Dementia may never improve but there are new ways to tackle it

He was a retired factory worker, living with his wife outside a small town in Wales, in the United Kingdom. Once outgoing and sociable, engaged in local activities including a community choir, he'd been jolted by a diagnosis of early dementia.

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. 

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 to practice new techniques.

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.

Laura Gitlin, dean of the College of Nursing and Health Professions at Drexel University has developed something called the Tailored Activity Program (TAP), somewhat similar to cognitive rehab, which also brings occupational therapists into people's homes.

In the United States, Gitlin's TAP programme includes more patients with serious cognitive loss than cognitive rehab does. TAP aims to reduce the troubling behaviours that can accompany dementia: repeated questions, wandering, rejecting assistance, verbal or physical aggression. A pilot study found that with TAP, the frequency of such behaviours decreased compared to a control group, allowing family members to spend fewer daily hours caring for patients.

"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."

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. 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. Over several months, the man regained some independence, Clare said. He told his therapist, "My fear has gone."

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