Loving Them To Death
By Gerard WrightMay 29, 2012
Drug companies are racing to break the Alzheimer’s code and reap the profits. But there is a radically different approach to dementia care — involving pets, chocolate, bacon and beer.
How do you recognise the beginning of something, particularly a life-changing event? Sometimes it's only later, looking back, joining the dots to the point of origin.
He'd been a rocket scientist, launching spy satellites on the backs of missiles, then capturing ejected film capsules for the US Air Force, back during the height of the Cold War. The birthplaces of his sons, in snowy Maine in the dead of winter, in beautiful, empty New Mexico, were like bookmarks in a biography, indicators of where he and his family had been stationed. Later, there was Hawaii, and a little town on the edge of California's Mojave Desert.
So … the first sign. Sometimes, in conversation, a word or a phrase would elude him. He would mutter to himself in Cajun French, his first language, the elusive noun, formulate the translation, and somehow come up with an approximation of what he meant, in English.
Later, there were fits of rage. Then the flooded kitchen from the tap left running, the 9-1-1 calls when he walked away from his home. Or, when he could still talk, he'd reach for his daughter's name and feel it…just…out of reach.
Life is full of unintended consequences, and right now America and Australia, along with the rest of the developed world, are living one.
In the United States, the average human lifespan now is 29 years longer than at the start of the 20th century, thanks to advances in medical diagnoses, treatment and the effectiveness of new drugs.
That extended life can come with an infernal price tag. While the body is maintained, physically intact, the personality is hollowed out, until it seems as if only a shell remains.
"An uncontrolled evil," farmer and author Tom DeBaggio called it, back when he was still able to write. "[It's] the closest thing to being eaten alive, slowly." He was diagnosed with early onset Alzheimer's disease at 57 and died 12 years later, although not before writing two books about his experiences.
Alzheimer's will target any brain, big or small.
One day Dr Frank D'Elia sat his family down and told them what was coming. He'd been a World War II pilot, a university English graduate who loved to quote Shakespeare, neurologist, a fellow of national academies and associations of psychology, psychoanalysis and geriatric studies, and an advocate for institutional mental health care, at a time when both ends of the American political spectrum wanted to close psychiatric hospitals.
"It's going to be tough for me," his son Dr Chris D'Elia remembers him saying, when the signs had become unmistakeable, "but much tougher for you."
In its virulent phase — his son's words — Frank D'Elia's dementia made him unruly and difficult. He had trouble sleeping and was terrified when he awoke; not knowing where he was, he would try to escape. His doctors upped the dosage of powerful anti-psychotic drugs such as Thorazine.
Ultimately, Dr. Frank D'Elia, advocate for the mentally stricken, former vice-chairman of the Board of Mental Health for the state of Connecticut, was admitted to a psychiatric institution.
IN THE UNITED STATES, 5.4 million people have Alzheimer's or a related serious dementia issue. The global number is 36 million, according to the Alzheimer's Association. In 2011, an Australian study by Access Economics estimated there would be 278,707 Australians with the disease by the end of this year, with a prevalence rate (across Australasia) of 6.4 per cent among those aged over 60.
Alzheimer's shares characteristics with other incurable afflictions. Like cancer, it is not one disease, but hundreds, according to Dr Bruce Miller of the University of California, San Francisco. And as with Chronic Fatigue Syndrome, it is caused by toxic proteins called amyloids, which attack and destroy brain cells.
The ageing demographic bulge has made finding a cure for Alzheimer's a lucrative prize for drug companies. By 2050, the number of sufferers — assuming no cure in the meantime — is expected to be 16 million in the US, and more than 942,000 in Australia (again, according to Access Economics).
Two years ago, there were more than 100 Alzheimer's treatment drugs in development.
Of course the potential payoff of a widely used drug drives pharmaceutical companies' research targets. But the nature of what is known and unknown about Alzeimer's at this stage suggests that drug companies' efforts in this area are little more than shots in the dark.
"My problem philosophically is that nobody knows how Alzheimer's starts and progresses," the New York health-care strategist and investment manager Les Funtleyder told Bloomberg business news service last year. "Therefore the chances of hitting on a drug are very slim."
Christie Munson, a grants and communications manager with the Beatitudes nursing home in Phoenix, puts it more delicately. "Finding a cure is not where we're at, as a society," she says.
And so, as with Frank D'Elia, many troubled Alzheimer's patients in nursing homes are dosed with anti-psychotic drugs, to take the edge off their behaviour, at least.
Despite the potentially fatal side effects of such drugs, more than 20 per cent of America's 15,600 nursing homes regularly administer them to residents with dementia, according to a Boston Globe report in April 2012. In California, 10 nursing homes were found to be dosing all of their patients with anti-psychotic drugs, whether or not they had been diagnosed with psychosis or a related condition.
The alternative can be found across the border, in Phoenix, Arizona.
If those doped-up homes in California are the worst-case scenario, then Beatitudes Campus Health Care Center, as BBC documentarian Louis Theroux suggested in Extreme Love: Dementia, is the best-case. It may even be the template for how Australia and the rest of the developed world should care for our stricken senior citizens.
Beatitudes has taken what amounts to a relatively and radically drug-free approach to its Alzheimer's and dementia patients, in that it aims to treat the symptoms of their disease, and tries to work to a routine that satisfies the needs of its patients, rather than following a schedule that suits its staff.
It has received almost USD1 million in grants to fund three separate studies, including one to establish whether its philosophy is cost-effective and workable.
An internal study by Beatitudes' staff of the impact of the first two years of its new approach showed reductions in hospital casualty visits, the use of restraints, and overall medication costs.
The components of a medication such as Thorazine can be identified as chemicals — it's a formula; the constituent parts of the treatment at Beatitudes include insight, humour, empathy, close observation, a ready inclination to flout some elder-care rules, and a deep pulse of non-denominational spirituality.
The Beatitudes approach targets a deeper part of the dementia victim's brain, an area beyond the section being ravaged by rogue proteins.
A little like political advertising, this treatment takes aim at the amygdala, the brain's control centre for processing emotions, which studies have shown tends to keep working even as cognitive functions disintegrate. The staff at Beatitudes see this ability to experience and express emotions in patients' tears, laughter or direct engagement when they're watching familiar video clips, listening to favourite songs, enjoying children's visits or attending church services.
"In my limited understanding, the outer parts of our brain are the most susceptible to disease," says Tena Alonzo, Beatitudes director of research. "The closer you get to the brain stem, where the autonomic system lies (controlling breathing, temperature, blood pressure and other bodily functions), we have our older brain, the brain that has been part of us for more of our lives."
Chris D'Elia, dean of the School of the Coast and Environment at Louisiana State University, who watched the toll dementia took on his father, agrees. "They're much more primitive survival functions that are embedded in us. Our strong intellect is sort of an add-on."
Thus, the Beatitude philosophy of trying to understand the dementia patients and draw a response from them is centred on bypassing the logical and rational (since those parts of the brain no longer reliably control interaction) and instead connecting with the emotions. Or, to put it in purely biological terms: because the damaged frontal and temporal lobes are redundant, communication and care are aimed at the amygdala, which controls emotions. Dementia-care specialist Prof Christine Kovach describes it as: "an emphasis on the use of intact patient abilities".
"Even if dementia takes away reasoning, memory and insight, there's still so much that's there," Alonzo says. "The brain is still intact in a large part, and clinicians can use that. If we can think that way, we can help them and create quality of life."
Armed with this key, in 2008 Beatitudes staff set about unlocking potential communication with its patients.
BEATITUDES AIMS to put its dementia patients in situations that are not only comforting but pleasant. Pleasure stimulates the release of endorphins, the brain-generated chemicals that cause sensations of mild euphoria, a natural replacement for dopamine-stimulating drugs such as anti-psychotics.
Scientists also have found that endorphins affect regions of the brain that play a key role in processing emotions. Again, these are brain zones not affected by Alzheimer's disease.
Peggy Mullan, chief executive of Beatitudes, says of the care facilities patients, "If you help them exercise, if they have a pleasant experience with a staff member or a pet, a walk in the garden — even though they won't remember it, it [generates] that endorphin release that stays with them for the rest of the day."
And since the simplest form of pleasure comes from eating, Beatitudes makes food available to its patients at any time of day or night, catering to preferred delicacies (based on information provided by families) such as chocolate, bacon, even alcohol, in moderation.
"Alzheimer's is terminal," Mullan says. "If they die with too much sugar in their system, at least they're happy."
The saddest irony of his condition was that his best days were also his worst.
On an average day, he was a master of the conversational non sequitur. The chats would start in one direction, and then, suddenly, veer off in another, with the new tangent often featuring a technical subject; the impenetrable science of engineering and physics reappearing after an absence of 40 years.
His daughter followed along gamely, responding in kind, whatever direction the exchange took. At Beatitudes and elsewhere, they call this "honouring the reality".
On the worst days, he was lucid and fully aware of what was happening to him. Which is why they were the worst days.
EACH DAY AT BEATITUDES, and the responses given to each patient, involve a balancing act.
"In the beginning we found that if the day started out bad, good luck," Tena Alonzo says. "If someone was angry with the situation, or in general upset or distressed, it went downhill from there. [It's] partly that they can't communicate it in the usual way, but it's also about being in a frustrating circumstance they don't understand."
An internal analysis revealed that dementia patients were receiving 30 per cent fewer pain medications than other Beatitudes residents.
Of course, dementia patients suffer the same physical wear-and-tear issues common to other people of their age, but when they shout, or cry or moan it's not easy to interpret whether they're in pain or suffering some other anguish.
At Beatitudes, patients exhibiting these behaviours are given low, daily doses of Tylenol, an over-the-counter pain reliever. Moreover, all patients are observed by the staff who know them best for non-verbal cues that might also indicate they are in pain.
The regular issuing of painkillers is not new in aged-care facilities. But Beatitudes methods as a whole mean it has far less need than other facilities to administer anti-psychotic drugs. This results in generally happier patients, and in savings — cost savings, to Beatitudes — and potentially huge savings across aged care as a whole.
"If you can prove that this approach to care is cost-effective," a geriatric-care specialist told Mullan, "we can change practice in this country."
Beyond constantly working towards treating their patients humanely, the staff at Beatitudes find themselves wrestling with, and questioning, the consequences of a century of medical advances.
Mullan says she feels society has learned how to treat sickness but not how deal with "the downstream effect".
"We're just learning that not only can't you cheat death, but you shouldn't [try so hard]," she says.
Christie Munson, Beatitudes's communications manager, agrees on the impact of medically delayed departures. She's referring to the high levels of aged care required when she says: "That's what the extra 29 years looks like."
Mullan qualifies this: "Maybe the first 20 years is great, but the last nine are not so great.
"From a spiritual perspective, I've become close to a lot of people who face death, but do I want to live longer? It's easy to say, 'Don't you want one more dose of antibiotics?' We have medicalised life."
Beatitudes was founded in 1965 by the nearby Church of the Beatitudes, part of the United Church of Christ, on nine hectares in North-Central Phoenix. Its 300 staff, including 80 nursing staff, care for 625 residents, whose backgrounds represent a cross-section of the economic spectrum.
Among the church's aims is the practice of "extravagant and radical hospitality", a social value also implicit in other religions such as Islam.
The unspoken truism of any retirement village or aged-care facility is that, for its inhabitants, it will be the last stop on life's long ride. Whether to prolong that ride, particularly in the case of an ordeal like Alzheimer's, is an issue we continue to grapple with.
For Tena Alonzo, it's hardly an abstract concept. "There are things worse than death," she says, speaking from the experience of her own family, and from having cared for thousands of patients at Beatitudes.
Now he is bed-ridden, although still at home. The TV plays a mix of new-age music and Western movies. His heels are bandaged to prevent bed sores. The new, you-beaut mattress on the hospital bed gently rolls, ensuring that there is no sustained pressure point on his body. He is awake for about four hours each day, and at times it looks as though his eyelids are gummed shut.
His wife, the sainted Jean, converted to Catholicism when they married, weak of stomach, indomitable of spirit. They were of the Mad Men era, of cocktails and smoking and questions about the work for the Government that could never be asked.
From the side of the bed, she leans across him, smoothing his T-shirt, straightening the sheets. He had a good life, she says. Worked hard. Partied hard.
At "partied hard" his eyes opened.
The same guy.