Dementia and Swallowing Problems (Dysphagia)

[DysphagiaForum]

Hi All,

I’m a postgraduate university student currently conducting a research placement with the NHS. The aim of our project is to help improve support and awareness of swallowing problems, which are medically known as dysphagia.

One of the possibilities we are investigating is whether there would be a benefit in developing a dedicated online community (similar to this forum) for dysphagia sufferers and their carers to discuss their experiences, and the challenges associated with the condition.

A big problem with dysphagia is that sufferers (and carers) can feel isolated. We believe that uniting people with the condition, whether it is caused by dementia, brain injury, old age, cancers of the mouth and throat, or one of the many other illnesses that can impair swallowing, could be really beneficial.

If you are a carer for someone for dysphagia (or if you have dysphagia yourself) I would be really interested to hear your opinions on our plans. Do you think you would use a forum about swallowing problems? What would you like to see from a dedicated community for dysphagia sufferers? What suggestions would you make, given your experiences on forums like Talking Point?

Thanks,

George

 

[JonathanG]

Hi All,

I’m a postgraduate university student currently conducting a research placement with the NHS. The aim of our project is to help improve support and awareness of swallowing problems, which are medically known as dysphagia.

One of the possibilities we are investigating is whether there would be a benefit in developing a dedicated online community (similar to this forum) for dysphagia sufferers and their carers to discuss their experiences, and the challenges associated with the condition.

A big problem with dysphagia is that sufferers (and carers) can feel isolated. We believe that uniting people with the condition, whether it is caused by dementia, brain injury, old age, cancers of the mouth and throat, or one of the many other illnesses that can impair swallowing, could be really beneficial.

If you are a carer for someone for dysphagia (or if you have dysphagia yourself) I would be really interested to hear your opinions on our plans. Do you think you would use a forum about swallowing problems? What would you like to see from a dedicated community for dysphagia sufferers? What suggestions would you make, given your experiences on forums like Talking Point?

Thanks,

George

Hello George

I think this is very interesting, especially as my grandmother has just started exhibiting symptoms of dysphagia.

In my ignorance I don't know if there is enough about dysphagia to require a whole forum, but certainly a thread or two here would be useful, I think.

When these symptoms first appear its very hard to know what the cause of the problems are, especially when the patient is unable to articulate her feelings because the dementia has effected her speech.

I hope you get more useful feedback on this matter.

Jonathan.

 

[Madwife]

Hi, I would be interested. I care for my Dad.

 

[canary]

Hi @Madwife. Please note that this thread is from 2013, so the opening poster wont be a student anymore!

 

[Madwife]

Oh ok

Hi @Madwife. Please note that this thread is from 2013, so the opening poster wont be a student anymore!

, thank you - new to this Forum.

 

[canary]

new to this Forum

The date is written at the top of the post. Old posts are a great source of information and can be really helpful, but if you are searching for something it is always worth checking the date before replying

 

[Shedrech]

hi @Madwife
I just came across this ... it may be based in the USA and I have no knowledge of it myself so simply bringing it to your attention not recommending

NFOSD Virtual Swallowing Support Group | National Foundation of Swallowing Disorders

swallowingdisorderfoundation.com