Early stage Alzheimer's: Making the connection

Editor's Note: This is the first in a series of stories focusing on the different stages of Alzheimer's disease and dementia through one family's eyes leading up to the Alzheimer's Town Meeting on Feb. 28.

This week: The early stage

Her mom was quite a character, then again she was an actress. Lorraine Jackson performed in nightclubs in New Hope and New York City. She appeared in summer stock productions of Rodgers and Hammerstein musicals.

For years she worked in the restaurant business — in the kitchen as a waitress and handling the financial accounts. In her 70s, she had a job as a bookkeeper for a local hotel and restaurant.

That's why Marjorie Jackson found it strange that every time she visited her mom, the apartment looked more in disarray. All her life, mom kept a meticulous house. Now, in the kitchen there was evidence of small grease fires.

“Which was unimaginable to me,” said Marjorie, 41, of Yardley. “We were restaurant people. She knew the kitchen like the back of her hand.”

Marjorie sensed something was wrong, but six years passed before she learned what it was. Her mom, now 78, had dementia, most likely Alzheimer's disease.

A 2007 National Institute on Aging study suggests that one in seven Americans over age 71 have dementia and most have Alzheimer's disease, the seventh leading cause of death in the U.S. Those numbers are expected to rise as more baby boomers turn 65, the age when symptoms usually appear, though frequently go unnoticed.

To address this growing health concern, five community organizations are sponsoring two town meetings this year focusing on Alzheimer's disease and other dementias.

More than 280 people have pre-registered for the first event Feb. 28 at St. Mary Medical Center in Middletown. It focuses on the disease, its diagnosis, progression, resources and treatments. Caregivers are the focus of the second meeting, in April.

Alzheimer's disease is the most well-known type of dementia, accounting for 60 percent of dementia cases diagnosed. It destroys brain cells, causing a decline in memory, problem solving ability and behavior until a person can no longer perform routine daily activities.

An estimated 19,210 Bucks County and 30,526 Montgomery County residents have been diagnosed with dementia, according to the Alzheimer's Association's Delaware Valley chapter. Those figures are roughly 10 percent higher if you include residents under age 65, the typical age of onset for symptoms.

In the early stages, often the biggest challenge that patients face is obtaining a diagnosis, which is critical because, if discovered early, many patients can anticipate at least four or five years before the brain deterioration seriously interferes with their ability to perform routine daily functions, experts say.

Early symptoms involve a decline in cognitive abilities — frequent, repeated memory lapses and difficulty concentrating — but the signs are often so subtle they can be confused with the memory loss associated with normal aging.

“When it comes on it's so gradual, it's really difficult to say this is when it started,” said Dr. Daniel Haimowitz, chief of geriatric medicine at St Mary Medical Center. “That is why early screening is really good.”

There is debate in the medical community about whether dementia screenings should be part of the routine health checks recommended for people age 65 and older.

For the last five years, the Alzheimer's Foundation of American has sponsored a free, national screening test day each November. In 2006, a survey of 1,900 of the 21,000 people screened revealed about three quarters said they believed they might have a memory problem, though fewer than 10 percent discussed the concern with a doctor. One fifth of those surveyed had not discussed it with anyone.

The Alzheimer's Association Ad Hoc panel recommended last November that anyone over age 65 with a family history should request and receive memory tests on a regular basis. Others, though, worry that given the subtle nature of the early symptoms widespread screenings could give false reassurances to some people and needless worry to others.

In the last five years, Dr. Carol Lippa has seen more patients with early symptoms of the disease requesting mental assessments. She is a professor of neurology and director of the Memory Disorders Program at the Drexel University College of Medicine.

About one-third of her patients are in early stages of the disease, though the memory loss doesn't meet diagnostic criteria since it doesn't interfere with daily functioning. As long as the person still can function independently, they are not demented.

Early stage patients are not completely functioning normal, but they are not totally dependent. They often need little cues and reminders, Lippa said. But at all stages of the disease, she added, most patients lack insight, meaning they forget that they forget.

“They trivialize it, and that is Mother Nature's way of being kind,” Lippa said. “On the other hand, it can pose problems because they don't understand why they can't drive or when someone it taking over their money.”

MAKING DECISIONS

The average lifespan for a patient after Alzheimer's is diagnosed is 12 years, though many people are not diagnosed until three to five years after symptoms appear, many experts say.

One recent study found that people diagnosed with Alzheimer's under age 70 lived an average of 11 years, compared with an average of four years for people diagnosed at age 90 or older. Overall, the average survival time was 4.5 years for study participants, all 65 or older.

Long-term financial planning is among the most critical components for patients and families. Out-of-pocket expenditures for health and long-term care are higher, on average, for older people with Alzheimer's and other dementias than for other older people.

One analysis based on a large, nationally representative sample from the Health and Retirement Study found that, in 1995, average annual out-of-pocket expenditures for hospitalization, nursing home care stays, outpatient treatment, home care and prescription medications were $1,350 for people with no dementia and $2,150 for people with mild or moderate dementia, and $3,010 for people with severe dementia.

The average daily cost for a private room in a nursing home was $206 in 2006, or $75,190 a year, according to a 2007 Alzheimer's Association study

Most Alzheimer's patients — particularly those in the early and middle stages disease — can be cared for at home typically with in-home supports, according to experts and advocates. More than half of all diagnosed Alzheimer's patients continue to live in home settings, and 80 percent to 90 percent rely on family and friends for care.

Medical research suggests that the earlier people start prescription medications and lifestyle changes (such as keeping mentally and physically active), the longer disease progression can be delayed. Many clinical trials and experimental treatment study opportunities target patients in the early and moderate stages of the disease.

Patients in the early stages of the disease should consider establishing a durable power of attorney for future financial and medical care decisions, a living will and organize their finances, said Claire Day, director of programs and education for the Alzheimer's Association's Delaware Valley chapter.

In the early stage, a patient often can participate in the decision-making involving their finances, medical care, legal and care-giving planning. It gives patients and families more time to educate themselves about the disease and its progression and seek support and advice with advanced planning.

Establishing daily routines to provide a consistent living environment, daily schedule and routines for a person with Alzheimer's or dementia can also reduce confusion, disorientation and agitation.

“It's going to be such a major lifestyle change as the disease progresses. It changes your life completely,” Haimowitz said.

A SLOW CHANGE

Lorraine Jackson never made it big on the stage or screen, but she knew celebrities like Ed McMahon and Ben Vereen, Marjorie said.

She married a jazz trumpeter she met in a New York City nightclub. Eventually they settled in New Hope, when the community was at its peak as an artist enclave.

Lorraine performed in local community theater and sang in clubs such as Odette's and the Canal House.

Marjorie grew up surrounded by art, music and theater. Lorraine encouraged her daughter to listen to classical, jazz and Broadway. She was always singing around the house, mostly standards from musicals like “Carousel,” Marjorie said.

Lorraine's wit was quick, her timing impeccable, honed by her years of performing. She always had a fast comeback, and it was usually hilarious. The jokes usually went way above her daughter's head, but she knew her mom was funny.

“We always had fun,” Marjorie said. “I wasn't always fancy, but we had fun.”

Performing wasn't the only way Lorraine expressed her creativity.

She was an incredible cook, always whipping up a new creation. Long before it was trendy, Lorraine was a vegetarian. She took vitamins and other dietary supplements decades before it was mainstream.

So when her mom started acting out of character, Marjorie figured she might be depressed and lonely. After all, Lorraine was well into her golden years. She lived alone, her marriage long dissolved. Many of her friends had passed away.

Marjorie never heard of dementia, and her impression of Alzheimer's was people who suddenly forgot things and wandered off, she said. That wasn't her mom.

Months passed. Slowly, Lorraine lost her love of cooking. Some visits Marjorie found her sitting, staring blankly out a window. She stopped answering the phone.

Soon, the first of many increasingly strange behaviors appeared, Marjorie said. Her mom started misplacing things. Not random things. It was the same items, and she'd put them in the same places, but she couldn't remember where.

Like her eyeglasses. Lorraine would put them in the kitchen cupboard, not the nightstand. Every time she complained she couldn't find them, Marjorie would open the cabinet door, and there they were, always in the same spot.

“I found that very odd,” she said.

ALZHEIMER'S 101

Alzheimer's disease is a progressive and fatal brain disorder that destroys brain cells, causing problems with memory, thinking and behavior severe enough to affect work, lifelong hobbies or social life. 

As of 2007, an estimated 5 million Americans have Alzheimer's disease. 

Roughly 2 percent, 300,000 people, are between 65 and 74 years old; 19 percent, 2.4 million people, are between 75 and 84 years old; and 42 percent, 2.2 million people, are 85 or older.

By 2050, the number of individuals age 65 and over with Alzheimer's could range from 11 million to 16 million, and more than 60 percent of people with Alzheimer's disease will be age 85 and older.

Among Medicare beneficiaries age 65 and older, 95 percent with Alzheimer's and other dementias have at least one other chronic health condition.

Source: Alzheimer's Association

THE TOWN MEETING ON ALZHEIMER'S

Through Feb. 15, the Courier Times will collect your questions on Alzheimer's disease and dementia and relay them to the Alzheimer's Association, which will research answers and present them at the town meeting set for Feb. 28. The meeting takes place from 7 p.m. to 8:30 p.m. in the main auditorium at St. Mary Medical Center.

Questions can be sent via e-mail to pwalker@phillyburbs.com or in writing to the Alzheimer's Town Meeting C/O The Bucks County Courier Times, 8400 Route 13, Levittown, 19057 or by calling 215-949-4046 and recording your question.

Next week: The moderate stage of dementia. Lorraine Jackson experiences two life-changing events that lead to increasingly unusual behaviors that force her daughter, Marjorie, to take action.

By JO CIAVAGLIA
Bucks County Courier Times

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com.