Tea and Sympathy, Plus

On a frigid English winter night, the strains of Summertime—when “the livin’ is easy”—waft across a white-walled caf. Sipping tea and coffee and nibbling snacks, men and women chat amiably around small rectangular tables. But this is no ordinary coffeehouse. The warm and welcoming spot in Farnborough, Hampshire—55 km southwest of London—is open only one night a month, for just two-and-a-half hours. Its name, worked in neon, conveys its special role: Welcome to the Alzheimer Caf UK.

Modeled on a network of such cafs pioneered in the Netherlands, the Alzheimer Caf UK is designed to provide a place to gather and exchange information for people afflicted with dementia, along with their relatives, nurses, psychotherapists and social care professionals. Alzheimer’s disease—which afflicts an estimated 12 million people worldwide—is the most common cause of dementia in older people, affecting the parts of the brain that control memory, thought and language.

“Looking after a dementia patient is hard work, a living bereavement,” says Raj Chhetri, a caf patron and a nurse-manager at the nearby Ridgewood Center’s Day Hospital, which provides dementia screening and treatment. “The caf gives people a chance to ventilate their feelings, takes the stigma of dementia away and provides bit of education.”

The idea originated with Bre Miesen, a Dutch psychologist who launched the first Alzheimer Caf in Holland in 1997. The driving forces behind the U.K. caf, which opened in November in a local church parish center, are Kandy Redwood of Hampshire County Council’s social services department and Gemma Jones, a neuropsychologist who collaborated with Miesen on several books on dementia.

Since Miesen set up the first caf in a lecture hall at Leiden University, 10 have sprung up in the Netherlands and one in Antwerp, Belgium. “I wanted to focus my lectures about trauma on dementia,” explains Meisen. “So I decided I would get dementia patients into the university to talk about their experiences and came up with the informal caf idea.”

Introduced to the concept by Jones, Redwood says she found it surprisingly easy to sell the idea to local authorities—and to obtain the initial $10,000 or so to launch the caf and operate it for three years. Care workers in other areas have expressed interest in setting up similar sites.

“Carers tend to feel that they’re alone,” says Redwood, and dementia is a painful subject for sufferers and their families alike. “Because I’ve experienced it in my own family, I can empathize with their feelings” of denial, shame and isolation. Sixty-five percent of her job, she estimates, is simply providing emotional support to carers (usually spouses or adult children). Redwood’s father, who was stricken with Alzheimer’s disease, died in 1997, at age 76. She acknowledges that, in the early stages of his illness, she, too, was in denial. “I didn’t want him to have it.” At the same time, she was well aware of the confusion, depression and despondency that her father, like all Alzheimer patients, was feeling.

At a recent Farnborough caf session, Redwood and Jones conducted a discussion of the fear felt by dementia patients and the danger, for carers, of letting their feelings of grief and isolation build up. Speaking after the session, Kenneth Eggleton—who looks after his 84-year-old mother-in-law, an Alzheimer’s sufferer—said the time was drawing near to explain to her the painful truth of her condition. “This is only the second time I’ve been here,” he said. “The benefit is to hear what others have to say, to know we’re not alone.”

Pippa Bullock’s husband, Ian, another victim of Alzheimer’s, died last October, at 67. She continues to attend the caf evenings and heads the local Blackwater Valley Alzheimer’s Society. “This is my atonement,” she said. Her husband’s three-year illness, Bullock adds, was “the blackest and bleakest time.” For others in the years ahead, she sees reason for optimism. “I pray that the vaccine now being tested is the answer.” In the absence of a cure, those who suffer from the progressively degenerative disease, as well as their families and health professionals, will continue to find a measure of solace in the cafs.

With reporting by Abi Daruvalla/Amsterdam