Perceptions of Dementia

I’m getting so frustrated with the Rehab facility where Mum is at the moment - well, with the healthcare personnel she’s had over the last five weeks or so. They seem to see that diagnosis on Mum’s paperwork and start speaking slowly and carefully as if to a child or someone who has lost it completely.

Prior to this fall where she broke her hip and shoulder, Mum was ‘high functioning’ i think is the phrase. She lived on her own, cooked her own meals and managed really well requiring very little by way of support. Apart from a short spell of confusion in the immediate aftermath of her fall which could have been down to shock, pain, pain meds anything, she has recovered well.

They decided yesterday that they were going to see if she could manage her meds. I said she wouldn’t have any problem as she’d been doing so for years, even reminding me to take my own! Well tonight this god-awful nursing sister came bustling in, ordered me out with a pointed reminder that I was there outside of posted visiting hours [and I’m going to continue to do so if this is the kind of care she’s getting]. I hovered outside the door and I could hear this harridan treating my poor mother like some simpleton. The more hectoring she got, the more stressed Mum got. When I eventually got back in Mum was really upset. Apparently she’d not managed to pour the proper dose of a liquid laxative which she had never had prior to her hospital stay. This nasty creature had just shoved a list of her medications under her nose and wanted her to say which medication she took next and Mum had really struggled under pressure. After this nurse had gone Mum said she was upset that she had ‘got it wrong’. She’d been so upbeat about her progress but when I left she was really down and despondent.

They see the word ‘dementia’ on the record and seem to think it doesn’t matter how they speak to them.

I hate to do it but I can’t see any option but to make a formal complaint.

Time for you to record this dreadful sister when she’s having a go at you and mum, and then make a formal complaint. Most hospitals have a special scheme so that carers can visit outside normal hours, on the understanding that they might have to leave the room for intimate care or medical treatment. Find out if your hospital has anything like this.

Nicki, how upsetting and frustrating.

I know its different, but I have had similar experiences with S. Although he has autism and related learning disability - he is able to read and write and can communicate well if people understand how best to communicate with him. Some people don’t accept this and therefore don’t see the capable person he can be if given the time and appropriate and sensitive support. They then judge him as a being a lot less intelligent and less capable than he really is.

Is the rehab facility part of the hospital or a residential home? If its part of the hospital, it should have a dementia champion and dementia charter or similar that supports out of hours visiting and the rights of dementia patients and families. I would definitely be contacting them and wanting to speak to the rehab manager. The next time they want to assess your Mum ask if you can be present and someone else assess her. No one performs their best when they are rushed and pressured.


Not exactly the same thing but I’ve had similar experiences with my son. Strangers see his disability and ignore my child. My child does not have a learning disability, please don’t exclude him from sensible decision making. Doctors who know very little about spina bifida also have blatantly lied to me about his prognosis and life expectancy. The other day when we were at the hospital with Logan, a nurse came in at two am and I told her his temperature was fine but she didn’t listen. This is why I refuse to use a care provider because I want him involved in making his own decisions no matter how silly or unwise they are. If he makes a bad choice, he will be punished like a non disabled child.
Can you complain about the asshole or not?

Sorry it’s taken me a while to get back - one damn thing after another.

I did complain about this lady and things did seem to improve. It’s surely not too much to ask is it, simple human dignity?