Globally, an estimated 35.6 million adults are living with dementia, a number expected to double by 2030 and triple by 2050 (World Health Organization, 2014). Most patients with dementia in the United States will die in a nursing home (reviewed by Goodman et al., 2010), which means that these patients sometimes live for years within these institutions. The level of dementia care required can sometimes be quite high as the ability for self-care and effective communication is lost (Puurveen, n.d.). These facts and statistics explain why an estimated $157 to $215 billion is spent each year on dementia care in the U.S. And why there is a need for cost effective and humane dementia care globally; however, some care professionals have questioned the efficacy of the traditional medical model and the humaneness of the institutional built environment (Monkhouse, 2003). One solution being tried in several countries is person-centered care, because it shifts the focus away from organizational needs to the needs of the patient and loved ones. Of the many person-centered care models being tried, the Eden Alternative (EA) seems to offer the greatest promise for meeting the psychosocial needs of dementia patients. For this reason, the EA model will be used as the foundation for a dementia care health promotion plan detailed below.
A Better Model for End-Stage Dementia Care
By the late 1990s, nursing homes in Switzerland had developed a reputation for costing too much for the level of care provided and being despised by both staff and residents alike (Monkhouse, 2003). Accordingly, administrators had begun to look around for alternative approaches to caring for the elderly and a newly-hired administrator for two nursing homes decided to try the Total Quality Management (TQM) model. This model is based on the assumption that when an organization is performing poorly, good management will eventually demand a complete change and effectively create a new organization. Under TQM the focus shifts to the needs of the clients and away from organizational needs. The implementation of TQM in the two Swiss nursing homes was painful, with many of the staff and managers quitting and clients going elsewhere after a substantial 30% increase in rates.
The administrator of the two Swiss nursing homes still had reservations about declaring TQM a total success, even though financial stability was restored and clients seemed happier with the services provided (Monkhouse, 2003). The missing ingredients seemed to be captured by a statement from the founder of the EA model, Dr. Thomas, who believed that the standard medical model of care was appropriate when intensive care was needed and activities related to living minimal. This would be true for any patient suffering from catastrophic trauma or acute disease, but many elderly patients requiring nursing home care still have a great need for socializing, self-efficacy, and being challenged by the activities they engage in, including many patients suffering from end-stage dementia. The EA model therefore seeks to end resident loneliness, helplessness, and boredom through the solutions of companionship, opportunities to care for others, and meaningful activities, respectively.
The transformation was remarkable (Monkhouse, 2003). Nurses and staff began visiting with residents to reduce feelings of loneliness; feelings of helplessness were lowered when residents became responsible for the care and feeding of pets and plants brought into the facility by nursing staff and family members; and boredom was addressed when residents were allowed to purchase equipment for starting and successfully operating a barber shop and beauty salon. Thing began to snowball as the nursing home became a beehive of activity night and day. The use of sleeping pills diminished after residents were permitted to keep their own hours, which eventually resulted in resident 'night owls' starting an all-night coffee shop. Staff sick days declined by 15%, bed occupancy increased to 97%, and staff turnover declined from a high of 60% to a low of 30%. While other nursing homes across Switzerland remained understaffed, the two nursing homes using the EA model had a waiting list three nurses long. Medication purchases declined by 20% and overall costs have not increased beyond what is spent at other nursing homes.
Unfortunately, empirical evidence supporting the efficacy of the EA model is minimal, at best. A recent systematic review of peer-reviewed research into the efficacy of person-centered care models revealed only three EA publications which met inclusion criteria (Brownie & Nancarrow, 2013). Two of the studies found evidence of improvements in boredom and helplessness using validated instruments, but another study discovered an increase in resident falls. By comparison, the research literature examining the efficacy of person-centered care for dementia patients is more substantial. Barbosa and colleagues (2014) quickly reviewed this literature in their introduction and concluded that person-centered care has been shown to reduce the use of chemical restraints, behavioral problems, and falls, while increasing patient self-efficacy. This short review acted as justification for a systematic review of the impact of person-centered care on staff stress, burnout, and job dissatisfaction. Although the evidence was mixed and insufficient to draw specific conclusions, the overall trend of the data is that person-centered care seems to have a positive impact on these three staffing concerns. These findings are consistent with the outcomes observed for the two Swiss nursing homes that implemented the EA model (Monkhouse, 2003).
The medical model and TQM model fails to adequately address the long-term psychosocial needs of patients suffering from dementia. By comparison, the EA mode represents a care philosophy that could potentially improve the quality of life for institutionalized dementia patients, while increasing staff job satisfaction. For these reasons, the EA model will be used as the basis for the dementia care health promotion plan described below.
Health Promotion Plan for End-Stage Dementia
The Department of Health (n.d.) for the Australian government has established the Live Longer! website to help reduce health disparities suffered by the indigenous peoples of that nation. Described on the website is a 10 step program for developing a community health plan. Based on their model there are four key elements that contribute to health outcomes: (1) work environment, (2) built environment, (3) lifestyle, and (4) health care systems. What follows is how this framework can be used to develop a health promotion plan for patients with end-stage dementia.
Step 1: Community Engagement
The administrator of the two Swiss nursing homes had engaged the community being served, with the understanding that the increased costs incurred with implementation of the TQM and EA models would have to be covered by public funds (Monkhouse, 2003). For this reason, the administrator established and maintained a working relationship with representatives from the local public health department. Under the TQM model the residents were invited to voice their opinions during bi-monthly meetings and family members were given a voice during recurring family night s, but under the EA model residents and family members were given more decision-making power concerning many aspects of the daily lives of residents. This transition led to the emergence of round-the-clock activities, pets, plants, visitors from the community, classes, business startups, and children populating the premises during the daytime, thereby creating a rich and stimulating social milieu for residents. Involving the family members of end-stage dementia patients in the care decisions will not only tend to increase the quality of care provided, but also assist family members with the dying process (Goodman et al., 2010).
Step 2: Research
The background information provided above on dementia and end-stage dementia represents preliminary research on this topic, but to develop an empirical foundation upon which to base a health promotion plan, additional research into dementia care is needed. The systematic reviews by Goodman and colleagues (2010), Brownie and Nancarrow (2013), and Barbosa and colleagues (2014) revealed the widespread limitations within the field of dementia care research, yet they were able to identify a few potentially useful findings. For example, the prevalence of adverse outcomes in nursing homes was reduced when dementia-specific care strategies were made available to the staff. The research strategy, however, should not be limited to peer-reviewed scientific journals, but include dementia patients and their families, community members, government representatives, and other non-profit stakeholders.
Step 3: Identify Target Group
Since improving the quality of dementia care for dying patients impacts the community as a whole, the community is the secondary target audience. The primary target audience would be the patients suffering from end-stage dementia and their loved ones.
Step 4: Identifying Stakeholders and Creating a Network
The traditional stakeholders are the patients, family members, patient advocacy organizations (e.g., Alzheimer's Society), government health agencies, insurers, and the health system, but implementation of the EA model would likely expand this to include many non-traditional stakeholders. For example, the care network could include veterinary services for in-house pets, high quality produce, dairy, and meat products delivered by local farmers, help with gardening from nurseries, live entertainment by local theatre groups, classes taught by local educators,…