Assuming dementia but no diagnosis yet

Hello. Over the past two or three years my mother has shown increasing memory problems, confusion and difficulty with everyday tasks. Initially she was told she had mild cognitive impairment but just over a year ago she was referred for further assessment as she had deteriorated. Her referral somehow got lost in the system and I’ve had to chase it all the way. She has now had two assessments and her most recent score on the Addenbrooke’s Cognitive Examination (ACE III) test was 70. Now we’re waiting for a diagnostic review and I’m assuming that will be another few months away.

Is anyone familiar with the ACE III scores? We still have no diagnosis but I’m assuming that a score of 70 isn’t great. Mum can do almost nothing independently any more. She has carers four times a day. Even the dementia clocks and phones which we have bought for her over the past year or two are now too difficult for her to use. She’s increasingly confused and delusions are becoming more common. How long does it generally take to get a diagnosis? It seems to be a long process and we need an understanding of her condition, what to expect and how to support her. Or am I just being impatient?

Hi Sarah and welcome,

It sounds like you have put lots of strategies in place and help for Mother.

I don’t have experience of caring for someone with dementia nor personal knowledge of the process of diagnosis, others on here have and will be along.

However, there is information on ACE 111 here

I would also recommend visiting this website if you haven’t already, as it has lots of useful information on all kinds of dementia


Hi Sarah & welcome

Although it would be beneficial to have a confirmed diagnosis. Do you need that diagnosis to access more services and benefit entitlements for Mum. As it not necessary to have a formal diagnosis. For example to apply for attendance allowance.

You are not impatient and what an amazing daughter you are.

Mum’s age ?

Hi. Mum is 81. I don’t know anything about benefits but surely it’s important to know what’s going on when a person’s whole life has changed so drastically. We want to know if she has dementia, what type, how it’s likely to progress, what we can do to help and what support might be available. I think she knows that something is wrong although she strenuously (too strenuously?) denies it. If things go wrong she blames other people, or equipment (the television, phone, clock, etc don’t work). Without acknowlegement of her problems we can’t explain to her why she needs help to do things. She can’t even find her way out of the buildng yet she doesn’t see why she can’t take herself off to the shops which would be totally impossible for her. We just feel that everything’s on hold until we know. Thank you for your reply.

Thank you.

Sarah such a worrying time!

Mum is entitled to attendance allowance…,or%20refusing%20to%20accept%20help.&text=Attending%20these%20may%20help%20the,when%20talking%20about%20your%20concerns.

Read down the page to the comments.

Who can have a needs assessment?
Anyone who appears to have a need for care or support can have a needs assessment, regardless of the ‘level’ of those needs or the person’s financial resources.

Even if you as the carer are providing all the care the person needs, they are still entitled to an assessment.