Dementia and pain

babies-dogs-1Occasionally I am a confused younger person (!), but the topic of pain is of interest. When nursing in aged and dementia care in the 70’s and early 80’s, pain was not discussed or considered unless there was an obvious ‘injury’. As a carer for three PWD living in RAC in more recent times, it has been exactly the same experience, and unless they had a fall or obvious wound of some kind, management of pain was simply not considered. The little girl in this picture definitely has the right idea.

It seems that PWD must eventually even stop having headaches, so I am definitely looking forward to that!

Perhaps there is a clue here? I’ve been listening and reading about PWD in the news a lot lately, about issues such as human rights, and even listening to Cameron Camp last week discuss the benefits of Montessori for PWD, and the thing that is sticking out like the proverbial ‘dogs b..s’ is that, even in this ‘enlightened’ world of dementia care, we (PWD) are still being discussed as behaviours, which this relates to the issue of pain not being managed properly because PWD are still being seen and written up in the case notes as a ‘behaviour’ in the aged care setting, and especially in the secure memory unit where people are in later stages of dementia.

When I am unable to communicate because of the symptoms of dementia, will this mean I no longer feel pain or have a headache?

Of course not, therefore clinicians, carers and service providers need to start walking the talk of individual care needs, not just our activities and the food we eat, but including finding ways to properly assess for pain in a PWD, and then offer us appropriate pain management. This blog might be useful to more fully understand what it is like being diagnosed with dementia, which can then help others see past the symptoms of dementia and look for the person, including looking for a normal non dementia symptom such as pain.

The thought of a headache reminds me of this joke… Her husband asked her if she wanted a Panadol just before they went to bed. She said, ‘ no thanks, I haven’t got a headache’ … you can figure out the rest!!!

5 thoughts on “Dementia and pain

  1. Hi Kate – that is something I can relate to and something I fear if I ever go down this path. I have severe and untreatable central pain, as well as the chronic hunger and pain 24/7 that is untreatable. I know that these symptoms will be intolerable if I ever develop dementia again. When I had no memory I literally wasn’t remembering that I’d eaten 5 minutes ago (or even 15 seconds ago) so I was always crying out for food…… these factors are some of the reasons why I support the legalisation of VE ……


  2. Wow! I just started the Understanding Dementia MOOC and clicked through to your blog. My mother complained pretty unrelentingly of pain due to rotator cuff injury for years. She lived with me for several years after her dementia (vascular) was too bad for her to live on her own. Managing her pain and the side effects of the pain meds was constant and unsatisfying. With broken shoulder and broken hip visits to hospital and rehab, the staff would ask her to rate her pain which was such a joke and I was so frustrated. Now she is in a secured unit and I notice she hardly complains of pain anymore, though clearly her shoulder has to be hurting and is hardly mobile. I figured either her disease was preventing her from feeling the pain or that her communication skills and memory were preventing her from reporting it. I am hoping to learn more from you and the course. Thank you for your openness and sharing, Alison


    • I hope you get a lot from the MOOC course Alison; I helped to pilot it, and it seems like a comprehensive look at dementia. Thank you for having a look at my blog too, and for your kind comments. The more people with dementia speak up, the better our care and services will be…


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