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July 19, 2002
According to results from a new multi-country survey of Alzheimer's disease caregivers, some 80 percent of patients with Alzheimer's (AD) remained undiagnosed after presenting symptoms to their general practitioner (GP) or family physician.
The survey revealed that, on average, one year elapses from when disease symptoms are first noticed to when a diagnosis is made, delaying access to earlier treatment that could slow the progression of patients' disease and ease caregiver burden.
Illustrating the central role that GPs play within national health care systems, the survey also found that the majority (73 percent) of caregivers first brought their relatives with AD to a GP, in contrast to only 15 percent who said their relative first saw a neurologist. This was especially true in the United Kingdom, Australia and France, where 90, 88 and 78 percent, respectively, first saw a GP.
Additionally, of the caregivers surveyed whose relative initially visited a GP, only 19 percent reported receiving an AD diagnosis, and of those, only 42 percent were recommended a medication by this physician. In contrast, of caregivers whose relative initially visited a specialist, 67 percent received an AD diagnosis, 77 percent of whom were recommended a medication by a specialist.
One reason for the discrepancy may be that access to Alzlheimer’s care is restricted by many national health care systems. For example, in the United Kingdom, only specialists are permitted to diagnose and initiate treatment for AD to allow access to the medication through the National Health Service.* However, even though specialists were considered the most knowledgeable about this disease state, 39 percent of respondents whose relative was treated by a specialist felt that specialists were not easily accessible.
"Playing a primary role in Alzheimer's disease diagnosis and treatment, general practitioners need to recognize the symptoms of the disease, conduct screening and quickly refer patients to specialists, as required by many national health care systems," said Elizabeth Rimmer, Executive Director, Alzheimer's Disease International. "Specialists then can diagnose and initiate treatment in the early stages of the disease, when slowing disease progression may have an impact and make a difference in patients' and their caregivers lives."
"Delays in Alzheimer's patients' diagnosis also result from caregivers putting off initial physician consultations," Ms. Rimmer further explains. "Increased disease awareness and greater public recognition of Alzheimer's disease symptoms may improve this significant lapse between symptom onset and diagnosis."
The impact on caregivers
The survey found that more than half of the caregivers spend seven days-a-week looking after the relative. In fact, 87 percent of caregivers in Spain indicated that they care for their relative throughout the entire week. In Australia and the UK, caregivers more frequently gave up work (27 and 40 percent) to care for their relative, with half or more (51 and 62 percent) devoting seven days-a-week to providing care.
Nearly three-quarters felt that caring for an AD patient prevents caregivers from living a full life, and more than half of them reported they sometimes suffer from depression. The majority of caregivers felt caring for an AD patient was tiring, while half or more described it as demanding (67 percent) or frustrating (51 percent).
"Alzheimer's disease not only has a devastating toll on the patient, but also on the caregiver, greatly impairing their quality of life," says Jean Georges, Executive Director, Alzheimer Europe. "Timely access to care, treatment and emotional support can play a critical role in helping to ease caregiver burden day-to-day."
Almost all (90 percent) of caregivers agreed that small improvements in the AD patient mean a lot on a day-to-day basis. More than half of caregivers agreed that AD care would be less difficult if the healthcare system made it easier to obtain medication for their relative. In fact, caregivers of patients who were receiving a cholinesterase inhibitor at the time the survey was conducted were less likely to have given up their jobs (10 percent) than those receiving another medication (30 percent) and those receiving no medication at all (27 percent).
Access to treatment
Once diagnosed, nearly three-quarters of AD patients across the five countries were advised to take medication. Of the 27 percent who did not receive a recommendation for medication, the most common reasons given by their physicians were that no cure for AD is available or the patients' disease was too advanced to benefit from medication. Findings in the United Kingdom and Australia differed significantly; in these two countries, less than half of patients received medication at the time of diagnosis.
In cases where a medication was currently being prescribed, 70 percent of caregivers were satisfied with the patient's medication. Common reasons cited for this satisfaction with the medication were that it had a positive effect or slowed down the progression of the disease, and stabilized or controlled the disease. Another reason for satisfaction reported by caregivers was that the AD patient was less agitated and calmer. When caregivers were asked to report on their relative's disease progression from the time of diagnosis, the patients who had been treated with cholinesterase inhibitor drugs, the only first-line treatment approved for AD, were reported to have deteriorated less than those treated with other or no medication.
The role of alzheimer's disease associations
Alzheimer's disease associations are an important resource for caregivers when facing the challenges of caring for someone with AD. Of those surveyed who were members of an Alzheimer's association or similar organization, 59 percent relied on an association for emotional support. Of those, 39 percent received 'a great deal' of advice and 31 percent received a 'fair amount' of advice about the treatment of AD from the organization.
"Because specialists and general practitioners often have limited time to counsel their Alzheimer's disease patients and caregivers, collaboration between medical professionals and Alzheimer's associations is essential," said Mr. Georges. "Associations, such as Alzheimer Europe, continue to campaign for medical professionals to systematically refer people with Alzheimer's disease and their caregivers to the relevant associations at the moment of the diagnosis."
About the survey
The Quality of Dementia Care Survey is a multi-country survey designed to assess the satisfaction of caregivers in relation to AD diagnosis and treatment across surveyed nations. The survey was conducted by Taylor Nelson Sofres among 739 caregivers of Alzheimer patients in Spain, France, Italy, the United Kingdom and Victoria, Australia. Additional data is being collected from other regions of Australia. All interviews lasted approximately 30 minutes and were conducted via telephone during March and April 2002. The survey was funded by Eisai Co., Ltd. and Pfizer Inc.
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