“The need for an early diagnosis” is the central message of the January awareness month campaign sponsored by the Alzheimer Society of Canada (ASC). In a recent CTV news broadcast, this message was repeated once again. According to the ASC’s Naguib Gouda, 75% of those surveyed said “they wished they had gone to see their doctors sooner” for a diagnosis.
Anyone familiar with the devastating effects of this disease knows the need for early diagnosis only too well. That, actually, is old news. Thus, creating awareness about the need for an early diagnosis is warranted. What is upsetting is that ASC is messing with the message.
The ASC’s “new” message this year is but a sequel to that of last year’s. In January, a study published by the Alzheimer’s Society repeated the warning that, “A delayed diagnosis results in a huge treatment gap and prevents people from getting valuable information about medications, support and better disease management”. The drug treatment message was re-enforced by Gouda who said, “The earlier you have access to the drugs that are available… the more likely these drugs are to help manage your symptoms and potentially even slow down the progression of the disease.”
Early diagnosis is very important for many, many reasons, but taking dementia drugs is not one of them.
The US Food & Drug Administration, for example, warned Eisai Co. Ltd that its TV ads for the Aricept, used to treat Alzheimers, were “misleading because they overstate the efficacy of the drug.” But this message probably was not heard by Canadians, many of whom see TV ads promoting Alzheimer drugs on US stations. Unfortunately, the Aricept ads were only removed when the patent for the drug was about to expire and a generic version was about to be introduced. Eisai had already made its money over the course of many years with its misleading advertising. The vast majority of those taking Aricept, or other dementia drugs (including their generic equivalents), experience no change in their condition or become worse over time (Wolfe, S., et al, 2005).
The published results of dementia drug trials have been met with a good dose of skepticism. The majority of these trials are Pharma-funded and most of the published results are positive. Few trials are funded independently of the drug industry but those that are sponsored by non-industry funding sources are more likely to find less positive results. In addition, family caregivers reveal that common tests, such as cognitive, behavioural and global assessments, used in investigating the effectiveness of these drugs are not reliable. These tests are taken only at a moment in time and do not reflect the nature of most dementias. Dementia, in most cases, is non-linear, protracted and the symptoms are variable and unpredictable. Studies testing dementia drug efficacy are also more easily open to distortion and subjectivity, similar to studies that test drug efficacy for psychiatric conditions.
Not only are these drugs ineffective for most people, but those that promote them often minimize their significant risks. These drugs carry the potential for dreadful, but common, side effects including, bradycardia, gastrointestinal disorders, muscle cramps, fatigue and, not least, psychiatric manifestations including hallucinations, agitation and aggressive behaviour. Some of these risks are very high. Bradycardia and syncope are rated to be about 10%. When affected by dementia, you become confused and disoriented. Do you need an ineffective drug that may make you agitated and aggressive at the same time or make these symptoms worse? An article that appeared in the journal Prescrire (2011) summarizes it best: Since the side effects are very serious and their minimal benefits, if any, are rare; do not use these drugs.
Instead, ASC’s Gouda neglects to mention these serious side effects and promotes false claims about the effectiveness of these drugs. Both the ASC and the drug industry offer false hope to vulnerable and desperate people with dementia and their caregivers. These caregivers, particularly at the disease’s onset, are unwittingly involved in helping persons with Alzheimer’s make sound decisions on their behalf, including decisions about taking drugs. Drug companies know full well that these caregivers know little about the disease or what to expect.
So the question is: why does the ASC’s message vigorously promote ineffective dementia drugs as a primary benefit of early diagnosis at the expense of other approaches that are critically important? Why is the ASC not aggressively demanding educational support and resources as early as possible that would certainly make a difference to persons with dementia and their caregivers?
The ASC depends on funding from the drug companies and this dependency leaves the agency open to influence. Researchers have exposed the harmful consequences of patient groups that receive drug company funding. As a 10 year volunteer of the organization, I observed firsthand how ASC relied on communications experts with ties to Alzheimer drug companies, as well as industry-funded medical advisors and researchers. Alzheimer drug companies have their own motives in wanting to promote an early diagnosis through patient groups. For example, patient organizations, such as ASC, serve as recruitment vehicles for clinical trials. The relationship between ASC and Alzheimer drug companies is very detrimental to those who suffer from the disease and their caregivers. Measures to limit the influence of drug companies in patient groups are sorely needed.
ASC has extolled the benefits of early diagnosis, but has focused on the promotion of ineffective and harmful dementia drugs. This focus misleads persons with dementia and their caregivers and prevents them from dealing with issues that are truly important. The way ASC has messed with the message is deplorable.
About the Contributor
Linda Furlini has counseled many caregivers, and for 10 years was a volunteer for the ASC at the local, provincial (President) and national level. Her doctoral thesis focused on caregivers’ need for educational support. Results highlighted the need for an early diagnosis allowing caregivers to better protect the rights of persons with dementia and ensure they receive appropriate care. She advocates that publicly-funded educational support, free from commercial interest, be available for persons with dementia and their caregivers. Both her parents were affected by Alzheimer’s disease and they, as well as their family, would have benefited from an early diagnosis, educational support and appropriate resources.
Wolfe, S., Sasich, L., Lurie, P., Hope, R., Barbehenn, E., Knapp, D., Ardati, A., Shubin, S., Ku, D. & Public Citizen Research Group. (2005). Pocket Books, NY