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Caring for Those with Alzheimer's
Three caregivers discuss the special requirements of those afflicted with this cruel malady
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Business New Haven
3/3/2003
By: Anne-Marie Brungard
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Alzheimer's disease is a progressive, degenerative disease of the brain, and the most common form of dementia. Approximately four million Americans are afflicted with this complex disease, for which there is no known cure. Helping patients and families manage the intricate series of issues related to the disease, ranging from memory loss to agitation and from disorientation to depression, are scores of health care professionals providing many levels of care.
At a time when nurses are scarce and can afford to be relatively picky regarding assignments, the question becomes what motivates these professionals to enter this challenging area of health care? BNH speaks with three nurses for whom Alzheimer's disease is a daily dance straddling perception and reality.
Dianne Davis, RN, MSN
Case Manager, Dorothy Adler Geriatric Assessment Center at Yale-New Haven Hospital, New Haven
A Chicago native, Davis always knew she wanted to be a nurse. After graduating from Michigan State University, she went straight to work as an inpatient psychiatric nurse. Her experience working with those facing psychological and cognitive challenges encouraged her to continue her education studying the psychiatric aspects of physical illness at the Yale School of Nursing. After completing her master's degree, Davis spent the next 14 years as a liaison nurse, provided consultative services and even teaching at her nursing school alma mater.
More than 70 percent of Alzheimer patients live at home, while friends and family members provide a significant amount of care. The Adler Geriatric Center is a source of consultative care for the frail and elderly, serving as consultants to the primary-care physician. Davis is in her 15th year as a member of the case management team.
"This is a nice fit for my psychiatric nursing skills," says Davis. Working in tandem with a clinical team comprising geriatric physicians, psychiatrists, physical therapists and neuropsychologists, the case managers provide critical assessment services that assists the family in developing care plans that may include coordinating community services, education and support.
As the disease progresses, care issues become increasingly critical and families need support in this difficult decision-making process. "Sometimes we are helping families figure out whether home care or adult day services are appropriate," says Davis. "There may be medication or behavior modification questions."
The goal is to maximize function. Davis supports the family as they do the work at home, providing telephone support, information and referrals.
"I am always struck by how much families want to provide care at home for as long as they can, and I am equally challenged to be able to find creative ways to support their efforts," Davis explains.
But her commitment to helping those afflicted with this disease and its impact on the patient doesn't end at work. Davis is an active volunteer with the local chapter of the Alzheimer's Association, chairing the annual Memory Walk and serving on a number of committees. In her role as a volunteer she also employs her skills as a case manager, connecting families to support groups and educational programs.
Brenda Sherwood, LPN
Special Care Center Manager, Brighton Gardens, Woodbridge
As Alzheimer's symptoms progress, there are significant behavioral issues that may include not only memory loss, but agitation, anxiety and wandering. When home care becomes too challenging and home can no longer be considered a safe or appropriate environment, family members are widening their circle of choices for services, increasingly turning to assisted-living facilities for the next level of care.
Brenda Sherwood heads up the Alzheimer's/dementia unit at Brighton Gardens and its 20 residents, for just over a year managing staff functions, scheduling and occasionally providing direct care on the floor.
Sherwood mapped out her nursing career before high school. "I knew that I wanted to be a nurse," she said, "I had six brothers and at that time college wasn't an option." She chose the technical school route, attending Henry Abbott Tech in Danbury, which is affiliated with Danbury Hospital.
Sherwood's nursing career spans almost two decades and includes working at Danbury Hospital on the rehabilitation floor, caring for traumatic brain injury and stroke patients, a general practitioner's office and a continuing care retirement community.
Brighton Gardens is like a home away from home, observes Sherwood. Preserving and restoring dignity among its residents, the facility is home for the residents and a basic level of care is provided on-site, at the point of need. The services are customized to meet the individual needs of the resident.
Sherwood appreciates that in this setting nursing is on a slightly different level. "It is nursing where you can give little bit of yourself," she says. "It doesn't take a lot to make someone smile." It is this aspect that she finds most rewarding, the handholding or a gentle hug and seeing the residents' positive reaction.
The secure locked environment of the special-care center does not detract from the residents' independence, Sherwood says, but adds a level of comfort for family members and safety for residents.
"We are very much like an extension of the family," Sherwood says. In this setting nurses directly assist with medication management, activities of daily living, social interaction and behavior management. Residents are encouraged to participate in family-style meals and explore the courtyard-like garden; participating in activities at a level that they can manage. The nursing style is not just about managing physical symptoms, but about touching the emotions.
Lynn Fuschino, LPN
Nurse, Brighton Gardens, Woodbridge
Fuschino, a graduate of Vinal Technical School, followed a relatively circuitous route into the nursing field. A believer that people with developmental and emotional disabilities needed an advocate, she began her career with the state's Department of Mental Retardation and worked in several group homes in the New Haven area.
Currently working to complete her RN degree requirements at Middlesex Community College, Fuschino has spent the last five years as a nurse in assisted living communities. Her time spent in a skilled nursing facility encouraged her to find a setting where she felt she could give more time to patients.
Fuschino has found her niche in the assisted living community. "Here we are afforded the extra time with the residents," Fuschino says. "We know the disease is degenerative and we deal with how we can make the residents' lives better."
Fuschino find the challenges ultimately rewarding as she works to individualize the care that each patient needs, while getting to know their backgrounds and interests. She is intrigued by connecting on a level that engages the resident, finding out what activities in the past interested them, and using those tools to draw them away from isolation.
"It's a good feeling when a resident recognizes and chooses you," she said, "and it is rewarding when my interactions reveal some medical issue that can be addressed before it becomes a major issue."
Brighton Gardens provides support services that encourage family and social interaction. Special friends and family nights, guest speakers, art projects, outings and more are combined with the home-like atmosphere, which include using real dishes and silverware.
For some residents there comes a time when additional care is necessary and the next level of care becomes essential. The relationships developed with family members and the educational support services provided by the facility support the decisions that are made at this stage of the disease. For some residents private-duty care can be obtained to enhance on-site services, for others choosing a nursing home or other services may be necessary.
For Fuschino, who admits being a little protective of her patients, the right mix of care, patience, and love are what she prescribes on a daily basis.
Alzheimer's By the Numbers
As many as 19 million Americans say they have a family member with the disease, and 37 million said they knew someone with Alzheimer's.
An estimated 14 million Americans will have Alzheimer's disease by the middle of this century (2050) unless a cure or prevention is found.
One in ten persons over age 65 and nearly half of those over 85 have Alzheimer's disease. A small percentage of people as young as their 30s and 40s get the disease.
U.S. society spends at least $100 billion a year on Alzheimer's care. Neither Medicare nor most private health insurance covers the long-term care most patients require.
Alzheimer's disease costs American businesses $61 billion a year - $36.5 billion is the cost to business of caregiving (lost productivity from absenteeism of employees who care for family members with Alzheimer's); the rest is the business share of the costs of health and long-term care.
More than seven of ten people with Alzheimer's disease live at home. Family and friends provide almost 75 percent of the home care. The remainder is "paid" care costing an average of $12,500 per year. Families pay almost all of that out of pocket.
Half of all nursing-home residents suffer from Alzheimer's or a related disorder.
Source: The Alzheimer's Association
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