Lack of recent facts can make a person’s current surroundings feel totally unfamiliar, even when they have been living there for decades, so they may feel as if they are ‘out’ or ‘away’ and not at all ‘at home’. So it is not very surprising if someone wants to leave (see also restlessness).
Swallowing difficulties These may be part of withdrawal or vegetation, and/or there may be a physical element. The process of swallowing even occurs while we are asleep, but when we eat, it is under our conscious control. So in the later stages of dementia, it can become hard for the person to know quite what to do next (see perseveration) in order to make the food go down. Small quantities of soft, moist, appetising food are easier to swallow than anything hard or dry.
Vegetation (becoming passive and inactive) This may be linked to the ‘freeze’ instinct, when frightened or injured animals instinctively keep still so that they are less visible to predators. If life becomes unbearable (see also PTSD), some people appear to ‘give up’, refusing food and drink, becoming catatonic (immobile and unresponsive) and just waiting for it all to end. Don’t assume that they can’t hear you, or that they’ve lost their mind. Tender loving care is still (perhaps especially) important now, and a soothing voice may be comforting.
Wandering (walking somewhere, but being unable to find, or even identify, the intended destination) This can be linked to restlessness, lack of exercise or just a normal desire to go for a walk, combined with a memory that doesn’t store facts or places well. See also sundowning.
Most of these ‘behaviours that challenge’ might be better described as normal responses to challenging situations. So it’s not the behaviour that’s the real problem. If it’s caused by distress, then that’s what we should be trying to ‘manage’. The best way to do this is to validate the person’s feelings, reduce the causes of their stress (where at all possible) and do our best to promote their well-being. As a result, we might notice that some of these behaviours begin to subside and may even stop altogether. Or maybe we’ll just understand them differently…
See also http://www.understandingdementia.co.uk/
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