By Linda Belardi.
An article published in the British Medical Journal on Tuesday has controversially claimed that significant investment into early diagnosis of dementia is misguided and potentially harmful.
The clinicians and professors in geriatric medicine and public health from Australia and the UK argued that early cognitive screening and diagnostic testing for dementia was often distressing, costly and inaccurate.
This policy shift led by countries such as the UK and the US was also diverting much needed attention and health resources away from care at the advanced stages of the disease, the authors warned.
“Expanding the diagnosis of dementia mostly increases profit for corporations and industries involved with developing screening and early-diagnosis tests, and pharmaceutical and complementary medicines marketed to maintain cognition in old age. It also provides work for clinicians specialising in dementia,” the authors, including the University of Sydney’s Professor David Le Couteur and Bond University’s Professor Jenny Doust wrote.
The authors said the distress of an early diagnosis especially in asymptomatic people through biomarker testing may result in suicide or euthanasia and encouraged others to seek out unproven therapies such as ginko biloba or cholinesterase inhibitors, with potentially harmful effects.
One trial suggested increased mortality in people with mild cognitive impairment treated with a cholinesterase inhibitor and is associated with increased hip fractures and pacemaker insertion. In Australia alone, the total cost of cholinesterase drugs has increased fivefold.
There is also evidence that early screening for signs of cognitive impairment discourages people from further diagnostic evaluation due to concerns about losing health insurance cover, driving privileges and employment or effects on family, they said.
The authors said dementia does not meet the World Health Organization’s Wilson-Jungner criteria for screening and the appropriateness of screening has been questioned in the absence of any useful preventive or curative pharmacological intervention.
In the US, under the new Affordable Care Act, the Medicare insurance program will cover an annual wellness visit to a doctor that includes detection of cognitive impairment and the UK government has announced financial rewards for GPs for assessing older people for dementia.
Commercial interests of an ageing population
The authors said a policy focus aimed at increasing the rates of diagnosis of dementia and cognitive impairment was “rolling out untested and uncontrolled experiments in the frailest people in society without a rigorous evaluation of its benefits and harms”.
They said pharmaceutical companies were behind the push to reward doctors for increased diagnosis rates in the UK and were the developers and distributors of these early diagnosis tests and therefore stood to gain the most from these policies.
The authors said the political rhetoric of ‘fighting dementia’ would be much better served by efforts to reduce smoking and obesity.
“Although increasing the diagnosis rates might raise awareness and perhaps fear of dementia in the community, there is a risk it will result in reallocating resources that are badly needed for the care of people with advanced dementia,” they wrote.
Alzheimer’s associations hit back
UK charity Alzheimer’s Society disputed the authors’ criticisms and slammed the expert warnings as “astounding” and “irrelevant”.
Chief executive of Alzheimer’s Society Jeremy Hughes said population screening does not exist in the UK and while there is no cure for dementia, current treatments for Alzheimer’s disease could improve cognitive function for a number of years.
“Discussion of screening is irrelevant as no one is advocating its introduction,” said Mr Hughes. “There is surely no other condition where we could tolerate, let alone encourage, people being kept in the dark, without treatments or support and unable to make decisions about their life,” he said.
The article also discussed the recent trend over the past 15 years to consider mild cognitive impairment (MCI) as a disease in its own right and as a precursor to dementia, despite evidence showing the MCI is often reversible and is a poor indicator of whether a person will develop dementia.
The authors said that under recent changes that broaden the diagnostic criteria for cognitive impairment up to 65 per cent of people over the age of 80 will be diagnosed with Alzheimer’s disease and up to 23 per cent of non-demented older people will also be defined as having dementia.
The BMJ paper was authored by professor of geriatric medicine David Le Couteur, professor of clinical epidemiology Jenny Doust, dementia specialist Helen Creasey from the Centre for Education and Research on Ageing at Concord Hospital and professor of public health Carol Brayne from the University of Cambridge.
The paper is part of the BMJ’s ‘Too Much Medicine’ campaign which in turn is partnering the Preventing Overdiagnosis conference which opens in New Hampshire next week. The focus of that conference will be to discuss how to tackle the threat to health and the waste of money caused by unnecessary care.
What an excellent article. In assessing the veracity of advice that suggests we need to implement screening for dementia, one might follow the advice given to Mulder from the X Files – follow the money. Who benefits? Whose voice is heard? Certainly there is a tension in the area of dementia between money for research, money for testing, money for prevention and money directed toward the actual care of the person who has a dementia – that is money for the bedside. I think the last of these is always, well, last. The voice of the person with dementia and their direct carer is sotto voce – unlike medical researchers, drug companies, and various other professional groups.
I believe that there is a push by pharmaceutical companies to have early diagnosis to get more people using their drugs. This aside people with dementia need time to have their voices heard and to make plans and write stuff down before their views are considered as irrelevant
My concern with early diagnosis is that people with edementia almost immediately are subjected to a social positioning based on their deficits which in turn results in a more rapid decline
I think our focus needs to be on how to support people with dementia in a positive supportive way that allows them to live with their diagnosis, engaged in their community and living a purposeful life
Many people with dementia are fighting to get a diagnosis let alone an early diagnosis. Research in Autralia has shown a diagnosis can take a couple of years. Evidence that MCI is reversisble should be a reason for identifying people have MCI and reversing it as this will reduce the likelihood of the disease progressing.
There is also a concern I have about the paternalism and ethics in this debate. Do health professionals have the right to determine they will not tell people they have dementia or cognitive issues? Usually the first to know is the person or their family long before the health professional.
What are the implications for families and the person when they are not told particularly when the dementia is affecting leagal capacity early.
My experience in working with people over 17 years with dementia is that they are supported much better and are much more confident if they are told of a diagnosis positively earlier when they can plan, continue to live quality lives and access services as they need them.
I agree with Janice the focus needs to be on how to support people with dementia in a positive supportive way that allows them to live with their diagnosis, engaged in their community and living a purposeful life.
I maintain this can occur if the person is presented with the diagnosis in a meaningful manner at any time that they have disease. To me the big issue is how the information is communicated not what is communicated.
I agree with the UK’s Alzheimer’s Society and dispute the authors’ criticisms. Their comments are indeed “astounding†and “irrelevantâ€.
The facts are ….
(1) Cognitive decline happens to ALL of us.
(2) Cognitive decline begins from around age 30.
(3) Dementia (in all its forms) is a 30-40 year disease not something that suddenly occurs late in life.
(4) Mild cognitive impairment (MCI) and Dementia are the SAME disease – it is simply a matter of how far the disease has progressed.
It is certainly also true that lifestyle interventions prior to MCI and at the MCI stage can be quite effective and are the best prevention activities that we know about today.
Given all this – we should be doing VERY EARLY cognitive screening (just like cholesterol checks) as a standard health check from mid life (or earlier) NOT late life. We should be monitoring the rate of cognitive decline over many different cognitive functions over many years – well before IDL symptoms occur. It is the RATE of decline of one or more of our cognitive functions tested at threshold capability that is our most accurate early indicator of dementia risk.
Fully automated cognitive screening by GP’s is being piloted in the UK. Each person’s cognitive status is compared to UK population norm data sets, making it an objective test, as opposed to a single doctor’s subjective diagnosis like we have in Australia. Objective population norm tests are needed to remove the inequity of care (demented or otherwise) that the Productivity Commission into Aged Care noted as one of our country’s major problems. That’s got to be a good thing.
Lastly, cognitive screening is significantly cheaper than a blood test. Suggesting that that Dementia Care will be effected detrimentally by screening services is being dishonest at best.
The risk factors associated with declining cognition in old age are well known and all are LIFESTYLE factors (just like maintaining cardiovascular health). There are no pharmaceutical or complementary medicines proven to reverse or stall cognitive decline.
The following lifestyle interventions actively pursued from early or mid life are known to SIGNIFICANTLY reduce a person’s risk of dementia later in life. There are to : do many different, challenging and novel mental activities (i.e. exercise broadly), stay socially engaged, maintain a balanced diet & reduce saturated fats, watch your weight, do cardiovascular exercise, don’t smoke, minimise alcohol & avoid head injury. The message is not dissimilar to our heart health and the activities are mostly free. No pharmaceutical or complementary medicines make the risk reduction list. The best dementia prevention activities that we have are essentially free – maybe that’s why no one is promoting them !!!!
The answer is for individuals to take responsibility for their own heath, monitor all aspects of it over their life course, seek GP’s advice for prevention activities and to follow doctor’s advice if illness conditions arise. Doing nothing brings ill-health, just like “Life be in it†Norm sitting on the couch many years ago. The message is the same – get engaged in life.
Steve Zanon
Director Proactive Ageing
In response to Steve’s email, I would like to ask a question: How do you encourage people to “engage in life” if they just “don’t wanna”? We all know that prevention of all forms of chronic disease is preferable to developing the disease and enduring the management of it(let alone cure), but I have not yet encountered a truly effective method of engaging a patient’s “will to live”.
Any suggestions?
No one has found the magic solution for that one – and there probably never will be any perfect answer.
We can however look to how we have done it before and improve on those strategies. Just quickly I can think of two examples (1) smoking decline, and (2) death from cardiovascular disease which is dropping by 1.5% p.a. in Australia. In contrast death from brain related diseases is growing by 1.5% p.a. and neurological diseases have by far the largest prevalence for those over 70.
It’s more like a combination of behavioural attributes such as … establishing goal based targets, intrinsic motivational tactics, creating a sense of purpose, creating a sense of personal responsibility, our courage to face challenges and overcoming laziness. That all sounds to me like aspects of PERSONAL MATURITY. Is there a difference in the maturity level of someone who will proactively “engage in life” v’s someone that just “don’t wanna”? How do we help a child through adolescence – learning what it means to begin to mature and establish a self identity ? Somehow I don’t believe maturity or self identity stops at 18, 25, whatever …. It should be actively developing until we die. Maybe that’s the problem – we think there is an end point to growing one’s maturity. At the end of the day we all make our own (im)mature choices and we have to live (or die) with those choices.
….. But when the public fails to take personal or collective responsibility for themselves and Govt coffers start to be impacted we will be forced (sadly) to use carrot and stick approaches. This will happen – we cannot as a population afford to pay for the healthcare costs of the boomer generation as the bulk of them retire. That’s pretty certain. How responsible is it to just “refuse to knowâ€. As someone famous once said “True Courage is not the absence of fear – it is the ability to act in spite of itâ€. How courageous are we as individuals and as a community ? What are the consequences of not being courageous and not taking action ?
Maybe doing compulsory full health checks, including cognitive screening as a standard health assessment from mid life (or earlier) will put enough population hard data on the table to help us wake up as to what we need to do – both individually and collectively.
Steve Zanon, Director Proactive Ageing