Social Work Support For Carers Of People With Dementia - Literature review Example

Social Work Support For Carers Of People With Dementia I. Introduction According to the statistics made available by Department of Health (DH, 2012), approximately 800,000 people in the UK are diagnosed with dementia - a number which is highly likely to double in the coming decades. The policies implemented by the government for the betterment of health and well-being of the communities at large, are highly dependent on the care provided by the care givers. Hence there is an urgent need to provide adequate care and support to these care givers who work relentlessly on an unpaid basis, and address all or any potential setbacks these carers are likely to face. Most of these carers are family members or close relatives of people with dementia and may face significant negative health consequences as a result of continuous provision of care to such patients. In order to avoid such extreme health consequences for the carers, it is of utmost significance to ensure that optimum facilities in the form of support services are made available to them (i.e., the carers) on a regular basis. The outcomes of interventions and services provided to the carers are widely documented by various researchers, thus indicating the positive impact of such support services (Cooper, Balamurali, Selwood, & Livingston, 2007; Pusey & Richards, 2001). This paper on “Social work support services for carers of people with dementia” aims to explore the various services available for the carers; the impact and consequences of provision of such services; the need, purpose and significance of the study in general; along with the theoretical implications of the topic in question, and its benefits to the carers. I.1. Purpose of the study Caring for people suffering from dementia consumes almost every aspect of the carer's daily life, thus risking the loss of stamina and causing increased stress and burden of responsibility in the process. The care givers face several problems in the process of providing care to the people with dementia. They face overwhelming challenges while caring for such patients, thus making it difficult for them to care for their own personal emotional and physical well-being. It is of utmost significance for the care givers to balance their own personal and professional lives and providing care to their loved ones suffering from dementia. Thus offering social support services to the carers, is highly likely to result in sharing of their responsibilities and help in improving their self-efficacy. This study would help in analyzing and assessing the impact and outcomes of provision of such care to the care givers, and encourage and guide the policy makers to implement stringent measures to ensure health and well-being of the carers as well. I.2. Relevance of the study According to available research, it has been well documented that the carers of people with dementia are prone to experience increased levels of stress and emotional distress as a result of their services as compared to others (Moise, Schwarzinger and Um 2004). It has also been observed in several cases, and on the basis of available literature that, most of the carers of people with dementia are older people who themselves suffer from physical and emotional distress. Providing care in such circumstances, may cause additional burden on the carers, and subject them to extreme emotional drain. Furthermore, the carers also have to undergo significant transformations in their own personal relationships with their loved ones such as their parents or children, thus disrupting the natural and mutual harmony of their family environment (Jonsson and Berr, 2005; Knapp et al., 2007). It has been observed that carers are highly likely to face reduced opportunities to work and earn their livelihoods, due to the pressure to care for the people with dementia. They are often paid less and suffer from professional setbacks, such as inability to take up challenging job offers and / or promotions etc., since most of their time is spent on their caring commitments. According to the statistics made available by Carers UK (2010) approximately 1 out of 5 carers are highly likely to forsake their professional commitments and opt for caring for their loved ones suffering from dementia. Such carers account to a loss of about £750 million to £1.5 billion in earnings, as a consequence. Such loss of income could prove to be potentially damaging to the young carers who have increased financial commitments such as mortgage payments, providing for their children’s education, etc. Their dedication towards caring for people with dementia not only leads to substantial loss of money, but also loss of opportunities on the professional front. The provision of good quality services and care programs for the carers hence, is highly likely to provide respite to them, and afford them the opportunity to take care of their own personal and professional commitments. It is on account of these reasons, that a comprehensive study of a range of support services available to the carers is supreme significance. I.3. Method / Approach The research methodology is designed particularly to address the following questions: - Currently available information regarding the intervention and support services available for carers of people with dementia - The impact and outcomes of provision of such support services for the carers and factors which influence the outcomes - The range of social support services available and the significance of the same for the carers All the above mentioned questions are addressed in context of the UK health care setting. Issues related to clinical policies and health related studies are required to be carefully examined and thoroughly analyzed from the best possible sources and supported by credible evidence. For the purpose of this study a systematic reviewing of literature is adopted to ensure good quality assessment and improved outcomes of the study (Glasziou, 2001). According to Mulrow (1998), systematic reviews of various studies in the field of health care help the researchers in accurately assessing the validity and relevance of the research findings and confirm with precision, whether such findings can be generalized across diverse populations, settings, and treatment methods. The use of such method of reviewing clinical studies, helps in eliminating and preventing bias, and thus improves the quality of outcomes, thus leading to accurate conclusions. According to Petticrew & Roberts (2006) this method of reviewing literature helps in identifying as well as generalizing the findings of studies in an improved manner. For the purpose of this study, the systematic review process is followed and applied whereby a comprehensive literature search was carried out, and special attention was given to ensure inclusion of quality evidence. The data collected by way of this method was searched and reviewed to ensure credibility of both the sources as well as accuracy of the statistics included therein. The synthesis of the data researched was undertaken by keeping in mind a realistic approach and the intervention and care services provided were reviewed accordingly (Pawson & Tilley, 1997). The use of this method ensured effective review of intervention measures as well as improved outcomes and also helped in a better understanding of the contexts in which the study was applied. For the purpose of literature review, a comprehensive research strategy was developed and applied, to ensure inclusion of all relevant sources applicable for this study; and application of randomized controlled trials. The review also included a detailed analysis and review of all the key sources of information within the UK health care sector as well as those available from academic and clinical journals and literature. The ‘Google’ search engine used for online review of literature while for a list of academic and clinical journals was compiled and reviewed for accessing information related to the study. The evidence so collected, at the end of the research, was applied and implemented in narrative form and included in the body of this study, in the sections titled – Literature review, Theoretical Perspectives and Evaluation of available services (Popay et al., 2006). Other explanatory evidence is presented and included thematically in the rest of this study (Pope, Mays, & Popay, 2007). Search strategy Data sources: Systematic literature reviews were studied from the NHS data base as well as from the Cochrane database of systematic review. The information and evidence regarding medicinal and health care approach for the carers was reviewed and retrieved from the British Nursing Index and Health Management Information Consortium. Information regarding academic as well as social science reviews were researched from the International Bibliography of social sciences and other sociological studies. All the data was researched for the period of April 2012. I.4. Theoretical perspectives: The concept of social support has been historically recommended and strongly advocated by researchers as a key factor in eliminating and / or reducing family stress (Maher and Green, 2002). The term social support includes providing emotional support to those in need and ensure that they feel cared for and loved; providing support to increase and improve their self-esteem to ensure the protection of their self-worth; and provision of network support to ensure that the recipients of such care are aware of the wider social network which is available and accessible to them in times of need, as well as for communication and interaction (Monahan, Greene, and Coleman, 1992). Various Legislations passed by the government to ensure care and support for carers Some of them discussed in detail, hereunder: The Carer’s National Strategy 1999: This paper was aimed at improving the lives of carers by giving £140 million Grants to local authorities so that they could give carers respite, improve information for carers about their rights and local support. Furthermore the government also introduced various reformative measures in the form of legislations, to ensure that the authorities rightly and effectively address the needs of the carers; provide a second pension to the carers, of an amount equivalent to the time spent on caring; make arrangements for the payment of additional £50 a week, by 2050 etc among many others (The Carer’s National Strategy 1999:7). Recognized, valued and supported: Next steps for the Carers Strategy 2010: This new strategy which was an improvement on the initial strategy launched by the government in 1999 was introduced in the following year. The key goal of this strategy was to list the various ways in which the carers health can be improved. by prioritizing the best possible outcomes for them. This included extending support to them at early stages (early intervention) and rewarding them with breaks, holidays and other benefits, for their contribution and care. One of the key goals of this strategy was to ensure better and positive health outcomes for the carers through involvement of employers, health and social service organizations as well as other voluntary organizations in developing ways to support the health of the carers. Particular attention was paid to carers with disabilities, older carers as well as carers with children (Next steps for Carers Strategy, 2010: 28). The Work and Family Act 2006: The work and family act which was introduced in 2006 was aimed at ensuring flexible working hours and protection of legal rights of the carers in order to provide best possible start for the children. The key goal of this act was to provide substantial public benefits including social as well as economic, to working parents, in order to enable them to cater to the demands of their families (Work and Family Act, 2006: 1). This act specifically introduced measures to ensure that the interests and rights of the carers are duly protected. As a result, the act entailed reviewing of the right to request flexible working, for the carers. The key objective behind this provision was to ensure that the carers are offered employment protection and do not have to give up their jobs and end up in low paying or part time jobs, in a bid to care for their families or loved ones (The Work and Family Act, 2006: 27). Loss and bereavement theory: The Kübler-Ross model which is also commonly referred to as the five stages of grief model, is a five stage model developed by Elisabeth Kübler-Ross and is based on the basic human reactions when faced with situations of grief or while coping with illness or death of their loved ones. The five stages include: Denial and isolation; anger; bargaining; depression; and acceptance. This theory is applicable to the carers of people with dementia, since they undergo and experience all these stages while caring for such patients (James, 2008). Each of these five stages are described briefly hereunder: Denial and isolation: Denial is the first step experienced by individuals when faced with diagnosis of a terminal condition of either themselves or their loved ones. This stage is a painful experience for the individuals and hence as a coping measure, they tend to go into denial to avoid the pressures of dealing with the pain. Anger: This is the second stage in the five stage model. In this stage the myth of denial is finally broken, and is replaced by anger. This stage follows the 'why me'? pattern; where the individual experiencing the trauma, often exhibits hostility, rage, envy or resentment. These feelings are methods of adaptation to the circumstances faced by them. Bargaining: During this stage the patients finally come to terms with the changed situation and try to bargain with their physicians or God for an extension or a second chance. Depression: Depression: The confrontation with reality leads to fear among the individuals who experiences bouts of depression, due to the probability of loss of their loved ones. The depression experienced by them can be categorized as preparatory depression and reactive depression, which signify the emotional preparation on the part of such individuals to relinquish everything and to deal with the irrevocable loss. Acceptance: This is the final stage in the model, whereby the individuals after having gone through the previous 4 stages, finally come to terms with the situation facing them. By this stage the individuals are believed to have done with mourning and tend to be emotionally settled. I.5. Content Overview / Structure of the report This study centres around the issue of social support services made available to the carers of people with dementia. It is divided into various sections, whereby all key aspects of this issue are discussed at length. This includes an introduction section which discusses the basic meaning of terms and concepts used in the paper, the purpose of the study; the relevance and significance of the topic to this study; the various methods used to collect information and data included in this study, followed by a detailed theoretical discussion on the topic. This section is then followed by a comprehensive literature review, which is focused on discussions with regard to the concept of social care, the various definitions of the social support; and the types of social support provided to carers in the UK. The discussions are based on various epidemiological studies as well as an extensive research of available literature on the matter beginning from historical origin of the concept to its application in recent times. The literature review is then followed by a discussion and evaluation of various support services available to the carers of dementia in the UK. A brief description of such support services is included, as a part of this study. Lastly, as a concluding remark, the social work ethics and practice dilemmas within the field of public health care in general and provision of support services to carers of people with dementia in particular, is included. Lastly the study is concluded with a summary of observations made and discussions included in the study. II. Literature review The concept of social support is multidimensional in nature, as is evident from the various studies carried out over the years. The conceptual definitions of the very concept of informal care giving, often fail to encompass the nature, extent and depth of the services offered and activities involved on the part of the care givers. However several key areas which need to be addressed with regard to providing social support to care givers have been identified by researchers. The same have been included in this section. These include an analysis of structural characteristics of informal social support groups involved in providing services to carers; the range of supportive activities undertaken and exchanged by members of such social groups; as well as the influence of such relations on the carers (Barrera, 1986; Krause, 2001; Lakey & Cohen, 2000; Streeter & Franklin, 1992). The types of social support provided to carers can be differentiated on the basis of formal and informal support. Formal social support includes services provided for a fee, whereby the helpers, assistants or volunteers provide their services to the carers for a fee; while informal support on the other hand, which is discussed in this study, includes assistance and support provided by social support groups to the carers of people with dementia. Research has indicated that social support services play a key role in influencing human behaviour and control the outcomes by ensuring positive health consequences to the carers. Various epidemiological studies have successfully established a strong relationship between the emotional health and well-being of carers and their association with social support groups (Cohen & Syme, 1985). There is strong evidence which indicate the various benefits of social support groups and their role in reducing stress among carers who experience stress and depression. Significance and relevance of social support for carers: According to available data, informal care is one of the most widely used sources of care especially for older people suffering from dementia, in the UK. Statistics suggest that approximately 80 per cent of aged people in the UK are highly dependent on informal carers comprising mostly of their family members and close relatives, neighbours or friends (Pickard et al., 2000). The issue of caring for older people is of great significance for the purpose of this study, since the number of older citizens in the UK is relatively higher as compared to global standards, and is steadily rising. The older citizens form a major chunk of people receiving informal care from the carers, thus indicating the need for increased social support for the care givers. It has been established through studies that the older people need extra support and care which may be taxing and stressful for the carers thus making them vulnerable to emotional distress, often leading to symptoms of depression and other mental and psychological illnesses. This in turn is likely to affect their health and well-being in the long run, in the absence of timely and adequate support services, provided by social support groups. According to the stress-buffer hypothesis, services offered by social support groups play a key role in safeguarding the mental and emotional health of the carers by protecting them from stressful events. There is overwhelming evidence which points to the strong relationship between mental and emotional well-being of carers and their association with social support groups. Furthermore there is also a strong link between the level of satisfaction enjoyed by the carers and the positive health outcomes, as a result of their association with social support groups (Bishop, Martin, & Poon, 2006; Levitt, Antonucci, Clark, Rotton, & Finley, 1985; Litwin & Shiovitz-Ezra, 2006; Pinquart & Sorensen, 2000; Yang, 2006). III. Evaluation of available services The various services available for carers of people with dementia are listed below: • Breaks from caring or respite care Respite care refers to the short-term care provided to cares, as an alternative to their usual care arrangements. The key objective behind such provision is to offer temporary relief from the routine, to the carers, so as to protect them from emotional and psychological setbacks, and stress. This includes providing the carers with ample time to manage their other chores, such as running errands, or going on a short holiday, thus giving them an opportunity to rejuvenate from their highly stressful lifestyles (Alzheimer's Society, 2012). – In-home respite care: Government policies currently in place require carers to live at home for longer duration, in order to avoid or delay the entry of the patients of dementia into residential care. However, this entails greater responsibility and burden of caring, on the care givers, since they are now required to attend to the patients for longer duration. Although on one hand, such policy helps the carers as well as the patients to access increased care in their home environment, it does prove to be highly stressful for the carers. Thus, there is an increased need for providing in-home social support services to such carers whereby quality support is provided to them to assist them in their day-to-day activities. The in-home respite services are provided to the carers after a detailed consultation with them, thus ensuring that their needs and requirements are fully taken care of (Alzheimer’s society, 2012). Day care services: Day care services refers to services provided to the carers by voluntary or paid care givers, whereby the carers are stationed outside the homes of those in need of such care, or services are provided to them, for a fixed number of hours during day time (Tester, 1989). These day care services can be categorized into hospital care - i.e. services provided by the NHS, and those provided by the local authority (Burch and Borland, 2001). The type of services offered under this category varies across the country (Levine et al., 1994) with regard to the location where such services are provided. Institutional respite care: This type of services is particularly designed for carers of older people suffering from dementia (Twigg, 1992). Studies have indicated that the provision of such overnight respite care for the carers of older people suffering from dementia, has had a positive health outcome on those receiving such care services (Levin et al., 1989). Evidence suggests that the carers have experienced lesser burden and greater relief by accessing this type of service, thus indicating its effectiveness as a respite care measure. Furthermore it has also been observed that provision of such care has a significant positive outcome on the productivity levels of the carers (Davies and Fernandez, 2000). Social work ethics and practice dilemmas: The provision of good quality of care to patients of dementia involves effective application of ethics to the principles of care, which aims to promote the well-being of both the patients as well as the carers. According to Tronto (1993) the key ethical considerations involved in providing care and support services to the carers of people with dementia include the following: - increased attentiveness with regard to the needs and requirements of the carers - ability to take responsibility for the actions - exhibiting excellence and competence in providing care and support services - and increased responsiveness with regard to provision of care With regard to provision of care in health care services, it must be ensured that all the ethical principles and codes of conduct are duly followed by those involved, and all the procedural rights and duties are duly incorporated and respected by the practitioners. IV. Conclusion On the basis of the above discussion it can be safely concluded that providing care and support services to disabled or diseased member of a family entails increased responsibilities and enhanced negative impact on the health of the carers. This increased burden is likely to disrupt the emotional, mental and physical well-being, of the carers thus requiring them to seek support from social networks and care groups. The provision of social support services and respite care to the carers of people with dementia ensures their greater well-being, and results in improved outcome for the patients as well, as is evident from the discussions included in the literature review. There are various types of care services available for the carers of people with dementia in the UK, although the type and extent of such services vary across the country. The policy makers must ensure that the respite care is made available to all the carers regardless of their socio-economic backgrounds and there is equality in provision of such care, since it is of utmost significance to the overall health and wellbeing of the carers. Contents Sr. # Topic Pg. # I. Introduction 2 1.1. Purpose / Rationale of the project 3 1.2. Relevance of the topic 3 1.3. Method 5 1.4. Theoretical perspectives 8 1.5. Content overview / Structure of the report 11 II. Literature Review 12 III. Evaluation of available services 14 IV. Conclusion 17 Bibliography 18 Bibliography Barrera, M., Jr. (1986). Distinctions between social support concepts, measures, and models. American Journal of Community Psychology, 14, pp. 413–416. Bishop, A. J., Martin, P., & Poon, L. (2006). Happiness and congruence in older adulthood: A structural model of life satisfaction. Aging & Mental Health, 10, pp. 445–453. Burch, S., and Borland, C., (2001) Collaboration, facilities and communities in daycare services for older people. Health and Social Care in the Community, 9, 1, pp. 19-30. Clay et al., (2008) cited in Neufeld, A., Harrison, M. J., (2009). Nursing and family caregiving: Social support and non-support. Springer Publishing Company, pp. 8-11 Cohen, S., & Syme, S. L. (Eds.). (1985). Social support and health. New York: Academic Press. Cooper, C., Balamurali, T. B. S., Selwood, A., & Livingston, G. (2007). A systematic review of intervention studies about anxiety in caregivers of people with dementia. International Journal of Geriatric Psychiatry, 22(3), pp. 181-188. Davies, B., and Fernandez, J., (2000) Equity and Efficiency Policy in Community Care: Needs, Service Productivities, Efficiencies and their Implications. Aldershot: Ashgate Publishers. Glasiou, P., (2001). Systematic reviews in health care: A practical guide. Cambridge Universit Press, pp. 11-13 James, R. K., (2008). Crisis intervention. Cengage Learning, Pp. 365 Jonsson, L., and Berr, C., (2005). Costs of dementia in Europe, European Journal of Neurology, 12, supplement, 50. Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J. L., Ferri, C., McCrone, P., Snell, T., Stewart, R., (2007). Dementia UK, Alzheimer's Society, London Krause, N. (2001). Social support. In R. H. Binstock & L. K. George (Eds.), Handbook of aging and the social sciences (pp. 272–294). San Diego, CA: Academic Press. Lakey, B., & Cohen, S. (2000). Social support theory and measurement. In S. Cohen, L. G. Underwood, & B. H. Gottlieb (Eds.), Social support measurement and intervention: A guide for health and social scientists (pp. 29–52). New York: Oxford University Press. Levers, L. L., (2012). Trauma counselling: Theories and interventions. Springer Publications, pp. 203-205 Levin, E., Moriarty, J., and Gorbach, P., (1994). Better for the Break. London: HMSO. Levin E, Sinclair I, and Gorbach P (1989) Families, Services and Confusion in Old Age. Aldershot: Gower Publications. Levitt, M. J., Antonucci, T. C., Clark, M. C., Rotton, J., & Finley, G. E. (1985). Social support and well-being: Preliminary indicators based on two samples of the elderly. International Journal of Aging & Human Development, 21, pp. 61–77. Litwin, H., & Shiovitz-Ezra, S. (2006). The association between activity and wellbeing in later life: What really matters? Ageing & Society, 26, pp. 225–242. Maher, J., Green, H., (2002). Carers 2000. London: The Stationery Office. Matoff-Stepp, S. A., (2007). The impact of formal social support on outpatient care among a sample of adults living with HIV/AIDS in the United States. ProQuest Publication. Moise, P., Schwarzinger, M., Um, M. Y., (2004). Dementia Care in 9 OECD Countries: A comparative analysis, OECD Health Working Papers No. 13, OECD, Paris. Monahan D, Greene V and Coleman P (1992) Caregiver support groups: factors effecting use of services. Social Work, 37, pp. 254-260. Moniz-Cook, E., Manthrope, J., (2009). Early psychological interventions in dementia: Evidence based practice. Jessica Kingsley Publishers Mulrow, C. D., (1998). Systematic reviews: Synthesis of best evidence for health care decisions, ACP Press, pp. ix-xiii Pawson, R., & Tilley, N. (1997). Realistic Evaluation. London: Sage Publications Petticrew, M., & Roberts, H. (2006). Systematic Reviews in the Social Sciences: A Practical Guide. Oxford: Blackwell. Pinquart, M., & Sorensen, S. (2000). Influences of socioeconomic status, social network, and competence on subjective well-being in later life: A meta-analysis. Psychology and Aging, 15, pp. 187–224. Pope, C., Mays, N., & Popay, J. (2007). Synthesizing Qualitative and Quantitative Health Evidence. Maidenhead: Open University Press McGraw-Hill Education. Popay, J., Roberts, H., Sowden, A., Petticrew, M., Arai, L., Rodgers, M., Britten, N. with Roen, K. & Duffy, S. (2006). Guidance on the conduct of narrative synthesis in systematic reviews. Version 1: Available from the Institute for Health Research, Lancaster University. Pusey, H., & Richards, D. (2001). A Systematic Review of the Effectiveness of Psychosocial Interventions for Carers of People with Dementia. Aging & Mental Health, 5(2), pp. 107-119. Southwick, S. M., Charney, D., Friedman, M. J., (2011). Resilience and mental health: Challenges across the lifespan. Cambridge University Press, pp. 341 Streeter, C. L., & Franklin, C. (1992). Defining and measuring social support: Guidelines for social work practitioners. Research on Social Work Practice, 2, pp. 81–98. Tester S (1989) Caring by Day: a Study of Daycare Services for Older People. London: Centre for Policy on Ageing. Tronto, J. C., (1993). Moral boundaries: a political argument for an ethic of care. New York: Routledge Publications Twigg J (1992) Carers in the service system. In Twigg J (ed) Carers: Research and Practice. London: HMSO Ungar, M., (2011). The social ecology of resilience: A handbook of theory and practice. Springer Publication Yang, Y. (2006). How does functional disability affect depressive symptoms in late life? The role of perceived social support and psychological resources. Journal of Health and Social Behavior, 47, pp. 355–372. Primary Sources: Alzheimer's Society (2012). Leading the fight against dementia: Respite care [Online] Available at: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=140 [Accessed: April 23, 2012] Carers UK (2010). Carers UK calls for new Social Contract [Online] Available at: http://www.carersuk.org/newsroom/item/108-carers-uk-calls-for-new-social-contract [Accessed: April 22, 2012] DH (2012). Dementia [Online] Available at: http://www.dh.gov.uk/health/category/policy-areas/social-care/dementia/ [Accessed: April 22, 2012] Next step for Carers Strategy (2010). [Online] Available at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_122393.pdf [Accessed: April 30, 2012] The Carer’s National Strategy (1999). A national strategy for carers [Online] Available at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4049323.pdf [Accessed: April 30, 2012] The Work and Family Act (2006). [Online] Available at: http://www.bis.gov.uk/assets/biscore/employment-matters/docs/10-844-work-families-act-2006-evaluation [Accessed: April 30, 2012] Read More