Managing severe dysphagia with advanced dementia

[Willyb]

Hi,
My mum is 92 and lives in a care Home and has suffered from vascular dementia for around 7 years. It has steadily progressed over that time. She has been in the home for 4 years. The staff are brilliant, caring and compassionate, but low staffing levels and poor training has been a problem. Mums needs have become more complex recently. She is completely immobile and she has dysphagia due to her dementia. She has had previous assessments from the SALT team and has been on a diet of soft food and thickened fluids. Due to a recent fall out of her low level bed, she has been bed bound for nearly 2 weeks, as the staff have been instructed not to move her. She is now totally reliant on the staff providing her with food and drink, but I fear that as they are so busy, she doesn’t get the attention she needs. They say that they are going in her room regularly and feeding her, but I’m not sure how, as they are awaiting a reassessment from the SALT-team, so how are they feeding her? She can't swallow anything! I’ve checked with staff today and they say they are still waiting for the SALT team to turn up. Two weeks have gone by and nothing is being done. I get mixed messages from the staff and the manager seemed unaware of the problem when I spoke to her. So I want to contact the Local SALT team myself, to see what is being done. Can anyone advise who I can (or should) contact outside of the care Home? I cannot sit back and see my mum being unfed and unwatered without knowing what the options are for her continued care. Perhaps there might not be much that can be done. If that is the case, I need to know. I cannot just sit back and allow nothing to be done and for her to be neglected. Some advice on how to proceed with this would be much appreciated. TIA

 

[Slugsta]

Hi and welcome to TP!. I am glad you have found us - although sorry that you have need of us.

I'm afraid I cannot answer your question, but I am sure someone with more knowledge than me will be along sooner or later.

 

[tangled89]

Mum's gp

 

[philamillan]

Welcome to the forum Willyb.

The situation described is very complicated and there will be little I could say to clarify for you.

My thoughts are that if the swallow problems are related to the progression of dementia then this will be accepted that she is in the terminal phase of dementia. There is no benefit for artificial feeding or even hospital intervention.

The problem for the care home is that if they feed her and she gets an chest infection because some of the food went down the wrong way, they would be liable. Therefore they have to wait on the Community SALT team to come which can take up to 6 weeks!

The suggestion for the GP is the best, as the decision can be taken with the NOK (assuming POA for health) to "feed with risk". This means that you accept she can aspirate food into the lungs if she eats but this is preferable than her slowly starving.

This should be accompanied with the decision for "Advanced Care Planning" to keep her comfortable in the care home if she does get a serious chest infection at some point.

Please discuss this with her GP probably sooner than later.

Sorry to be so blunt about the situation but I cannot think of a better plan at the moment.

It must be difficult but hang in there.

 

[LadyA]

I'm sorry for the situation, but I'm afraid I'm going to be equally blunt. Is your mum showing signs of wanting to eat? During the final phase of dementia, as the body starts to shut down in preparation for death, the desire for food goes, and the person stops taking food and drink. They aren't dying because they are not eating, they are not eating because they are dying. It may well be that your mum is reaching this stage, and can no longer eat. Introducing artificial feeding at this stage would be your decision. For my husband, I decided against it as I felt it would be simply prolonging his death, and wouldn't be in his best interests. It wouldn't have been what he would have wanted, either.

It would be good to have an open and frank talk with the Manager and/or staff of the Nursing Home. Ask them how they feel your mum is doing, and let them know that you value their professional opinion too. They will have a lot of experience.