ALZHEIMER'S ASSOCIATION.As a Millennium Ends, Alzheimer Care Begins A disease is a progressive degenerative disease A degenerative disease is a disease in which the function or structure of the affected tissues or organs will progressively deteriorate over time, whether due to normal bodily wear or lifestyle choices such as exercise or eating habits. of the brain, and the most common form of dementia affecting more than four million Americans today. Unless a cure or prevention is found soon, that number will jump to 14 million by the year 2050. As 1999 draws to a close, a little reflection on the past and future of Alzheimer care is needed. In the Beginning Dr. Alois Alzheimer Aloysius "Alois" Alzheimer (born 14 June 1864, Marktbreit, Bavaria; died 19 December 1915, Breslau, Silesia) was a German psychiatrist and neuropathologist and a colleague of Emil Kraepelin. officially documented Alzheimer's disease Alzheimer's disease (ăls`hī'mərz, ôls–), degenerative disease of nerve cells in the cerebral cortex that leads to atrophy of the brain and senile dementia. in 1906, but it wasn't until the early 1980s that aggressive research was conducted to verify that "senility senility (sənil`ətē), deterioration of body and mind associated with old age. Indications of old age vary in the time of their appearance. " was actually a disease and not part of normal aging. Precious little is known about where individuals with Alzheimer's disease were living from the early 1900s to the 1 970s. It can be safely concluded, however, that those who did not live with family members lived in psychiatric institutions, state mental hospitals and nursing homes. Their diagnoses were likely to be "senility," "organic brain syndrome organic brain syndrome n. Abbr. OBS Any of a group of acute or chronic syndromes involving temporary or permanent impairment of brain function caused by trauma, infection, toxin, tumor, or tissue sclerosis, and causing mild-to-severe " or "mental illness Since care providers did not understand Alzheimer's disease, common behaviors associated with this disease, such as agitation agitation /ag·i·ta·tion/ (aj?i-ta´shun) excessive, purposeless cognitive and motor activity or restlessness, usually associated with a state of tension or anxiety. Called also psychomotor a. , wandering and repetitive actions, were misunderstood. A major focus of care during this period was keeping these individuals calm and out of danger. Therefore, chemical and physical restraints Physical restraint refers to the practice of rendering people helpless or keeping them in captivity by means such as handcuffs, shackles, straitjackets, ropes, straps, or other forms of physical restraint. were utilized. The community mental health movement in the 1960s and 1970s led to the deinstitutionalization de·in·sti·tu·tion·al·i·za·tion n. The release of institutionalized people, especially mental health patients, from an institution for placement and care in the community. of state mental hospitals and an increase in admissions to nursing homes and other related care facilities. Individuals with Alzheimer's disease now became major nursing home customers. Today, nearly half of all nursing home residents suffer from Alzheimer's disease or a related disorder. Trial and Error Alzheimer care has been evolving over the past 25 years as a result of caregiver trial and error. Because little information was documented about providing care for individuals with Alzheimer's disease, approaches to care in facilities were based on instinct and best guesses. Eventually, research was conducted that supported many caregiver observations and instincts. Today, approaches to dementia care continue to vary greatly throughout the industry with regard to: * philosophy * staffing qualifications, training and ratios * activity programming * approaches to care * physical design * admission and discharge policies and procedures Policies and Procedures are a set of documents that describe an organization's policies for operation and the procedures necessary to fulfill the policies. They are often initiated because of some external requirement, such as environmental compliance or other governmental * number and profile of residents * facility design (integrated, special unit within facility or free-standing, dementia-specific programs) * costs, charges and payment methods Special Care Units By the 1970s and 1980s, providers and families of residents with Alzheimer's disease realized that this disease presented special needs. This realization led to the first special care units for individuals with dementia in this country. According to according to prep. 1. As stated or indicated by; on the authority of: according to historians. 2. In keeping with: according to instructions. 3. the "Medical Expenditure Panel Survey on Nursing Home Trends, 1987 and 1996," produced by the Agency for Health Care Policy and Research (AHCPR AHCPR, n.pr See Agency for Healthcare Research and Quality. ), 12.6% of nursing homes in 1996 had Alzheimer special care units; 55.6% of these units had been in operation for 5 years or less. Many concerns about the quality and appropriateness of care in special care units have been raised, with many wondering what is special about these units? Complaints frequently focus on the: * lack of staff knowledge about Alzheimer's disease and how it impacts behaviors, including the attitude that "nothing can be done to help residents with dementia" and the overuse overuse Health care The common use of a particular intervention even when the benefits of the intervention don't justify the potential harm or cost–eg, prescribing antibiotics for a probable viral URI. Cf Misuse, Underuse. and inappropriate use of physical and chemical restraints. * inappropriate physical aspects of nursing homes and units, including a lack of cues to help residents find their way and a lack of appropriate wandering spaces. * skepticism that this care is all that special. Is it a clever marketing tactic, or perhaps a way to get difficult residents out of the way? Despite the growth in special care units, most people with dementia are still cared for in the general nursing home population. To date, research on which setting is better for individuals with dementia is unclear. Further research is needed in this area. Exciting Industry Developments While Alzheimer care is still a work in progress, there is much to celebrate. Since the late 1980s the use of physical and chemical restraints has been significantly reduced. The special needs of individuals with dementia are acknowledged more each day. Staff training is more available and accessible from organizations such as the Alzheimer's Association The Alzheimer's Association, incorportated on April 10, 1980 as the Alzheimer’s Disease and Related Disorders Association, Inc., is a non-profit American voluntary health organization which focuses on care, support and research for Alzheimer's disease. . Also, there is a better understanding among providers about the impact of the physical environment on dementia residents' ability to function. Because of the continued increase in awareness of Alzheimer's disease, diagnostic capabilities and advancements in treatment options, individuals with dementia can be more involved in planning their future. They and their families will have more time to address legal, financial and caregiving issues. Involvement of the diagnosed individual will increase our ability to assess and measure the quality of care provided and strategies to improve the quality of life. A note to providers as well as families: Obtaining permission from early stage individuals to participate in studies will add tremendously to our knowledge. One of the most exciting achievements of recent years has been a change in attitude about what we can do for individuals with Alzheimer's disease. The perception of Alzheimer care has evolved from one of hopelessness to one of hope as a result of: * scientific discoveries * advancements in drug treatments * increased awareness of moments of pleasure spent with someone with dementia * increased support and assistance from others This hopeful attitude will continue :o fuel the evolution of quality Alzheimer care. Key Challenges for the Millennium The biggest challenges facing providers of Alzheimer care will be staffing issues and responding to the needs of a larger population with diverse needs and earlier diagnoses. Staffing issues are going to heavily impact the quality of Alzheimer care. First, there is training. Staff members are not receiving the level of training they need to best understand Alzheimer's disease and provide quality care. Because of a growing shortage of quality direct care workers (aides, certified nursing assistants  This article or section may deal primarily with the U.S. and may not present a worldwide view. , personal care attendants), accessibility to quality Alzheimer care is injeopardy. Many direct care workers cannot remain in these jobs because they pay poorly, offer no or limited benefits, provide insufficient training and support and offer no opportunities for advancement. In addition, these jobs are very demanding physically and emotionally. What's more, as our population ages, we will experience a shortage of women age 25 to 44--a developing crisis situation for the long-term care long-term care (LTC),n the provision of medical, social, and personal care services on a recurring or continuing basis to persons with chronic physical or mental disorders. industry, as this group represents a substantial number of the direct care workforce. As public awareness of Alzheimer's disease increases, more people will seek earlier diagnoses. While this provides a tremendous personal opportunity for those with the disease to get their affairs in order and participate in decisions about their future, it poses a unique challenge to facilities. There will be more people with the disease in facilities than ever, but each will live differently with the disease and consequently require different Alzheimer care. There are efforts under way, as well, to understand how Alzheimer's disease impacts various ethnic and cultural groups and what the best practices might be for meeting their specific needs. The Alzheimer's Association is committed to working with providers and caregivers to provide support and to develop best practices of Alzheimer care in the long-term care industry. Contact the Alzheimer's Association at (800) 272-3900 to locate the chapter nearest you. For information on the World Alzheimer Congress 2000, the first-ever such gathering of care providers, researchers, physicians and other Alzheimer specialists, July 9-18, visit www.alzheimer2000.org. Kara Kara (kär`ə), river, c.140 mi (230 km) long, NE European and NW Siberian Russia. It flows N from the N Urals into the Kara Sea, forming part of the traditional border between European and Asian Russia. It is navigable in its lower course. Albisu, MSW (MicroSoft Word) See Microsoft Word. , is director of Quality Care Initiatives, Alzheimer's Association, Chicago, Illinois. Milestones in Alzheimer Care Provider Education 1985 Alzheimer's Association partnered with American Health Care Association The American Health Care Association (AHCA) is non-profit federation of affiliated state health organizations, together representing more than 10,000 non-profit and for-profit assisted living, nursing facility, developmentally-disabled, and subacute care providers that care for to write a manual, Care of Alzheimer's Patients: A Manual for Nursing Home Staff 1992 Alzheimer's Association published Guidelines guidelines, n.pl a set of standards, criteria, or specifications to be used or followed in the performance of certain tasks. for Dignity: Goals of Specialized Alzheimer/Dementia Care in Residential Settings. 1992 Alzheimer's Association hosts first national Alzheimer's Disease Education Conference. 1992 Office of Technology Assessment published Special Care Units for People with Alzheimer's and Other Dementias (consumer education, research, regulatory and reimbursement Reimbursement Payment made to someone for out-of-pocket expenses has incurred. issues). 1997 Alzheimer's Association published Key Elements of Dementia Care. 2000 Alzheimer's Association, Alzheimer's Disease International and the Alzheimer Society of Canada will cosponsor co·spon·sor tr.v. co·spon·sored, co·spon·sor·ing, co·spon·sors To function in the capacity of a joint sponsor of: corporations that cosponsored a marathon. n. World Alzheimer Congress, the first-ever gathering of care providers, researchers, physicians and other Alzheimer specialists. Consumer Education 1993 Alzheimer's Association published Family Guide for Alzheimer Care in Residential Settings. 1998 Alzheimer's Association revised Family Guide to Residential Care: A Guide for Choosing a New Home. Public Policy 1987 OBRA enacted, which helped to address concerns about care provided in nursing homes. 1991 Alzheimer's Association adopted Legislative Principles for Alzheimer/ Dementia Care in a Residential Setting. 1993 JCAHO JCAHO Joint Commission on Accreditation of Healthcare Organizations, see there created Special Care Unit Standards. 1994 Alzheimer's Association published Alzheimer Special Care in Nursing Homes: Is It Really Special? Research 1990 Working Group on Research and Evaluation of Special Care Units (WRESCU) created. 1993 NIA NIA National Institute on Aging (NIH) NIA National Indoor Arena (UK) NIA National Intelligence Agency (South Africa and Thailand) NIA National Institute of Accountants launched research initiative on Special Care Units for Alzheimer's Disease. |
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