Significant memory problem, can't get diagnosis

[Frenchiefry1]

Hello. My mum has significant memory problems, is very confused, anxious and very aggressive towards my dad.

She has been assessed by a psychiatrist and been told that she has only MCI. The psychiatrist would not speak to anyone in the family as part of the assessment.

The lack of diagnosis of dementia feels very wrong compared to what my dad, my sister and I all witness on a daily basis. My mum is constantly, incessantly repeating herself, she is confused throughout the day by what is going on around her, she is anxious in situations that don't warrant any concern/pose any threat. She can't follow a simple conversation and can't retain any new instructions or information at all.

How do we challenge the non-diagnosis to get her the care she needs?

Thanks

 

[Grannie G]

Hello @Rona French Welcome

Tips for living with mild cognitive impairment

There are ways to help a person with mild cognitive impairment manage their symptoms and cope with memory loss. There are strategies that can be adopted to help with this.

www.alzheimers.org.uk

It seems MCI is not yet dementia

Your mother`s behaviour could be caused by fear if she is aware of the difficulties she is having. It could also be defensive. This is not a criticism. The family is worried too and you are all trying your best to get a diagnosis.

This Thread might help your managing your mother`s behaviour to cut down her confusion;

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

Some doctors are not as inclusive as we would like and I don`t understand why your dad wasn`t allowed into the consultation. I had no problem being allowed into consultations with my husband.
My husband always agreed to my presence. Did your mother object or would she have accepted your dad staying with her?

If you are still unhappy with the diagnosis of MCI you can ask for a second opinion. Sadly, because of the pandemic, you might not get an appointment as quickly as you would like.

 

[Jacs321]

That sounds tough for you and i can empathise. In my experience they tend to hold back on making a formal diagnosis of Alzheimer’s or similar as long as possible as its such a devastating prognosis, in my mother's case they dithered on depression causing cognitve impairment for almost 6 months but requested a scan and repeat assessment with evidential deterioration in her scoring and observable changes on scan at which point they agreed to prescribe meds and we were linked into post diagnosis support. Have they suggested a review? MCI can be caused by many things so also make sure any other causes, meds or physical dont get overlooked ( if they haven't been discounted already). Our psychiatrist was willing to listen to family accounts with mum's consent to do so although dr insisted we left the room whilst she did the cognitive tests and reviewed scan results. My suggestion would be to keep a diary of examples you can show them at review, alrhough it feels onerous it can be helpful, explore local support groups and begin to put in place some memory strategies (lots of tips on here) to help mum's memory which may reduce her frustration. As suggested above she may well be aware of her cognitive challenges at this point and her behaviour may be a result of that effort and frustration. Keep pressing for review if they haven't suggested one and seek out support where you can, maybe via her GP if they know her well. But this will all need mum's consent which my mum struggled with as she said i was 'telling on her' and 'she wasn't going mad!' i found the early stages frustrating as i couldnt get why my capable mum couldn't/wouldn't do things to help herself as i saw it or why the psychiatrist didn't make the diagnosis when it seemed to be clear (although feared), to me. Its a long road so don't forget to look after yourself too and use the forum's here for supportor just to rant. Final tip.. if you strongly feel its AZ or similar, and a good idea anyway, if you haven't already start looking at LPA now if mum and dad are willing. Good luck and lots of best wishes ?