Facing Dementia: Integrating Palliation into All Aspects of Care

Dementia is often viewed as a simple consequence of aging. It is also often viewed as a cognitive condition rather than a physiological condition—basically a “senior moment” of forgetfulness gone horribly wrong. Both of these views of dementia are inaccurate. Although memory loss is an early symptom, dementia can be more accurately defined as an irreversible failure of the brain. Dementia is, in fact, a terminal disease. And like some forms of cancer or progressive heart disease, dementia results in physiological changes that eventually lead to death.

Dementia is a progressive and incurable illness (Chang et al., 2009; Hancock et al., 2003; Willis & Makaza, 2008). However, unlike many other life-limiting illnesses, the progression of dementia does not follow a set linear path. As with any disease process that affects cognition, the progression of dementia is uncertain and varies between individuals. Patients with severely disabling dementia can expect to live much longer than patients with other terminal chronic diseases (Ferri et al., 2005).

Dementia is fast becoming a serious public health concern. According to Ferri et al. (2005) and Hancock et al. (2003), an estimated 24.3 million people worldwide have dementia, and 4.6 million new cases are diagnosed every year. This equates to one new case of dementia every 7 seconds. These authors project that the number of dementia cases will double every 20 years, affecting an estimated 42 million people by 2020 and increasing to 81.1 million people by 2040. Given the large number of people currently diagnosed with dementia, the aging of the population, and the projected number of patients who will be diagnosed with dementia in the coming years, perhaps it is time to rethink this disease and time for nurses to recognize and encourage a paradigm shift in the way dementia is perceived and treated.

Nurses are “the primary point of contact between patients and the world of healthcare” (Chunlaka, 2010, p. 2). In view of the predicted increase in the number of patients with dementia, it is imperative that nurses enhance their knowledge in caring for this population (Chang et al., 2009; Hunt, 2007). In particular, education should be provided to nurses regarding the behavioral symptoms associated with dementia (Hancock et al., 2003; Hunt, 2007), pain assessment (Chang et al., 2009; Hancock et al., 2003; Mitchell et al., 2009), as well as nutrition and safety (Hancock et al., 2003).

Another area of educational opportunity for nurses is to understand dementia as a terminal illness. There is considerable literature to support this paradigm shift in the way dementia is perceived (Chang et al., 2009; Hancock et al., 2003; Mitchell et al., 2009; Willis & Makaza, 2008). Research suggests that dementia is one of the leading causes of death in the United States, yet it continues to be rarely thought of as a terminal disease (Mitchell et al., 2009). This lack of understanding of the terminal nature of dementia frequently results in overly aggressive treatment during the end stage of the disease. These aggressive measures are often extremely burdensome, physically and emotionally, to patients and families. It has been shown that during the terminal phase of dementia, patients experience distressing symptoms comparable to those experienced by patients with cancer (Hughes, Robinson, & Volicer, 2005; Mitchell et al., 2009); however, these symptoms often go unrecognized and untreated because they are misidentified as behavioral in nature. By considering dementia as a terminal illness, nurses can initiate more appropriate palliative care measures.

The need for a better understanding of the nature of palliative care in general, as well as its application in dementia, has been well documented (Chang et al., 2009; Hancock et al., 2003; Hunt, 2007; Mahon & Sorrell, 2008; Rodriguez, Barnato, & Arnold, 2007; Ryan & Ingleton, 2009; World Health Organization, 2007). There is considerable literature to support nursing's unique and pivotal role in the provision of palliative care (Bryon, Gastmans, & de Casterlé, 2008; Gott et al., 2009). There is currently a prevalent misconception held not only by the general public but also by many in the health care field that palliative care is synonymous with hospice care (Hancock et al., 2003; Mahon & Sorrell, 2008; Rodriguez et al., 2007). This downstream thinking has resulted in palliative care modalities being used only at the very end of life. Literature supports the application of a more upstream approach, with early initiation of palliative care services in patients with life- limiting illnesses (Chang et al., 2009; Hancock et al., 2003; Mahon & Sorrell, 2008; Rodriguez et al., 2007).

The concept of palliation is not new to nursing. If anything, it is a reflection of nursing's view of the health continuum in which health equates to a state of well-being, as opposed to the biomedical model in which health is the absence of disease. Palliative care is true patient-centered care. It not only provides symptom relief but also encourages a holistic approach emphasizing quality of life and involving patients and families at all levels of planning (Hughes et al., 2005). Nurses are uniquely positioned to encourage candid conversations between the medical team and the family unit, effectively bridging the gap between biomedical science and holistic, patient-centered care. By initiating dialogue about early referral to palliative care services, nurses are able to educate the family unit as well as the medical team about the holistic nature of palliation and the inherent benefits of early palliation. These benefits include increased quality of life for the patient and increased opportunities for memorable moments for the family. Through education, nurses are able to help families discern the true nature of their loved one's behavioral symptoms, such as pain and fear, and provide the family with the knowledge and means to mitigate these symptoms.

Nutrition is a major concern for many families of patients with dementia and frequently results in hospitalization for diagnoses such as failure to thrive or aspiration pneumonia. Nurses are able to provide sound, common-sense advice to address these concerns by educating families about the physiological changes associated with dementia, including decreased appetite and swallowing difficulties. By teaching families simple positioning techniques and modification of the consistency of food, as well as encouraging frequent, small, densely caloric, and high-protein meals, nurses are able to delay or even eliminate the need for aggressive interventions such as feeding tubes. These educational measures, in turn, will help to reduce the need for hospitalization of patients with dementia, allowing them to remain in their familiar home environment, surrounded by their loved ones.

Nurses need to recognize and embrace the terminal nature of dementia to foster increased understanding of the disease process within the medical community and the public at large. According to Mok et al. (2010), health care professionals, and particularly nurses because of their unique relationship with patients and families, are in a position to “enhance, maintain, or destroy hope in patients [and families] through their attitudes, behaviors, and ways of communication” (p. 877). The application of a palliative care model has been shown to increase hopefulness in patients and families (Mok et al., 2010). Through the early initiation of palliative care services in the patient with dementia, nurses are able to engender a sincere hope for a peaceful and meaningful journey toward the end of life for patients and their families.