Living with Semantic Dementia

Semantic dementia causes problems in understanding and using language, recognising people and objects, and changes in behaviour. Professor Julie Snowden offers some suggestions on ways to deal with these difficulties.

Language problems

People with semantic dementia show a progressive loss of understanding of words.  That means that they sometimes do not understand words that are said to them. In their own speech they may use the wrong word because they are losing the subtle distinctions between word meanings. There are various things you can do to aid communication.

Try to use simple vocabulary.  People with semantic dementia will normally understand common words (that are used very often in conversation) more easily than uncommon words (that are used only rarely).

Name things in a consistent way.  In English, there are often several ways of referring to a single object (e.g. television, TV, telly; glasses, spectacles, specs).  For most of us it is easy to know that these terms refer to the same thing.  For people with semantic dementia it is not.  They may understand one term but not another.  Referring to an object in a consistent way can help.  The same applies to names of people.  For example, Elizabeth, Liz, Lizzie, Liz Fletcher might all refer to the same person, but someone with semantic dementia might recognise only one of the names.

Adopt vocabulary used by your relative.  If the person with semantic dementia always refers to their glasses as “my specs” then it helps to ensure understanding if you refer to them in the same way “your specs”.  If they call a friend “Lizzie” then it helps if you do the same.

Provide contextual information.  People with semantic dementia typically have good memory for their daily activities. They might have difficulty understanding a word or name when they hear it in isolation but understand it when it is placed in a personal context.  Linking object names to their use and people’s names to the context in which they are encountered can help understanding.

For example:

• The mower – that we use for cutting the grass
• Lizzie – who comes round for coffee on Fridays

Use visual cues and gestures.  Communication can be helped by using different sources of information to convey a message.  For example, it is easier to understand the request “Could you pass the marmalade?” if you are pointing to the marmalade at the same time.

Recognise idiosyncratic word usage.  People with semantic dementia sometimes use words incorrectly or over-inclusively.  You may get used to the incorrect words and know how to interpret them (e.g. “we’ll go the bank to get some milk” really means “we’ll go to the shop to get some milk”). The important thing is not to interpret individual words literally, but rather to try to work out what the person is trying to convey.

Problems in Recognising People

People with semantic dementia may have difficulty remembering who people are.  Context is important.  For example, they might recognise a neighbour more easily when encountered in a habitual setting (e.g. outside their house) than out of the usual context (e.g. by chance in the supermarket). 

Provide context.   If you meet an acquaintance who your relative does not recognise it can help to provide contextual information, linking the person to a particular time, place or activity (e.g. It’s Mike – who lives next door to us/ who comes to do the garden on Wednesdays  / who you see when you go to the club / who you play golf with).  Try to use the same contextual links consistently to strengthen the association with the person.

Keep photographs on display.  Sometimes family members worry that the person with semantic dementia will cease to recognise them.  This is more likely to happen if they do not see each other very often.  It can help if family members visit on a regular basis.  Of course this is not always possible if they live a long distance away or work abroad.  Keeping photographs on display in the home can help, especially if you draw attention to them regularly.  Photographs can also be helpful when a family member telephones – if the person with semantic dementia seems unsure who is telephoning it can help to link the caller with their picture.

Problems in Recognising Objects

People with semantic dementia can have difficulty recognising objects and remembering what things are for.  There is evidence that personal familiarity and context is important. They are likely to recognise their own belongings more easily than other examples of the same objects (e.g. their comb compared to someone else’s comb).  They also recognise objects more easily when they are in their usual setting (e.g. a teabag in the jar in the kitchen) rather than in an unusual location (e.g. found lying in the street).  There are things you can do to help.

Keep things in the same place.  Make sure that household objects are kept in the same location in the home.  For example, the shampoo could always be left in the shower cubicle – rather than in random locations in the bathroom

Remove ‘irrelevant’ objects.   People with semantic dementia can learn to link an object with a place (e.g. shampoo – shower cubicle).  It is important, though, that ‘competing’ objects (e.g. bathroom cleaner) are not also left in the same place, as one might be confused with the other.   It is best to ensure that objects that have different functions are kept in different places.  Potentially dangerous or toxic substances, such as bleach, should be kept out of sight, and if possible out of reach.

Take own belongings with you.  If you go on holiday it can be helpful to have personal belongings (e.g. own sponge, own toothbrush, own shampoo) with you rather than rely on those supplied by a hotel. 

Changes in Behaviour

People with semantic dementia may show alterations in their behaviour. 

• They may show a narrowed range of interests and develop preoccupations with certain activities. 
• They often show a preference for routine, and ‘clockwatch’, liking to do things at a particular time of day. 
• They may seem more self-centred and less considerate of others’ needs.
• Sometimes behaviour may seem socially inappropriate. 

These changes are part of the condition and not under the person’s control. Many of the alterations can be seen, at least in part, as a consequence of the person’s semantic impairment.  The gradual reduction in understanding means that people with semantic dementia inhabit an ever-narrowing world.  They are not able to see things outside their own vantage point, from another person’s point of view.  They may not fully understand social situations so are not in a position to adjust their behaviour (e.g. whether to be familiar and affectionate or polite and formal).  If they do not recognise acquaintances they will be unaware of seeming ‘rude’ in not acknowledging them.

The adherence to a fixed routine and daily timetable can actually be helpful for people with semantic dementia.  The reason is that they typically understand notions of time (something happening at a particular time of day, or things happening in a particular temporal order).  Therefore, linking an activity with a particular time of day can help their general understanding (e.g. “At 5 o’clock we have our tea.  At 7.30 we watch television”) and give meaning to their lives.

There are occasions when behaviours can become particularly problematic.  These are some examples:

Overfamiliarity.  Occasionally people with semantic dementia are over-familiar, approaching strangers and talking to them in the street. A ‘quiet word’ with the stranger in question can often relieve a potentially embarrassing situation.  An alternative is to carry cards that you can pass on, simply stating that your relative has a brain condition which affects understanding and behaviour.

Self care.  People with semantic dementia may sometimes be unwilling to bathe or change their clothes. This may relate partly to lack of understanding.  They may no longer understand the need to bathe. Some people may become fearful of the shower as they no longer understand the significance of the water falling onto them.  Resistance to changing clothes may relate in part to people’s desire for routine – they want to wear the same clothes all the time.  Some relatives find it helpful to wash or shower at the same time to provide a reminder of what to do and to show that the water is nothing to be afraid of.  Others find that taking a bath is less problematic than showering because it avoids the situation of water falling over the person’s head.  Others ensure that taking a shower is incorporated into the person’s daily routine and occurs at a fixed time.   Some relatives find it helpful to buy identical versions of the same item of clothing (e.g. underwear), so that one item can be washed and immediately replaced by an identical item.

Driving.  There comes a time when it is advisable for people with semantic dementia to stop driving. They may have difficulties recognising road signs, or show less consideration for others on the road. The issue of driving is a major area of contention for many people. In part this is because driving skills are in many ways very well preserved.  The person with semantic dementia might quite reasonably think that they have always been a good driver, continue to be so and therefore can see no reason why the doctor has advised them to stop.  Moreover, for many people, driving is part of their routine. As people with semantic dementia like to stick to routine they do not want to change. There is no easy solution.  However, the general advice is to try to alter the person’s routine very gradually over a period of time.  It is best not to wait until the person is no longer fit to drive.  Rather, try to reduce their driving before this happens, for example, increasingly taking advantage of free bus travel.