Doctors Talk Frankly About What Encourages And Impedes Early Diagnosis Of Alzheimer's

Current data suggests that less than 35 percent of people with Alzheimer's disease or other dementias have a diagnosis of the condition in their medical record (Boise et al., 2004; Boustani et al., 2005; Ganguli et al., 2004; Valcour et al. 2000). While there is currently no cure for Alzheimer's, early detection and diagnosis is critical to ensuring that people living with Alzheimer's have the power to plan their own healthcare and future, according to the Alzheimer's Association.

"By getting diagnosed late in the progression of the disease, opportunities are missed to make key decisions about treatment, care and, future planning. Being diagnosed early is vital to receiving the best help and care possible, living one's life to the fullest, and capitalizing on opportunities such as participating in clinical studies," said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer's Association.

Dr. Nerida Paterson, Senior Lecturer in the Discipline of General Practice at the University of Newcastle, Australia, and colleagues are interviewing more than 100 general practitioners (GPs) from four Australian research sites, taping and transcribing the interviews, and analyzing the content for themes and insights that can improve the diagnostic process.

"Increasing evidence suggests that early diagnosis of Alzheimer's and timely intervention is beneficial, both for people with the disease and their caregivers," Paterson said. "Because doctors are the primary entry way to healthcare services for the elderly and the usual point of contact with the health system for individuals with dementia and their caregivers, there remains a need to overcome their attitudes of 'therapeutic nihilism' surrounding dementia."

According to Paterson, "therapeutic nihilism" is a belief that there is no recognized cure or effective treatment for an illness, and therefore treatment or intervention in any form is not important.

At ICAD 2009, Paterson reported an interim analysis including interviews with 25 GPs.

The most cited enabler to early Alzheimer's diagnosis is a doctor's positive attitude to the diagnosis and treatment of dementia. In addition, GPs reported that having a trusting, personal relationship with individuals who provide dementia support services is a powerful enabler for dementia diagnosis and management. Most of the GPs reported that referral to support services for legal and financial planning, patient education, and caregiver support is an important part of disease management.

Additional factors that encourage early Alzheimer's diagnosis include: support from relatives and caregivers, belief in the patient's right to know, and the desire of GPs to be honest and open with their patients.

According to the researchers, the most frequently cited barriers to diagnosis of dementia in this study are that patients and GPs have differing health priorities, GPs are largely dependent on being alerted by either the patient or a relative about symptoms of memory loss, and GPs' challenges with properly timing referral to support services. Also reported by GPs was fear of damaging the doctor-patient relationship, especially around the issue of declaring the patient's inability to drive safely.

"Older patients frequently have complex and overlapping illnesses involving multiple body systems. Often these diseases are having a bigger impact on their day to day lives than mild cognitive impairment. As a result, when they see the doctor, their priority is to have their non-cognitive health needs addressed," Paterson said.

According to the study, this is especially true if the person is also a caregiver. GPs reported that caregivers tend to downplay their own needs and behave as though they cannot afford to become ill and give up their caregiving role. They reported that caregivers spend most of their appointments discussing the person for whom they are a caring, and not their own health needs.

If a patient appeared to be functioning well, GPs in this study were less likely to suspect cognitive impairment. GPs reported that a cognitive deficit is more often brought to their attention by a relative or caregiver than by the patient; an informant is seen as vital for early diagnosis.

GPs also identified that they find it difficult to remember to re-offer referral to Alzheimer's support services to patients and caregivers. GPs generally suggest these services soon after the diagnosis is made. However, patients and caregivers are still adjusting to the diagnosis at this time and may be suffering from denial, anger and guilt and often reject the referral. When they are ready to accept support, the GP is often unaware that their attitude has changed.

The researchers recommend that doctors should be educated to have a higher level of suspicion for symptoms of cognitive decline, especially in caregivers and people with complex, multi-system diseases, and that GPs should offer referrals to support services for people with dementia and caregivers on multiple occasions during the diagnostic and treatment process.

A literature review on early diagnosis of dementia and diagnostic disclosure in primary care conducted by the same researchers and also presented at ICAD 2009, reinforced these themes and suggested that the involvement of practice and community nurses in the diagnostic process may overcome some of the barriers and improve detection rates.