'She doesn't know what is going on'

[PurpleDaisy2114]

My Grandma is in her nineties and in and out of hospital with pneumonia and several issues. She has no quality of life at all. I expressed how hard this must be and got this reply from my DM:

The one thing about Dementia, is that Grandma is unaware what is happening. When in pain or discomfort, she is unable to say. Paramedics were there yesterday, as Dad had a little panic'

Is this right??

Everyone with dementia is different. Some will still have an awareness of what is going on. A common misconception is that people with dementia don't feel pain - they do. Is your grandmother in a place of care or at home?

In her own home currently, my Dad cares for her with caters attending twice daily

Any further thoughts?

Are you questioning your mothers assessment of the situation?

My mother has dementia and sadly I would say she absolutely has no clue what’s going on on a macro or micro level. Eg the whole Covid thing has completely passed her by.

It varies from person to person, and depends on the type of dementia. People with certain types find it hard to express pain. For example, they have a toothache but don’t know how to say that, so will stop eating. They might have hurt their leg, but as they’re unable to say that, will be a lot more sedentary.

I'm afraid that I'd disagree with your mum @PurpleDaisy2114 as people with dementia still suffer pain, but do not always have the ability to say/show where/how it feels.

Yes I disagree with my DM and feel she is being dismissive

IME people with dementia still feel pain, but they may not recognise the feeling any longer for what it is, they know something isn't right but they don't know what it is, it's something they're feeling that isn't good, but they have lost the ability to recognise the signs. Or they may know it's pain, but be unable to express that, or unaware they need to, or how to do that.

Is your grandma on any pain medication regularly? Many people with dementia have regular pain relief prescribed, such as paracetamol, and it is given regularly, especially if the person has other conditions that we know are painful, such as arthritis.

There are non-verbal cues dementia patients give that indicate pain. Grimacing, wincing, clutching at area that hurts, crying out, tense hands and rigid body, etc…. Most people who look after Dementia patients are trained to look for these cues.
There is an Assessment called the ABBEY Pain Assessment (standard in Australia, not sure if they use exactly the same one in Uk, but will be similar) that is used on dementia/non-verbal patients as well, which most carers/HCW go through with the patient regularly.

Thank you all for your responses