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Improving Dementia Patient Caregiver Support, Education, and Training Interventions for the Purpose of Minimizing Caregiver Burden
Dana E. Mueller
A Master’s Paper submitted to the faculty of the University of North Carolina at Chapel Hill
in partial fulfillment of the requirements for the degree of Master of Public Health in
the Public Health Leadership Program
Chapel Hill Spring, 2016
Date
ABSTRACT
Dementia is a rapidly growing brain disease affecting over 5 million Americans, costing the U.S. almost $10 billion in 2014 and projected to rise to over $1.2 trillion by 2040 (Hurd, Martorell, Mullen, & Langa, 2013). Alzheimer’s disease, the most common form of all dementias, is the sixth leading cause of death in the U.S. However, the Centers for Disease Control [CDC] use the cause of death listed on death certificates for data and most dementia afflicted persons actually die from pneumonia and other comorbid conditions. For this reason, the number of people who die from Alzheimer’s or other dementias may be much higher than the CDC reports
(Alzheimer’s Association [AA], 2015). Other leading causes of death in the U.S., including breast cancer, stroke, prostate cancer, heart disease and HIV, have significantly reduced death percentages since 2000. However, deaths from Alzheimer’s alone have risen over 68% since 2000. This is due to improved research and treatments for other chronic conditions with no cure or preventive treatment for dementia (AA, 2015).
INTRODUCTION
Caregivers of dementia patients are most often close family relatives who care for their loved ones at home, with little to no disease education or financial or emotional support (Dang, Badiye, & Kelkar, 2008). Currently there are more than ten million Americans caring for
dementia afflicted loved ones; these caretakers experience Caregiver Burden [CB], defined as the physical, social, financial, and psychological effects experienced by informal caregivers.
Dementia caregivers report higher burden of care than other caregivers (National Alliance for Care, 2009) and research shows that CB directly affects premature patient institutionalization (Etters, Goodall, & Harrison, 2008). Due to a lack of an effective cure or method to slow disease progression, improving self-efficacy and coping strategies, providing disease education, and offering emotional support is the best treatment we can presently provide caregivers and their families. The cost of long-term facility care creates an economic burden to our healthcare system and poor patient and poor caregiver health costs are climbing (AA 2006).
Though a variety of tests exist to screen for dementia, there is no definitive diagnostic test for Alzheimer’s. In living patients, an Alzheimer’s diagnosis is based only on clinical
2003). Existing programs train for a specific challenge at a specific time point in disease
progression, usually a one-time event. There are currently no existing programs that address the training needs of caregivers over multiple timelines, nor how to respond to these needs.
Caregivers are asking for this kind of advanced training and education, as they are forced into a clinical role, often with no medical or healthcare background (Samia, Hepburn, & Nichols, 2012).
LITERATURE REVIEW
Definition and Prevalence
According to the National Institute on Aging, dementia is a brain disorder that affects communication and performance of daily activities; Alzheimer’s disease is a form of dementia that specifically affects parts of the brain that control thought, memory, and language. Though the two terms are used interchangeably in public media, healthcare, and government funding decision-making, Alzheimer’s only accounts for 50 to 70% of all dementia cases (CDC, 2015). Due to public awareness of Alzheimer’s and because it is the most common form of dementia, statistics and data tend to be Alzheimer’s specific. As a result of this overlap throughout
empirical literature, this paper will refer to dementia and Alzheimer’s concurrently, respectful to the fact that dementia prevalence is considerably higher. Dementia is a disease which
encompasses many other diseases, such a Lewy Body Dementia, Vascular Dementia, Frontotemporal Dementia, dementia from alcoholism, and Parkinson’s disease dementia. Doctors use screenings such as blood tests, mental status evaluations and brain scans to determine the cause; however, when a dementia diagnosis is given, that person is being diagnosed with the syndrome, not the cause of the syndrome (Alzheimers.net, 2016).
Alzheimer’s disease is a chronic neurodegenerative disease. Although dementia is not a normal part of aging, risk factors of dementia include aging and a family history of dementia.
Determinants of dementia include education and occupation; cardiovascular risks such as
from Alzheimer’s, with a new diagnosis every 67 seconds (AA, 2015), and is the sixth leading cause of death in the U.S. By 2050, this number will more than triple in America (CDC, 2014).
Symptoms and Stages
Progression of Alzheimer’s varies in definition depending on the source. Clinicians diagnose the disease by different criteria than the staging process researchers list in literature. This staging process in research begins with stage one, in which the individual does not
experience any symptoms, even though the whole brain is experiencing changes (Bynum, 2014). This process can start up to twenty years before symptoms are noticeable, delaying early
and improved quality of interpersonal relationships produces a delay in institutionalization of dementia patients (Cohen et al., 1993). While these symptoms and stages follow the same course for every individual, the timeline of each stage can be very different, making this constantly changing disease difficult to predict for caretakers and clinicians.
Economic Burden
Alzheimer’s disease and related dementias result in significant social, economic, and health costs for patients, individuals, and the health system. The most recent estimate of Alzheimer’s total annual costs in the United States was $157-215 billion for patients over
seventy, including both in-home and facility care. By 2040, costs for these patients will increase to $1.2-1.6 trillion (Hurd, Martorell, Mullen, & Langa, 2013). Dementia patients differ from other chronic disease patients in that they require increasing support over time from health and social care systems, as well as family caregivers. Approximately 75 percent of those diagnosed with Alzheimer’s or dementia will spend time in a nursing home at some point during the course of their disease (Kaiser, 2013). As of 2012, sixty percent of all nursing home residents suffered from some sort of dementia (Genworth Financial, 2013), and there are few options for final stage Alzheimer’s patients aside from the skilled care they receive in a long-term nursing facility (Gaugler, Kane, Kane, & Newcomer, 2005). Medicare covers the majority of medical costs in Alzheimer’s patients simply because most patients are over the age of 65; however, when long-term nursing care is needed, Medicaid becomes the primary payer after patients spend down their assets. This places a significant financial burden on families and individual state budgets
Alzheimer’s or dementia (Genworth Financial, 2013). In a study on Medicare claims data from 2013, researchers found that this is partly due to the high rates of avoidable hospitalizations for comorbid conditions, compared with individuals without dementia. This study also saw three times the cost to Medicare for Alzheimer’s patients, who are two to three times more likely to be hospitalized with ailments, versus their non-dementia counterparts (Bynum et al., 2004).
Shortage of healthcare workers. In addition to cost factors associated with the growing dementia population, the U.S. is simultaneously experiencing a shortage of healthcare
professionals in the field of geriatrics; forcing general physicians, with little to no training in this disease, to care for dementia patients (Bynum, 2014). If patients do not have a friend or family member to rely on for informal care, they are dependent on the care of paraprofessionals which include personal care assistants, home health aides and nursing assistants. These
paraprofessionals are mostly women and because of behavior symptoms in dementia patients, these women experience higher workplace violence than any type of worker in the United States (Hall, Hall, & Chapman, 2009). In addition, median pay for these workers is $9.57 per hour, usually with no benefits (Bureau of Labor Statistics, 2014).
Caregiver Burden
Caregiver burden (CB) is the term used to describe the overall physical, psychological, emotional, and financial toll taken by the process of caregiving and is related to poorer patient outcomes and premature institutionalization. The most common screening tools for CB include the Zarit Burden Interview (ZBI), the Caregiver Strain Index (CSI) and the Screen for Caregiver Burden (SCB). All of these questionnaires identify those as risk for CB and show high internal consistency, reliability, and construct validity (Dang et al., 2008).
Caregiving requires an average of 70 hours of care a week, in an “on-call” role 24 hours a day, seven days a week, with limited relief (Dang, et al., 2008). Patient lifespan from diagnosis is between 2 and 20 years, requiring a five year commitment for caretaking responsibilities from loved ones, who provide over 80% of all in-home dementia care in the United States
(McConaghy & Caltabiano, 2005; AA, 2006).
caregiver, and excessive medical costs for poor caregiver health (Moore, Zhu, & Clipp, 2001). Caregiving obligations make working outside the home almost impossible, with 50% of
caregivers shortening work hours and 18% quitting their jobs altogether (Dang et al., 2008). Psychological effects can be seen in higher depression and anxiety rates among caregivers with a 15-32% prevalence of depressive disorder (Cuiipers, 2005). Interestingly, placement of the loved one in a nursing home does not lower the risk for developing an affective disorder and pre-caregiving mental status does not return until three to twelve months after the death of the care recipient (Robinson-Whelen, Tada, MacCallum, McGuire, Kiecolt-Glaser, 2001). Literature shows that CB has been associated with earlier Nursing Home Placement [NHP] for persons with dementia. Significantly higher burden scores, more family dysfunction, and decreased social support is seen in caregivers actively looking for NHP, compared with caregivers who did not seek NHP (Spruytte, Van Audenhove, & Lammertyn, 2001). Care choices include adult day services, short term respite care, assisted living, and nursing home care; however nursing home care is the only viable choice currently for patients diagnosed with end-stage dementia. While delaying long-term care has positive economic and social implications (Pinquart & Sorensen, 2006), many caregivers are elderly themselves and caregiver safety needs to be considered in the NHP decision (Buhr, Kuchibhatla, & Clipp, 2006).
Caregiver coping strategies
and use problem-focused coping. Emotion-focused coping deals with the feelings associated with major strain, while problem-focused coping confronts the reality of major strain by dealing with the tangible consequences; and a mix of these two strategies were found to be most
effective (Almberg et al., 1997). While collecting data in a study conducted by Papastavrou et al. (2007), men caregivers always had another family nearby for support, and this availability may contribute to lower burden. REACH, a large, ethnically diverse randomized trial, found that women are more responsive to interventions than men; and caregivers with a high school
education or less have shown to be more responsive to the interventions than caregivers with higher education (Gitlin et al., 2003). Culture is a statistically significant factor that influences CB, and with perception differences regarding familial responsibilities, distress and burden may be expressed differently among ethnic backgrounds (Adams et al., 2002). For instance, greater depression and stress is reported by Caucasian caregivers than African American [AA]
caregivers; qualitative studies suggest that CB is the same in both groups, however AA
caregivers express it differently (Calderon & Tennstedt, 1998; Haley et al., 2004). Asian culture places a greater sense of responsibility on residents to care for older generations, and Chinese and Korean caregivers score higher in depression and burden compared to Western society caregivers. This may be due to less sharing of family problems in Asian culture, leading to less social and emotional support for Asian caregivers (Torti et al., 2004).
Caregiver Interventions
Miller, Clay, & Fox, 1999: Shelton, Schraeder, Dworak, Fraser, Sager, 2001). Research shows that caregivers, especially women, need training interventions that teach them how to cope with their own feelings to better understand and manage the behavior of the patient (Papastavrou, Kalokerinou, Papacostas, Tsangari & Sourtzi, 2007). Also effective are interventions that promote caregiver self-efficacy. The literature suggests that the attribute of self-efficacy significantly affects CB coping strategies; influencing caregivers’ experience of CB, leading to taking time for themselves, decreasing burden, and achieving greater quality of life (Gonyea, O’Connor, Carruth, & Boyle, 2005;Coen et al., 2002). Patient behavioral problems and caregiver depression and stress were significantly reduced with family intervention programs consisting of education, stress management, and coping skills (Marriot, Donaldson, Tarrier, & Burns, 2000). Gitlin et al. (2003) conducted one of the largest and most ethnically diverse randomized trials with this focus, Resources for Enhancing Alzheimer’s Caregiver Health (REACH), looking at effective interventions for dementia caregivers. REACH used
training for these specific problems (Callahan et al., 2006). This is especially important because these behavioral disturbances are one of the largest contributing factors to CB, produce more physical stress on caregivers, and are direct predictors of NHP (Beeri, Werner, Davidson, & Noy, 2002; Sink, Holden, & Yaffe, 2005; Hope et al., 1998).
Education
Education interventions that educate caregivers on simple environment changes, such as assistive devices in the bathroom, special locks on outside doors, and patient identification bracelets, produce a reduction in the institutionalization of a family member with dementia (Spruytte et al., 2001). This education is more effective if it is ongoing as the disease progresses and covers function, such as dressing and bathing, as well as expediting group support and healthy sleep cycles (Pinquart & Sorensen, 2006). Furthermore, research is showing that family members are requesting this kind of education and advanced training from providers; along with real time question and answer sessions with other caregivers via online chat boards. Current interventions tend to be one-time events focused on one element or time point in the disease. Response and training for the ongoing needs of caregivers has not yet been tackled in federal or state programs, even though progression and change of the disease lasts for many years
caregiver’s own well-being in the clinical role he/she now occupies (Samia, Hepburn, & Nichols, 2012). This program has reduced caregiver burden, depressive symptoms, negative reaction to disruptive behavior, and overall distress (Ostwald, Hepburn, Caron, Burns, & Mantell, 1999; Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007). This program was adapted in Maine to reach rural caregivers statewide, with the support of several state and government collaborators. Testimonials from caregiver participants report that the “planning provided a sense of control and order…before you are surprised by it.” Caregivers wanted to know how to prepare for the end of life. What caregivers experienced in this program was a sense of mastery in their role as they kept seeking more personal control with each transition. As “changing roles call for varied and multiple interventions across the caregiver career”, caregivers went beyond the
psychoeducation program, expressing a need to share with each other (Samia et al., 2012). This is consistent with Dang et al.’s (2008) suggestion that caregiver education must contain three things to be effective: information about disease stages and what to expect, coping strategies and how to deal with difficult patient behaviors, and advanced care planning to prevent future
financial or decision-making disputes. Support
One area of possible intervention that has been used in other areas but not tested
DISCUSSION Legislation for Change
The National Alzheimer's Project Act, signed into law by Congress and President Obama, has brought recognition to the negative effects on the health care system, the federal budget, and families facing Alzheimer’s and related dementias. As a result of this law, the Secretary of Health and Human Services is forced to create a plan to address efforts made by the federal government in research, care, institutional services, and home and community-based programs (USDHHS, 2015). As result of this Act, the North Carolina General Assembly passed Senate Bill 466 in 2013, creating an Alzheimer’s Disease Task Force in the Department of Health and Human Services [DHHS] (Establish Alzheimer's Disease Task Force, 2013). This task force began meeting monthly for ten months beginning March 2015. Meetings are being held by the North Carolina Institute of Medicine in partnership with the NCDHHS Division on Aging and Adult Services, AARP NC, Alzheimer’s NC, the Alzheimer’s Association, and LeadingAge NC, collaborators and stakeholders with the common goal of addressing effects of this disease
Hopefully, the use of Alzheimer’s specific language in the bill will not affect access to benefits for all dementia sufferers and their families and this task force will address disease
differentiation in their report.
Dr. Dan Blazer, MD, PH, PHD recently spoke at the UNC campus about his role as chair on a new IOM report titled “Cognitive Aging: Progress in Understanding and Opportunities for Action”, released April 2015. Dr. Blazer’s credentials include prominent researcher,
epidemiologist, and psychiatrist with a longtime career at Duke University; however he has no background in cognitive aging. He was chosen specifically for his lack of knowledge in this area to eliminate bias in the committee. Though his role for the IOM Report was to focus on
the patient’s medical record. This Act also recognizes that early diagnosis and care planning are direct contributors to the improved long-term health of caregivers (AA Policy, 2016).
Interventions
Caregivers respond best to behavior specific education and strategies, making
individualized interventions vital to success. Effective intervention solutions focus on problem-solving and incorporate multi-component factors, rather than singular basic strategies. Group access and interaction is also a successful way for caregivers to share strategies that work with loved ones that are problem or event specific. This access to other caregivers in similar situations is important in combatting high rates of depression experienced due to isolation experienced by caregivers. Frequency of caregiver interventions will require significant change, as current support treats dementia caregivers the same as cancer or other chronic disease
caretakers. These interventions touch the families once or twice with disease education and coping strategies but do not address the challenges of dementia disease advancement. Due to the deteriorating progression of patients over time, community-based education and coping
interventions should be ongoing to meet the needs of families who face diverse challenges every day.
Leadership
and be mindful to the creativity that new policies will require. By stepping out of the action, leaders in policy can obtain a clearer view of what needs to be done, lessening the chance of making wrong decisions about how to intervene (Heifetz & Linsky, 2002). Dementia, with its rapid increase in prevalence and severity, will depend upon unique and advanced interventions that do not mirror existing chronic disease interventions. Innovative treatments that support the emotional and physical needs of caregivers will require stakeholder collaboration and policy change at every level, in order to implement successful programs.
RECOMMENDATIONS & CONCLUSIONS
Dementia-specific caregiver support programs that reach diverse populations will need to rapidly multiply to catch up with the growing aging population. Careful examination of
successful approaches, such as Savvy in Maine, will be vital in the creation of new caretaker intervention programs across the country. Incorporating emotion work as a coping strategy to address caregiver dissonance may prove to be an innovative method to deal with the difference between the feelings and outward behavior of caregivers toward their loved ones; especially since dissonance and the resulting depression are empirical predictors of institutionalization. Basic education in simple environmental changes can drastically reduce caregiver stress by increasing efficacy in the area of patient safety and behavior management. Community programs will need to individualize interventions to the various coping strategies and personal characteristics of each family, with the understanding that there cannot be a universal approach for everyone. The caregiving trajectory is similar to varying stages in a career; offering support and education in each stage is imperative to the success and well-being of both caregiver and patient. Most important to caregivers is the “goal to have some more strategies in your tool belt” (Samia et al., 2012).
provide early treatment and education for families. Twice a year screenings will identify burden in caregivers, making treatment more readily available. Studies report many disconnects
between physician support and caregiver needs; these include referral to support services,
emotional support, and a lack of disease information after diagnosis (Dang et al., 2008). Medical office personnel should be educated in these areas to make the physician’s job easier and to offer families the critical support they require. Researchers have discovered that the heart and the brain are more closely linked than previously thought, and cardiovascular risks are linked to cognitive aging and certain dementias. A continued focus on reducing these lifestyle risks among Americans may slow progression. Government initiatives with a focus on increasing enrollment in gerontology programs would be helpful to prepare for the immediate future need. Providing benefits, increasing pay and assuring workplace safety measures for paraprofessionals will alleviate high turnover and boost support for families and providers.
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