Home     About     Early stages     Living with     Later stages     Fundraising


Progression of Symptoms:

BvFTD: Behavioural and personality problems continue over time and other aspects of thinking may become affected. There is wide variation in the tempo of the disease between individuals, and some people have a slower form of bvFTD that progresses over a number of years (in some cases over ten). However, in the majority of patients behavioural problems continue to progress such that by around two to five years after the onset of symptoms people generally have problems carrying out their normal activities (particularly where these involve interactions with other people, such as working and driving) and will need extra care and support.

For more information on the progression of the variants of PPA, please visit the PPA support group page.

Swallowing problems:

Swallowing is a complex process, which involves many different aspects of thinking as well as the muscles of the mouth and throat (pharynx and larynx) and the route to the stomach (oesophagus). FTD can affect a person’s ability to concentrate on their meals, to recognise the foods, to feed themselves or to co-ordinate chewing and swallowing. Difficulties with swallowing can have serious consequences; people may be at risk of losing too much weight, chest infection and pneumonia or choking on food. Many co-occurring medical issues can also cause swallowing difficulties.

If someone is concerned about their swallowing it is important to seek advice from a speech and language therapist, as strategies recommended will vary according the areas of difficulty. You can obtain a referral through your Consultant, GP or most other medical professionals you may be involved with. Other professionals, such as a dietician, occupational therapist, physiotherapist, or district nurse, may be able to provide advice to help also.

Common problems that you may notice:

  • being unaware of food when it arrives
  • failing to do anything with food in the mouth, just holding it there
  • difficulty chewing and/or difficulty moving food to the back of the mouth
  • spitting lumps of food out
  • eating very fast or putting too much into the mouth
  • eating insufficient amounts or refusing food and/or drink
  • talking with food or drink in the mouth and forgetting to swallow causing coughing
  • coughing/choking on food and /or liquids
  • complaints of food not going down or getting stuck in their throat
  • a 'wet' or 'gurgly' voice after swallowing
  • difficulty swallowing tablets
  • dribbling
  • chronic chestiness or recurring chest infections

Ways to promote safe eating that may be suggested by a speech and language therapist:

A speech and language therapist may make specific suggestions about what will help so it is important to see a speech and language therapist if you are concerned about swallowing, however the following may be useful:

  • A quiet environment, with few distractions (no television or radio).
  • Sitting at the dinner table with the table set to prompt the person that it is a mealtime.
  • Sitting upright, keeping the chin down.
  • Take small sips of drink, perhaps from a teaspoon. Avoid the use of lidded beakers that can encourage the head to tip back.
  • Take small mouthfuls of food.
  • Alternate food and drink to help clear the mouth of food: this should be discussed with a speech and language therapist.
  • Try encouraging the swallowing of each mouthful twice to clear any food or drink that may remain in the mouth or in the throat after the first swallow.
  • Frequent swallows to counteract dribbling.
  • Check mouth after finishing eating to ensure no food or fluid remains.
  • You may have to sit with the person to remind them to use these strategies, and you may find that mealtimes take much longer.