Above: Watch the emotional story of Greg Kelly’s struggle with early onset dementia via SBS On Demand.
A few months later, at 70, he wouldn’t leave the house alone, fearful that if he needed help, he couldn’t manage to use a cellphone to call his wife. He avoided household chores he’d previously undertaken, such as doing laundry. When his frustrated wife tried to show him how to use the washer, he couldn’t remember her instructions.
“He’d lost a lot of confidence,” said Linda Clare, a clinical psychologist at the University of Exeter. “He was actually capable, but he was frightened of making a mistake, getting it wrong.”
Clare directed a recent trial of cognitive rehabilitation in England and Wales in which the patient was enrolled. Cognitive rehabilitation, which Clare has been researching for 20 years, evolved from methods used to help people with brain injuries.
The practice brings occupational and other therapists into the homes of dementia patients to learn which everyday activities they’re struggling with and which abilities they want to preserve or improve upon. Organising a visit with a friend, perhaps. Keeping track of the day’s appointments and plans. Heating a prepared lunch without burning it.
In weekly sessions over several months, the therapists devise individual strategies that can help, at least in the early and moderate stages of the disease. The therapists show patients how to compensate for memory problems and practice new techniques.
Cognitive rehab has its limitations. “We never suggest this can reverse the effects of dementia,” Clare said. It will not raise participants’ scores on tests of mental ability.
But she and other European researchers have demonstrated that people with dementia can significantly improve their ability to do the tasks they’ve opted to tackle, their chosen priorities. Those improvements persist over months, perhaps up to a year, even as participants’ cognition declines in other ways.
“They want to be enabled to manage their lives,” said Clare. “It gives hope that they can handle everyday challenges.”
This approach may represent the future for the growing number of older adults around the world with dementia. Trials of drugs to prevent or treat dementia have failed over and over. Even if some future treatment demonstrated effectiveness, millions of people and their stressed family caregivers need help now.
“We can’t wait another 20 years for some magic pill,” said Laura Gitlin, dean of the College of Nursing and Health Professions at Drexel University. She has developed something called the Tailored Activity Program (TAP), somewhat similar to cognitive rehab, which also brings occupational therapists into people’s homes.
“We’re trying to lay the scientific basis for nonpharmacological approaches,” Gitlin said. “These studies signal that they can have powerful effects on peoples’ lives.”
In the United Kingdom, for instance, a government-supported trial involving 475 people with early-stage dementia found that after cognitive rehab, most participants attained their goals, while those in a control group did not, and they maintained improvement at three months and nine months. (The study has not yet been published; Clare presented the results at a conference last year.)
A smaller trial of cognitive rehab by Belgian researchers, recently published in the Journal of Geriatric Psychiatry and Neurology, found that patients with early Alzheimer’s disease remained better able to do their chosen activities after a year.
“More and more, people will understand how many preserved abilities there are in dementia, and that will help change minds,” said Eric Salmon, director of the memory clinic at the University of Liege in Belgium and the senior author of that study.
In the United States, Gitlin’s TAP program includes more patients with serious cognitive loss than cognitive rehab does. And it takes a somewhat different tack: TAP aims to reduce the troubling behaviors that can accompany dementia: repeated questions, wandering, rejecting assistance, verbal or physical aggression.
A pilot study found that with TAP, the frequency of such behaviors decreased compared to a control group, allowing family members to spend fewer daily hours caring for patients.
Since then, Gitlin and her team have used TAP (and a related rehabilitative program called Cope) in a variety of settings: hospitals, assisted living and nursing homes, with veterans, in community and volunteer groups.
“Let’s think of these as treatments, with the same level of evidence as if you went to a doctor and got a pill, but with no adverse effects,” Gitlin said. “This is what’s effective.”
Many researchers are unaware of cognitive rehab and its variants. Programs use different numbers of sessions, sometimes with follow-up “booster” visits, sometimes not. The studies haven’t followed patients beyond a year to see how long their improvements last, or whether more sessions might bolster those results.
The cost for the TAP intervention, Gitlin’s analysis shows, was a comparatively modest $942 per person in 2009. If her program or cognitive rehab helps keep people at home, or prevents hospitalisations or emergency room visits, it might actually save money.
One could argue that even when it works, cognitive rehab has only a modest impact. Compared to the devastation dementia eventually inflicts — the yearslong toll on family caregivers, the health care costs — how much of a triumph is it to be able to use a TV remote for a few additional months or a year? To make a cup of tea or walk the dog?
But there’s so little good news for people with dementia. They and their families might welcome reports of a rehabilitative approach that could reduce frustrations and make life easier, even for a limited time.
“It’s so sensible,” said Steven Zarit, a longtime researcher of dementia and caregiving at Pennsylvania State University. “Instead of trying to delay changes in cognition, it tries to delay changes in function. People can do more for themselves, and have a better life because of it.”
The retired factory worker in Wales, for instance, decided he wanted to be able to go out alone, but “he was terrified of the mobile phone, thinking he’d do something wrong and break it,” Clare said. His wife had bought a simplified phone, but he couldn’t remember how to use it.
“The therapist taught him each step in sequence,” Clare said. The man wrote down the instructions, then practiced over several weeks using a technique called “expanding rehearsal.” He tried placing calls in the house, then from outside in the yard, then from down the street.
Once he felt confident about being able to call his wife if he needed her, he had to remember to take his phone when he ventured out. He and his therapist developed a mnemonic, the letters BMW, to remind him he needed his bus pass, mobile phone and wallet.
He returned to choir rehearsals and walked to nearby shops. He and his therapist moved on to demystifying the washing machine and microwave, using color-coded controls.
Over several months, to his wife’s relief, the man regained some independence, Clare said. He told his therapist, “My fear has gone.”