Between them, Colleen Kerr and Dijana Dragicevich have seen it all.
Whether you have a new diagnosis of stroke or your parent with dementia is ‘losing their swallow’ these savvy Speech Pathologists have tricks and techniques to help you or your loved one live their best life. All their life.
Most impressively they can help someone have a voice even they have lost their voice.
But what they are most passionate about is avoiding the additional distress that happens when families don’t discuss Advance Care Plans in advance of when they are needed.
Watch this and be brave. Be your family’s hero. Click Get Started to go to our questionnaire and get them talking while they still can.
Advance Care Planning with Speech Pathologists About Feeding and Feeding Tubes
Speech pathologists help out with dementia in many ways.
They can use Video XRays of swallowing to show when someone is unsafe in swallowing fluids. This means fluid may go into their lungs instead of their stomach, and the person is more at risk of developing pneumonia.
We know that someone with dementia will often lose their swallow reflex. If that person goes to hospital with memory difficulties, they may be considered not competent to make decisions. Decisions may be made for them about what they can and can’t eat- to avoid a pneumonia. Often a person says they don’t want changes to their diet- they really want to have their tea and their coffee. They should be given an opportunity to make those decisions.
It’s best if these sorts of conversations are made ahead of time. Then the family can document what the person with dementia would like to do about their eating and drinking– eg do they want to continue eating and drinking? In hospital a speech pathologist can make sure their wishes being acknowledged and find other ways they continue to eat and drink and enjoy their food.
It’s important to say that you want speech pathologists involved, as they can help you communicate by other means that are not language.
Speech pathologists can see people even when they may die imminently eg within the next weeks. It’s important that when someone is dying they still have access to the help they need. It can be distressing if they can’t communicate and ask for something – be it a sip of water or something that tastes nice for pleasure.
Speech pathologists will also help the family. Sometimes families want to help by giving their loved one food and water. This can cause coughing and spluttering which is distressful. But a speech pathologist can help show the family other ways to make the patient feel comfortable. For example oral and mouth hygiene techniques.
Swallowing problems can include things falling out of the mouth because of lip weakness, or food taking along time to get from the front to the back of their mouth. Training by a speech pathologist helps the carer. For example the Speech pathologist can teach the correct rate to feed, how much to put on the spoon, or how many swallow it takes to clear one teaspoon.
Families may sometimes need to make a decision about whether their loved one has a Naso gastric or a PEG tube placed. Often a doctor will want to prevent anything going down the wrong way and eliminate any risk of getting pneumonia. This is the risk management approach in hospital but may interfere with the quality of life. There is no current good evidence that these make death more comfortable. It may make the person more uncomfortable. Once a tube is introduced is difficult to withdraw it
If a person is discharged from hospital with a feeding tube it makes it harder to be accepted into some residential care facilities. And it can increase the amount of work they need at home
So these decisions need a lot of time. They need to be discussed as part of your Advance Care plan, before there is any kind of emergency.
Include in your Advance Care Plan whether you want to be fed by tube. Or would you prefer a sip of water even if that sip of water is potentially risky?
You may prefer not to have a nasogastric tube or intra venous fluids but if the doctor is not told that, he will put the tubes down and then it is very hard to remove them.
Decisions can be made by default if you don’t make them yourself.