Providing respite care to carers of people with dementia - Research Proposal Example

Providing respite care to carers of people with dementia Providing care to people with dementia is an emotionally taxing ordeal for the carers and takes a toll on their physical as well as emotional well-being. Respite care acts as an effective intervention for the informal care givers and offers them the much needed relief from this highly demanding task. Evidence suggests that the caregivers involved in providing care to people with dementia are highly vulnerable to emotional and psychological setbacks such as depression and stress. This study aims to assess the role, significance and impact of such care on reducing the burden of caregivers, as well as in overcoming the range of issues faced by them in their day-to-day lives. Contents: Ch. # Topic Pg. # 1. Introduction 3 1.1. Background of the problem 4 1.2. Problem statement 5 1.3. Key objectives of the study 6 1.4. Research questions 6 1.5. Significance and scope of the study 6 2. Literature Review 7 3. Perspectives and Methodology 9 3.1. Data sources 12 3.2. Data collection method 13 4. Research Findings, Analysis and Discussion 16 5. Conclusion 17 5.1. Recommendations 18 References 20 1. Introduction There has been a significant change in the provision of healthcare services in the recent decades whereby the balance of care is being shifted from communities and institution based services to personalized care. This shift in care provision has caused great concern in the field of public health mainly due to the fact that the carers of people with chronic illnesses such as dementia are now burdened with the added responsibility leading to a gradual and consistent deterioration of their own physical and mental health (Knapp et al., 2007). Various researches conducted in the past have highlighted the gravity of the issue and pressed for policy changes in favour of providing respite care to the carers of people with dementia and making such care more accessible, responsive and tailor made to suit the needs and requirements of the carers (Briggs & Aksham, 1999). The term respite care refers to in generic terms refers to short-term care. However in the field of healthcare it refers to phased care, relief care, planned care, programmed care, holiday care, social admission, and shared care (Todd & Gilbert, 1995: 19). Various types of respite care are now available for both the patients as well as their carers. This includes community based day care, institutional care, (Gottlieb & Johnson, 2000) and paid or voluntary care services offered by institutions or volunteers or friends of the caregivers. Such care services can broadly be categorized as in-home care services, adult day centres - including provision of transportation and meal services; and residential care facilities - which affords break or vacation for the carers which are not covered under the insurance or Medicare (Alzheimers association, 2012a). This study aims to discuss the various types of respite care services available at the disposal of the caregivers and its impact, consequences and implications on their health and well-being. 1.1. Background of the problem: Dementia is a serious mental health problem associated with deterioration of the brain affecting over 700,000 million people in the UK. Statistics suggest that 1 in 100 people in the UK over the age of 65 suffer from dementia. There has been a rise in prevalence and occurrence of this disease among older people in the recent years due to the increase in life expectancy. In accordance with the current trends it is estimated that approximately 950,000 people in UK will be diagnosed with dementia by the year 2021 (NHS, 2012). People affected with dementia are known to struggle with their memory, thinking, mental agility, and face difficulty in understanding language, as well as controlling their emotions, and lack of judgement (NHS, 2012) which affects their quality of life. As a result of such impairments the patients of dementia are forced to rely on the services of their caregivers and seek assistance for performing their routine activities. Studies suggest that most of the patients of dementia receive care from their immediate families (Karlawish 2002; Shaji et al., 2003). Since dementia is a chronic illness, the duration of care may extend for a longer period of time, taking a toll on the health and well-being of the carers in the process. It is hence highly likely that the carers of people with dementia may suffer from stress and various other mental and emotional setbacks. Increase in stress arises due to the constant needs of the patients for the caregiver’s care and assistance in executing day to day tasks, and the various problems encountered by them as a part of this daily ordeal. Research indicates that the constant pressure to communicate with the patients and deal with their behavioural and emotional responses is some of the key factors adding to the stress for carers (Grant, 2003). Various studies have indicated that the stress of caring for patients of dementia and the damages caused as a result can be mitigated by provision of supportive healthcare services by the local health and social service institutions. The lack of supportive services available at the disposal of the carers further aggravates the stress levels of the carers leading to gradual deterioration of their physical and mental health (Shaji, 2003). Similar observations have been made by other researchers who have indicated the various adverse effects of stress including complete mental breakdown of the carers, and strain in the relationship between the family members resulting in psychological distress and increased risk of morbidity for both the patients as well as the caregivers (Neueld 2003; Parks 2000). 1.2. Problem statement: The carers of people with dementia are known to encounter a range of emotional setbacks during the course of the illness. It has been established through research that the carers of such people are highly vulnerable to depressive symptoms as compared to gender-matched non-carers. The provision of respite care is hence one of the most effective health intervention that can help them to cope with stress and ensure their health and well-being. 1.3. Key objectives of the study: To analyze the impact of respite care on the carers of people with dementia To explore the various forms of support available to the carers To examine the effectiveness of existing support services and suggest the necessary changes to improve them 1.4. Research Questions: What kind of support services generates positive outcomes for carers? What are the implications of the various types of care services provided to them? Are the support services easily accessible to the carers? 1.5. Significance of the study The number of people suffering from dementia is constantly on the rise in the UK leading to a simultaneous increase in the costs associated with it. Research indicates that the costs associated with caring for people with dementia in the UK is almost thrice as much as that required to care for patients diagnosed with cancer and four times as much as those diagnosed with heart disease (Luengo-Fernandez et al. 2010). In the light of the available information and data regarding dementia, the costs associated with it and its consequences on the carers it is of utmost significance to understand the relevance of various support and respite care services available for the carers of people of dementia in order to ensure their health and well-being (Blackstock et al. 2006; Innes et al. 2005; Cascioli et al., 2008; Forbes et al., 2006). 2. Literature Review Research indicates that the burden of caring for people with dementia largely falls on the members of the family who are unpaid carers (Challis, 2009). According to available statistics an estimated 670,000 people in the UK act as primary carers for people with dementia, of which over 1.25 million of them are carers actively involved in providing unpaid care accounting to more than 50 hours per week (Alzheimers Society 2012a). As mentioned in the previous section of the study, dementia is a chronic illness and the patients suffering from the disease are likely to suffer long-term conditions such as loss of memory, language, emotions, and other serious ailments such as heart disease thus leading them to rely more on the carers. The progressive trait of the disease and the healthcare structure of the country where people with dementia rely more on the unpaid carers, makes it highly difficult for the carers to deal with the enormous challenge. Provision of respite care for the carers has been historically known to positively impact the lives and health of the carers (Nolan, Ingram, and Watson 2002; Weightman, 1999). Studies have indicated the growing need of the carers and the increasing importance and role of provision of respite care in eliminating / reducing stress and depression among the carers (Brodaty, 2007; Pickard, 2004). It has been observed that respite care to the carers of people with dementia results in enhancing the psychological as well as physical well-being of the carers and motivates them to provide effective care to the patients. It also helps in controlling costs required in provision of long-term care (Department of Health, 2006). According to the Alzheimer’s Society (2012) Dementia is a major public health concern in recent times. The number of people affected by dementia is constantly on the rise and is likely to increase even further by 2012. Studies have confirmed that the total number of people diagnosed with dementia in Europe is likely to double in Western Europe and triple in Eastern Europe by the year 2040 (Ferri et al., 2005). The economic cost of dementia in UK is expected to exceed £23 billion in 2012. According to available statistics the family carers of people with dementia save the UK over £8 billion annually (Alzheimers Society, 2012b). The costs in Scotland in the year dementia have risen to a status of an epidemic recording an overwhelming 75 per cent increase in number of people affected with the disease. It is recognized as one of the major causes of disability among the people over the age of 60 years. 48 per cent of those affected with dementia need daily care services and 34 per cent of them need constant care and supervision. An overall lack of adequate care services has been observed in Scotland thus depriving the patients of timely and effective healthcare. The burden of care hence is transferred to informal unpaid carers. Respite care provision is identified as a key issue for carers of people with dementia with only 27 per cent of the carers recorded to have access to respite care services, while the rest of them are largely deprived of diagnostic services as well as other required professional services such as training and support services to deal with the immense emotional trauma faced by them on a daily basis (Alzheimers Scotland, 2012). 3. Perspectives and methodology: “If historians gain from the practices of sociologists who are interested in what happens when data is re-used, then equally sociologists might also gain from accepting more creative and interpretive approaches to archived data which recognise the potential for re-use as a means for fresh and newly informed conceptualisations of old concerns as well as the re-contextualising of emergent ideas within a broader time perspective.” Bornat 2008:3 Approach to literature review: For the purpose of this study the qualitative research methodology (secondary data collection method) as a key approach to selection of relevant literature. Secondary data refers to the data which is already in existence and has been widely recognized as key contributors of vital information particularly in the field of public health and epidemiology. It includes data collected from various sources such as key governmental public health websites such as NHS, national surveys conducted across the country, data specific to key organizations such as the Alzheimers Society, or private organizations such as Medicare or other sources for accessing vital statistics related to the topic of study (Boslaugh, 2007). The following are the key sources of secondary data: Scholarly data publications including research conducted by other researchers and published in empirical journals Archived statistical data available from governmental and non-governmental websites as well as other national and international organizations such as government census, local offices, national organizations for disease prevention and control, voluntary and not-for-profit organizations engaged in provision of care services etc. Literature accessed from health and educational institutions, social service organizations, as well as other key records available from professional associations. Data collected from local and business directories, and special local ethnic populations etc. Analysis of secondary data provides the researcher with an opportunity to access the wide range of data sources and expose him/herself to the various types of information available on the subject under study, thus enabling them to critically analyze the data so collected and received. From a positivist perspective the analysis of secondary data adds to the existing knowledge of the researcher and helps in understanding the topic from diverse perspectives leading to the development of an unbiased and comprehensive understanding of the subject matter. It also helps the researcher in developing a valid hypothesis which has already been tested by other researchers, thus adding to the credibility and authenticity of the study and the conclusions derived there from (Novick and Mays, 2005). Secondary data helps in exploring various research assumptions and hypothesis and generating appropriate research questions in accordance with the subject of the study. It also enables the researchers in identifying and overcoming the gaps in previous research and implement appropriate methods to access valid data appropriate for the study. The various strengths and weaknesses of this method of data collection are listed in the following section: Strengths and weaknesses: Secondary data affords the researcher an opportunity to analyze and understand the manner in which a given subject is perceived by the target audience. It affords them the opportunity to collect the data spread over a vast time scale, and choose data in accordance to the period most suitable for their research. Such method provides them the ability to include a historical background thus lending more relevance to the study and communicating the key points listed in the study effectively to the readers (Tashakkori & Teddie, 2002). However the key weakness of this type of data collection method is the fact that the data so collected may be incomplete and subject to researcher bias thus resulting in selective reporting of the facts and evidences, thus hampering the key objective of the study. The data collected from secondary sources may be generalized thus rendering it inaccurate to be applied to a niche population. The secondary data is at high risk of becoming obsolete and hence lose the validity resulting in the findings to be inaccurate for the current period (Tashakkori & Teddie, 2002). 3.1. Data sources: For the purpose of this study various local, national, and international data sources have been accessed and researched to gain a comprehensive understanding of the subject and apply the data so collected in the context of the study. The following table shows the list of various data sources accessed during the course of this study. Databases searched for identifying models of respite care and short breaks AgeInfo (Centre for Policy on Ageing) AgeLine CINAHL (Ovid) CENTRAL (Cochrane Library) Cochrane Database of Systematic Reviews (CDSR) Alzheimer’s Society Alzheimer’s Scotland Database of Abstracts of Reviews of Effects (DARE) SPRU (Social Policy Research Unit) Health Economics Evaluation Database (HEED) Health Management Information Consortium Health Technology Assessment Database (HTA) CFTC (Care for the carers) Health Talk Online (Healthtalkonline.org) International Bibliography of the Social Sciences (IBSS) Internet Documents in Economics Access Service (IDEAS) World Health Organization (WHO) ISI Web of Science Proceedings MEDLINE (Ovid) National Research Register (NRR) National Institute for Health and Clinical Excellence (NHS NICE) NHS Economic Evaluation Database (NHS EED) 3.2. Data collection method: For the purpose of this study the qualitative research methodology was used whereby data was collected from secondary sources (as mentioned in the above table). The choice of the data sources was dependent on the topic of the research study. All the studies conducted by previous researchers (both empirical as well as non-empirical) confound to those focused on provision of respite care to the carers of people with dementia were taken into consideration and scanned. The types of studies were chosen based on location. All the statistical data relevant to the study was collected from and restricted to U.K only (England and Scotland) while the descriptive analysis was not restricted to any such geographic location. For accessing relevant data the search terms respite care and carers of people with dementia were used. The qualitative / descriptive data was not restricted to any specific time period, while the quantitative / statistical data was restricted to the current year (between the period 2007 and 2012). This was deliberately done in order to ensure that the statistical data used in the study is relevant to the present time. The qualitative or descriptive data however was not subject to any such restriction. This was primarily done to ensure that the readers are offered a comprehensive view of the various issues concerning provision of respite care. Most of the descriptive data available from secondary data sources (regardless of the time period) was found to be relevant and consistent with the situations and problems encountered in the current year as well. Hence the descriptive data was not time-bound. The analysis of secondary data in a qualitative research helps in finding solutions to research questions specific to the subject / topic under study (Hinds et al., 1997). The use of qualitative research by implementing secondary data analysis is largely favoured in the field of healthcare research since it affords the researchers the liberty to analyze vast amount of data from diverse data sources and data sets There is a direct connection between data collection methods used by the researcher and the quality of the research findings. The type of data collection methods and data sources chosen play a key role in analyzing the various issues and problems in the research and help in generating novel ideas which can then be utilized for recommendations and future research. The secondary data collection method lends theoretical sensitivity to the subject under study, helps in comparing the research findings effortlessly, and integration of theoretical perspectives and trends observed across various studies (Holloway & Wheeler, 2009). According to Cwikel (2006) descriptive research methodology is most suitable for studying the behaviour of population of interest (in this case the carers of people with dementia) as a basis for studying the hypothesis listed in the study by using secondary data sources (such as those listed in the table in the previous section of this study). This method is particularly helpful in exploratory research where the basic information regarding health or social problem is being observed / studied using anthropological observations. This method is most helpful in deriving logical and meaningful conclusions and describing a given phenomenon (in this case the provision of respite care to carers of people with dementia and its implications and outcomes on the health of the carers). The data collected from the secondary data sources (including the literature reviewed as well as the statistical data collected from governmental and other websites) will be analyzed and interpreted in accordance with the observations made by the historical data. Since the key purpose of the study is to observe a social phenomenon no statistical analysis has been applied. The analysis is based on the observations made from the data collected from various sources to arrive at logical conclusions. 4. Research findings, analysis, and discussion: The study helped in bringing to light the wide range of respite care services available across UK in terms of location (i.e. availability in rural and remote areas), the duration of respite care services provided; the patterns of use (by the carers); the financial costs involved in availing such services, and the flexibility of the services so provided. The study also helped in understanding the meaning and definitions of the terms respite care and the implications of the same on various stakeholders including the staff involved in provision of respite care services, the carers involved in caring for people with dementia, as well as on the field of healthcare service delivery. It helped in understanding the significance, consequence, and implications of provision of such services in improving and enhancing the physical and mental health and well-being of the carers. It was observed that the lack of knowledge regarding the existence and availability of such services as well as the financial costs involved, were identified as the key barriers to service provision. The findings further indicated and highlighted the need for improving the care services by making it more person-centric rather than offering uniform / generic services across all sections of the population. . Furthermore the analysis of the literature helped in understanding the current policies centered on provision of respite care, the economic costs involved, the social and psychological implications of such services on the wider population. Such observations can be further used to develop policy frameworks aimed at improving the provision and accessibility of the current care services and programs. 5. Conclusion: It is apparent from the study that dementia not only affects those diagnosed with it, but also those involved in caring for the patients. The carers are exposed to as much emotional trauma as that faced by the people with dementia, thus requiring an increased care and support services designed to address their specific needs. Dementia takes a toll on the psychological and emotional health of the carers, hence making it imperative for the healthcare providers to consider and design appropriate respite care services to the carers and create a warm, supportive, and caring environment which may help in reducing incidences of stress and depression among the carers of people with dementia. Dementia is one of the most serious public health concerns in the twenty first century. Governments across the globe, particularly in the U.K have historically taken key initiatives in overcoming the barriers and supporting the carers by introduction of various respite care services designed to elevate their position in the society. However the accessibility and availability of such services continue to remain illusive for the target segment, adding to the concerns of the policy makers. Recent reports suggest that the rise in life expectancy has resulted in increased incidences of dementia among the older people in the UK and the statistics are likely to increase in the coming years. Lack of provision of adequate and effective respite care service in such scenario, is likely to add to the woes of the general population, endangering the quality of life and threatening to disrupt the social fabric of the society in the process. 5.1. Recommendations: On the basis of the study and the literature reviewed for the purpose of this study the following key recommendations can be made: There is an urgent need to increase and improve the various types of respite care services made available to the carers. Although the respite care services are designed to ensure a comprehensive coverage of all the issues faced by the carers, a serious lack of accessibility and availability has been observed across UK. It is hence advisable to ensure that the processes used for ensuring availability of respite care, be improved. Secondly, it is highly advisable to ensure that the respite care services be designed keeping in mind the needs and preferences of the carers and that the design of such services is dementia-friendly. Overnight care is also one of the most critical and intrinsic aspect of respite care. Such services must be specifically designed so that the carers are provided adequate access to overnight care services considering the social, cultural and religious background of the caregivers. Furthermore it must also be ensured that the staff involved in provision of respite care be trained adequately and that training opportunities must also be made available for the carers in order to lessen the burden of care and improving the quality of care provided by such unpaid carers to the people with dementia. The organizations (local, national, as well as not-for-profit non-governmental organizations) must ensure that the services provided by them are flexible enough to suit the specific needs of the carers. The respite care services must be suitable for the specific needs of not only the people with dementia but also of those responsible for caring for them. Special efforts must be made to ensure that the support services not only afford extra time for the carers but are designed in such a way so as to improve the overall quality of life of the carers, in the process ensuring their mental and physical health and well-being. References: Blackstock K.L., Innes A., Cox S., and Mason A. (2006). Living with dementia in rural and remote Scotland: Diverse experiences of people with dementia and their carers. Journal of Rural Studies, 22, 161-176. Bornat, J., (2008). Crossing boundaries with secondary analysis: Implications for archived orla history data. 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