Wednesday, September 27, 2000

Options growing for Alzheimer's patients, their families

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Specialized services expand with increasing need

By Peggy O'Farrell
The Cincinnati Enquirer

        Elise Lockhart's eyes follow the pendulum swinging on the wall clock. She notices when her radio plays jazz. But when she talks, the words don't make sense.

        A series of strokes that started in 1998 has left her bedridden. She can't bathe herself. She is fed through a tube vigilantly tended by her son and daughter-in-law.

        It wasn't always like this. When Mrs. Lockhart came to live with her son and daughter-in-law eight years ago, she attended church, met her friends and took trips.

        Alzheimer's disease stole her independence.

Ollen Colbert and his wife Shirley care for his mother, Elis Lockhart, with help from hospice nurses. (Michael E. Keating photo) | ZOOM |

        Ollen and Shirley Colbert have joined a mushrooming force of caretakers who look after the 4 million Americans living with Alzheimer's. One in 10 Americans 65 or older has the disease and half the people 85 and older have it. In the next 50 years, the number of patients is expected to more than triple.

        More and more long-term care facilities are developing specialized units to care for Alzheimer's and dementia patients, says Anne Von Hoene, coordinator of the Helpline and Safe Return programs for the Greater Cincinnati Alzheimer's Association.

        “I think people are realizing that (Alzheimer's patients) require a different type of care,” Ms. Von Hoene says.

        Hamilton County alone has “35 or 40” such facilities, she says. According to statistics from the Health Care Finance Administration, the number of specialized nursing home beds for Alzheimer's patients has grown an average of 17 percent a year from 1993 to 1996, or from 43,710 to 87,041 nationally.

        When Ronald and Nancy Reagan announced the former president's struggles with Alzheimer's a few years ago, public attention focused on the debilitating disease. Researchers are speeding up efforts to find effective treatments and possibly a cure for Alzheimer's because, left unchecked, it could reach epidemic proportions as the baby boom generation reaches and passes retirement age.

        There is good news: Caregivers and patients have a wider-than-ever array of options as the disease progresses. Home health care, specialized residential facilities, hospice and respite care are all available to help patients preserve their abilities for as long as possible and give caregivers needed relief from the strain of caring for a dependent 24 hours a day.

        Among the resources:

        • Seminars outline challenges, identify options.

        • Support groups put caregivers and patients in touch with each other.

        • Adult day care services allow patients to live with working caregivers.

        • Home health nursing and hospice services provide regular professional check-ups at home.

        • Respite care gives caregivers a temporary break.

        • And the Tristate has a growing number of long-term care facilities for Alzheimer's patients.
       

Finding a home

Carlene Smith visits Walter Cinnamon at Alden Courts. (Brandi Stafford photo) | ZOOM |

        When Walter Cinnamon complained that he couldn't persuade his wife to get out of the car on New Year's Eve, Tom and Carlene Smith knew he couldn't live alone anymore. His wife had died the previous summer.

        The Smiths wrestled with guilt and finances in their search for a place that would keep the 83-year-old safe while allowing him a measure of independence.

        Mr. Cinnamon had already granted Mr. Smith, his step-son, power of attorney. He didn't protest when the Smiths suggested he needed to move into a home.

        But finding the right home wasn't easy. One facility didn't have the right kind of physical therapy. Another asked him to leave after he wandered away.

THE IMPACT

• The economic impact of Alzheimer's is estimated at $100 billion in the United States.     • 4 million Americans now have Alzheimer's disease, but that number could increase to 14 million by 2050 if a cure or preventive measure isn't found. Worldwide, 22 million people could have Alzheimer's by 2025.     • One in 10 people age 65 have Alzheimer's, but the prevalence of the disease increases with age. Half of all people 85 and over have the disease. And as the world's elderly population increases — baby boomers are fast approaching their golden years — Alzheimer's is expected to reach epidemic and expensive proportions.

DEALING WITH IT

The key to coping with Alzheimer's disease is to begin planning for it as soon as it is diagnosed, experts say. This is what they recommend patients and families consider:     • Investigate what facilities are available and what kind of care each offers. Alzheimer's is progressive. Higher levels of care will become necessary as the disease advances, and not every facility offers every level of care.     • Identify community resources. Identify specialized medical care, respite care services, adult day care, clinical trials for new medications, support groups for patients and their families and educational programming from organizers like the Alzheimer's Association.     • Resolve legal issues. The patient needs to make a will and grant a power of attorney to a responsible relative or friend who can be trusted with financial and health-care decisions.     • Finances. Find out what services Medicare, Medicaid and private insurance will and won't cover.     • Work. Patients should speak to their employers about changing job duties or cutting back hours. A potential caregiver needs to find out what changes can be made to his or her schedule to accommodate the patient.

ABOUT ALZHEIMER'S

Alzheimer's disease is a fatal degenerative brain disease that results in dementia, or the loss of cognitive ability.     As the disease progresses, proteins build up in the the brain and structures (called neurofibrillary tangles) and plaques form. These tangles and plaques destroy connections between neurons, which in turn disrupts the brain's ability to process information and memory. Eventually, the disruption destroys the ability to control body functions.     As individuals age, their risk for developing Alzheimer's increases.     Alzheimer's is the most common cause of dementia. Other causes of dementia include thyroid disease, depression, drug side effects, Parkinson's disease, Pick's disease, stroke, encephalitis and meningitis.

WARNING SIGNS

• Memory loss that affects job skills.     • Difficulty performing familiar tasks.     • Problems with language, either forgetting familiar words or substituting incorrect or inappropriate words.     • Disorientation to time and place.     • Poor or decreased judgment.     • Problems with abstract thinking, such as balancing a checkbook or planning out a task.     • Misplacing things.     • Mood swings or erratic behavior.     • Dramatic personality changes.     • Loss of initiative or disinterest in normal activities.

        When Arden Courts — one of the new breed of long-term care facilities specializing in Alzheimer's care — opened, he moved in.

        The Alois Alzheimer Center in Greenhills, which opened in 1986, was the first residential care facility that focused solely on the special needs of Alzheimer's patients.

        Caring for Alzheimer's patients like Walter Cinnamon and Elise Lockhart isn't like caring for those with other long-term ailments, says Marlene Mahn. associate director for residential planning for the national Alzheimer's Association in Chicago. The general progression of the disease — gradual loss of short-term memory leading to loss of intellectual capability and, eventually, death — is always the same. But no two people follow the same path. Some patients live 20 years with the disease. Others fall quickly.

        “So many families are looking for resources in a moment of crisis,” Ms. Mahn says. But families who start researching their options as soon as possible save themselves a lot of anguish.

        Health care practitioners see this scenario often: A caregiver is hospitalized because of the physical and emotional stress. The rest of the family scrambles to find a facility suitable for the patient. The patient becomes unnerved. Long-term decisions are made in haste.

        “We see it all the time,” says Susan Gilster, executive director of the Alois Alzheimer Center.

        The Smiths' challenge of finding the right level of care is just the sort of issue families need to expect, says Ms. Gilster. Not all facilities can handle patients at all stages of Alzheimer's or other forms of dementia, she says, and patients may need to move to new homes as their condition deteriorates.

        Some facilities won't handle patients who become incontinent. Others will require Alzheimer's patients who begin wandering or who become aggressive — both common behaviors — to leave.
       

Memory cues

        During a recent visit, Mr. Cinnamon watches videos of the pastor at his hometown church in Middleboro, Ky.

        “I've known this fellow since 1944,” he says. “I was working with him. He was the manager at the Kroger store when he got saved.”

        Mr. Smith is planning a road trip to Middleboro with him in November.

        Twice a week, a van comes to take Mr. Smith to the Norwood church he has attended for years. On Wednesday nights, the van stops at Frisch's after church and Mr. Cinnamon gets his usual: a Big Boy, french fries and coffee.

        In his room, he shows off a collection of mementos: A Kentucky state road map that features a photo of the bridge leading into Middleboro, a photo of a buffalo that almost charged as he was focusing the camera during a trip out west, tiny models of cars like the ones he helped make when he worked at the GM plant in Norwood. And he has photos of his two late wives.

        He won't marry a third.

        “I had two good ones, but I might get a lemon,” he says laughing.

        The photos prompt memories — in more ways than one, says Lisa J. Hines, the director at Arden Courts.

        A patient with memory impairment might not remember the number of the room he or she lives in, but familiar photos let them know they've reached the right door. Decorating “wings” of a facility like Arden Courts in similar themes — flowers or sailboats or barnyard animals — helps residents know they're heading in the right direction. Recorded music at mealtime reminds residents it's time to eat.

        Alzheimer's caregivers follow a rule: Work with what you've got. Dementia is tricky. A woman might not remember how to follow a recipe but she can still stir a bowl of cake batter. A man might not be able to build a wooden birdhouse, but he can sand or paint it. Every action helps preserve the patient's memory and ability.

        Families like the Smiths and the Colberts are like millions of others who have to decide which options are the best for their loved ones. For some families, the right answer might be taking advantage of a combination of options: Home health or hospice nursing to help out during the day, respite care to allow for a weekend or longer out of town, and residential care when the patient's needs become too great to be met at home.

        Arden Courts, one in Kenwoood and another opening Thursday in Anderson Township, are among the Tristate's newest Alzheimer's facilities. Resources have grown rapidly in recent years because there are more older people, says Ms. Von Hoene. Nationally, about 1.5 million Americans lived in nursing homes in 1997, and the Alzheimer's Association estimates half of them have the disease.

        But not every facility with a dementia unit offers the right care for every situation, says Mary Whittle, manager of the ombudsman for Pro Seniors Inc., which serves senior citizens in Hamilton, Warren, Clermont, Clinton and Butler counties. There are no federal or state guidelines labeling something “Alzheimer's”; so families have to ask what services, training and special programming are tailored for Alzheimer's patients. Statistics about the number of specialized beds are misleading: Not every Alzheimer's patient is in a specialized facility.

        Ms. Gilster says that people with Alzheimer's are still people: A diagnosis today doesn't mean dementia tomorrow.

        “Who says people with dementia still don't enjoy the conservatory or a Reds baseball game or going out to lunch or going to the mall? All those things should still be available to them until they show you in their own way that they can't handle it anymore,” she says.
       

"The longest goodbye'

        Three days a week, a home health nurse comes to see Elise Lockhart. The nurse takes a look at the suctioning machine that clears fluids from the lungs. She tends to the feeding tube and bathes Mrs. Lockhart.

        Twice a week, a hospice nurse visits and does the same thing. She also checks Mrs. Lockhart's blood pressure and talks to the Colberts to see if there's anything they need.

        Every day, the routine in the Laurel Homes apartment is the same. They talk about children. (Four of five kids live nearby and pitch in whenever they're needed.) They talk to Mrs. Lockhart while brushing her hair, feeding her, changing her clothes and tuning the radio in her room to jazz.

        The Colberts have been tenants in the low-income Laurel Homes housing development for years. Mrs. Colbert is well-known for her activism on the behalf of the residents of the complex.

        But life has taken a turn. Thankfully for the Colberts, new services like the hospice nurse program help.

        The Colberts understand some families can't manage keeping a loved one at home as Alzheimer's progresses, but they wanted to do it.

        “My father had 26 children,” Mrs. Colbert says. “I was raised where you took care of family members. However poor you were, you all pulled together.”

        Mrs. Lockhart can't speak much with her visitors, but it's apparent she's happy.

        “She can give you a smile, and you know she understands,” Mr. Colbert says.

Options growing for Alzheimer's patients, their families
Researchers making progress

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