Research topic: Appraising stress for home visited caregivers of persons with dementia
Problem: Over 5 million Americans are living with Alzheimer’s, and nearly 16 million baby boomers are likely to develop the disease by the year 2050. They will need someone to care for them. The people caring for them may experience stresses that affect their health and will affect how they care for persons with dementia.
Background: The existence of caregiver stress and its negative health effects have been well documented. However, little is known about how home visits influence caregivers stress levels.
Significance: Approximately 70% of people with dementia or cognitive impairment are living at home. Caregivers are at a high risk for stress and other complex and diverse health related problems. It is estimated that the cost of caring for persons with Alzheimer’s and other dementias in 2013 was $203 billion and will increase to $1.2 trillion by mid-century. Therefore, evaluating caregiver stress and medical home visits to persons with dementia is important before the consequences of caregiver stress lead to mounting medical expenditures. These increased expenditures will affect families, communities and the nation.
Methods: A cross-sectional convenience sample of all gender between the ages of 19 – 89 years old will be recruited from the homes visited for monthly medical evaluations by the nurse practitioner. Frequency statistics and measures of central tendency (means, medians) will be employed to describe the sample. Relationships between the variables will be explored using bivariate measures of association (Pearson’s r, Spearman’s rho as well as four-fold table analysis employing Odds Ratios and phi coefficients). Linear multiple regression modeling (F tests; fixed model, R² deviation from zero) will be used to assess the association of predictor variables (non-continuous predictors will be coded as dichotomous “dummy” variables with values of 1 and 0) with the outcome variable of stress. With a sample size of 100 and a maximum of nine predictors, a linear multiple regression analysis will be sensitive to overall medium to large effect size of f2=0.172 with a power of .8 with an alpha of .05. Individual bivariate regressions will be sensitive to effect sizes of r=0.243. Confidence Intervals (95%) for the population values of continuous variables will be within + 0.2SD of the sample estimates and will be within + 4.9% of the estimates obtained from categorical variable estimates. The participants will be identified by running a query in the New Horizons Family Clinic electronic health record to identify patients with any type of dementia. Two hundred charts using a random number generator will be randomly selected from that pool. The surveys will be mailed to the participants in a self-addressed-stamped envelope (SASE). The informed consent will be mailed in a separate SASE. Normally, only 50% people survey will respond to a survey. Therefore, 200 letters will be mailed. The person must be a caregiver for more than 6 months. The caregiver must write and understand English. The participant cannot have a mental illness. The Kingston Caregiver Stress Scale will be utilized to evaluate caregiving issues, family issues and financial issues of the caregiver. The search engines PubMed and CINHAL will be used to review literature, published between 2008- 2014.
Findings: These findings will examine stress in people caring for others with dementia. The results may help identify caregivers’ stress and allow the researcher to find ways to decrease the caregiver stress. It may also identify if there is a positive relationship between caregivers stress and receipt of home visits to patients with dementia.
Key words: caregiving, dementia, house call, home visit, patients with Alzheimers
CHAPTER ONE- INTRODUCTION
Stress for home visited caregivers of persons with dementia is a problem that requires urgent measures. Dementia describes wide array of symptoms. It is a severe decline in mental ability interfering with the normal functioning of an individual. The condition leads to memory loss that hampers the thinking capability of an individual reducing the ability to perform everyday activities. Other problems associated with this condition include, mental agility, language problem, judgment and understanding difficulties. Alzheimer’s is the most severe and common disease that accounts for around 60 to 80 cases (Alz. Org, 2014). The second most common type of dementia is vascular dementia that occurs after stroke. Some conditions or symptoms of dementia are reversible like thyroid problems.
Alzheimer’s Association (2014), estimate that 15.5 million family members provide an estimate of 17.7 billion hours of unpaid care to people suffering from Alzheimer’s and other kinds of dementia. Caregivers are both men and women and face various difficulties as they render these services to the patients. They experience physical and emotional stress. For instance, in 2013, caregivers incurred an estimate of additional $9.3 billion in terms of health on their own. According to Alzheimer’s Association (2014), most of the caregivers, above 60 percent cite emotional stress and depression as the highest effects.
Background of the study
Different studies have documented information about stress among caregivers as well as health effects. However, little is known on how home visits influences caregivers stress levels.
Statistics indicated that over 5 million Americans are living with Alzheimer’s, and nearly 16 million baby boomers are likely to develop the disease by the year 2050. They will need someone to care for them. The people caring for them may experience stresses that affect their health and will affect how they care for persons with dementia.
Objectives of the study
The objective of the investigator is to evaluate caregiver stress and examine if there is a positive relationship between caregiver stress and the delivery of home visits for persons with dementia. It is hoped that the outcome of the research will pave the way for further exploration into ways to develop alternate mechanism for managing caregivers stress.
Significance of the study
Approximately 70% of people with dementia or cognitive impairment are living at home. Caregivers are at a high risk for stress and other complex and diverse health related problems. It is estimated that the cost of caring for persons with Alzheimer’s and other dementias in 2013 was $203 billion and will increase to $1.2 trillion by mid-century. Therefore, evaluating caregiver stress and medical home visits to persons with dementia is important before the consequences of caregiver stress lead to mounting medical expenditures. These increased expenditures will affect families, communities and the nation. Therefore, this study is essential, as it will provide insights to the conditions under which he caregivers work that triggers stress among them.
The findings will provide a basis to guide for further research and pilot programs that can ultimately alter the provision of effective and efficient intervention to decrease caregiver stress in caring for persons with dementia.
CHAPTER TWO: LITERATURE REVIEW
This section covers on the review of studies carried out on stress among caregivers of persons with dementia. The section covers on different aspects that concern caregiving among persons with dementia. Aspects in this section include, complication of caregiver, intervention to decrease caregivers stress and significance of home visits programs.
The NP making home visits provides a point of contact for caregivers and the outside health world. They get to understand what the caregivers are facing. The information and experience gained from the visits played a key role in enhancing management of the caregivers stress.
Conceptual Framework of the stress and outcome process
Modified Lazarus and Folkman Transactional Model of Stress and Coping
The model assesses the level of stress among caregivers that have rendered services for more than six months. The primary appraisal in the model is n how the caregivers perceive care giving as a challenge to their wellbeing. The model outcomes are based on the causes of stress based on the caregivers’ perception. The outcome is assessed based on the relationship between the levels of dementia to the level of stress on the caregivers. High level of dementia requires a lot of attention hence may cause high level of stress among the caregiver. Another assessment is on the relationship between the levels of stress to the length of time in caring and lastly aims to create an awareness of the significance of medical home visits to persons with dementia and its impact on the caregiver stress.
Demographic consideration in caregiving
Many women participate in the caregiver services compared to men. 2.5 more women than men provide 24 hours care to persons with dementia and more than 3 in 5 caregivers are women (Alzheimer’s Association, 2014). Because of the high number of women involved, they are at high risk of developing or experiencing adverse consequences’ in their workplace (Hoshino, Hori, Kondo, Tamakoshi, Toyoshima & Sakakibara, 2013). Statistics indicate that 19 percent of women that provide care for persons with dementia quite their jobs because stress.
In 2008, 9.9 million caregivers provided 8.5 billion hours at the value of $94 billion dollars (Centers for Disease Control and Prevention (CDC). (2014). Caregivers providing care to persons with dementia in USA are 48 years of age. According to Alzheimer’s Association (2010), 18% of children aged 8 to 18 years provide unpaid care for someone that has dementia. 87% of persons with dementia receive care at home by their family members (CDC, 2014). Some of the caregivers also travel long distances to visit and provide care to people that suffer from this condition. This is involving and stressing, as it requires commitment and sacrifice on the part of the caregivers.
Cost of providing care to persons with dementia
The costs of providing care to persons with dementia have also continued to escalate over the years. The estimated cost of American Society of Caring Patients with Alzheimer in 2014 amounted to $214 billion including $150 billion covered by Medicaid and Medicare (Alzheimer’s Association, 2014). One in every five dollars spent by a person on Medicare goes to persons with dementia. Spending is three times more than a normal person.
In America, more than $100 billion is spent every year in providing care for the three million Americans and their family caregivers affected by dementia (Chan, Livingston, Jones & Sampson, 2013). This colossal budget is spent despite the fact that there are quality improvement efforts, evidenced based practice guidelines and clinical research activities that have been under way for the last three decades (Chan, Livingston, Jones & Sampson, 2013). Apart from financial investment, current care of dementia still suffers many problems relating to quality. Because of the changes involved in the process of taking care of these kinds of patients, randomized controlled trials were adopted in the last two decades (Boustani et al. 2011). This collaborative dementia care model delivered biopsychosocial interventions for the patients suffering from dementia and as well as their families. The model helped to improve the quality of care, quality of life, and behavioral and psychological symptoms of dementia for both the patient and the caregiver within a certain environment (Boustani et al. 2011). Another delivery model is the Healthy Aging Brain Center (HABC). This is a locally sensitive collaborative dementia care delivered as a mobile memory care practice emphasizing on outreach and integration within the primary care practice. This has also helped to improve the caregiver’s condition as well as the patients.
Stress among caregivers
According to Joling, Harm, Henriette, Scheltens, Peter, Appels & Hein (2012), the number of persons with dementia is expected to double in twenty years period making dementia caregivers to have stress. Persons with dementia stay home and taken care by caregivers (Wimo, Winblad, &Jonsson, 2010). Caring for this people is associated with increased mental health risks. According to Roland et al. (2011), providing informal care or a spouse suffering from Alzheimer’s diseases (AD) may impair physical and mental health of the caregiver. The most affected is the cardiovascular health as caregivers have a higher chance of developing incident Coronary Heart Diseases (CHD) as well as systematic hypertension compared to their counterparts not involved in care giving (Roland et al. 2011). Physiological changes known as metabolic changes have been attributed to cause coronary heart diseases among stressed caregivers handling persons with chronic dementia.
Furthermore, many caregivers experience sleeping difficulties (Roland et al. 2011). In various cross sectional studies done, caregivers of persons with dementia hand more metabolic syndrome factors compared to non-caregivers (Dang, Badyle & Kelkar, 2008). However, cardio metabolic risk was same among the caregivers and non-caregivers in the situation where caregivers engaged in high physical activities. This therefore means that caregivers dealing with persons with dementia have to engage in vigorous physical activity to reduce the risks of developing these complications brought about by stress (Dang, Badyle & Kelkar, 2008). Furthermore, healthy lifestyles such as abstinence from tobacco and moderate alcohol consumption help to reduce or lower cardio-metabolic risks among caregivers.
Caregivers stress increase when a person with dementia is under long-term health facility and when the person dies. This affects their mental abilities as they try to cope with the new realities (Li, 2012). Various studies assert that mental transition and established different results that vary and affected by different factors such as whether the caregivers will continue to provide care to the remaining person, the care giving experiences relative to death of the person and time elapsed after transition (Li, 2012). Studies have also revealed that after the death of a spouse, the caregiver’s physical health seemed to improve as they experienced reduced medical symptoms (Sun, Mutlu & Coon, 2014). These findings indicate that caregivers are under pressure and stress as they render their services (Moyle, Murfield, Griffiths & Venturato, 2012). Caregivers with role overloads, higher post transition levels of depressive symptoms and sleep difficulties would not experience higher decrease in cardiometabolic risks during transition as they develop a psychological distress associated with the metabolic syndrome. Hence, advised that primary caregivers of persons with dementia get involved in periodic assessment of caregivers stress and any presence of depression (Dang, Badyle & Kelkar, 2008). Counseling about common care giving stresses and community resources is important to help reduce care giving stress and depression (Testad, Mikkelsen, Ballard & Aarsland 2010). The caregivers require counseling about these risks and prepared psychologically about the stress and depression so that they can handle the same amicably. For instance, the 6- months individualized primary care intervention for stressed dementia caregivers is effective in reducing the stress, depression, and hours per day of duty (Roland et al. 2011). Those caregivers that maintain high levels of stress after placement may require special clinical needs/services to help them reduce the high risks of developing cardiovascular diseases. Symptoms of high cardiovascular include high levels of depressive mood and poor sleep even after the patient is under placement (Cohen, Steen, Reed, Hodgkinson, Soest-Poortvliet, Sloane & Zimmerman, 2012).
Knowledge of how caregivers function in their busy and potentially burdened live has implications for the therapist ability to improve quality of life of these caregivers and persons with dementia (Black, Johnston, Morrison, Rabins, Lyketsos, & Samus, 2012). The number of persons with dementia is increasing and therefore presents a challenge to the caregivers as they try to balance between care provision and their own care (Alzheimer’s Association and National Alliance for care giving, 2009). Most of the caregivers’ under pressure having stressed, anxiety, depression and less time for pleasurable activities are at risk of further impaired functioning. Formal respite services help reduce stress and improve psychological well-being but research on its effectiveness has been inconclusive (Watts & Teitelman, 2005). Regardless of these, many studies aim to find an appropriate methods and technique that can help to reduce stress among caregivers providing care to persons with dementia (Watts & Teitelman, 2005).
Despite the role the caregivers render, they are exposed to a variety of potentially serious hazards such as psychosocial risks, chemical and biological risks as per report published by NIOSH (Sequeira, 2013). The report provides further risk such as verbal abuse, overexertion, stress at work, and physical violence. Estryn-Behar, Van der Heijden, Ogi-ska, Camerino, Le Nezet, Conway, Fry, Hasselhorn, & NEXT Study Group, 2007). Furthermore, burnout is yet one of the common phenomenon that caregivers experience. The amount of work is tiresome and makes them become exhaustive and weary. Another problem is the quality of work especial when those engaging in this care are premature. Furthermore, emotional labor is a problem that affects most of the caregivers. During the execution of these responsibilities, these caregivers are exposed to high emotional demands and are required to manage complicated problem (Sequeira, 2013). For example in some instances, these caregivers are required to conceal a disease or a complication developing in the person in case recovery process is in doubt. The intention aims at avoiding negative influence (De Rooij et al. 2012). Such moments can be so emotional and stressful on the part of the caregiver affecting the capacity to execute roles. This may result into depression and incase the caregiver does not manage the stress appropriately, may lead to further complications.
Intervention to decrease caregiver stress
Caregivers use emotional strategies in their work (Van De Weerdt & Baratta, 2012).They express emotions and as well conceal them from others. For instance, they are able to conceal their emotions from the patients but express them to their colleagues. Positive emotions caregivers feel is linked to regression of patients’ diseases, their feeling of helpfulness, and quality of their relationship with the person with dementia and success of technical procedures that leads to less pain (Van De Weerdt & Baratta, 2012). These aspects facilitate the operation and the care giving process relieving the caregivers stress. For instance, when the conditions seem to improve, it gives the caregiver some relieve and makes the caregiver optimistic.
On the other hand, negative emotions among the caregivers are associated to poor relationship with the persons with dementia, time-related pressure that affects relational activity, lack of constraint recognition by the management and care performance conditions such as lack poor hygiene (Rowe, Kairalla, & McCrae, 2010). These aspects make the caregiver to withdraw and have negative attitude towards as they execute their roles. It also contributes to stress among many caregivers. These problems can however be managed through coping, discussion of emotional strategies, stress at work and job satisfaction with the other colleagues (Abir, 2013). Sharing emotions among caregivers is important in terms of recognizing the affective dimensions (Van De Weerdt & Baratta, 2012). Through such sharing, appropriate remedies allows for motivation, social support that allows the caregivers to manage their emotions and negative emotions and stress (Fisher et al. 2011). The exchange should involve free emotions expression concerning a particular case and as well recognition and appreciation of emotional and relational part by the management.
Improvement of work conditions through greater knowledge of work constraints in line with the difficulties encountered is yet amicable way of addressing the areas and negative emotions. Occupational risks as well as hazards and psychosocial risks are alleviated through provision of better working conditions (Testad, Aasland & Aarsland, 2007). According to Edvardsson et al. (2008), residents challenging behaviors related distress such as, aggression have serious consequences for clinical practice. The interventions aimed at reducing the challenging behaviors should focus on both the residents as well as caregivers. Verkaik et al. (2011) recommends introduction of nursing guidelines on depression in dementia and reported positive effects on the perceived professional autonomy of certified nursing assistants and reduction of severity of depression in residents suffering from dementia. The guidelines should take care of both the caregivers and the residents (Van De Weerdt & Baratta, 2012). Caregiver education for advanced caregivers should focus on the managing challenging behaviors and subsequent distress that are likely to be experienced among the patients (Schmidt, Dichter, Palm & Hasselhorn, 2012). The workplace health promotion and organizational interventions of caregivers in relation to the patients require improvement. Assessment and development of preventive interventions factoring the different settings and features of care giving homes are important. Case conferences and education are potential ways to empower the caregivers in the quest to manage resident changing behaviors (Grant, 2008). On the same note, longitudinal research is required to investigate on appropriate ways to support caregivers in their interaction with the residents with dementia condition.
Most nurses experience distress because of the perceived behaviors of the patients, which include apathy and aggression (Schmidt, Dichter, Palm & Hasselhorn, 2012). Occupational characteristics such as seniority, status, position, does not influence on the residents challenge behaviors related with distress among the caregivers. This means that, the level of education and qualification have no influence on distress and expected higher training or education to result to stronger resilience (Staples & Killian, 2012). These findings are inconsistent from the previous findings that identified that higher qualification acts as a buffer for distress through fostering the acquisition of better coping skills (Brodaty et al. 2003). Caregivers with adequate knowledge and training are expected to have deeper understanding about the changes in their services and how to manage these changes in a better way compared to those that may be having less skills and knowledge.
According to Hill, Fillit, Thomas, & Sobin (2006), dementia places economic and emotional strain on families and the society. In United States it is considered as the third most costly condition which costs the government approximate of $US 80-100 billion every year (Hill, Fillit, Thomas, & Sobin, 2006). Functional impairment is a major feature and a major source of disability that increases caregiver’s stress as the activity of such individuals to perform their daily activities such as dressing, bathing walking and such like issues is limited.
Various symptoms such as anxiety, hallucinations, and apathy among people suffering from dementia is about 80% (Geertje, Draskovic, Adang, Donders, Zuidema, Koopmans & Vernooij-Dassen, 2013). These symptoms directly affect the quality of life of both the residents and professional caregivers. Caregivers are often dissatisfied in these care homes, which lead to high illnesses, and turnover rates that contribute to caregivers’ shortages (Tasdemir & Oz, 2011). As important of caregivers in management of AD is realized attention has shifted to measuring the impact of the condition. Caregivers stress is measured using caregiver stress scale. This tool helps to assess caregiver’s hardships, stress levels, and overall fatigue. Various studies have also examined the impact of rivastigmine treatment on caregivers stress (Kim, Chang, Rose, & Kim, 2012). Rivastigmine treatment has been established to reduce the levels of stress among caregivers. According to George (2008), care givers report health related quality of life compared to the general population and at least one third of the caregivers experience depression and anxiety (Simmons (2011). The caregivers’ stress consists of social psychological, emotions, physical and financial impacts. Most of the burdens are influenced by the amount of time that the caregivers spent with the patient. For instance, the financial impact will increase with time extension especially when the caregiver travels from a distance. This also leads to financial stress especially when the caregiver is not having enough financial back up for personal support.
According to Fauth et al. (2012), stress process model views caring as fundamental in many relationships that involve parent and children, marital and other relationship. However, when a person with dementia is involved, the relationship shifts from an equal exchange of assistance to a greater caregivers stress (Brown, Vassar, Connor & Vickrey, 2013). This means that the caregiver is required to work harder to provide better care to the patient. Establishing closer relationship between the caregivers and the patients of dementia serves as protective role for the care recipient. This study therefore, suggests the important of caregivers in providing care to the persons with dementia. According to Wai Tong & Isabella (2011), among several effective intervention approaches and integrated multi-component educational programme will help in responding to the complex and varying levels of needs and difficulties in dementia care. These intervention need to have multiple helping strategies such as information giving, problem solving skills training, stress management techniques and cognitive simulation for enhancing caregivers, knowledge and skills in dementia care (Unwin & Tatum, 2011).
Summary of literature review
Caregivers of persons suffering with dementia have daunting tasks that lead them to suffer from stress and depression. They have many challenges as discussed in this review. Financial burden is one of the factors that have contributed to the challenges and emotional stress in providing care to persons with dementia.The government can intervene to help improve the health of the caregivers as well as reduce the rates of dementia. Counseling and training programs and financial support for the caregivers would help to greater strides in reducing the rate of stress among the caregivers.
The section contains information on the methodology used to collect data. The section also delineates on salient issues of research including reliability, validity, and ethical considerations.
Data collection is vital stage in carrying out of research as the information provides information that allow unraveling of the hypothesis. An exclusion and inclusion criteria will be used to select the appropriate samples. A cross-sectional convenience sample of all gender between the ages of 19 – 89 years old will be recruited from the homes visited for monthly medical evaluations by the nurse practitioner. Frequency statistics and measures of central tendency (means, medians) will be employed to describe the sample. The participants will be identified by running a query in the New Horizons Family Clinic electronic health record to identify patients with any type of dementia. Two hundred charts using a random number generator will be randomly selected from that pool. The surveys will be mailed to the participants in a self-addressed-stamped envelope (SASE). The informed consent will be mailed in a separate SASE. Normally, only 50% people survey will respond to a survey. Therefore, 200 letters will be mailed. The person must be a caregiver for more than 6 months. The caregiver must write and understand English. The participant cannot have a mental illness. The Kingston Caregiver Stress Scale will be utilized to evaluate caregiving issues, family issues and financial issues of the caregiver. The search engines PubMed and CINHAL will be used to review literature, published between 2008- 2014.
Relationships between the variables will be explored using bivariate measures of association (Pearson’s r, Spearman’s rho as well as four-fold table analysis employing Odds Ratios and phi coefficients). Linear multiple regression modeling (F tests; fixed model, R² deviation from zero) will be used to assess the association of predictor variables (non-continuous predictors will be coded as dichotomous “dummy” variables with values of 1 and 0) with the outcome variable of stress. With a sample size of 100 and a maximum of nine predictors, a linear multiple regression analysis will be sensitive to overall medium to large effect size of f2=0.172 with a power of .8 with an alpha of .05. Individual bivariate regressions will be sensitive to effect sizes of r=0.243. Confidence Intervals (95%) for the population values of continuous variables will be within + 0.2SD of the sample estimates and will be within + 4.9% of the estimates obtained from categorical variable estimates.
Validity and reliability
In any research, reliability and validity are paramount as the information collected should be valid and reliable. It is the responsibility of the researcher to ascertain whether information is valid and reliable or not. Creswell (2010) suggested eight strategies researchers should factor to achieve validity. Many researchers adopt some of the strategies in their studies.
The researcher will use debriefing or rather peer review in the quest to achieve validity. The researcher will consult the supervisors on the best approaches to conduct the study. This will ensure help by providing the researcher a sense of direction in conducting the study. This assistance will enable the researcher to select credible materials to use to answer the research questions. Furthermore, external adopted will help to ensure that the researcher remains on track leading to success of the study. Therefore, the source used and the process employed to produce the research findings is expected to be valid and reliable.
Caregiving in itself is stressful and requires an interdisciplinary team approach between caregiver, nurse practitioner, pharmacy and the community. The concentrated goal is that the outcomes and findings from the survey can pave the way for further research. One aspect would be to develop a more frequent monitoring such as telemonitoring to inspire, encourage, and answer questions.
The research has several limitations. It was primarily limited by its sample size. The sample size could have been expanded by including online surveys. It was limited also by scarcity by finding. Additionally, an earlier start in data collection would have increased the time needed for a pre-test and post-test data collection.
A greater depth of information may have been obtained by doing online surveys, contacting agencies that are involved in caregiving with persons with dementia. Having open-ended questions would have allowed for theme search.
Caregivers indicated that they sometimes forego their own health conditions to care for persons with dementia. While they were optimistic about been less stressed about taking their loved ones from familiar setting caregiver own health conditions were unaddressed. This results in possibility of federal changes to amend or modify homebound status to include caregivers. Although respite is an alternative, persons with dementia do not adjust well in new environment (Watts & Teitelman, 2005).
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