Ever since her 73-year-old father stopped driving a year ago, Jayne has been taking him to buy groceries, and to his medical appointments. “Where are we going?” is a question she’s heard often during their outings. “I didn’t think much about it at first, but when he started asking me the same thing repeatedly, sometimes about every three minutes, I began to wonder if it was more than just your typical ‘senior’s moment,’ ” Jayne recalls.An appointment with the family doctor and the results of cognitive testing confirmed her suspicions. Jayne’s father was diagnosed with Alzheimer’s Disease (AD). “Repetitive questioning isn’t normal,” notes Dr. Kenneth Rockwood, professor in the Division of Geriatric Medicine at Dalhousie University in Halifax. “Although many symptoms of AD overlap with the usual changes that occur with aging, repetitive questioning appears to be both an important sign of dementia, and an important goal in its treatment, says Dr. Rockwood, lead investigator in a recent study of Remynil (galantamine), an anti- cholinesterase medication used in the treatment of AD.
Diagnosing dementia is a complex process, and one that not all family physicians feel comfortable with. While verbal repetition alone isn’t sufficient basis for a diagnosis, “it’s the first or second most common complaint in mild to moderate AD, (reported more frequently by caregivers than by those affected, who are often not aware of it), and it’s an easy thing to ask about,” says Dr. Rockwood. He hopes it will become recognized by family physicians and family members alike as an early sign of possible dementia, and prompt further investigation.
A stressful symptom
Not surprisingly, people find behaviours like repetitive questioning, storytelling and uncontrollable repetition of a word, action or phrase an extremely stressful aspect of the illness, to the extent that they were acknowledged in a recent survey of family members as major contributors to the decision to place a relative with dementia in long-term care. Although dementias such as AD are progressive and cannot be cured, treatment does help delay the process; the earlier AD is diagnosed and treated, the longer an individual’s existing cognitive abilities may be preserved. Dr. Rockwood’s research suggests that anticholinesterase medications for AD, such as Aricept (donepezil) and Reminyl, help reduce repetitive behaviours.
Dr. Rockwood’s Video-Imaging Synthesis of Treating Alzheimer Disease (VISTA) study, comparing Reminyl to placebo in 130 people with mild to moderate AD, used a patient-centred approach in which people with AD and their caregivers identify specific goals they would like to achieve with treatment. Reducing verbal repetition was listed as a treatment goal for 44 percent of study participants. After four months of treatment, people taking Reminyl were significantly more likely to have met their treatment goal of reducing verbal repetition than those on placebo. The study also found that reduction in verbal repetition reflected overall treatment response – when repetition improved, patients were also more likely to achieve other preset goals, such as improvements in initiative and recent memory.
“We’re very keen on this patient-centered approach for several reasons,” Dr. Rockwood explains. “Asking people to set goals and judging a treatment on their terms is very democratic. And if you listen carefully to patients, they can actually tell you things about
the disease.” Understanding what drives an individual’s behaviour can be a big help in dealing with it. Dr. Rockwood explains: “For patients, what was clear is that repetitive questioning is not a request for information, it’s a request for reassurance. We found
that this behaviour reliably gets worse prior to upcoming events, including medical appointments. We think it relates to the difficulty that people with AD have when they try to think of themselves in the future – they actually can’t conceive of themselves in the future.” He likens it to the anxiety that might be provoked in an inexperienced traveler who has to go to an airport for the first time, and land in a foreign country: “If you haven’t done it before, you can’t imagine all the steps involved in the process.”
Jayne recalls that her father will ask the same question “at least 10 times a day, and more if he’s got an appointment coming up. If I tell him he’s asked me already, he gets angry. I’ve stopped telling him about any upcoming appointments until a few hours before he has to go.”
Cause for hope
While deterioration in delayed and immediate recall may explain repetitive questioning,
people with AD who repeatedly question can have higher scores on standard tests of cognitive function, such as the Mini Mental State Exam (MMSE), compared to people with other types of repetitive behaviours. Dr. Rockwood suggests this symptom may be related to activity in the prefrontal cortex of the brain, an area not previously studied in AD.
“We now know that there’s a lot of neuro-compensation going on in this region, which is the most advanced part of the brain. The brain doesn’t just sit there and get beaten up, it tries to fight back, and the prefrontal cortex is very important in the way it tries to fight back and repair itself.” Dr. Rockwood says he and his colleagues are currently engaged in an MRI study looking at functioning of a part of the brain called the dorsal lateral prefrontal cortex, before and after treatment with cholinesterase inhibitors, “because we think that some part of repetitive questioning lies in problems there.”
There is growing appreciation that a patient centred approach to research can validate the real-life importance of statistically significant improvements in the outcomes typically measured, such as cognitive assessment scales (also used to diagnose AD). As well, provinces in Atlantic Canada determine whether or not to fund a medication based on whether there is proven effect in target symptoms, he notes, “so we’ve translated this approach into public policy”.
For caregivers like Jayne, understanding that their loved one’s repetitive questioning is driven by their need for reassurance may make answering the same question over and over seem less futile and frustrating. And the possibility that anti-cholinesterase medications may help reduce this difficult symptom, along with delaying other aspects of cognitive decline, is cause for optimism.
Dr. Rockwood receives research support from the Canadian Institutes of Health Research and from the Dalhousie Medical Research foundation as the Kathryn Allen Weldon Professor of Alzheimer Research. He has also received honoraria from Janssen-Ortho, the study’s cosponsor, and from Pfizer, Novartis and Merck. You can learn more about goal setting for people with dementia at DementiaGuide, a website he is developing, at www.dementiaguide.ca.