Literature review overview and key findings

Aging in Alaska Options for in-Home Support

DIRELY NEEDED but INADEQUATE

The Aging Population Swells

population aged 65 years and older was projected to increase from 35 million in 2000 to roughly 71 million in 2030 (Goulding & Rodgers, 2003; Gelfand, 2003; Gillespie & Sloan, 1990). Those aged 80 and over were expected to increase from 9.3 million in 2000 to 19.5 million in 2030. In those years, the older population among racial minority groups would increase from 11.3% to 16.5%.These minority groups are the Blacks, Indian/Alaska Natives and Asian/Pacific Islanders. The bloating of the aging American population aligns with that of the world population. The global decline in fertility, the 20-year increase in the average life span in the second half of the 20th century and the increase in fertility among countries in the two decades after World War II combined account for the massive increase from 2010 to 2030. The resulting average life span is likely to extend to another 10 years by 2050 (Goulding & Rodgers, Gelfand and Gillespie & Sloan).

Profile of Aging Alaskans

Up to 1995, Florida had the largest share of the aging population at 19% (Goulding & Rodgers, 2003). That population in Florida was projected to increase at 26% by 2025. Up to 1995, it accounted for 15% of the aging population in 48 States, except Alaska and California (Goulding & Rodgers). But the trends changed. From 1995 to 2000, Alaska had the largest net outflow of seniors among all States at -39.4 (HSS, 2007). Recent statistics show that 76% of them are Whites and 67% of them live in the rural areas. Their life expectancy is below the median at 76.7 years. Suicide rates are also comparatively higher among older Alaskans than seniors anywhere else in the U.S. (HSS, Gouilding & Rodgers).

Recent health statistics reveal that about 80% of all persons aged 65 and older have at least one chronic condition, half of them with at least two (Goulding & Rodgers, 2003). One chronic condition is diabetes, which afflicts one in five seniors or 18%. This means that the incidence of diabetes will worsen as the population ages. Studies show that the incidence is highest among those 75 and older. As American adults live longer, their likelihood of developing Alzheimer's disease doubles every 5 years after age 65. About 10% of those 65-84 and 47% of those 85 and older suffer from Alzheimer's disease. These chronic diseases lead to disability, reduce quality of life and exact increased healthcare costs. Improved public health care measures have increased life expectancy and have thus prolonged life. But with these consequences among older adults, public health programs must be improved and intensified to respond to greater challenges. These include chronic illnesses, injuries, disabilities, and the future of care-giving and healthcare costs (Goulding & Rodgers).

In-Home State Programs Poorly Managed

The situation was so bad that the State had to go under a moratorium until improvements could be made, according to the Federal Centers for Medicare and Medicaid Services (Demer, 2009). The 5-6 months' moratorium was to affect approximately 1,000 older Alaskans, some of them dying. About 227 of them did while waiting for a nurse reassess their needs and another 27, while waiting to know about their qualification for help. These programs were to provide in-home assistance to thousands of aging Alaskans in all forms from medications to meals. These were intended to keep the older Alaskans at home instead of being placed in nursing homes or other institutions. Medicaid paid for the services rendered to the poor and the disabled. The state Division of Senior and Disabilities Services supervised them. Qualification was based on income and need. The average cost of the programs was $250 million and 61% was shouldered by the federal government. The programs came under two broad categories. The first covered only personal care. The second covered a broader range of services, such as home health care. The first served 3,200 at one time and the other, about 3,800. Some seniors were able to obtain both types (Demer).

Division officials admitted having serious administrative problems (Demer, 2009). A backlog of as many as 2,000 in assessing the services needed was one such serious problem. Their response was to temporarily stop admitting more people into the programs to relieve the backlog. Private agencies that could provide similar services through grant funding were said to have limited services. The State division also faced 8 class lawsuits filed by the Northern Justice Project, apparently for the incompetent running of the programs. The complaint said that the seniors and disabled Alaskans were not being provided the services they needed and were legally entitled to. The chief of programs for seniors and disabilities services attributed the backlog to about 40% of vacant nurse positions. The State responded to this problem by allowing other types of professionals to perform the assessment. Officials said a new project manager had been appointed to create and oversee needed improvements and to update the data collection system (Demer).

Despite claims of improvements by State officials, physicians and other healthcare professionals wrote to the Centers for Medicare and Medicaid about the lack of response by the officials (Demer, 2009). They never investigated the causes of the deaths and chronic health issues. In response, the State began conducting "focused reviews" of the fatalities and morbidities (Demer).

Ritualized Elder Abuse in Nursing Homes

Private nursing homes with long-term facilities supposed to provide care for senior Alaskans are a catastrophe in themselves. Ulsperger and Kottnerus (2010), in their book on elderly abuse in nursing homes, reveal how these facilities' organizational dynamics and daily rituals have resulted directly or indirectly in the neglect and abuse of senior residents. The book describes the different types of nursing home maltreatment to which the residents are subjected. It is a useful basis for interventions that will reduce maltreatment in settings such as these (Ulsperger & Kottnerus).

In their research on the subject, Ulsperger & Kottnerus (2007) found that everyday life in nursing homes is bureaucratic in nature. Ritualized symbolic practices or RSP in bureaucratic settings facilitate the physical neglect and maltreatment of the elders who reside there. Of the many kinds of bureaucratic RSPs, those which attract the greatest concern are staff separation and hierarchy, especially in non-profit nursing homes. Workers perform duties only if these are their specific responsibility. Staff members are highly segregated and devise their own norms. Those in the higher levels may see acts of abuse or neglect but avoid dealing with them because they do not happen to their level. Strong loyalty to units caused by strong staff separation then leads to cover-ups of neglect or abuse when the act is committed by someone in their level. Staff separation, then, in both profit and non-profit nursing homes facilitates maltreatment and neglect of residents (Ulsperger & Knottnerus).

The rituals of documentation and efficiency involve paperwork and repetitiveness (Ulsperger & Knottnerus, 2007). This creates a situation in which staff members perceive the resident as objects of work to be accomplished rather than as persons. Personal acts become quantitative and impersonalized. Under these circumstances, maltreatment becomes likely. Efficiency induces the staff to finish their tasks as quickly as possible regardless of how this is done. A nursing home promotes poor care of senior residents intentionally or not if it is run bureaucratically and support RSPs as interaction patterns. RSPs for neglect are observable more among non-profit nursing facilities. Some of these do not buy the medicines for the residents and their aides bring in from home what the residents need. The study also revealed that staff members in these facilities overuse medications. This happens in cases when staff members or aides control residents who do not perform their duties as they are told. They may even be labeled as deviants if they cannot be restrained (Ulsperger & Knottnerus).

Busy aides likewise often fail to clean residents up properly or deliberately omit to do so because of their duties (Ulsperger & Knottnerus, 2007). At other times, they neglect the residents' personal care in order to punish them for being difficult. There too is the ritualistic failure to clear the surroundings. Residents perceive these omissions as unworthiness of good care on their part. Aides also inflict bodily harm or physical abuse on residents out of vindictiveness. Aides claim that residents abuse them. Physical abuse or harm on the residents may take the form of hot baths, unnecessary restraint, locking up or some punishment. Aides justify these acts as punishments for the elders' disruption of workflow. They also justify restraint as an effective way to cut down on costs. If the working staff is not big enough, tying the residents down allows work to be performed. And the facility's structure influences behaviors that may induce bodily harm. The study concludes that bureaucratic RSPs shape the mindset and behaviors of nursing home workers. These, in turn, lead to the maltreatment of residents (Ulsperger & Knottnerus).

Providing Care for Older Alaskans -- the Solution

Older American Act of 1965

Its goal was to assist in developing new or improving programs to help older persons by means of grants (Baumhover & Jones, 1997). These grants were to provide community planning and services and for training through research, development or training projects. Its 10 objectives were aligned with the major areas of federal programming. These were an adequate income in retirement according to the American standards of living; the best physical and mental health; suitable housing; full restorative care for those who would require institutional care; employment opportunities without discrimination; health, honor and dignity in retirement; pursuit of meaningful activity at the widest range; efficient community services; immediate benefit from reliable research knowledge; and freedom, independence and the free exercise of individual initiative. Title III of this Act provided grants for community planning, services and training. Amendments made in 1971 and 1974 provided the basis for establishing and operating a nationwide network, the Administration on Aging or AoA. The first implementation strategy of the AoA was to sponsor many small direct service programs nationwide. The purpose was to create demand for additional services. In 1973, Strategy II was implemented to delineate State and sub-State units on aging. This also succeeded and was followed by the current strategy to negotiate cooperative agreements with agencies on a federal level. This step was intended to maximize resources needed for area agencies. Keeping the agreements at the national level was to devise a national framework in serving the needs of seniors throughout the country (Baumhover & Jones).

The Senior Benefits Program

The State of Alaska under Governor Sarah Palin established the Senior Benefits Program for lower-income older Alaskans (Orr, 2007; Gelfand, 2003; Gillespie & Sloan, 1990; Palin & Jackson, 2011). These would provide seniors and their caregivers with comprehensive assistance from nursing home placement to heating equipment, nutrition, transportation, and support services. Businesses also began to provide benefits assistance to cover the cost of hiring in-home assistance so that employees can return to work. The Program, signed on July 28, 2007, provides payments at $125-250 per month, according to the senior's income level. It replaced former Governor Frank Murkowski's Senior Care Program and the State's Longevity Bonus Program. Congress removed these two programs from the operating budget of fiscal year 2008. Governor Palin swore that seniors would not go hungry under her rule. She said she would work on this with the Alaska Legislature (Orr, Gelfand, Gillespie & Sloan, Palin & Jackson).

State Services for Senior Alaskans

In 2007, the 25th Alaska Legislature passed operating and capital budget bills to provide more than $300 million to programs for older Alaskans (Orr, 2007; Gelfand, 2003; Gillespie & Sloan, 1990; Palin & Jackson, 2011). House Rule Committee Chairman John Coghill remarked that many of the services provided by the State are non-existent in other States. He said that all that was needed was to identify the programs, which addressed seniors' specific needs and provide funding for these. Estimated funding for senior programs within the Department of Health and Social Services includes $54.3 million for pioneer homes; 3.3 million for heating assistance; $5.7 million for nutrition, transportation and support service; $18.7 million for adult public assistance; $3.5 million for home-and-community-based services; $173 million for Medicaid for seniors; $14 million for disabled persons aged 65 and older; $3.2 million in food stamps; and $6 million for assisted living. Further, more than $9 million was appropriated to projects, purchase and programs for seniors, such as grants, property tax exemptions for homeowners among them and free hunting and finishing licenses for residents. Senior and Disabilities Services deputy director Rebecca Hilgendorf said that more than 14,000 senior Alaskans received personal care services, nursing home services, home and community-based waiver services and senior grants from their programs in 2006. She also said that their goal is to promote the health and independence of senior individuals and their families. They serve seniors, physically disabled adults, and seniors on Medicaid waivers, those with developmental disabilities, vulnerable adults and assisted-living providers. Hilgendorf added that they have four Aging and Disability Resource Centers in the State and sustaining as well as developing more. SDS signed a formal agreement with private entities to continue serving as "one-stop shopping" center for long-term support for seniors and disabled persons (Orr, Gelfand, Gillespie & Sloan and Palin & Jackson). As of 2008, these were financial safety net programs, personal safety and long-term care supports, information resources, senior housing supports, and home and community-based services (Palin & Jackson, 2008).

Native American Families

The popular assumption is that Native American families primarily depend on family support networks (Glefand, 2003). Such networks, however, cannot be further assumed to have developed from the European mold of kinship. They may have derived from a larger one similar to a village. Some experts have argued on the appropriateness of measuring family extension from the household concept, although some households are included within the family network. There are other social support networks in reservations as well as among Native American families in the urban and rural areas. The intergenerational Native American household has been stereotyped and is inapplicable in urban Native American communities. These changes in social networks very probably increased or decreased the amount of formal care provided by the support network. The individuals who provided that care may have also changed. Those living in urban areas may have been separated from their family members in reservations. A study conducted in Oregon and Washington reservations found that 75% of those interviewed in the city and 89% in the reservations perceived the family members as the most important persons. Older Native Americans living in the city were reported to obtain fewer resources. They and other members of the family in the urban areas rely more on the formal service-delivery system more than their counterparts at reservations. Nonetheless, the family presented as a crucial provider of assistance in both groups. And even with the support and commitment of the family, assistance extended to older Native American persons was not optimal. They viewed the family as extending to non-kin and other individuals in the community with whom they related (Gelsfand).

Home Health Care

This is a new term, which refers to caring for the frail and the sick (Gillespie & Sloan, 1990). It implies the provision of healthcare services right at home instead of in institutions and facilities. Modern home health care has recently expanded to include skilled nursing care, acute care, and care requiring technologically advanced equipment and procedures. Recent statistics disclose that disabled older adults in the community receive care from relatives at 84% for males who provide 89% of days of care. Older disabled females receive care from relatives at 79%, who provide 84% of days of care. Almost all of those aged 65 or older have at least one chronic disease condition. Multiple diseases are common among them. The most common among these conditions in 1987 were arthritis, hypertensive disease, heart disease, and hearing problems. Approximately 1.1 million of them receive formal home health care and 600,000 of them pay for part of that care. They spend an average of $165 a month from their own money. In 1987 alone, Medicare beneficiaries obtained 35 million home health visits. This translates into an average of 1,068 per thousand enrollees (Gillespie & Sloan).

Home health care consists of diagnosis, treatment, rehabilitation, monitoring, and/or supportive care given and received at home (Gillespie & Sloan, 1990). It was a flourishing business on account of the aging of the population, shorter hospital stays, and the growing preference for home health care to nursing facilities and hospitals. Home health care agencies or organizations provide a gamut of services from skilled nursing, therapy to nutrition. Their services may also include personal care, therapy, medical equipment and diagnostic aids and high-technology treatments. Home health care is likely to be appropriate for an older adult who is chronically ill and requires a high level of care. He or she may also need frequent or ongoing monitoring, such as a heart condition or kidney disease. It may be a sound alternative to a terminally ill senior. If he or she needs care for a physical or emotional problem and must remain home, home health care may be the proper choice (Gillespie & Sloan).