Vancouver isn’t his home, but it’s a city that David knows well. On one visit a few years ago, however, the city seemed entirely too familiar.
“Every street looked the same, so I couldn’t get back to where my friends lived. Every road looked like the right road, everything looked too familiar. It was the first time I realized there was something wrong with me. I ended up making lots of telephone calls, taking lots of cabs. It was an expensive ordeal.”
Up to that point, David was HIV-positive, but asymptomatic. When he returned to Toronto, he was diagnosed with pneumonia and hospitalized. When his physical condition improved, so did his mental condition. But he was very concerned about the disorientation he’d experienced in Vancouver because he’d watched his brother slip into dementia three months before his death from AIDS.
“There is a fear of loss of control,” says David. “Everyone tries to control their life, but when you lose control over your mind, it is extremely scary.”
Many have been familiar with end-stage AIDS dementia. Today, however, more people are living longer with brain impairment. New drugs have improved and extended the lives of people with AIDS – and that means more people can be physically quite well, but suffer from dementia for a long period of time.
The condition can be stable or progressive. It can range from a mild form of brain impairment that slows a person down, leaving them vulnerable to confusion, all the way up to serious, disabling brain damage.
The impairment can affect mobility (people can become clumsy), cognitive function (forgetful) and behaviour and emotions (changeable moods – in severe cases, paranoia).
This new reality of otherwise healthy but brain impaired PWAs has obvious implications for housing, since some individuals require a good deal of support with the activities of daily living.
Meanwhile, the persistent societal stigma about – and fear of – brain damage and mental illness means the dementia is not always openly addressed. Maureen Carnegie is in charge of support groups at the AIDS Committee Of Toronto. Lately, some group participants have behaved unusually – for example, abruptly leaving a meeting without explanation, or wandering very far off the subject, or talking about something not at all relevant to the subject at hand.
“Unless there is some awareness, people can respond to this kind of behaviour with hostility, or with humour,” says Carnegie, who has organized small education sessions about dementia. “But if you have a suspicion that [the behaviour] is related to dementia, you can try to bring the person back in.”
“People are really afraid to look at the issue of dementia,” says Sheila Thomas, occupational therapist based at the St Michael’s Health Centre on Sherbourne St. “They’re afraid to get tested.”
But neuropsychological testing is something that Dr Mark Halman, psychiatrist at the Wellesley Centre site of St Mike’s, would like to see becoming part of routine work ups, along with viral load testing and CD4 counts. Family doctors could do an initial screening, and then make referrals for more formal testing, he suggests.
It’s a kind of “health monitoring” that needs to be done for a few reasons. For one, studies indicate that people can’t necessarily accurately determine how well their brain is functioning. “Some people exaggerate the impairment, some underestimate it. We’ve found you can’t rely on self report,” Halman says.
More importantly, if testing reveals the advent of brain impairment, steps – including treatment with protease inhibitors – can be taken to stop, slow or even partially or fully reverse damage that may be occurring. Halman stresses that people suffering from dementia are typically capable of giving informed consent to treatment. “It’s more a slowing down of processes than loss of the ability to process. In general, people still retain the ability to do complex appreciation.” As well, some of the complications associated with the impairment – such as apathy, paranoia and being totally uninhibited – can be addressed with medication.
Of course, it’s important to first establish that the symptoms are not due to some other condition, such as substance abuse, or depression.
Before the advent of the highly active antiretroviral therapy (HAART), it was generally acknowledged that about 45 percent of people with AIDS suffered some degree of neurocognitive difficulties. “We don’t have any real numbers yet in the HAART era,” Halman says, noting that doctors and patients are still adjusting to the dramatic overall changes resulting from the new therapies. (Several studies related to the incidence of dementia are underway at Halman’s hospital.)
Meanwhile, occupational therapist Sheila Thomas says that it can be hard for partners, family and friends to observe the effects of impairment. “You see people who have difficulty managing, but are not incompetent. They may make poor decisions – they might blow all their money, even though they’re on a fixed income. Or for example an immaculate dresser might start to unravel.”
In Toronto, a secure unit at the Riverdale Hospital houses people with some of the most serious cases of AIDS dementia. It’s the only chronic care hospital with an active HIV-program, according Steve Tattle, vice-president of programs and nursing services. “A lot of the people we get have fallen through the cracks… many didn’t get much of any kind of health care” until they were diagnosed with AIDS related dementia.
Fluid Xchange is Xtra’s AIDS and HIV issues column.
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