Swallowing problems

[saltrocking]

Can anyone tell me what happens when an elderly dementia patient loses their swallow reflex.

Family member currently in hospital after an infection. Very frail already, double incontinent, doesn't talk, bed bound, can't even sit up in bed.

Family are adamant that the hospital tube feeds her.

She's managing small sips of water and literally a spoon of puréed food/soup. She's coughing on her own saliva a lot.

I'm not a close relative and so can't ask staff.

Family are very much in denial about how serious this is. She's the most loved lady and none of us want to lose her but this feels so inhumane

In general tube feeding isn’t always appropriate in someone with dementia as they pull them out and reinserting isn’t always deemed in their best interests as the procedure isn’t nice. It of course depends on severity of dementia and the consultant looking after them.

iv fluids can be given whilst acutely unwell to keep them hydrated and they’ll be assessed for modified diet and thickened fluids with fluid thickener. If they are deteriorating however, they might end up being kept comfortable as iv fluids aren’t a long term fix and artificial feeding aren’t always appropriate depending on severity of dementia

If in hospital -

She will be reviewed by a speech and language therapist- they will try and establish why she is not swallowing properly- sometimes there can be quite a simple solution. She may have an X-ray or other investigations. If it's established she can still eat and drink then a dietician should be involved.

Artificial nutrition and hydration in patients with advanced dementia is usually short term and not particularly beneficial. If patient is near end of life then artificial nutrition can cause distress and pain.

Doctors will ultimately make the decision based on her best interest. Family opinion should always be listened to but not always followed. Someone with a lot of experience in palliative care should sit and talk with the family and explain the rationale, this may have to be done again and again.

Hi there, as other posters have said tube feeding is not usually in the best interests of the patient in these circumstances.
I work in palliative care and unfortunately dementia is a progressive illness and this is what is happening. Ideally they should be assessed by the speech and language therapist who decides what type of diet/fluids are suitable.
Ideally they should go to where they are most comfortable and not keep bouncing back into hospital.
They are likely to get another chest infection which will bring about the end of their life. The family need to decided where they want end of life care to take place.
Hospital admissions with severe dementia can be distressing due to
The unfamiliarity and also transporting someone who is so frail.
You can ask for the hospital palliative care team to discuss with family and reassure you.
Good luck

Going on what you have written, it sounds as if sadly, she is at the end of her life, it's very, very unlike the medical team would want to give her an NG tube. The research shows it's contraindicated in end stage dementia, in other words the harm out weighs any benefit. Giving her artificial nutrition won't increase her level of awareness, won't reverse the dementia, won't 'make her better'. It may prolong her life, but only by a very short amount of time, and the distress in sighting the tube, and the risk of her pulling it out and then potentially aspirating on food if the feed is running, is very, very high.
A best interest decision will be made. The best interest decision is always made on a case by case medical team review and it wouldn't be appropriate for me to hypothesise what that would be. The family should have someone from the medical team explain the reasons though. And they may need it explaining several times, to really understand that their loved one is coming to the end of her life.
Dementia is a right bastard, it's very distressing for the family to see someone they love die of this horrible disease.

Thanks so so much to everyone who's replied. You've helped so much. I have asked about the speach and language and was told they are seeing her this afternoon. Thanks again x