Courtney Lewis, a speech pathologist in Australia, spoke recently to the FTD (frontotemporal degeneration) support group in Hawthorn. She addressed swallowing, eating/chewing, oral behaviors (common in the behavioral variant of frontotemporal dementia), taste/smell, and taking medication. Helpful notes from the meeting were taken by Wendy Kelso. I read these notes on the FTD Support Forum, posted by online friend Glen, whose late wife had semantic dementia. Wendy has given permission for these notes to be shared.
Note: I’ve left in all the Australian spellings and terminology (eg, “swallowing tablets” for “swallowing medication”).
Robin
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Summary of Discussion with Courtney Lewis, Speech Pathologist
FTD Support Group, Dementia Australia Hawthorn
1st November 2019
Minutes: Wendy Kelso
SWALLOWING
– Swallowing is a highly complex activity that requires planning and co-ordination of a number of brain regions
– Controlled by motor cortex – muscles/movement
– Orbitofrontal cortex – behaviour
– Precentral gyrus – voluntary initiation of the swallow reflex
– Brain stem – cranial nerves
– When you swallow, the airways are closed to prevent food going down
the wrong way
– If the windpipe does not properly close off, or if swallowing is not well coordinated, choking can occur
– Aspiration pneumonia can occur if food enters the lungs
– Malnutrition and dehydration may occur as a result of swallowing difficulties
To help the swallowing reflex:
– Verbal instructions usually don’t work – better to use tactile (touch) cues to swallow
– Tap or stroke the persons chin or cheek gently to encourage swallowing
– Take little sips of water when the person has the sensation in their mouth
– Put a cold spoon on their lips to open the mouth to allow them to be fed
– Sometimes people have forgotten what to do next after chewing and need prompting to swallow
– Try and provide food that needs less chewing – steak/tough meat requires too much chewing and is effortful to swallow
– If the mouth is overfull, this affects swallowing
– Try and encourage smaller mouthfuls of food to assist swallowing
EATING/CHEWING
– Brain changes in FTD cause changes in eating, drinking, chewing and swallowing behaviour
– Many people consume food and drink to excess and cannot control their food intake
– They may consume large quantities of sweet foods, sweet drinks and/or alcohol and cigarettes
– They may eat items that are unpleasant or non-food items, such as soap
– Sweets have a high reward centre in the brain – quickly sends pleasure information to the brain
– If the person doesn’t chew their food, it usually reflects frontal/behavioural changes rather than a problem with swallowing
Eating Tips:
– Change the environment – reduce the volume of food/drink and the number of options
– Provide healthy food options in portion controlled sizes
– Never have a buffet meal if the person overeats and cannot monitor their food intake
– Use smaller spoons, plates, cups and wine glasses
– Routine helps – regular meal times in the same place using the same cutlery and crockery. This helps the person recognise it is meal time
– Using hands to eat and finger food is fine – it can assist people to remain independent at feeding for longer
– Changing the temperature and texture can assist the food to go down
– Soup can make the food more moist
– Some people will require 1:1 supervision with meal times to assist the process and ensure safety
– Chewing requires a lot of effort – it is a form of exercise
– Sometimes people become breathless when chewing and this can lead to aspiration
– Fatigue affects chewing and swallowing
ORAL BEHAVIOURS
– Common behaviours include lip smacking, lip chewing and tongue clicking
– Strategies can include sucking or biting items such as a soft piece of fabric or using ‘chewy tubes’
– Chewy tubes are highly tactile and can be in the form of a necklace or bracelet
– If the person licks their lips, try using lip balms or chapsticks
– If the person tongue clicks or thrusts, try and reduce the sound
– If the person is a smoker, this can leave their mouth feeling very dry and they can exhibit a variety of oral behaviours
– Try and encourage sips of water
TASTE AND SMELL
– Changes to taste and smell are caused by changes in the frontal and temporal lobes in the brain
– These changes are very common in bvFTD
– The olfactory bulb (smell) is usually working but the information is not being relayed back to the other areas of the brain that control smell
– Sweet foods are highly desirable as they have a stronger more pleasant taste and have a high reward and value system in the brain
– People with FTD find it difficult to process sour/bitter and disgusting foods
– As an example, broccoli and cauliflower have a ‘negative’ taste, so is less palatable than ice cream to the person with FTD
SWALLOWING TABLETS
– Sometimes swallowing tablets with ice-cream, yoghurt or custard can help
– Many people will find it very hard to swallow tablets with water/liquid
– Swallowing tablets with water is a complex multi-step task and requires more co-ordination