In a physician’s effort to get an accurate picture of a patient’s symptoms of dementia, Dr. Tiffany Chow says a lot can be gleaned from the facial reactions and body language of the caregiver sitting in the background.

They have all the goods on behaviour and ability that the patient may be downplaying, Chow told family and professional caregivers at a recent workshop organized by the Alzheimer Society of Hamilton and Halton.

“We need these informants to give us all of the details and physicians need to slow down and just listen, it takes only four minutes to do that,” added the neurologist who is also co-ordinating clinical drug trials with Memantine for patients with dementia at Baycrest Centre for Geriatric Care. (The drug is not covered by OHIP and could cost up to $200 per month or with private health coverage could be $11 per month.)

The process of diagnosing Frontotemporal Dementia (FTD) relies on identifying evidence of behavioural, speech and personality changes.

There is no single test that can definitively confirm the alterations in the brain cells that control reasoning, judgement and behaviour.

Little is known about the cause, or risk factors of this disease that affects men and women, typically in their 50s and therefore impacts their work life and parenting roles. It’s estimated there are currently just fewer than 4,000 people in Ontario suffering from FTD.

And to add to the predicament of FTD, so far, there is no known cure or effective treatment to slow its progression. Treatment currently focuses on managing symptoms.

Thus the dilemma of diagnosis. Family doctors have to rely on caregivers to relay information, said Chow.

Some of the symptoms include adopting new eating rituals that can result in obesity or even choking during an attempt to ingest non-food items. Sometimes people become withdrawn, easily distracted or lose their inhibitions, lose interest in personal hygiene, or become incontinent. Sufferers can lose their speech, echo or stutter words or lose their writing and reading skills.

Later stages include confusion and forgetfulness, diminished motor skills and swallowing problems.

“Caregivers often think patients are intentionally trying to drive them nuts, by being deliberately annoying and can’t be bothered to behave,” said Chow.

What begins in denial then false hope that such behaviour will improve, becomes an unpredictable roller coaster ride of depression and guilt.

Clinicians need to step in, be the reality check and source of information for caregivers and children living in the home, as well as the patient, said Dr. Chow.

“The disease will get worse, we need to be there to be the reality check,” said Chow.

As FTD becomes more understood — on average the dementia lasts two to 10 years — despair and hopeless take hold.

Through providing information at an even pace, so as not to overwhelm caregivers, supports such as mentors from the Alzheimer Society and written medical information about the disease are as important as listening to both patient and caregiver, said Chow.

For example, adult day programs not only give the caregiver a much-needed break, but also allow the patient to be in a safe, ‘can-do’ setting.

“It’s an emotionally draining disease, on all the people in the patient’s life,” said Chow.