Locked in a mental prison: Elderly miss out on funding and treatment for dementia
Of all the health problems associated with growing old, dementia is the condition that elderly individuals fear the most.1 But the stark reality is that the longer we live, the more likely it is that we will develop this incurable “mental prison” of a disease. New treatments are desperately needed, yet dementia receives only a fraction of the research funding given to cancers. Meanwhile, treatments that can offer help to patients are being withheld based on cost issues.
Is dementia being swept under the carpet?
Mary Baker MBE, President of the European Federation of Neurological Associations, speaks to MedWire reporter Andrew Czyzewski about whether patients with dementia are overlooked and undertreated.
Mary Baker MBE is president of the European Federation of Neurological Associations (EFNA), Vice President of the European Brain Council (EBC), and consultant to the World Health Organization (WHO).
The growing burden of dementia
Around 700,000 people in the UK alone suffer from this progressive, neurodegenerative disease, incurring a yearly cost of around £17 billion (~US$34 billion, €21 billion).2
The term dementia actually encompasses a collection of symptoms, including a decline in memory, reasoning, and communication skills, caused by structural and chemical changes in the brain. Alzheimer's disease, vascular dementia, dementia with Lewy bodies, and frontotemporal lobar degeneration are the most common types of dementia.
Dementia can affect people of any age, but is most common in elderly individuals. One in 20 people aged over 65 years and one in five people aged over 80 years has a form of dementia.2
Put simply, “the longer we live the more likely it is we will acquire dementia and other brain diseases,” Baker comments.
With a growing elderly population it is easy to see why dementia has been referred to as the most important public health and social care challenge we face today.3 Indeed, a joint report by the London School of Economics and Institute of Psychiatry estimated that there will be almost a million people suffering from dementia by 2021. By 2051 dementia will affect the lives of around one in three people as a sufferer, carer, or relative.2
The question is: are we doing enough to prepare for this potential timebomb?
“When a government takes the lead on highlighting major targets, like they have done in the past for cancer and cardiovascular diseases, they have made major strides forward – you can see the differences in the hospitals and the services.”
Baker believes that dementia and other neurologic conditions must become a national priority, with a focus on improved care, more effective treatments, and quicker diagnoses.
“When a government takes the lead on highlighting major targets, like they have done in the past for cancer and cardiovascular diseases, they have made major strides forward – you can see the differences in the hospitals and the services.
“You only have to go on to the psychogeriatric wards where we are looking after [dementia] patients to see that they don’t compare with the efficiency and high standards of nursing you have on cancer or cardiothoracic units.”
A report by the House of Commons Public Accounts Committee released in January 2008 concluded that the Department of Health is not giving the condition the attention it deserves, in terms of care and access to drugs.4
The Committee found that the burden of care most often falls on family members, who do not receive adequate levels of support from the system. While these unpaid caregivers may in principle save the taxpayer £5bn (US$9.88bn, €6.35bn) a year this was ultimately a “false economy,” the report said.
Baker also warns that if we don’t address such issues “the cost of taking care of these people will start to erode the programs for diabetes and other parts of the healthcare system.”
The drugs don’t work?
Dementia is a progressive condition, meaning that the symptoms become more severe over time.
At present there are no pharmacologic treatments that can halt this inevitable decline, but research suggests that a class of drugs called acetylcholinesterase inhibitors may relieve symptoms in some patients.
These drugs were developed following the discovery in the early 1970s by David Bowen (The Institute of Neurology, London) and colleagues that levels of the brain neurotransmitter acetylcholine were reduced in the cerebral cortex of subjects with Alzheimer’s disease.5
Acetylcholinesterase inhibitors address this deficiency by reducing the breakdown of acetylcholine, increasing both the level and duration of its action in the brain.
In 2006, a landmark study by Bengt Winblad and colleagues from the Karolinska Institute in Stockholm, Sweden found that the acetylcholinesterase inhibitor donepezil improved cognitive, functional, and behavioral symptoms in patients with late-stage dementia.6
Proponents of these drugs claim that they allow patients to remain independent and “be themselves” for longer.
“It is incredibly hard for any family to see people that they love and respect deteriorating in this manner.”
Other studies, however, have found that acetylcholinesterase inhibitors have, at best, a modest effect on cognitive symptoms and also carry the risk for side effects.
Noting this controversy, the American College of Physicians (ACP) systematically reviewed evidence from 59 randomized controlled trials regarding the efficacy of the five US Food and Drugs Administration (FDA)-approved treatments for dementia - donepezil, galantamine, rivastigmine, tacrine, and memantine - hoping to come up with consensus recommendations.7
However, the panel, led by Amir Qaseem from the University of Pennsylvania in Philadelphia, found only a very modest effect of these drugs on dementia symptoms, and in some cases they caused severe side effects such as liver damage, nausea, vomiting, and dizziness.
Based on these findings, the ACP does not recommend prescribing these drugs routinely to all patients with dementia, and instead suggests that clinicians initiate a course of a therapy on an individual basis, taking into consideration adverse effects, ease of use, and, of course, cost.
So doctors treating dementia are reduced to employing a trial and error approach, which comes as little comfort for people who have to watch a loved one’s illness get worse, Baker notes.
“It is incredibly hard for any family to see people that they love and respect deteriorating in this manner.
“I meet families who swear that things have improved [with acetylcholinesterase inhibitors] but we don’t give weight to their views.”
She adds: “These drugs can give hope and hope is a particularly difficult thing to measure.”
But in this era of evidence-based medicine and cost-benefit analyses is there any room for anecdotal accounts and even hope?
NICE giveth and taketh away
The reality of modern-day healthcare is that regulatory bodies have to take difficult decisions regarding the provision of new drugs and technology in the context of finite resources. The UK National Institute for Health and Clinical Excellence (NICE) has come under particularly heavy fire for its decisions regarding treatments for dementia.
In 2001, NICE recommended that donepezil, galantamine, and rivastigmine be made available as standard care for patients with mild-to-moderate dementia (defined as a mini-mental state examination [MMSE] score of 12 or above).8
This decision was revised in 2005 and these drugs were restricted to patients with moderate-stage disease only (defined by a MMSE score of 10–20), denying access to patients in the first stages of the disease.
NICE said the drugs, which cost around £2.50 (US$4.99, €3.15) a day, are not effective enough to recommend them for all individuals. But patient groups argued that the drugs help patients with early-stage disease maintain their independence for longer.
Campaigners appealed the decision, which was ultimately upheld by the High Court in August 2007.9
The Alzheimer’s Society called the decision “insulting and devastating” while Eisai, the manufacturer of donepezil, branded the action “morally reprehensible.”
Baker, however, is more pragmatic and accepts that regulatory bodies like NICE have to make these difficult decisions, but nevertheless wonders whether elderly patients with neurologic conditions are getting a raw deal compared with younger patients with other conditions.
It is a view she shares with others such as John Harris, professor of bioethics at the University of Manchester, UK, who argued in The Lancet that the Quality-Adjusted Life Year used by NICE and others to determine the benefit of treatments discriminates against the elderly, who have fewer years of life left to preserve.10
Another problem Baker highlights is that elderly patients with dementia “often have other conditions making it very difficult to demonstrate to people like NICE that there is a definitive benefit.”
Looking to the future
Given the large and growing burden of dementia on society, there is clearly a desperate need for new, more effective treatments.
“[Dementia patients] know that very intricate wiring has gone down, they don’t expect repair and cure, what they expect is to stop it deteriorating.”
By examining the senile plaques and tangles that form in the brains of people who have died from dementia, scientists have gained a greater insight into the neurologic processes that go awry in the disease. However, as Baker observes, every new finding seems to bring with it an added layer of complexity and in doing so seemingly dashes hopes for a cure.
Most experts agree, however, that a cure is out of reach for now and that a realistic goal should be to slow the progress of the disease or implement preventive measures. Indeed, this is a goal worth pursuing; calculations show that delaying the average age at onset of dementia by approximately 5 years would reduce the numbers of individuals with the disease by 50% by the year 2050.11
“[Dementia patients] know that very intricate wiring has gone down, they don’t expect repair and cure, what they expect is to stop it deteriorating,” adds Baker.
To date, targeting the dysfunctional cholinergic nerve cells of patients with dementia using acetylcholinesterase inhibitors has borne some fruit, but researchers are now turning their attention to other aspects of the disease.
As well as the build-up of plaques and tangles in the cerebral cortex, dementia is characterized by a progressive loss of pyramidal cells. Named after their triangular-shaped cell bodies, these neurons use the amino acids aspartate and glutamate as neurotransmitters and play a vital role in the mediation of excitatory synaptic transmission.
One of the receptors for these amino acids, the N-methyl-d-aspartate (NMDA) receptor, is thought to play a key role in both cognitive function and neurodegeneration.
Memantine is a newly developed drug that blocks the NMDA receptor and may protect against excessive neuronal cell loss. Launched on the UK market in 2004, the drug has shown early promise, but further trials are needed to establish whether it has any real potential over existing treatments.
Other researchers believe that studying the genetic mutations that underlie some cases of dementia will provide the foundation on which to develop new therapies.
In a small minority of cases, dementia can strike people in their 30s and 40s, and such early-onset dementia is thought to be caused by inherited factors.
For example, a small number of families worldwide have a genetic fault on chromosome 21 in a gene that encodes amyloid precursor protein (APP), which increases the production of the protein amyloid, which contributes to Alzheimer’s disease. Research is currently underway to develop therapies that target amyloid aggregates, which are also found in patients with late-onset dementia.
However, the main barrier to more effective treatments is not a lack of ideas but rather a lack of funding.
Just 2% of government grants through the UK Medical Research Council were spent on dementia research in 2003–4, despite the fact that the number of people with dementia in the UK is forecast to double within a generation.
Baker thinks that part of the problem is that dementia and other brain diseases that affect the elderly are stigmatized and “all too easily swept under the carpet.” She adds that it is difficult to garner media and public sympathy for an elderly man who is swearing and incontinent due to dementia, compared with say a mother of three who is fighting a battle with breast cancer.
But she stresses that regardless of how dementia is perceived by the masses, it is something that we will all have to come to terms with as more and more people succumb to this “mental prison of a disease.”