Diagnosis: Why a "Label" Matters

Diagnosis is a hot topic – and a hot potato. Statistics published by Alzheimer's Research UK state that only 69% of people living with dementia in England have received a formal diagnosis (nevertheless a significant improvement on previous years), with rates of diagnosis varying widely between different areas of the country and the UK as a whole.

In order to address this, in 2013 the government made diagnosis a strategic priority and  proposed a new DES (Directed Enhanced Service)* for GPs to assess at-risk patients for signs of dementia: all over-75s, plus those over 60 with cardio-vascular disease, stroke, peripheral vascular disease and diabetes, and those with learning disabilities and long-term neurological conditions such as Parkinson’s.   

Escaped Alone by Caryl Churchill
Royal Court Theatre, London
Design: Miriam Buether

This assessment would not take place as part of a mass screening invitation; GPs would simply be paid extra to ask these targeted “at-risk” patients about their memory, during unrelated consultations for which they have voluntarily presented; those admitting concerns would then be referred for further tests. In addition, it was suggested that patients in these groups admitted to acute care – at A&E or as in-patients with other conditions – should also be assessed in this way.

To the layperson, it might seem that any initiative to improve opportunities for diagnosis of such a potentially debilitating condition would be a good thing. But it provoked controversy among health and social care professionals, a group of whom wrote a letter to the Daily Telegraph outlining their concerns. 

The traditional medical approach to disease might be summed up thus: patient experiences symptoms; reports symptoms; has tests; receives diagnosis and treatment; is cured.  Public health campaigns (e.g. for cancer or heart disease) have been designed with these assumptions in mind. “Worried about symptoms?  Come and get tested, so that you can be treated and cured.” There is a clear positive incentive to put oneself forward.

Dementia doesn’t fit this pattern.  Those who have it may not be aware of symptoms, so often can’t self-report – lack of insight is itself a common symptom. And there is no cure as yet.  So if symptoms are noted by others, who raise them with the person concerned, that person may well resent the intrusion, in the belief that nothing can be done and they will simply be “labelled” with the stigma of degenerative disease.

Given these fundamental bars to at-risk patients presenting to primary care in the first place, it’s no surprise that diagnosis rates are low in comparison with the number likely to be experiencing symptoms. Some GPs may also share the view that there’s no point diagnosing patients with a syndrome for which there is no cure and not much medical treatment to offer. 

Nevertheless, you might expect those who do perceive some wider social benefit to welcome a government initiative – and financial reward – to adopt a more proactive approach.  But many were deeply troubled by the proposals and saw them as counterproductive. Why?

Their main objection was that it diverts resources and attention away from practical support for those with dementia, funded through straitened social care budgets, not health.  There was no corresponding extra finance offered for post-diagnostic support, and services are already inadequate for those currently diagnosed. True. 

But if the medical establishment rejected this DES, would the money otherwise go into social care?  I don’t think so; it would just be lost. And infrastructure is never created unless demand is first proven. 

For instance, I’m 5’ 0” and for a long time lobbied a popular online retailer for short-length trousers – they had plenty for women of 5’ 7” and above, but none designed for my height. I was constantly told there was “no demand”.  “But I’m demanding!”, I would say, “There must be other people like me.” Not enough, it seemed. Finally, they did launch a petite range.  At last, enough people had put their hands up.

In order for demand to be met, you have first to show that those demanding are not a minority who can be ignored, but a sizeable percentage of the population, the service of whom provides societal gain.  OK, my clothes firm had a fiscal incentive to offer a product; but millions of pounds are currently being drained from the public purse by people with dementia (both diagnosed and undiagnosed) needing repeated acute or long-term residential care because their social care needs are not being met, and by family carers giving up work to bridge that gap and consequently paying less tax or claiming benefits.  There is an economic argument for spending more on social care.

To draw another analogy, there aren’t enough primary school places. Do we solve this problem by excluding all future under 5s from statistics?  Do we say those surplus children should stay at home and be taught by their parents or remain illiterate and innumerate?  No. We agitate for more schools. We may not get them as quickly or as plentifully as we might hope, but we do expect them to be provided. “It’s what we pay our taxes for”. Who has paid more than the elderly?

Until the full demographic scale of dementia is identified, government will always have a more pressing political priority.  Let’s not collude to obscure those figures.   

There is no doubt a fear that increased rates of diagnosis will open the floodgates to thousands more expecting a comprehensive care package that can’t be delivered. But I think many would be glad of just a bit of help, as opposed to none: information about support groups or phone advice lines; an hour or two of day care once in a while, enabling social contact for the person with dementia, and a quick shopping trip, exercise class, or quiet coffee for the carer; access to benefits (such as Attendance or Carer's Allowance), which might pay for some domestic help or social activity and go some small way toward compensating for lost earnings.  And most importantly, acknowledgement – the value of which should not be underestimated in itself. 

Some GPs argue that the label of diagnosis should not be necessary to access support services, and that families can already ask for help without this, if they need it.  Well, for many years I privately suspected that my mum had some form of dementia and did my best to cope with it alone; but without official acknowledgement of that label, I didn’t feel I had permission to say it – for her benefit or my own. 

For instance, when she suffered collapse due to a urinary tract infection (which I feared might be a stroke), I couldn’t openly tell paramedics or hospital staff that she had cognitive difficulties. This led to a very traumatic and medically unsatisfactory hospital experience. (Initiatives such as the Butterfly Scheme might have helped in this situation, but it had not been set up then, and is still not universal.) Or when her behaviour sometimes bemused, alarmed, or offended friends, I felt I couldn’t explain and some then drifted away. Had they fully understood, they might have been more sympathetic.

I’m a relatively young, articulate, proactive person, but without that official “label”, I felt powerless to act. Imagine how much harder that situation might be for an elderly spouse, without internet access for information or comparison of experience, who believes that marriage vows mean that any trials must be borne silently in fortitude.  They may be most in need of help, but least likely to ask for it.

So what else worried the doctors about this government directive?  An emphasis on early diagnosis, they suggest, plays to vested interests of the pharmaceutical industry.  Pharma can only help a small minority of people with dementia, to a small degree – current drugs may slow down decline in memory function, but cannot halt it, nor reverse it. They only work for those in the early stages, and inconsistently even then. 

(Safe and effective treatments for the more challenging behavioural changes, misperceptions and hallucinations of later stage have yet to be found.  I have described some of the effects in action here: paranoia; confabulation; cognitive confusion). 

You could take the view that early diagnosis is therefore vital to help those few who might benefit from pharma; or, as some doctors suggest, that early diagnosis is advocated for political reasons, to increase lucrative uptake of long-term drugs for the financial benefit of Big Pharma. Either way, medics worry that a PR offensive stressing the possibility of medical intervention gives patients unrealistic hopes and expectations.

Then there were concerns about the initial assessment. Asking patients who have presented for some other ailment if they have “memory problems” is unlikely to gain a positive response from those who do, while provoking antagonism from many.  In any case, memory problems may not be the first or most significant symptoms of dementia.  Personality change, cognitive, or behavioural issues (potentially more disruptive) might not be apparent to the person experiencing them; witness testimony may also be required. 

And standard queries in the current Mini Mental State Examination (MMSE) – e.g. remembering a sequence of words (“apple, penny, table”), counting backwards, or reasoning problems, such as “how many camels are there in Holland?” - can be confusing for those without dementia when under stress, while at the same time being unreliable indicators of those who do have symptoms. 

(I would like to see more practical tests related to real life: for instance, can you tell me the stages involved in making a cup of tea; can you look up a name in this address book, dial the phone number, and leave a simple message asking the person to call you back?)

I think the medics have a valid concern here that political imperative has run ahead of considered thought about the content of the tests, and such superficial investigations are at least as likely to panic the “worried well” as to identify the genuinely afflicted.

In their letter to the Daily Telegraph criticising this screening proposal, the group of professionals referred to “its potential to harm people both directly and indirectly”.  I didn’t immediately understand what they meant by this, in comparison with the more obvious potential harms presented by other common types of screening – e.g. for breast or cervical cancer, which are routinely offered to all women of a certain age. 

So I asked one of the doctors to explain. One possibility, he said, was the psychological trauma of being given the diagnosis - which in the case of MCI  (Minor Cognitive Impairment) may not even lead to dementia, while upsetting the patient with perceived bad news and uncertainty over the future.  I can see this. 

But I would argue that there’s a similar danger with breast and cervical screening, which can pick up “pre-cancerous cell changes” that merely indicate an increased risk of developing the disease and can equally frighten the patient. The basic cancer risk is only an estimate and may be miniscule, but patients are encouraged to accept treatment to reduce this tiny risk; yet the treatments are invasive and may create symptoms that didn’t previously exist - a complex equation of probabilities. 

While early diagnosis of dementia (or MCI) might lead to some people being prescribed unnecessary or ineffective drugs, by this reasoning the instance of women receiving invasive treatment for pre-cancer must already be great, with demonstrable physical and mental harm?  Should we then lobby to stop women’s cancer screening?

Another potential harm in unsought dementia testing is loss of trust between doctor and patient.  If patients feel that a routine visit to the surgery may lead to diagnosis of dementia by stealth, say the medics, they will be discouraged from presenting with other health conditions.

I can sympathise here.  My fear of antagonism, upset, and damaged trust was the major barrier to my pressing for diagnosis for my mum.  I found it particularly hard as sole carer (and mostly sole witness to her symptoms) to broach this unwanted issue with her; I desperately needed support.  If doctors are afraid to raise dementia with their patients**, how much harder is it for that person’s nearest and dearest in a one-to-one relationship, or for concerned friends or neighbours? 

That’s why I would welcome some form of “screening”, in the sense of a proactive annual review of all at-risk patients, which takes the initial onus off patient or carer, and could provide a neutral framework for such family concerns to be brought up.  It could also identify those without family support. 

I would like to see a wider range of first points of contact - holistic means of accessing support for those who are reluctant to present themselves in medical settings. The burden of initiating support should not fall solely to GPs, any more than to carers. 

But all agencies need to acknowledge that dementia is a condition that doesn't affect just the patient – for every person with dementia, there is probably at least one family member, partner, or friend, whose life is equally blighted by that person’s symptoms.  And those who have no-one to advocate for them may be left in terrible circumstances, which would not be acceptable if attributed to any other medical cause. 

There’s never a good time to be diagnosed with dementia. Early, and you may not accept it at all; late, and you may already have come to crisis.  “Timely” is a word now preferred by some; but all these terms are subjective.  “Timely” suggests a point at which some medical or practical good can still be done, but the person in receipt of diagnosis is willing to accept it.  In my experience, this latter condition may never be met. 

I appreciate that the GPs who oppose the government scheme are not saying they are unwilling to diagnose, just that they believe it’s counterproductive to go looking proactively for those who aren’t presenting as symptomatic.  But that’s to assume that all those who don’t present are non symptomatic, or that they are “coping”.  I know this can be very far from the truth. 

“Diagnosis of dementia is a life-changing event”, say the doctors in their letter. No, developing dementia is a life-changing event.  Refusing the label, or declining to give it unless asked, doesn’t make the symptoms go away, it doesn’t negate the need for help, or avert eventual crisis. 

I agree that the government screening proposals were not the most effective for either patients or GPs; they admit of many flaws. And I did once believe that a label would serve no useful purpose for my mum, who would have rejected drugs or referral to a memory clinic; I discussed this many times with her GP.

But now I know that diagnosis is not just about those things; support services may not be perfect, but diagnosis gives you the key - an entitlement to ask. 

With hindsight born of a decade of lost years (both mum’s and my own) I wish someone had come looking for us.

*Updated DES link @April 2015-2016.

** Doctors may fear that patient confidentiality means they cannot discuss a person's symptoms with family or friends, but this is not so.  The Information Governance Review of 2013 (see pg 119, Principle 7) states that "The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles."

Read the response of Professor Alistair Burns, National Clinical Director for Dementia, Department of Health, to the GPs' Telegraph letter.

Whose Low Expectations?

In February 2013, the UK Alzheimer’s Society launched a report into “attitudes on choice, care and community for people with dementia in care homes”.  What did they call it? ‘Low Expectations’. This report has been widely quoted in the UK media, with negatives firmly to the fore. 

“Less than a third of the public believe [sic] people with dementia are treated well in care homes”, screamed the headlines. “Only 41% of relatives reported that their loved ones enjoyed good quality of life”. 

Then, buried as a caveat, “Despite this, three quarters (74%) of relatives would recommend their family member’s care home”.  

Record numbers of people with dementia in care homes 

What are we to make of this apparent contradiction?  Are we to infer that 74% of relatives are so uncaring and feckless as to recommend a place that makes their loved one’s life a misery?  The Alzheimer’s Society chooses to extrapolate that those relatives have “low expectations” and therefore settle for substandard care. That’s the impression left by much of the news coverage and commentary. No wonder “dementia is the illness most feared by people in England over the age of 55” (Government NHS Mandate, updated 2014-15, pg 12, 2.12).

But let’s examine these statements. Firstly, the results of any survey can be hugely influenced by the phrasing and choice of questions.  This one appears to have focused largely on the respondents’ impressions and fears, rather than any objective assessment of their relatives’ situation: “less than a third of the public believe people with dementia are treated well in care homes” is a somewhat different qualitative statement than “less than a third of people are treated well in care homes” – yet the casual reader or listener could be forgiven for assuming the latter. 

And I would suggest that the conclusions drawn by the Alzheimer’s Society are not the only possible interpretations of this data.  If I had been one of the respondents, I would have said that my mum enjoys as good a quality of life in her care home as possible in her circumstances; but that her overall quality of life is not good.  That’s not the fault of the care home; she’s materially better off there than she was on her own at home in recent years. But for a long time her quality of life has been compromised by dementia. 

Thus I can well understand why far more people were willing to recommend their relative’s care home than could honestly say their relative has a good general quality of life.  The latter is not wholly dictated by the former.  The condition which brought them into care is at least as crucial a determinant. Q&A surveys are not equipped to record or communicate such nuances or ambiguities. Answers can also be manipulated to fit a pre-determined theory or agenda.

I know there’s a great drive to promote the idea that people can “live well with dementia”, and certainly we should fight for improvements and innovations in care across the board to enable this; but for many in the latter stages the reality is closer to “existing tolerably”. It’s misleading (and I think potentially harmful) to imply that this can always be transformed by good external agency – and to make relatives feel that if it’s not, that’s a failure of will, “expectation”, or resources.  Dementia is tough, whatever you do.  Let’s not beat about the bush.

So I was frustrated by the slant of this report commissioned by the Alzheimer’s Society and disappointed by the BBC TV season, ‘When I’m 65’, screened in autumn 2012.  

‘When I’m 65’ (and within it, the series When I Get Older) was a well-meaning initiative to raise awareness of issues faced by older people, including dementia and residential care. Celebrities such as Gloria Hunniford, John Simpson, Tony Robinson, and June Brown were sent for a few days to share the experience of care home residents and asked for their impressions.  The dominant theme was being “humbled” by what they learned; and while there was some attempt to find positive factors, their personal reaction was mostly shown to be one of dismay at the perceived loss of liberty, autonomy, and homely comforts - the restriction of lives. 

There was little corresponding sense of what those lives had actually been like before the residents entered care - the kind of long-term decline and repeated crises that often lead to such a decision, and the relative benefits of being in a safe place with 24-hour company, instead of being in many cases alone, hungry, dehydrated, perhaps confused or paranoid, and at constant risk of harm. 

The celebrities were invited to empathise for the course of the experiment, but in my view they projected their own expectations and background a little too much into their judgment of what they witnessed; and although some changed their viewpoint to a small degree, we were left in little doubt at the end that they simply considered themselves fortunate not to be faced with these issues for real and didn’t foresee they ever would be.  They tended to assume that their relative wealth, status, and loving families would protect them.  “I suppose I’ll rely on my children to make sure it never happens to me...” (The implication being that the families of the residents they had met had somehow cared less?)

This conclusion was not challenged by the producers – there was no onscreen presenter to put the argument that conditions such as dementia are no respecters of money, status, intelligence, talent, or belovedness; that residential care can be a relief and improvement on previous traumatic circumstances created by illness or disability; or that refusal to face the possibility of one's own decline, and share responsibility for it, can be selfishly short-sighted.

The BBC used familiar faces to front these programmes, in order to make the issues accessible.  Identifying with these figures, viewers were asked to consider how they might face care needs.  But in allowing the celebrities to revert to default setting – “Ooh, isn’t it terrible!  Poor things!  But it won’t happen to me” – the original fears and preconceptions the season set out to question were ultimately reinforced.

So long as media stories, surveys, and even charity and government initiatives continue to perpetuate a dread of care (and of diagnosis, which I'll address in my next post), thousands more will avoid discussing care needs with their families and professionals, fail to make plans, struggle unnecessarily without help - and still end up in crisis. 

Yes, we need more and better services; there’s plenty of room for improvement.  But we won’t get it by looking the other way, sticking our fingers in our ears, and choosing to believe that it’s “low expectations” that are responsible for poor quality of life.