Part 1) When a label isn’t enough

***This is a two part blog post***


Supporting someone throughout their dementia journey is vital

Early diagnosis of dementia is becoming a hot topic in the UK, with a multitude of different approaches including a campaign to increase the numbers of people seeking help, and proposals to screen (case find) everyone over 75 for the disease when they attend their GP's surgery. As opinions become more entrenched, the medical profession appears divided on the merits of how to diagnose and when to do it. Meanwhile politicians, desperate to improve statistics, seem hell bent on labelling as many people as possible, with little thought, or investment, into the consequences of such a move.

I have written previously about my father’s path to diagnosis (Having that conversation / Don’t wait for a 'crisis point' ), how it took ten years from when his symptoms first appeared to when we had his official diagnosis, and how that diagnosis only came as a result of a ‘crisis point’. I have openly admitted that I wish he had been diagnosed earlier, and I stand by that, but there is so much more to the issue of diagnosis than that statement alone.

When considering my father’s case, bear in mind that he was under the regular care of his GP throughout most of those ten years, that social services also became involved (and remember that back then we were living in the halcyon days before the cutbacks that many adult social care services are suffering now), and that he was visited, at home, by a Consultant Psychiatrist specialising in old age mental health, who we later discovered diagnosed dad’s dementia during that consultation but did nothing.

All the checks and balances were in place that should have ensured that a vulnerable older man wasn’t simply abandoned by the system, and yet he was, and so were we. My wish that dad had been diagnosed earlier is based entirely around the fact that I would have wanted him, and us as his family, to have had support, guidance and access to mechanisms that would have supported his memory and lifestyle and enabled him to live in his own home for longer. Ultimately, I would also have given anything to avoid the ‘crisis point’ that eventually brought about his formal diagnosis, purely because he never fully recovered from that incident.

That ‘crisis point’ could only have been avoided, however, through greater support, not simply by telling him months or years earlier that he had dementia as a standalone factual statement. There was certainly plenty of opportunities to tell him - he had numerous appointments with healthcare professionals during those ten years, that he always attended alone (out of choice). Did they tell him what we later found out that they had always believed, namely that he had vascular dementia? It is possible that they did, but he never told us, or maybe he simply didn’t understand the information or forgot? Sadly dad was not able to tell us then, and never will now.

As it was, my father never had any help from health or social care prior to when we were told of his diagnosis, and after that point we had to fight for everything for him. Maybe his case had already been included in those government diagnosis figures long before we ever knew that he had vascular dementia – if it was, it certainly never helped him avoid his ‘crisis point’ that could have killed him. Of course you could argue about medical confidentially, and that families have no automatic right to information, which of course is true. However, unlike many diseases and conditions that a patient can manage well themselves, dementia  requires a multi-faceted support system to enable the person to find relief from their symptoms, slow down their decline and remain as independent, and safe, as possible for the maximum amount of time.

You cannot simply diagnose someone, give them a few pills and send them on their way. It doesn’t work like that. There is money to be made for pharmaceutical companies if we take that approach, but there is limited, often short-lived and in many cases non-existent benefits for patients. The real help that is needed doesn’t come out of a bottle. There is no huge profit margin to be made out of it. Indeed, helping people to live well with dementia requires community support teams and projects that COST money. Potentially a lot of money if we are going to approach the ‘dementia challenge’ with a real desire to make a difference.

So, is early diagnosis still a positive step? Firstly, I believe that anyone seeking help from their GP because they or their family are concerned about dementia symptoms must of course be given answers – either from their GP or through referral to a memory clinic or other professionals. Should a dementia diagnosis result from that, then they MUST have access to full care and support, advice on lifestyle and therapies to help ease their symptoms and maintain their chosen way of life, and the opportunity to put their affairs in order and plan for their future whilst they are at their most optimum level of ability.

At every stage of this process, the person may want to be supported by those closest to them - family or friends who share a desire to support their loved one on their dementia journey. Those people in turn also need support from the health and social care systems to enable them to help their loved one, so that everyone in the equation can live as well as they possibly can with dementia in what you might call a team effort.

When diagnosing dementia there are key factors that are incredibly important. Firstly, are the diagnostic tools accurate and do they work for every person within our multicultural society, where the population is of many backgrounds and languages? Have other health conditions or side-effects from medication, that can cause similar symptoms to dementia, been accurately ruled out?

I would also look at:

·        The environment used for testing (does it put the patient at ease?)

·        The stress testing could cause to an individual that may obscure the result (you could potentially create ‘exam’ style stress for a patient who is prone to this)

·        The relationship between the person performing the tests and the patient (is this happy and relaxed?)

·        Does the patient have someone with them for support to make them feel more at ease (so that they don’t feel that they are being judged or labelled)?

·        Are you asking someone to perform certain tasks (like mathematical, spelling or historical exercises) that they have always found difficult? After all everyone has their own strengths and weaknesses.

The conclusions that this testing process comes to may indicate dementia. It could also indicate mild cognitive impairment, a condition that may never lead to dementia and yet may be very frightening for a patient. Clear advice and understanding is needed to differentiate between different conditions if patients are to fully appreciate the situation that they are in and their prognosis. At present, many people still struggle to understand what dementia is, and the disease remains shrouded in stigma, so introducing other conditions to already confused minds could be even more baffling and lead to inaccurate conclusions being drawn and incorrect assumptions being made.

Please read: Part 2) When a label isn't enough

Until next time...

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