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Perplexing and confounding, this insidious neurodegenerative disorder steals the mind and breaks the heart. What are nursing's responsibilities in caring for affected patients and families?
Alzheimer's disease is a slowly progressive, neurodegenerative disorder leading to impairments in multiple cognitive domains. It affects patients' functional abilities and all aspects of their relational, social, and occupational life.
The Alzheimer's Association just released several staggering statistics: 5.1 million people with Alzheimer's disease are living in the United States. This number includes 4.9 million people over the age of 65, and between 200,000 and 500,000 people under the age of 65 with early-onset Alzheimer's disease and other dementia disorders. Alzheimer's disease is now the seventh leading cause of death in the country and the fifth leading cause of death for those over age 65.1 Although the disease knows no socioeconomic or gender boundaries, age is the greatest risk factor across all ethnic groups. With 78 million baby boomers beginning to turn 60, in the very near future we'll face some frightening trends.
By 2050, if there's no cure, approximately 16 million people will be affected in this country, and as the prevalence of the disease grows, so does the cost to the nation: direct and indirect costs of Alzheimer's disease and other dementia disorders amount to more than $148 billion annually.1 Even with potential disease modification drugs in the pipeline, when and if these drugs become available, many individuals will already be affected and it will be too late to change the course of the caregiving experience.
A person can live with Alzheimer's disease from 3 to 20 years, but the average life span is about 8 to 10 years. The disease course is unpredictable, and each person experiences the disease differently. Short-term memory loss and attention deficits cause frequent repetitive verbalizations, inability to store and learn new information, and inability to start and stay on task to take any activity to completion.
Language impairments affect a person's ability to communicate needs or desires. Judgment is affected, and the person makes poor decisions or no decisions and lacks insight as to how his or her cognitive deficits affect his or her functional ability, thus posing safety risks to self and others. As a consequence, behavioral symptoms occur and the person may be more difficult to manage at home. There may be catastrophic reactions when an individual can't process surroundings, complete a simple task on command, or understand what's being communicated. Psychomotor agitation, including wandering and pacing, often exhaust both the affected person and the care partner who must monitor the safety needs of the affected person.
Visuospatial deficits cause disorientation to space and time, whereas perceptual distortions such as hallucinations and delusional thought disorders are disturbing and uncomfortable symptoms of biochemical deficits due to neuronal disruption and neuronal death. For the affected individual, neuropsychiatric symptoms and depressive episodes often go unrecognized and undertreated, thus affecting quality of life.2,3
As the patient descends into the disease, he or she can't translate a thought into a motor action and is unable to attend to activities of daily living (ADLs) such as toileting or grooming, thus full-time supervision and care are required. For some family members and care partners, this supervision becomes overwhelming and exhausting, and the difficult decision is made to transition the affected person into a nursing home or dementia unit. This is considered by many to be the saddest of times because of the loss in caregiving responsibilities and the guilt associated with the transfer of care out of the home.
Regardless of setting, the person eventually can't walk or hold upright, and becomes bed bound, bowel and bladder incontinent, mute, forgets how to swallow, and loses recognition of family, friends, and relationships. The person dies of an infection or aspiration pneumonia brought on by the ravages of Alzheimer's disease.4
Family caregivers, spouses, and adult children experience unwelcome role changes, isolation, depression, loss of intimacy and reciprocity in relationships.5 The older adult caring for a frail older spouse, especially after intense and protracted caregiving, often experiences healthcare issues of their own and will sometimes sacrifice self to the caregiving role.6-8
During this prolonged caregiving experience, more than 7 of 10 Alzheimer's patients continue to live at home, where family and friends provide almost 75% of their care, sometimes with educational support from the Alzheimer's Association chapter network. As one moves through the illness, the family accesses occasional respite care. For the most part, the financial brunt of this care is borne by the family.1 If care partners seek relief from responsibilities, they look to community-based services such as adult day programs, home health and companion services, or if qualified, may consider enrolling in waiver programs that encourage home-based care versus nursing home placement.
It's not until later in the disease course that the affected person is vulnerable to falls and infections, or has an acute or chronic medical condition that can cause frequent hospitalizations. There may be unrecognized delirium due to infection, polypharmacy, dehydration, bowel impaction, unidentified fractures, or neuropsychiatric symptoms.9
It's well documented that approximately one-fourth or more of older hospitalized patients have dementia.10 These individuals use the acute care system not always because of the dementia but because they're being treated for other medical conditions such as coronary artery disease, congestive heart failure, diabetes, and chronic obstructive pulmonary disease-not to mention those individuals entering an acute care system who are undiagnosed or without a dementia diagnosis noted in their clinical record.10,11 Some researchers suggest that dementia should be considered a possibility in every hospitalized person age 75 and older.11
The acute care system is structured to care for the cognitively intact and yet, as previously stated, a significant number of acutely ill, demented individuals are being seen in acute care settings. Ironically, when at home these same individuals need constant cueing supervision and assistance to complete ADLs, and yet when entering an acute care system, they're thrust into a frightening and unfamiliar environment where people make constant demands that they can neither understand nor respond to in a rational way.
As a result, affected individuals are more at risk for developing a delirium superimposed on the acute illness and dementia. Research tells us that with a superimposed delirium we can expect affected individuals will be far more disabled on discharge than prior to their hospital admission.12,13
All of these experiences have implications for nursing because nurses will be the case managers in community-based home care and Medicare/waiver programs, or working in emergency departments, medical-surgical units, orthopedic units, or operating room suites. Nurses are at the bedside in nursing homes where over 40% of individuals have a diagnosis of a dementing illness and 70% have some form of cognitive impairment.1 Whatever the clinical setting, it's imperative that nurses use best-practice guidelines in the care of individuals with dementia, old and young alike. This practice is difficult because those guidelines may not be fully developed, available, or accessible to nurses and other clinicians.
Also, many novice nurses have had limited exposure in their nursing curriculum to fully understand the consequences of the disease and the clinical manifestations. If one isn't familiar with the dementing disorders and associated cognitive losses and the concomitant symptoms that arise from these deficits, there may be misinterpretation of behaviors resulting in labeling of the patient as resistant, noncompliant, hostile, and violent.
How do we advocate on behalf of those who enter into our healthcare settings? How can we ensure the very best care for affected individuals who are hospitalized because of an acute medical condition? How do we use evidence-based practice, if such practices are available, to ensure safe, supportive care with assurances for the most positive outcomes for our frail dementing hospitalized patients of advancing age or when we're at the bedside in nursing home settings? How do we model good care and see that it's implemented agency- or facility-wide?
Some of the promising approaches emerging today are models and protocols for care researched and developed by nurses. An example of an innovative and all-inclusive nursing model is Nurses Improving Care for Health System Elders-known as NICHE. This national program of the John A. Hartford Institute for Geriatric Nursing at New York University is a nursing-driven model intended to provide nurses with tools and expertise to develop excellence in practice for older patients (not just those who are dementing). The original three NICHE practice models were the Geriatric Resource Nurse Model, Acute Care of the Elderly Nursing Unit, and the Syndrome-Specific Model. An additional program designed to meet the needs of older adults is the Comprehensive Discharge Planning Model. Today NICHE is operational in part or in its entirety in approximately 256 hospital sites nationally, and the number of sites continues to rise.14-16
Another innovative and effective tool developed by the John A. Hartford Institute for Geriatric Nursing at New York University (Hartford Institute) in collaboration with the Alzheimer's Association, New York City chapter, is a series of brief informational sheets for nurses called the Try This: Best Practices in Nursing Care to Older Adults. The series provides easily accessible, comprehensive, and concise information for the direct care nurse on the best practices in the care of the older adults. Each issue contains assessment tools and addresses topics such as pain, wandering, and avoiding restraints.14,15
Other nursing interventions used in community-based and nursing home settings are based on the work of several skilled nursing clinicians and scholars. Examples include the work of Joanne Rader-a clinical nurse specialist who has taught us that bathing the person with dementia doesn't have to be a frightening experience for the affected person or a harrowing task for the care partner. Her innovative care techniques can be used in the home, nursing home, or acute care setting.17,18 Also, the progressively lowered stress threshold model can be used as a framework for assessing possible causes of behavioral symptoms and determining appropriate interventions for preventing or redirecting those potentially catastrophic events for the affected individual.19 This model has applications in all settings because it highlights the importance of the external environment on a person's stress threshold. If family or staff can identify the anxious behaviors, they can take action to decrease the environmental stressors, thus avoiding escalation to unmanageable behavioral symptoms.
Some nonnursing models used in long-term care facilities emphasize person-centered care (PCC) approaches, with the focus on the resident as the center of the care process.20 The PCC approach can be adapted to any setting, whether the nurse is at the bedside or developing PCC curricula to use in staff education for a multidisciplinary team in all practice settings. An observational tool called dementia care mapping (DCM) is both an instrument for developing PCC and a tool in quality-of-life research.21 DCM's advantages are that it's standardized, quality controlled, international, responsive to change, and multidisciplinary in focus. Research has shown that DCM has a role in practice development and research, with the broad aim of improving the living experience for people with dementia. However, further research is needed to study fully the impact of DCM in improving the quality of life through practice development.22
In 2006, the Alzheimer's Association released Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes. These recommendations are based on the latest evidence in dementia care research and the experience of care experts.23 The Alzheimer's Association introduced two phases of the Dementia Care Practice Recommendations. In phase 1, the priority areas are Food and Fluid Consumption, Pain Management, and Social Engagement and in phase 2, priority areas include Resident Wandering, Resident Falls, and Physical Restraint-Free Care. In 2007, phase 3 End-of-Life Care Recommendations are highlighted.24-26
Dementia Care Practice Recommendations provide the framework for the Alzheimer's Association Campaign for Quality Residential Care, Foundations of Dementia Care, with topic-specific learning modules developed for the professional and paraprofessional working in a long-term care environment. The modules cover subjects such as Leadership, Dementia Basics, Nutrition, Pain, and Making Connections.
The dementing disorders are confounding and complex medical conditions that impose inordinate stress on affected individuals and care providers. It's a myth that dementing disorders can be dealt with solely in the psychosocial realm. If one is dealing with an older or younger adult who has a disorder that compromises physical and emotional safety, then one is also dealing not only with the dementing process, but with all of the coexisting medical and behavioral issues that arise from that process.
Who best to deal with this complex set of disorders than nurses? In the end we must look to our care and experience. Nurses are best prepared to deal with difficult caregiving situations because of their knowledge base in pathophysiological processes leading to disease and symptom presentation. They understand the phenomenon of chronic illness and how prolonged intense caregiving affects family systems but most importantly, nurses are consummate communicators, detectives, and collaborators. They listen, investigate, problem solve, advocate, and with the family and affected individual, see themselves as a part of the interdisciplinary team. Nurses find solutions when often there are no solutions to be found. When all is said and done, it's the nurse who cares for and supports the person and family to the very end.
1. Alzheimer's Association. 2008 Alzheimer's Disease Facts and Figures. Available at: http://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf. Accessed February 20, 2008. [Context Link]
2. Dorenlot P, Harboun M, Bige V, et al. Major depression as a risk factor for early institutionalization of dementia patients living in the community. Int J Geriatr Psychiatry. 2005;20(5):471-478. [Context Link]
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7. Schulz R, Beach S. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. J Am Med Assoc. 1999;282(23):2215-2219. [Context Link]
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9. Maslow K. Dementia and serious coexisting medical conditions: a double whammy. Nurs Clin North Am. 2004;39(3):561-579. [Context Link]
10. Maslow K. How many people with dementia are hospitalized? In: Silverstein N, Maslow K, eds. Improving Hospital Care for Persons with Dementia. New York, NY: Springer Publishing; 2006:3-21. [Context Link]
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14. The John A. Hartford Foundation Institute for Geriatric Nursing. New York University College of Nursing. Available at: http://www.hartfordign.org/. Accessed February 20, 2008. [Context Link]
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20. Kitwood T. Dementia Reconsidered: The Person Comes First. Buckingham, UK: Open University Press; 1997. [Context Link]
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22. Brooker D. Dementia care mapping: a review of the research literature. Gerontologist. 2005;45 spec no. 1(1):11-18. [Context Link]
23. Zimmerman S, Sloane P, Heck E, et al. Introduction: dementia care and the quality of life in assisted living and nursing homes. Gerontologist. 2005;45 spec no. 1(1):5-7. [Context Link]
24. Alzheimer's Association. Chapter information. Available at: http://www.alz.org. Accessed February 20, 2008. [Context Link]
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