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INDUSTRY & PARTNER LINKS | SITE GUIDE LEGAL INFO / PRIVACY POLICY
CARING FOR AN AGED POPULATION IN THE 21ST CENTURY CHALLENGES AND OPPORTUNITIES
Statement of Need Society has long recognized the obligation of governments to protect and provide for those most vulnerable - the young, the sick and the infirm. A society.s willingness and ability to care for its vulnerable members is often seen as a mark of maturation in its development. This measure of development is based upon the understanding that surplus economic productivity is required if members of society who are not able to sustain themselves are to be supported. Historically in emerging nations attention is first focused upon conquering the debilitating effects of acute infectious diseases that reduce both current and future economic productivity. While not under control in many parts of the world, sufficient gains have been made in the past 50 years that many emerging countries expanded their efforts to include an expanded focus on the needs of children. Changing demographics in the 21st century will require this focus be expanded to include the needs of older persons. In the report on Global Aging produced for the World Health Organization meetings in the spring of 2002, the case for expanding efforts to address the needs of older persons is articulated quite clearly. As noted above, part of this rationale is ethical and moral. Thus, philosophically, embracing a broader agenda to include recognizing the rights, needs, capacities and preferences of older persons is a laudable expansion of the historic efforts of emerging nations. Further impetus is provided by the drive for continued improvements in the health of emerging nations. populations. In the next two decades significant increases in the numbers of persons age 60 and above are projected for Mexico, the Caribbean and South America (see Table 1). In addition to acute disease, health care systems will have to expand capacity to respond to chronic disease. These increases will tax existing health delivery systems, which typically were not designed to respond to long-term illness and disability. Finally the quest for continued economic development demands that strategies be developed to care for the aged. The out-migration of young adults to centers economic activity is a well-documented fact. Of concern is burden this will create in isolated, rural areas if a system of care is not created. Moreover, it must be recognized that labor force participation by females will dramatically affect their availability to provide on-going care to aged individuals needing on-going care and supervision. Thus, to the extent future economic growth involves growing labor force participation by females requires corresponding efforts to expand other care options for those normally cared for by females. These simple facts suggest the need for developing a plan to develop a comprehensive system of support for older persons. Creating A Vision of Care for the Elderly To guide the development of a plan for care requires a vision of its guiding principles. In 2002 the Pan American Health Organization put forth a set of guiding principles to inform the development of such a vision. These include:
Values Underpinning Policies and Programs Generally, it is believed human needs are gradated along a continuum from those associated with mere survival to those associated self-actualization. In the course of contemplating developing policies and programs for an aged population, it becomes important to lay out a goal of promoting the means to achieve more than survival. This means upholding values associated with self-actualization. WHO and PAHO identified these values in 2002 detail the need to address the global issue of a planet with an aging population base. The most basic of these values do include safety and security, which are needed for survival. But policies and programs for safety and security should also recognize their relationship to self-actualization and quality of life. Being mentally or physically frail brings an added dimension of fear. For example, fear of being a victim of robbery from those physically more fit may lead to isolation and unnecessary deprivation. Efforts that bring freedom from fear - of being a victim, of falling, of dying alone, of being ridiculed - should be considered as important to supporting a societal value to provide safety and security for older adults. Justice and fairness are by their very nature, the responsibility of government. This fundamental belief sometimes is at risk for those who are wards of the government - whether they are prison inmates, psychiatric patients or residents of long-term care institutions. What rights to give and how to uphold them is a topic for serious debate among ethicists. What is clear, however, that age or location of residence alone is no reason to withhold any civil rights or to tolerate violations of human rights. To the extend any substitution of rights can be justified by personal condition, those substitutions must be articulated clearly and mechanisms established to monitor whether these rights are being abused. Beyond survival, perhaps the values of dignity and independence are the most cherished. Yet these are often put at grave risk as a result of disability. Most people, including older people, want to be treated with dignity and respect. They want to be able to live independently and take care of themselves. When disease robs older people of this ability, they often feel as if their dignity is at risk as well. As core values dignity and independence should be woven into the fabric of everyday thinking about policies and programs for the aged. In large part, empowerment comes as result of freeing people from fear, upholding their rights, and supporting their desire to be independent in their daily lives. It is woven into the roles people play and what value society assigns those roles. And it is woven into the fabric of what is meant by active aging and quality of life. Active Aging and Quality of Life One of the most elemental of human goals is to feel useful and productive, to be actively engaged with life. This is true regardless of age, gender, socio-economic status or level of disability. The particular challenge with older persons, particularly those who are frail and infirm, is to properly channel and support this desire to be productive. Whether an individual feels useful is tied to the roles they play in society and the value society places on those roles. The perceived value of the roles persons play is important, both to the individual and to society. For the individual, feelings of uselessness can negatively impact all dimensions of well being including physical, social and psychological health. These, in themselves, can have an economic impact on society. It is also important to recognize that society.s willingness to respect the human rights of individuals and to provide support to them is related to how they are valued. Thus, issues of neglect and abuse of the aged must be viewed in this context. The delineation of accepted and valued roles is crucial to constructing effective strategies to assure opportunities for .successful. active aging. Clearly then in developing a policies and programs that promote active aging two questions must be asked. First what roles are currently seen as age appropriate? Second, are those roles valued and if not what actions are required to change how they are viewed? In the context of aging policies and programs this mean examining the roles older persons are expected to fill in society. Will they be recognized guardians of youth? Are they expected to assist in campaigns to eradicate rodents to protect basic public heath? Is their responsibility to contribute formally through paid work to the economic output of the nation, regardless of their health status or personal views on retirement? It also means publicly recognizing the value those roles and developing policies that show their importance to society. Being held in high regard by society is an important part of creating quality of life for older persons. But being held in high regard is not sufficient response to fulfill government.s responsibility. To the extent the older person lacks options to have their needs met and their preferences respected, their quality of life is severely compromised. Thus, a major role of government is to encourage the development of programs and policies that are responsive to the identified needs of older persons. Aging policies and programs thus must address government.s role in meeting the most basic of needs when older persons themselves or their families are no longer able to maintain them. It is necessary that those needs be identified and an assessment made of the degree of demand projected over time. Options that do not take the preferences of older people into account may not have the impact they should and their full value diminished. Thus, in preparing to create policies and programs, government should also consider what these preferences might be. To the extent possible, an array of options, that reflect the range of preferences and needs identified, should be developed. These choices are at the heart of creating a quality of life beyond survival. It is important to note, too, that honoring these choices does not inherently cost more than an intervention, which does not respect preferences. Extending the Family It is clear that governments must be prepared to take an active role in designing, supporting and monitoring the provision of shelter and services to the elderly. However, it is also imperative that this role be viewed as complementary to and supportive of the role of families in providing long-term care for their aged relatives. In every society, families and friends are a central component in the provision of long-term care. This care ranges widely - from intermittent financial assistance to daily nursing care. In developing a system of care it is important to identify what services would be most helpful to the continued active involvement of the family in that care. In general we can say that families may need education and training, financial assistance and interventions that offer supplemental or relief care. Families, for example, may need information about giving medications or special care-giving training to help them deal with dementia. They may need a home modification program to pay for adaptations to their home to accommodate an older relative or a financial allocation to stay out of the work force to provide on-going care. Others may need day care, meals or home health services brought to the home so they can continue to work and provide care to their aged relative. To develop family friendly policies and support government will need to explore the nature of family care in the 21st century. The formal care system will need to develop as an adjunct to, or an extension of, the family. These policies and programs will need to address the adequacy of the physical environment, the giving on quality of life both the family and the aged person. Moreover the policies and programs must be designed to respond to those with minimal needs to remain independent to those with significant enduring disability. Role of Technology One way to support families would be to look at the role of technology. Relatively simple technologies such as diagnostic testing for disabling diseases or devises that promote the continued independence illustrate how technology might be used cost effectively in many arenas. For example, glaucoma is an eye disease easily detected and treated. Untreated, it can lead to blindness which likely to increase the amount of economic and other support an older individual needs. For those bed-bound the use of a special mattress may assist in the prevention of skin ulcers which are difficult and expensive to treat. Mobility aids such as quad canes might reduce falls and subsequent fractures. More sophisticated technology might also prove to be a good investment in certain circumstances. Motion sensors that track the movements of wanderers might free family members to work or go to school. Electrical appliances that turn themselves off might mean a longer period of independent living for an older adult. So might medication systems that dispense automatically at the right time and dose. On a larger scale, using satellites to bring medical care to remote areas might be a way to expand scarce resources and improve access to care. Computers can track interventions, their outcomes and model projections as well as project current and future economic impact. Pumps can administer drugs such as insulin safely. The importance of envisioning the role of technology in providing care for the aged can not be overstated. It is still true that much of long-term care is a high touch, low tech venture. But, undoubtedly, actively promoting its role in the provision of care will produce adaptations of existing technology and the creation of new applications. Expanded Focus on Chronic Care An expanded effort to understand the needs and preferences of older persons undoubtedly is necessary in view of the need to address changing demographics and global labor markets. Central to this effort will be the exploration of the difference in acute and chronic health care. In emerging nations the necessity of focusing efforts to control infectious diseases is evident. That focus consumes significant resources. The success of those efforts is seen somewhat in growing numbers of older people. But old age brings a different set of problems, those associated with chronic disease. Acute, infectious disease responds well to public health campaigns aimed at cleaning up water supplies or eradicating agents of transmission such as mosquitoes or rats. While often severe in its consequences, acute disease.s duration is often mercifully brief and typically is responsive to modern drugs. Chronic care is more obdurate. The course of chronic disease is lengthy with increasing morbidity. This often results in the loss of independence as levels of disability grow. Its effects may be physical or mental, or sometimes both as evidenced by an older person with stroke related dementia. And drugs, while often useful for slowing the course of chronic disease or reducing the symptoms associated with it, can not cure it. Health care, in most countries, has focused upon acute care. By and large training of health care professionals, such as physicians and nurses, is centered upon that aspect of health care. Moreover, the systems used for the delivery of services, i.e., hospitals and community health programs, are often inefficient and ill equipped to deal with chronic health conditions. Any effort to address chronic disease must look closely upon the training programs and the existing methods currently being used. In short, effective policies and programs for an aged population requires an understanding that a fundamental shift in thinking about disease and health care must occur. Such thinking must include what changes in health care training and delivery systems might be needed to deal more effectively with chronic care issues. Addressing Acceptability, Adaptability, Accessibility and Accountability The heart of planning and implementing policies and programs for an older population requires exploring the issues associated with acceptability, adaptability, accessibility, and accountability. These four attributes should serve as criteria by which to examine the parameters set for any aging policy or program. Their meaning, in this context, becomes quite clear. Acceptability refers to the degree that a proposed policy or program recognizes and takes into account prevailing attitudes and values of a culture and the people to be served. While a goal may include changing some of those belief systems, it is important to recognize the role they play in the day to day functioning of individuals and of the larger society. The importance of dealing successfully with this element cannot be overstated. By way of illustration, is it likely that a meal program that ignores traditional diet will be readily eaten? If hospice care is provided outside of the individual home, will those other than the homeless use it? What features must age specific housing, such as that built for frail older persons, include if older persons and their families view them as a viable, appropriate option for long-term care? Failure to consider the issue of acceptability will most likely result in policy and programmatic failures that are costly, both in economic and social terms. To determine acceptability preferences must be central to the development of any intervention. This is not to say that efforts should not be undertaken that might conflict with prevailing preferences. Rather, acknowledgement and strategies to influences prevailing attitudes and values must be incorporated into those efforts. The second criterion, alluded to above, is adaptability. Adaptability is the process by which good ideas are modified to fit existing circumstances. In addition to belief systems, these circumstances may include resources and environment. Borrowing approaches proven to work is often done, but seldom with resounding success. For example, the United States has expended enormous resources promoting cross-cultural competency for those who work with older adults. But these efforts often yield limited results because existing policies and programs have not been sufficiently adapted to address the needs and the preferences of older ethnic Americans. In this case the prevailing belief systems are not sufficiently taken into account. Another illustration might involve the use of hard wired electronic systems to provide security when the source of power is unreliable, trained repair technicians unavailable, and replacement parts difficult to get quickly. The key to that successful adaptation is the degree to which an approach recognizes and addresses known needs and preferences in one set of circumstances. To the extent these are articulated and addressed, modifications are more readily made for a different set of circumstances. Adjustments made for the purpose of implementation can be more readily made if the underlying concepts of an approach are broadly based upon basic human values and recognize the importance of individualization. Accessibility, the third criterion, touches upon multiple issues related to financial resources, location, and design. When thinking about access many assume the goal is to allocate additional resources to broaden availability to those without sufficient economic means to purchase needed services, particularly shelter and care. The extent to which a society has the means, and the willingness to use them, to address lack of access due to individual financial resources is an issue all societies must individually determine. However, apart from the issue of how to increase individual economic capacity to purchase needed goods and services, aging policies and programs must consider other factors that affect access. Consider for example how the location of a free clinic influences who will have access to its services. Location of services in places that are easy to get to or in which people feel comfortable being will increase their accessibility. Thoughtful selection of sponsors and location therefore are necessary in program implementation. The same thoughtful consideration should be given to how design impacts access. A case in point is in the construction of specialized housing for the aged. Using such simple solutions as wider doorways, lever hardware for doors and higher toilets significantly impact the older person.s ability to maintain mobility and independence yet do not add to the cost of the shelter. To a large extent issues related to acceptability, adaptability and accessibility are a matter of creating awareness and sensitivity in the larger public and, particularly, among those responsible for designing and operating programs for the aged and other special needs populations. However, there is also a need to create formal mechanisms for accountability. The last criterion, accountability assumes that responsibility for outcomes can, at least in some cases, be attributed to the actions of individuals. In creating accountability it is necessary to know what is expected, for this creates the basis to assess actions and the degree of responsibility for various outcomes. Expectations must be based upon the goals and objectives for particular policies and programs. They must be rooted in some larger societal statement of purpose that has been crafted into enabling legislation to provide the legitimacy needed to enforce any resulting rules, requirements or regulations. One of the first steps in creating a system responsible for crafting policies , assisting in programmatic interventions and monitoring services made available to the aged is the creation of specialized agency within the government. Such an agency should be staffed with those with training in gerontology, as well as geriatrics. The inclusion of gerontologists would assist the effort to identify and support approaches traditionally found to be more effective in dealing with the frailty that often accompanies old age. An important part of defining an approach to caring for an aged population involves creating program guidelines. These guidelines should a set of minimum operating standards for those involve as providers of shelter and care, regardless of who is paying or where the care is offered. Such guidelines not only offer some protection against willful abuse or neglect, but set the stage for best practices and identify areas where additional specialized education may be needed. An Integrated Approach To Care Apart from financial security, appropriate shelter and adequate personal and health care, are the most fundamental of needs to be addressed by aging policies and programs. It is around these that an outline of an integrated approach for cared of the aged is presented in the body of this paper. This approach is based upon the understanding that a comprehensive array of options will provide varying levels of service in different types of settings. Such an approach maximizes responsiveness to individual preferences and increases the economic efficiencies of various interventions. Thinking in advance about how to link shelter and services is likely to produce polices and programs that are more efficient. A main goal in these linking actions is to reduce the need for specialized units of care or housing. Moreover, when such specialized settings are required, a goal should be have the orientation and capacity to facilitate aging in place. A system that promotes .aging in place. requires an exploration of the complementary roles that heath and personal care play in the support of individuals with chronic disease. It examines how to create overlapping options to support the individualization of care in response to personal preferences. Such a system is designed to address a wide range of needs, including:
In developing a description of programs to address needs along this continuum this paper adheres to the six guiding principles described above. It makes the assumption the desire to provide support aging persons will exist and that families will be a vital component in this network of assistance. The paper assumes that government will play an active role in augmenting what families do and in setting standards. It assumes that methods of assessing needs and allocating scarce resources will be developed, including the development of a specialized agency within the government to develop and oversee policies and programs. It argues for those standards to emerge as a result of enabling legislation and for systems be developed for monitoring the various interventions (services, shelter and care) as a part of their creation. Finally, the paper urges the expansion of focus to include chronic care capacity and technology. Brief descriptions of the types of programs that might provide support for those living alone at home or with families are first described. A second set of descriptions discusses the how chronic care might be incorporated into existing acute health care efforts. From this description, a more elaborate discussion is provided of the types of residential options for long-term care that might be developed to supplement shelter and care offered by families. This description also addresses the most serious barriers to the successful development of residential models of long-term care. At Home Support Policies and programs designed to provide support to those living alone or for families caring for aged relatives can be said to fall into one of four categories:
In the context of this paper supplemental economic support examines ways to help families and older persons absorb the additional cost of being old and frail. Programs might include:
Policies and programs for environmental support are focused upon efforts to provide one-time interventions to improve existing shelter arrangements or to provide devises to assist the person to live outside of institutional settings. Among the suggested interventions are:
All of these interventions are aimed at supporting the individual to remain in their existing living arrangement longer. A complementary set of intervention would include the development of a local focal point for the delivery of community support services. This focal point could include the following components:
Such focal point could be the logistical headquarters for services delivered into the community that make up the third component of services for in home support. This group of services recognizes that in some situations services are needed in the setting where the older person resides. Among these services are:
Incorporating Chronic Care Interventions One dimension of creating successful policies and programs for the aged involved creating additional medical care capacity. This additional capacity should involve three distinct components:
Creating Residential Housing and Care Models Although care at home is viewed as preferable by most individuals in most cultures, there are situations when it either not feasible or advisable. In these situations residential models of shelter and care are needed. Although there are a variety of models that can be developed, all of them should be based upon a unique combination of appropriate conceptual underpinnings, environmental features and service capacity to facilitate aging-in-place. Appropriate conceptual underpinnings for residential care involves recognizing values, respecting preferences and supporting the development of a variety of models. Adhering to this philosophical approach means a commitment to promote values such as choice, independence, individuality, privacy and dignity in not only day to day operational practices, but to encourage their use in the development of residential care models and in monitoring the quality of such settings. Embracing these values and actively using them to guide in the development of residential care models will significantly impact the way in which shelter and care services are delivered. The power of incorporating these values is clearly illustrated by the assisted living movement in the United States and the effect that has on aging policy and programs. To be create residential care models that effectively integrate these values they must be woven into programmatic and regulatory guidelines, included in educational curriculum, and showcased at best practice sites. A demonstration effort might effectively be used to illustrate proposed operating guidelines, needed core training, and how the concepts can be implemented in day to day operations of a residential setting. Having a person centered orientation will automatically impact how the setting in which frail older individuals live and receive care on a long-term basis is envisioned, designed and built. To illustrate, conceptualizing independence might mean identifying what sorts or disability the frail older person is most likely to encounter and to build in architectural responses such as handrails, wider doorways, lever door hardware and the like. Such a site would also show how space is used to support best practices in care. For example, color coding the doors of public restrooms is a recognized way-finding strategy for cognitively impaired individuals. One of the major benefits of a demonstration site it that it provides a visible example of how to design and build to the values and service capacity being promoted. In this respect it becomes a natural training center for those who design and construct other specialized residential settings. While adopting a philosophy of aging-in-place and building a building that makes it easier for frail persons to continue to function in the same setting as their abilities decrease is important to creating residential housing and care models, service capacity is vital. This is a lesson learned by the assisted living experience of the United States. In the United States aging-in-place in residential care settings has been hampered two things. In some cases services are prohibited by government regulation from being provided in a particular setting based solely on it licensure category. In other cases the provider of services is limited in the ability to deliver a wide enough range and intensity of services. Ideally, a wide range of services means capacity to provide congregate level services such as housekeeping, meals and laundry that can be scheduled or provided to groups for efficiency.s sake. It means having personal care staff available to respond to needs that may not necessarily fit into a predetermined schedule such as supervision, incontinence care or assistance taking medication. Aging-in-place service capacity means having access to skilled nursing or non-emergency health related services on-site. And finally it means creating collaboration in securing specialized therapies on site when they are needed. Clarifying how much of a single type of service (e.g. eating assistance) or how much service in combination (e.g. transfer assistance for a bed bound person who is unable to ask for assistance to go to the bathroom) can realistically be adequately provided is a topic to debate in advance when residency criteria are being developed. While aging-in-place would suggest being able to provide a very high intensity of service, there may be factors such as cost that act to delimit that intensity. Examples of Residential Housing and Care Models There are at least three distinct models that represent unique approaches to residential housing and care: small group homes, assisted living and multi-level care. Each of these appeals to and are most likely better suited to serve unique populations. Creating a comprehensive plan would likely require developing demonstration sites to represent each model. Small Group Homes. This model utilizes an individual residence. It involves the owner acting as a direct paid care-giver for up to a designated number (usually 6 or fewer) of unrelated (typically) persons in the dwelling where they live. Generally these homes care for individuals whose care needs can be scheduled during waking hours and who do not require close supervision. This is because the staff is usually limited to the person who is the live-in caretaker. While it is possible to create specialized .foster. homes with highly trained, skilled individual operators, this model generally works better when viewed as a cottage industry opportunity for individuals who display the characteristics of good direct care-givers. It also works well in thinly populated areas and might work well in areas where out-migration has left high numbers of frail older persons in isolated small communities. Services generally include the type of congregate and personal care services described above. Health related and complex service needs typically are more difficult to adequately meet without significant external resources (such as home health) being available to the care-giver to supplement care given routinely. This residential model often works well for individuals who have very advanced dementia (to the point they are not capable of wandering), but no significant chronic health conditions that require on-going monitoring and intervention. The small group home model also works well with individuals who function better socially in very small groups. |
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