Guest Editorial: Urinary Health in Eldercare Environments: An Update from the NAFC
The National Association For Continence (NAFC) is a not-for-profit consumer advocacy organization whose mission is aimed at improving the quality of life of people facing bladder and bowel control problems. Founded in 1982 by Dr. Katherine Jeter as Help for Incontinent People (HIP), NAFC today has a database of more than 135,000 names. The association’s activities include educating the public about the causes, prevention, management and treatment of incontinence; disseminating information through collaboration and networking; and advocating for additional research and coverage of healthcare costs associated with incontinence.
The National Association For Continence offers a wide array of programs and services and is considered the world’s largest and most prolific consumer advocacy group devoted exclusively to incontinence. Because of the millions of individuals affected by incontinence and its subsequent social isolation, the importance of representing the consumer’s voice cannot be overestimated.
Prevalence across Age Groups
Different diagnostic categories and degrees of incontinence affect a wide range of ages and both genders, and prevalence patterns advance with age. An unpublished survey conducted by NAFC in 2000 of administrators managing assisted living facilities spanning all 50 states suggested that the estimated 5% to 10% prevalence among all adults living independently in the community with symptoms increases to an estimated 30% as they enter assisted living. This is comparable to estimates by various experts of a 15% to 35% prevalence factor associated with urinary incontinence among community-dwelling elders, most indicating that twice as many women are affected as men.1 As frailty increases, this statistic climbs in excess of 50% for residents of skilled nursing facilities.2,3
The National Association For Continence’s retail mall intercept nationwide study of community-dwelling adults, completed in early 2001, indicated that self-reported symptoms of stress urinary incontinence, or involuntary leakage of urine, increased with age.4 These study results support NAFC’s concurrence with Dr. Neil Resnick that as many as 25 million Americans suffer from transient or chronic urinary incontinence.5 Given United States census data and government projections of demographics for 2020, this figure is predicted to increase by at least 20% to 30 million or more as our nation’s population ages, all else remaining equal.6 Although incontinence is not necessarily a direct result of aging, the aging process precipitates changes in the body that increase the risk for incontinence.
Assisted Living in the Continuum of Care Equation
In recent years, NAFC became aware of a growing, vulnerable population whose voice was not being heard in healthcare circles. The assisted living arena has rapidly expanded in the past decade with slightly more than 1 million residents at present. Retail marketing of these facilities is aggressive. The National Center for Assisted Living reported earlier this year that nearly twice (20%) as many residents are lost by an assisted living facility to another assisted living facility as to a nursing facility (13%). To make matters worse, facility administrators admit that 100% turnover among first-line “service” staff is the norm, causing a reluctance on their parts to invest in educational programs to upgrade the knowledge base of aides and certified nursing assistants about incontinence and other healthcare considerations.7
Meanwhile, state lawmakers and government agencies, alerted to this situation by consumer complaints, have proposed abundant protective legislation at the state level. This is occurring at the same time that Medicaid dollars are being diverted to assisted living in lieu of higher costing nursing homes in an effort by states to avoid adding nursing home beds as their populations grow older. As a result, state and federal officials are seeking to clearly define assisted living and what it must provide in exchange for public monies. Not surprisingly, the United States Senate Special Committee on Aging initiated a series of hearings earlier in the year to determine the success of self-accreditation by assisted living facilities. In this climate, the Consumer Consortium on Assisted Living was established to focus solely on the needs, rights, and protection of assisted-living consumers as a nonprofit, nonpartisan organization.
Despite complaints from some consumers, many are asking to be allowed to age in place (becoming increasingly frail while residing in a semi-independent living environment) or at least to exercise a voice in where they are allowed to live, creating numerous challenges. Residents of this population, whose average age nationwide is 83 years, as well as their families, are frustrated that their progressive frailty compromises their goals of safely and adequately managing activities of daily living, including toileting.
The National Association For Continence’s Blueprint for Continence Care in an Assisted Living Setting, the brainchild of a pre-conference workshop at NAFC’s 1999 Annual Conference, recognizes the need to educate residents and their family members about urinary health of the elderly and elevate the level of understanding and training of the entire staff to facilitate meaningful collaboration between the two camps. In last year’s NAFC nationwide survey of assisted living administrators, facility operators emphasized the need for residents to assume responsibility for handling as much of their toileting as independently as possible. In addition, residents, with family input, should help determine what assistance they need with continence care. The primary goal of the Blueprint is to prolong self-sufficiency of the resident through a quality-of-care dimension added to quality-of-life considerations by the staff and through self-care responsibilities for continence assumed by the resident and involved family members.
The National Association For Continence’s Blueprint merged and subsequently “translated” the guidelines published 5 years earlier by the Agency for Healthcare Research and Quality (AHRQ, formerly known as AHCPR) and those published by the American Medical Directors Association (AMDA) for direct applicability to assisted living environments, with particular attention paid to incontinence issues. The finished product was unveiled at NAFC’s Annual Conference last year in Atlanta. Urinary health in eldercare environments was designated the central theme for NAFC’s 2001 Annual Conference scheduled for October in Washington, DC. If the “aging in place” philosophy is to be fully embraced, inclusive, comprehensive move-in data and transition criteria, as well as concomitant education for staff and elders alike, are necessary. Quality of care must be ensured in order to offer quality of life in assisted living settings. It clearly takes a team of professionals and supportive family members to be successful in designing and implementing a continence care plan that is flexible enough to accommodate an individual’s needs and goals, while recognizing the natural evolution of the aging process. Urinary health in eldercare needs constant attention, refinement, and sensitivity. Continuing Care Retirement Communities must accept responsibility for the frailty of residents they are housing and implement standards for care to deliver on their quality of life promises. Central to this promise are standards for continence care. In addition, the fragmented nature of home- and community-based services for people in need of long-term care should be strengthened because of the difficulty that volunteer caregivers have in finding the support they need.
For information about accessing this educational program by CD-ROM, contact NAFC at 1-800-BLADDER or visit NAFC’s website at www.nafc.org. Please check this site for information about a planned web cast of the conference agenda. The educational program is being submitted to qualify for 6 hours of credit. Production and dissemination of this program is made possible, in part, by an educational grant from Pharmacia Corporation.
The National Association For Continence acknowledges the dedication and hard work of the following leaders in this project: NAFC Blueprint Steering Committee: Dorothy Doughty, RN, MN, CWOCN; Joseph Ouslander, MD; Benson Smith, NAFC Chairman of the Board and former President/COO of C. R. Bard, Inc.; and Nancy Muller, NAFC Executive Director - Chairperson Task Force Chairpersons: Assessment: Catherine Dubeau, MD Prevention and Management: Mary H. Palmer, PhD, RNC Training: Diane K. Newman, RN, MSN, CRNP Consumer Advisory Panel: Madelaine Cafiero, RNC, MSN, FNP Marketing and Publicity: Jacqueline Russo