Getting a diagnosis – Navigating the system without losing the will to live

The headed notepaper from the ‘Dementia in younger people’ team arrived and was opened by my unsuspecting father, still labouring under the illusion that a ‘memory clinic’ had nothing to do with any crazy mind weirdness like dementia. I tried to put a positive spin on it and privately was quite pleased to see that there was a team specifically set up to cater for younger people with dementia AND that the nursing representatives from that team would do a home visit for their initial consultation. This seemed terribly civilised and far better than dragging my parents off to a ‘mental hospital’ for an assessment.  The nurses came, they assessed, they drank tea. They were kind and courteous and polite. They even helped mum with some of the answers (a curious approach when assessing mental state but there you are) and they booked her in for a CT scan. ‘This is it’ I thought. ‘This is what we need. Scan evidence that there is no brain tumour or stroke or other pathology that I could have done something about earlier.’ A few months passed. She had the scan. A few more months passed. I booked the afternoon off work and headed to my parent’s house for ‘results day’ anxiously trying to make predictions based on the facial expressions of the nurses whilst dad made us all a cup of tea and we chatted about the weather.

When the lead nurse said ‘The scan was all clear’ I expected to be feel relief flooding through me. But I didn’t. Because suddenly we didn’t know what on earth was going on. If she didn’t have dementia then what did she have? The nurses suggested that her symptoms were resulting from a combination of low self-esteem, ‘empty nest syndrome’ (occurring a good fifteen years after her children had flown said nest) and post-traumatic stress disorder (following on from her shoulder injury). They then suggested discharging her from the memory team but, seeing our look of abandonment, offered to come back for a review in six months. I spent the next hour reassuring myself that this was good news but even my dad was looking slightly baffled, as if he too was expecting to feel more relieved than he did. I was also a bit bemused that mum still hadn’t been seen by a doctor other than her GP. Her entire ‘patient-journey’ (God I hate that phrase) with this team, from assessment to near-discharge, had not involved contact with anyone medical. I reasoned that there must have been a multi-disciplinary meeting held within the hospital when her scan results came through. I also assumed that this meeting would have been led by a consultant psychiatrist who delegated the communication of these results back to the nursing team. Looking back now I think that this was unlikely. I have written letters to ‘The Medical Consultant’ in charge and was called back by a Nurse Consultant (as an aside, the nomenclature of different roles within the health service could do with some clarity – if I am having difficulty with establishing who a person is, their professional background and qualifications then how hard must it be for someone with dementia?)

Seeking a diagnosis – the basic steps should include:

  • Initial blood tests and ECG completed by the GP before referring (this is to exclude reversible causes of confusion such as thyroid dysfunction, cardiac problems or metabolic disorders).
  • A medication review to ensure no current prescriptions are causing confusion.
  • An assessment of mental state – usually with questions that assess various aspects of cognitive function (not just memory and recall).  Being able to draw a clock face, put the numbers in the right places and draw hands pointing to a time e.g. ‘a quarter to eleven’ covers many aspects of basic cognition.
  • Currently a dementia diagnosis cannot be made in primary care (by your GP) although this is being looked at.  It is recognised that for some elderly people in nursing homes a GP who knows the patient and the family well may be better placed to assess deteriorating mental function with the patient in a familiar environment. All of the steps thus far can be done in General Practice and if appropriate, a referral is made to the Memory Clinic (usually in a hospital setting).
  • Memory clinic assessment should involve a consultation with a clinical psychologist who will go through more formal cognitive testing, followed by an assessment with a consultant psychiatrist. Tests would be arranged, usually involving imaging such as a CT or MRI brain and a follow-up appointment would be booked. In addition, people with symptoms of young onset dementia are often referred to a neurologist (to ensure that there are no co-existing conditions mimicking or contributing to the signs of dementia). This is an important consideration as younger people with dementia may present in an uncharacteristic way and their coping mechanisms are often strong enough to cast doubt on the diagnosis. It is also important to rule out other causes such as a brain tumour / stroke / Parkinson’s Disease because many of these are treatable.
  • The diagnosis of dementia is a clinical one – there is no singular diagnostic test but there are clues which are strongly suggestive, both in clinical presentation (symptoms) and on scans. The clinician will make a diagnosis taking these factors into account.

Sadly, as with so many things, it is only in retrospect that I see how the system should have worked. As an aside, I feel I should point out that being a doctor is NO HELP WHATSOEVER in this circumstance. I was so keen to avoid being perceived as the ‘pushy medic daughter’ that I accepted, and even defended the system whilst it was letting us down. To this day I remain baffled as to how this particular memory clinic operates. And don’t get me wrong – I love the NHS – I really love it. It is only because we as a population have become so used to the notion of healthcare free at the point of access, that we feel able to berate and abuse it so vigorously – but that’s another story, in fact that’s another blog probably being written by someone else as we speak.   General appreciation of the NHS aside, by Christmas I was fed up with the crappy excuse for a diagnosis we’d been given. It was abundantly clear that whatever was going on with mum was not going to be resolved by a little boost to her self-esteem so we persuaded dad to seek a private referral to a psychiatrist. After two appointments with him and a clinical psychologist (who she should have seen on the NHS) mum had a diagnosis of Mild Cognitive Impairment (which some of you will be familiar with). MCI can be a precursor to dementia but is often an end-point in itself (as in, it may progress or it may not). Mum’s cognitive scores were below the first percentile for her age group (meaning that 99% of 60 year olds in the UK would have performed better in the tests than her) but because she was functioning at such a high level (still driving, still able to go shopping, still able to care for small children in some capacity) the specialists were reluctant to give her a diagnosis of full blown dementia. To be honest, it didn’t matter to us – we had an answer of sorts and we had a plan. Start treatment.

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