What questions will the dementia consultant ask?

[Valleyofthedollymix]

My mother was diagnosed with dementia (probably Alzheimers) a year ago and has an appointment with the consultant in a couple of weeks' time. I will be accompanying her.

In that time, she hasn't deteriorated much I don't think and I suspect that she could be a lot more independent than she is - we employed live-in carers for my father who's now died, and she's rather taken to having them.

Before we go to the appointment, I want to make sure that I know the answers to any questions that might be asked of me (rather than her). Since I don't do the day-to-day care, I need to find this out beforehand. I don't want the carers to come to the appointment as although they are lovely, they tend to talk over her and infantalise her "mum likes biccies don't you mum", that sort of thing.

Does anyone have any idea what practical questions might be asked? For example, will the ask about her continence? How much she's able to do for herself? Does she dress herself? How much she wakes at night?

That sort of thing.

Obviously I'm going to try to stay as quiet as possible and not fall into the trap of answering for her.

I'm going to try to stay as quiet as possible and not fall into the trap of answering for her.

I get this.

But in my experience a medical appointment with a dementia consultant is more about medication, how she is sleeping, that sort of thing. The questions about continence or dressing herself are more a social services thing. Do you have social services involvement for your mum or have the carers been arranged privately?

Dementia is a funny thing, the decline isn't a smooth slope, they can decline rapidly for a bit, then plateau, then be OK for a bit, then decline again. Losing your Dad is a massive change for your mum and might prompt another decline. I would advise letting her do the talking and letting the doctor do their job, but do not be afraid to leap in and contradict your mother if she is downplaying/exaggerating how her dementia affects her. This was an ongoing battle with my Dad, my mum would tell anyone who asked that he was absolutely FINE, when he wasn't.

They might ask how her memory and functioning is since they last saw her to see if she has declined. What can/can't she do for herself and what is her daily routine like. How's her mood. Appetite and any weight loss. Physical health/medications. Mobility. Sleep routine. Risks e.g falls. Continence issues.
Yes give your mum the chance to talk, don't be afraid to jump in too. Good luck!

What I’ve seen recommended, is to sit slightly behind your parent, so if the give an answer you know to be wrong* (E.g. ‘Oh, yes, I still do all my own shopping and cooking,’ - you can give a firm but unseen shake of the head.
*probably not a deliberate fib - people with dementia so often simply can’t remember that they can no longer do this or that.

That's all so useful, thank you very much. I feel that illogical guilt about not knowing a lot of this (sleep routines etc) because I'm not actually caring for her. They are private carers and so there's no social services involvement. I'll get what I can from the carers in advance but they seem to contradict each other which in addition with talking to my mother means it's all muddled.

Weirdly she seems to have improved massively since my dad died. I think the strain of the uncertainty got to her. She didn't rise to the occasion over his last year - she really resented him getting all the attention and couldn't wait for him to either die or move into a home. I know it was the dementia but it was still pretty upsetting (and not entirely out of character).

Since you all seem to be very knowledgeable perhaps you can help with another query? The most marked symptom is really poor mobility. She can barely walk, can't do anything without a rollator, struggles with steps or any sort. She has no other medical conditions. Her mobility is worse than her memory, if you see what I mean. Is this part of the dementia or is there something else going on?

(She is putting on weight at speed and has never been keen on exercise).

Don't feel guilty about it, it sounds like getting carers in was the best thing for her. And you get your relationship back with your mum (rather than being her carer).

Sorry to hear her mobility is slowing down. If there is no underlying physical causes it could be that she isn't walking enough and she could be "forgetting" how to walk properly. Can the carers take her for a walk everyday? Same goes for all activities, get them to try and let her do things for herself otherwise she will forget and become completely dependent.

I should add it may be worth ruling physical causes out first with the GP (if you haven't already).

My MIL, and now my stepfather, both lost the ability to walk through dementia. They stopped using a rollator as they couldn’t figure out what to do with in over time. The dementia nurse explained that the area of the brain that deals with gross and fine motor skills just deteriorates, along with speech, swallowing etc.

My dad's mobility was affected as the dementia progressed even though he was otherwise fit and well. He sort of shuffled slowly rather than walked properly.

Just be aware that she may say she does things that she doesn't. My mum tells everybody she manages her finances on her own and uses her tablet to do so. And she really thinks she does. We gave up buying replacement charger cables for the tablet months ago and she hasn't even paid a paper bill herself for nearly a year. But she remembers doing stuff and thinks she still does.

If you go into the appointment with her sit slightly behind her so you're out of her sight, so you can nod or shake your head when the consultant asker her questions. People with dementia will often say for example that they are fine, do all their cooking, shopping and cleaning when they are no longer able.

This is all so useful, thank you for taking the time to help. The word shuffled describes it exactly. She takes these teeny-tiny low steps.

It's so hard to know what's dementia and what's her. She's always been physically lazy - I didn't grow up in a culture of sport or even walking much beyond the odd 15 minutes with the dog. I think she can walk better than she is doing so, but she's lost confidence which makes her less keen to walk and so on. I ask the carers to take her out for a walk each day but they always just say that she doesn't want to. I find it really awkward to know how much I can insist - both to the carers and to her.

Last time the consultant said that the best thing she could do is to walk more as it can arrest the dementia. But she didn't. I hope he says it again so it becomes a 'prescription' and I can tell everyone that it's mandatory.

Similarly I think they're disempowering her because it's easier to do things for her than to supervise her doing it for herself. A bit like trying to encourage children to load the dishwasher, it's too easy to give up and take over!