Palliative Care and Dementia

Sabine Joosten/Hollandse Hoogte/Redux Palliative Care and Dementia Dementia is a highly prevalent, progressive, life-limiting illness for which there is no cure. Palliative care is a specialized area of healthcare that focuses on improving the quality of life for individuals with life-limiting diseases. Symptoms such as disorientation, tension, and anxiety occur in patients with dementia at moderate to severe levels as they approach the end of their lives, as well as other common symptoms found with cancer patients, yet the dementia population continues to be unrecognized for their need for palliative care. This article examines current literature with respect to palliative care for patients with dementia. D with life-limiting diseases, on family-centered care ementia is a progressive, life-limiting illness and the assessment and management of sympfor which there is no cure (Roberts & Gastoms, and on the emotional and spiritual support pard, 2013) and it is estimated to have a global needed by the individual and family (Chang et al., prevalence of almost 36 million (Ryan et al., 2009). Many patients with dementia receive insuf2012). Palliative care is a specialized area of ficient symptom management and healthcare that focuses on improvunnecessary interventions as they ing the quality of life for individuals Carrie Scott, BSN, RN 466 Home Healthcare Nurse www.homehealthcarenurseonline.com Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. approach the end of life (Pinzon et al., 2013; Torke et al., 2010). Symptoms such as disorientation, tension, and anxiety occur in patients with dementia at moderate to severe levels as they approach the end of their lives, and other common symptoms found with cancer patients, yet people with dementia continue to be unrecognized in their need for palliative care (Pinzon et al., 2013). Despite the benefits palliative care could offer those with advanced dementia, this level of care is offered almost exclusively to patients with malignant diseases (Rowlands & Rowlands, 2012). The purpose of this manuscript is to examine the current body of literature with regard to patients with dementia and palliative care. The goal of a national survey conducted by Torke et al. (2010) was to establish how many hospice and palliative care programs were servicing patients with dementia, the needs and services provided, and to determine the barriers associated with caring for this population. A random sample of hospice and nonhospice palliative care programs in the United States was selected and contacted by phone. Of the programs that provided nonhospice palliative care, 72% had provided palliative care to at least one patient with a primary diagnosis of dementia within the last year. Of programs that offered hospice care, 94% had provided services to a patient with a primary diagnosis of dementia. When asked about barriers, the most commonly cited were reimbursement difficulties, lack of awareness of palliative care for patients with dementia by both caregivers and referring providers, lack of caregivers, greater need for formal respite services, and difficulty with determining prognosis. Needs and services provided included symptom management, developing a plan of care for end of life, and family support. There are two limitations of this study. Palliative and hospice agencies that did not provide services to people with dementia may not have responded to the survey resulting in response bias. Second, the researchers did not quantify the number of patients with dementia served by these agencies. We know only they served at least one patient with this diagnosis. The purpose of a qualitative study by Ryan et al. (2012) was to explore issues related to end-oflife care for patients with advanced dementia in Ireland. Participants included 58 medical, nursing, and allied health palliative care professionals. Three questions were posed to two focus groups: (1) Does a patient’s diagnosis influence end of life? (2) Are there any specific issues relating to people with dementia and the end-of-life care they receive? (3) Is it more difficult to achieve palliative care for people with dementia? Results suggested there was poor understanding of patients with dementia as candidates for palliative care, and, in any event, inadequate resources to extend this type of care to this population. Participants did not view patients with dementia as having the same palliative care needs as oncology patients, particularly in the area of pain. The participants pointed to difficulties assessing and managing patients who cannot communicate their needs. They also noted the need for, and benefit of, collaboration among professionals to achieve optimal outcomes for patients with dementia. A qualitative study by Chang et al. (2009) sought to understand the challenges healthcare professionals face in meeting the needs of patients with advanced dementia in nursing homes. Data were collected in Australia from five groups and 20 Quality of life until death is the focus and mission of palliative care, and for people suffering from dementia and their loved ones, the road can be long. vol. 32 • no. 8 • September 2014 follow-up individual interviews from 2003 to 2006. The participants of the five groups included general practitioners, registered nurses, managers associated with a palliative care team, a social worker, a recreational therapist, and a nursing assistant. The results described challenges in terms of the complexity of care needed for patients with advanced dementia and the need for specific knowledge and skills with regard to assessment and care, including pain and symptom management. Participants who were not involved in palliative care identified the need for better understanding of what palliative care is and what it can offer patients and caregivers (Chang et al., 2009). A literature review by Birch and Draper (2008) examined the challenges of delivering palliative Home Healthcare Nurse Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 467 care to older people with dementia and some strategies for overcoming the barriers that are present at the end of life. A review of English language literature on older patients with dementia and the terminal phases of the illness published between 1996 and 2008 was conducted. The literature identified that dementia is rarely seen as a palliative illness, mostly because of the long trajectory of the illness and because physicians are generally overly optimistic when predicting mortality. Discussion of deterioration is avoided in this population and because of this there is significant evidence of poor pain and symptom control at end of life. The authors reinforced the importance of palliative care for people with dementia and the need for continued research with a focus on the final days to help ensure quality and comfort at the end of life. Johnson et al. (2009) examined how communication issues may act as a barrier to people with advanced dementia receiving palliative care. Six focus groups with a total of 34 participants were conducted in Australia. Participants included palliative care specialists, dementia specialists, palliative care volunteers, general practitioners, facility staff, and family caregivers. The factors that appeared to lead to poor utilization of palliative care for patients with advanced dementia were the inability of caregivers to recognize endof-life symptoms because of problems communicating with the patient, and the difficulty of patients with dementia at end of life to express wishes for their care. This often led to transfers to acute care and unnecessary suffering for the patient. A continued lack of recognition of dementia as a terminal illness that would benefit from a palliative care approach was also identified, as well as the inability to recognize symptoms of—and a general lack of understanding of—the final stages of advanced dementia. The results suggested that insufficient knowledge of the dementia disease progression and poor management of symptoms resulted in an increase in suffering at the end of life. The focus of a cross-sectional study performed in Germany was on quality of care and symptom burden of people with end-stage dementia (Pinzon et al., 2013). A random sample of surviving relatives of 5,000 persons who died between May and August of 2008 in Germany were contacted and asked to complete a questionnaire. The survey asked families where the 468 Home Healthcare Nurse place of death was and what the preference was, what disease the patient had, the quality of care they received, whether inpatient or outpatient, and what kind of symptoms were a burden to their loved one. There was a response rate of approximately 36% and the analysis was based on data from the responses from 310 family members of patients with dementia and 931 responses from family members of patients with other diseases. The data revealed that the majority of the patients with dementia suffered from symptoms such as confusion/disorientation, appetite loss, anxiety, dyspnea, and pain. Family members reported poor quality of care with limited treatment of symptoms, as well as lack of support from an emotional standpoint, both for themselves and for their loved ones. The study suggested that patients with dementia have many of the same, if not all of the same symptoms at the end of life as patients with malignant disease processes, and require the same supportive care and interventions that the palliative care specialists can provide (Pinzon et al., 2013). Roberts and Gaspard (2013) conducted a 4-hour interprofessional workshop for healthcare providers who cared for patients with dementia in a nursing home in British Columbia, Canada. The goals of the workshop were to educate healthcare providers on the life-limiting nature of dementia and methods to incorporate palliative care measure in routine care of people with dementia, and to promote discussion among the healthcare providers on death and dying. The participants identified five major areas of increased knowledge: comfort, palliative care, care of families, talking about death, and the importance of team effort. Workshop participants took pre- and posttests and showed an increase in knowledge and confidence in the care of patients with dementia, an increase in understanding of palliative care, and what the palliative approach can offer this population. The authors recognized that education alone is not enough; clinical leaders need to provide leadership and mentoring to direct and support direct care providers. It has been consistently demonstrated throughout this review of the literature that dementia is often not viewed as a life-limiting illness (Birch & Draper, 2008; Johnson et al., 2009; Pinzon et al., 2013; Roberts & Gaspard, 2013; www.homehealthcarenurseonline.com Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Rowlands & Rowlands, 2012; Ryan et al., 2012; Torke et al., 2010), and that among healthcare providers there is a lack of training and knowledge regarding the trajectory of this disease and assessment of symptoms that occur with its decline (Birch & Draper, 2008; Chang et al., 2009; Harris, 2007; Johnson et al., 2009; Rowlands & Rowlands, 2012; Ryan et al., 2012; Torke et al., 2010). As a result of this knowledge deficit, people with dementia continue to suffer throughout the trajectory of what can be a very long disease; and in the last few months of their lives can suffer from high levels of pain, dyspnea, confusion, and agitation (Birch & Draper, 2008; Chang et al., 2009; Johnson et al., 2009; Pinzon et al., 2013; Ryan et al., 2012). Palliative care is provided by a team of specialists that works collaboratively to support patients and caregivers during any stage of a serious illness, whether the goal is curative treatment or comfort. Quality of life until death is the focus and mission of palliative care, and for people suffering from dementia and their loved ones, the road can be long. There are needs for assistance with treatment choices, emotional and spiritual support, and education on symptom control as the disease advances. The literature examined in this article suggests that there is a need for increased awareness by, and education of, referring healthcare providers on the benefits offered by a palliative care approach for patients with advanced dementia. Hospice and palliative care can do much to ease the suffering of those with dementia. Healthcare providers in hospice and palliative care programs should recognize dementia as a terminal disease, market their services, and educate referring providers on how a palliative care approach can serve to better meet the needs of people with this devastating disease. Carrie Scott, BSN, RN, is a Hospice Nurse, Inpatient Hospice, Mercy Hospice, Troy, Michigan. The author declares no conflicts of interest. Address for correspondence: Carrie Scott, BSN, RN, 1111 West Long Lake Rd., Suite 102, Troy, MI 48098 ([email protected]). DOI:10.1097/NHH.0000000000000123 REFERENCES Birch, D., & Draper, J. (2008). A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. Journal of Clinical Nursing, 17(9), 1144-1163. doi:10.1111/j.1365-2702.2007.02220.x Chang, E., Daly, J., Johnson, A., Harrison, K., Easterbrook, S., Bidewell, J., ..., Hancock, K. (2009). Challenges for professional care of advanced dementia. 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Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff. Palliative Medicine, 26(7), 879-886. doi:10.1177/0269216311423443 Torke, A., Holtz, L., Hui, S., Castelluccio, P., Connor, S., Eaton, M., & Sachs, G. (2010). Palliative care for patients with dementia: A national survey. Journal of the American Geriatrics Society, 58(11), 2114-2121. doi:10.1111/j.1532-5415.2010.03141.x Look for these exciting articles and features in our next issue! ✹ Medication Reconciliation ✹ What You Need to Know About Influenza ✹ Electronic Cigarettes: A Safe Alternative or Potential Poison? ✹ Heart Failure and Depression ...all this and much, much more! vol. 32 • no. 8 • September 2014 Home Healthcare Nurse Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 469