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BOOK REVIEW |
Senior Vice President, Policy and Professional Affairs Lighthouse International New York, NY 10022
Aging and Vision Loss: A Handbook for Families, by Alberta L. Orr and Priscilla Rogers. AFB Press: New York, 2006, 232 pp. $19.95 (paper).
Vision Loss in Older Adults: Nursing Assessment and Care Management, edited by Susan Crocker Houde. Springer Publishing Company: New York, 2007, 213 pp. $45.00 (paper).
Vision loss among older adults has not exactly been on the radar screen for most gerontological professionals and for the public at large. The Lighthouse National Survey of Vision Loss (1995), conducted by Louis Harris and Associates was the first of its kind, national survey which documented increased self-reported prevalence of vision loss, lack of awareness of specialized vision rehabilitation services, and fear of blindness. Among the population age 45 and over, 17 percent self reported a problem with their vision while wearing their best corrective lenses; among those age 65 and over, 20 percent self-reported a vision problem; and among the 75 and over, 26 percent self-reported a vision problem (Lighthouse Inc., 1995). More recently, the Lighthouse survey has been supported by the 2004 National Health Interview Survey (NHIS), although slightly smaller percentages were found. The NHIS data show that 13.2 percent of persons age 65–74 years of age report having vision trouble and the rate increases to 22 percent of persons age 75 and older (Pleis and Lethbridge-Cejku, 2006). Given these prevalences, it is not surprising that these two books have been written and add to the growing literature emerging on this topic of vision loss among the elderly.
There are two major factors for the increasing attention to age-related vision loss. The first factor driving this increased interest is that older adults are living longer and with longevity comes increased risk/prevalence for the most common age-related eye disorders of macular degeneration, glaucoma, diabetic retinopathy, and cataracts. The second factor is the first wave of baby boomers that started turning 60 last year. With the increasing numbers of boomers, there are and will be larger numbers of persons who experience these age-related eye disorders.
The Health Care Perspective
Susan Crocker Houde has edited an eleven-chapter book, Vision Loss in Older Adults: Nursing Assessment and Care Management, which recognizes the major impact that vision loss can have on the social, psychological and physical functioning of older adults and their families. She passionately stresses the vital role that nurses have in the promotion of health and well being of patients with vision loss. Alberta Orr and Priscilla Rogers, on the other hand, have written a large-print reader-friendly book for the families of older adults who have vision loss to help readers understand their condition. Each book provides very useful information for its intended audiences. However, they bring to their books different philosophies that stem from the evolution of the field of specialized vision rehabilitation outside of health care—differences that now finds themselves at an important crossroads. Each of these philosophies are helpful in their own rights, but they provide little acknowledgement of each other.
Susan Crocker Houde is a professor of nursing, and associate director of the Division of Aging of the Center for Health and Disease Research at the University of Massachusetts. She is an adult nurse practitioner as well. She and other chapter authors are nurses, nurse practitioners, and/or diabetes educators, and all have advanced training/credentials in nursing. The approach taken is that of a nursing educator seeking to educate nursing colleagues about age-related eye disorders. As one might expect, there is a chapter on each of the four major disorders, namely: age-related macular degeneration, cataracts, glaucoma, and retinopathies. Each of the chapters on the eye disorders gives thorough information on prevalence, pathophysiology, risk factors, examination, and a range of treatments including medicine and/or surgery appropriate for each eye disorder. The danger, of course, with any book giving the latest treatments is that by the time the book is off press, new treatments are underway. But in general it gives an excellent overview of the eye disorders and treatments.
The major focus of the chapters is on what a nurse should do in terms of assessment, interventions, and follow up with regard to each of the major age-related eye disorders. There are references to referrals to ophthalmologists for treatment, but sadly, very little encouragement to refer to the specialized vision rehabilitation personnel who could be very helpful when nothing more can be done to prevent, alleviate or restore the vision that has been lost. This information was reserved for the chapter on "Assistive Devices and Resources for Older Adults with Age-related Vision Loss," written by Betsy Campochiaro and Catherine Sackett.
The chapter on retinopathies is especially helpful in that it takes a broader view of the traditional diabetes-related retinopathy to one that includes hypertensive retinopathy. As this chapter's author, Judith Pentedemos, states,
The most common causes for the development of retinopathy in the older adult are type 1 diabetes mellitus (DM), type 2 DM, and hypertension(HTN). Just as type 2 DM and HTN can have insidious onsets, so do the retinopathies associated with them. This can present a particular challenge for the health care provider, who all too often discovers the retinopathy before the causative disorder. Thus all health care providers are encouraged to become skilled in performing an ophthalmoscopic examination as part of every annual physical examination of the older adult for the purpose of early detection. ... Unlike type 1 DM, up to 21% of individuals with type 2 DM already have retinopathy at the time that their diabetes is diagnosed, and most will develop it over time. (pp. 65–66)
Pentedemos points out that HTN among older Americans is estimated to affect 58 million individuals. This and the other chapters on eye disorders should be read by those vision rehabilitation professionals who do not have a health care background to help them better understand the disorders.
A very powerful chapter entitled "Psychological and Social Impact of Age-Related Vision Loss" by Karen Devereaux Melillo documents well the literature that vision loss of any type is a dramatic event in the life of older adults. She carefully describes how vision loss—whether gradual or acute, whether resulting in total blindness or partial sight (low vision)—impacts the older person's functional ability and his or her desire to retain independence. It also documents that visual impairment is 1 of the 10 most frequent causes of disability in the United States. Melillo recommends that nurses be aware of the person-oriented strategies versus the environment-oriented strategies involved in Paul Baltes' (1987) framework of selection, optimization, and compensation. In the case of the person-oriented strategies, the nurse is to be involved in selecting realistic goals and relying on memory and new learning to help the older adult adapt to age-related vision changes. The environment-oriented strategies would rely on use of optical devices and reliance on others to maintain functional independence; however, there is no mention that this could involve other vision rehabilitation professionals other than the nurse on a multidisciplinary team to help the older person with vision impairment to learn the new strategies.
This chapter on psychological impact also stresses the key role that social support from family and friends plays in helping the older adult adjust to vision loss later in life. It encourages the nurse to strategize ways to increase social network size for older adults with vision impairment. Although the chapter points out that that knowledge of available community resources and supports is helpful, it does not mention the resources available specifically from the vision rehabilitation network.
The chapter on "Supporting Families of Older Adults with Age-Related Vision Loss" by Catherine Sackett and Betsy Campochiaro presents a strong rationale for why the family should be part of the treatment team. They describe this team as the ophthalmologist, low-vision professional, and occupational therapist as key for information and assistance. Once again, this view fails to educate the nurse as to the other specialized vision rehabilitation providers like orientation and mobility specialists, to name but one group. For example, the section on cooking and cleaning would have benefited greatly by recognizing the specialized body of knowledge possessed by vision rehabilitation therapists or by occupational therapists with specialized vision rehabilitation competencies to help teach the older person with vision loss the techniques of managing these tasks independently. Depending on the older person's comorbidities, just because he/she experiences vision loss, does not necessarily mean that the family will have to "take care of finances, decorate the house at holiday, cook, shop for gifts etc." (p. 158).
The Specialized Vision Rehabilitation Perspective
Alberta Orr and Priscilla Rogers, authors of Aging and Vision Loss: A Handbook for Families, have made up for the lack of attention to specialized vision rehabilitation services in the Houde volume. Orr and Rogers focus almost exclusively on these specialized services, mentioning the role of occupational therapists in only one paragraph, and not mentioning the role of nurses at all. Until recently, Orr was Program Manager, Aging and Vision Loss, at the American Foundation for the Blind and is an adjunct faculty member teaching rehabilitation counseling with the aged at Hunter College of the City University of New York. Rogers is a consultant in vision and aging for the American Foundation for the Blind. She formerly worked as Bureau Chief of Client Services in the Florida Division of Blind Services and also in private, non-profit vision rehabilitation agencies. Both bring many years of expertise to the field of vision rehabilitation for older adults and to writing a book to educate family members about what to expect when their older relative loses vision. Their ten chapters cover topics that are designed to educate the family about age-related vision loss, especially clarifying what are normal age-related vision changes and what are not, emotional reactions to vision loss, family dynamics and the impact on adjustment, exploring new approaches to everyday tasks, environmental modifications, and information to help the family discover the delivery system devoted to older people with vision loss.
Orr and Rogers effectively utilize short case vignettes in the beginning of each chapter to illustrate the issues that will be covered. The vignette makes it easy for the reader to identify with a real person and a problem faced by the older adult with vision loss and/or their family. One of their early messages to the reader is that their book is meant "to reassure you that your older relative does not need ‘caretaking’ on the basis of vision loss alone" (p. 4). Chapters cover topics on how your family member will learn to cope with vision loss and how you can help, and ways to restore the equilibrium of family relationships through communication and understanding of needs. The volume also offers useful guidelines for adapting the home environment, coping with other health conditions, and adapting social and leisure activities At the conclusion of the book, there is a frequently asked questions section, which provides responses to the most common inquiries about an older person's vision loss; it also references the reader back to the chapter where more information is available. Another feature throughout the book is "Tips" that are outlined in boxes. These give guidance in a succinct format, for example, "Facing Vision Loss: Tips for the Family" or "Safety Tips for the Home." There are quotes interspersed from older persons with vision loss and from family members to illustrate points in the book and there are photos to illustrate, for instance, home modifications, how to utilize contrast, and adaptive devices that promote independence.
There is an extensive resource section on how to find services ranging from eye care to vision rehabilitation. This section also includes sources for such items as vision simulators, and products for independent living. It provides the catalog sources for a variety of specialized products that help people with vision impairment and other disabling conditions maintain independence. There are resources for specialized lighting, and products for labeling both tactual and auditory output. The reader is also given sources for recreation/leisure activities (books on tape, descriptive video, and radio reading services). In addition, the authors provide resource organizations that support caregivers and provide suggested further reading/publications that might be helpful.
Reimbursement for vision rehabilitation services is given a thorough explanation by Orr and Rogers. They describe the network of state offices/commission for the blind and visually handicapped that receives federal and state monies to cover the specialized rehabilitation services if the person meets the legal definition of blindness (most states define legal blindness as visual impairment where visual acuity is 20/200 or less in the better eye after best correction with eyeglasses or contact lenses, or in which the visual field restriction is 20 degrees or less; an individual's full visual field is approximately 180 degrees).
Varying by state, some state offices employ and provide specialized vision services, others contract for services with private, nonprofit agencies, and still other states have a combination of contracting and direct service provision. Some of the nonprofit agencies maintain the criterion that people they serve must meet the legal definition of blindness, while others more broadly base eligibility for services on functional vision loss criterion. For many older persons with age-related eye disorders, they may not meet the legal definition of blindness but they are functionally visually impaired. When functional issues arise, it is critical that the individual be referred to see a low vision specialist (an ophthalmologist or an optometrist with specialized training) to maximize the patient's partial sight. The low vision specialist will work with the patient to determine what are the daily living, work, and/or leisure activities that the individual needs or wants to continue, and oftentimes will prescribe low vision optical devices, aids, or other interventions in order to accomplish these goals. The low vision specialist is often the gatekeeper to the specialized services of other vision rehabilitation professionals and makes referrals as appropriate.
Orr and Rogers give the reader substantial information about how the field of vision rehabilitation is organized and its guidelines for reimbursement of services with government funds. In contrast, Houde's book is targeted to nurses and what they should know about age-related vision loss and mentions reimbursement issues as follows:
Although the ophthalmologist may be unable to offer any therapies to improve vision, he or she is the chief referral source for rehabilitation and other support services. Although low vision devices are still not covered, Medicare coverage for low-vision-rehabilitation was approved in 2002. (p. 153)
But Medicare is only part of the reimbursement landscape. While it is true that portions of the low vision examination (performed by an ophthalmologist or optometrist) are reimbursable by Medicare and rehabilitation services offered by an occupational therapist are covered by Medicare, the services offered by a certified orientation and mobility specialist, certified vision rehabilitation specialist, and/or certified low vision therapist are not. There is one recent exception which both of these books, because of publication dates, do not address.
The exception is a five-year Medicare Low Vision Demonstration Project that began April 1, 2006. It was established to help deliver services and evaluate the utilization of Medicare funding for vision rehabilitation by a new set of providers, not previously covered by Medicare. The three specialized (certified) vision rehabilitation provider groups are: orientation and mobility specialists, low vision therapists, and vision rehabilitation therapists. This demonstration is available in six sites namely the states of North Carolina, Kansas, Washington, and New Hampshire and the cities of Atlanta and New York. This demonstration moves beyond the legal blindness definition and allows persons with best-corrected visual acuity of 20/70 or worse in the best eye to qualify for vision rehabilitation, which is very helpful. Gerritsen recently referred to the demonstration as a use it or lose it situation. He wrote, "If it succeeds, it will open up significant opportunities for funding and provision of services. But if it fails, it could represent another nail in the coffin of specialized services"(Gerritsen, 2007, p. 197).
Toward Overcoming the Disconnect
The disconnect between the traditional specialized vision rehabilitation service providers and the health care providers is painfully apparent. Yet, it is understandable in light of how each group is professionally prepared. Obviously, nurses, physical therapists, occupational therapists, etc., come from a health care background while those traditional vision rehabilitation professionals are prepared by education-focused curricula. This dichotomous arrangement made sense in the early 1900s when the average life expectancy was 47 and the largest groups of persons with vision impairment were children born with impairment who needed specialized teachers of the visually impaired, and war veterans returning with vision loss, who needed a vocational system for retraining.
The twenty-first century needs a paradigm shift, especially to accommodate the prevalence of age-related eye disorders and the looming numbers of aging baby boomers who will experience vision impairment. The traditional health care providers need to embrace the specialized skills that the vision rehabilitation providers have to offer. The vision rehabilitation community needs to recognize what the health care providers have to offer, particularly when it comes to older adults with impaired vision who frequently have comorbidities to address.
Vision loss is rarely one of total blindness or no useable sight but rather one of a continuum of vision loss that may begin gradually and progress or in some cases, may have a sudden onset. But most of the age-related eye disorders tend to be progressive so the point at which someone should be referred for more specialized services of vision rehabilitation versus when the traditional health providers such as nurses, occupational therapists, the physical therapists, etc. can address the minor accommodations that are needed.
There is increasing public health awareness as evidenced recently by the Centers for Disease Control's (2006) release of Improving the Nation's Vision Health: A Coordinate Public Health Approach, which states, "Over the next three decades, prevention of vision impairment from eye diseases will be an even more important concern as the prevalence of adult vision impairment and age-related eye disease in America is estimated to double due to our rapidly aging population, and the increasing epidemic of diabetes and other chronic diseases" (p. 5). It should also be noted that the Healthy People 2010 objectives for the first time have a separate chapter on vision and hearing in these decennial goals with ten targeted goals for Healthy Vision 2010. Crews, Kirchner, and Lollar (2006) advocate that the time is right for national discussion as to how the traditional field of vision rehabilitation can become part of the mainstream public health movement in order to promote healthy vision and the prevention of its disabling effects.
The literature is also beginning to address the economic burdens of adult visual disorders. This will be a driving force in looking at prevention, early intervention, treatment, and rehabilitation for future cohorts of older adults. One study of Medicare beneficiaries documents that the costs are higher for those with progressive vision loss than those with normal vision (Javitt, Zhou, & Wilke, 2006). Another recent study documents that major visual disorders among Americans older than 40 years result in substantial economic costs for the economy and call on public health measures to reduce this burden (Rein et al., 2006).
To address the growing numbers of older persons with age-related vision impairment, who will usually not experience it without other comorbid conditions, there must be a paradigm shift. Just as the health care professions, particularly nursing and occupational therapy, are increasing their attention to vision loss, the traditional field of vision rehabilitation must acknowledge that it needs to collaborate and work more closely with gerontological health care professionals to best serve older adults with vision impairment. A major barrier is the lack of evidence-based practice regarding the amount of inputs to achieve maximum independence for vision rehabilitation, and whether there are differential outcomes based on degree of loss, comorbidities and level of expertise of the provider.
There is an extreme shortage of specialized vision rehabilitation to meet the growing need of the older adult population with impaired vision. At the present time the Academy for Certification of Vision Rehabilitation and Education Professionals (ACVREP) has certified only 2009 Orientation and Mobility Specialists, 517 Vision Rehabilitation Therapists (VRTs), and 288 Low Vision Therapists! Some of the 517 VRTs are Occupational Therapists who have chosen to study, take coursework, and complete supervised work to learn the specialized skills required of VRTs to be eligible for ACVREP certification. In 2006, the American Occupational Therapy Association (AOTA) launched its own new portfolio based certification for occupational therapists in low vision rehabilitation. Occupational therapists who learn the enhanced specialized skills of vision rehabilitation make excellent additions to the vision rehabilitation team and the advantage is that their health care background makes them very well suited to work with the chronic conditions older persons frequently have in addition to the vision loss. There are approximately 90,000 occupational therapists in the United States, while there are only 517 vision rehabilitation therapists. A collaborative model is imperative. Meanwhile, with almost 3 million nurses in the nation, imagine the impact of Houde's recognition that "nurses, with advanced knowledge of common vision problems in old age, can play an important role in education that may promote behaviors that can have a positive effect on preventing and slowing the progression of age-related vision loss" (p. xiii).
It is time to eliminate the disconnect and to strive for broader multidisciplinary partnerships to expand the awareness and skills of the health care provider universe to partner with the specialized vision rehabilitation network for effectively and efficiently serving the population in need. It will be far easier to prevent vision loss where possible, and to begin the rehabilitation process early, before learned dependence sets in and is much harder to change. There is not much time to make this happen in order for both fields to be ready to meet the needs of the growing number of older adults with impaired vision.
References
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