The Impact of the Increasing Number of Individuals with Dementia - Coursework Example

The Impact of the Increasing Number of Individuals with Dementia Introduction Dementia has been defined as a range of progressive, organic diseases of the brain, which usually have terminal consequences. Although these are more prevalent in people with older age groups, by definition it may occur even in the younger age groups. Age has been considered to be the main risk factor of this problem, and given its clinical dimensions of declining memory functions, jeopardised reasoning and communications skills associated with chemical and structural changes in the brain, the affected individuals often suffer a loss of control of basic bodily functions. In this scenario, both the affected individuals and their family members who are the primary caregivers at least in the beginning commonly suffer from depression and very high level of stress. According to the last audit report, about 560,000 people in England are suffering from dementia, and from the steeply rising trend, it is expected that in the coming 5 years, this number would escalate to a far higher range leading to enormous burden on the NHS economy. It is unfortunate that despite the critical nature of this problem, dementia care is not an NHS priority, and consequently, most of the problem now is handled by social care. Therefore, as a social care professional, this ever increasing incidence of dementia will have impact on practice. A focus group study reveals that the trend of having more and more affected individuals is clear. With the advance of medicine, the society of the country is primarily an aged society due to change in longevity and public health. Although often told about the elderly, it must be remembered that in some cases, the disease arises at the age of 45 or so, where the impact of the problem may be severe and particularly devastating due to impact on employment, income, and expected life course. With an individual with a diagnosis of dementia, at least initially, the family provides the majority of care, and they are bound to be burdened increasingly as the life course of the disease become progressive. In many cases, the health system forces indirectly the caregivers at home to utilise their own funds for different supports available leading to increased financial costs for care. Social work where the focus and skills of the profession related directly to the individual, his environment, and the interactions between these two could be the best profession to serve this growing population of dementic individuals and their caregivers (Department of Health, 2006). Although historically, dementia care began as a part of psychiatric nursing, it was gradually and increasingly being understood that care of these older people with dementia involving the network of their family members was a different work, which may aptly be called psychogeriatric. The early role description from research indicated some unique features, which are "the value of experience in working with people with dementia and their families; a knowledge of dementia and its likely course; attention to the personal care needs of people with dementia; information-sharing with families; promotion of autonomy for people with dementia; maintaining regular visits and contact; establishing trust with both the person with dementia and their family; and service coordination" (Keady and Adams, 2001: 37). The vast majority of the patients with dementia is caused by Alzheimer's disease in England. This arises from the degeneration of neural cells. On the contrary, vascular dementia is caused by poor vascular supply to the neural tissues in the brain. Many of the cases of dementia is caused by a mixture of vascular and Alzheimer's dementia. Many conditions, such as hypertension and stroke may be associated with vascular dementia. There are other rare varieties of dementia; however, the presentation of all dementias and the disadvantages that these patients suffer are almost identical practically. With increased knowledge about the problems with dementia, the provision of care for these people has immensely changed. The previous institutional approach of care was criticised since there was very little hope of cure and it was thought to be dehumanizing, leading to compromise in the welfare of these people even to the extent of physical and emotional abuse. Now the care is person-centred irrespective of the care settings. Now the trend has shifted from institutional care to care in the community setting with high regard to the humanitarian person-centred values. National Service Framework for Older People in England as dictated by Department of Health in 2001 sets the goal of multidisciplinary and inter-agency working according to the government policy. Social Work specifically match with this goal since their focus and skills relate to the individual, his environment, and the interaction between them. The current policy drive is towards a professionally closer and collaborative agency service. The emphasis is on organizational partnership and shared responsibility. New initiatives include health action zones and health improvement programmes. It is important to note in practice that dementia does not affect all old individuals, but its prevalence increases with age. As has been projected, the gradually increasing population in the elderly age groups would lead to enormously growing numbers of people with dementia. Thus to meet the needs of this population, it would need increased numbers of professionals who have specific knowledge, skills, and competency. This work would also involve ability to work with those who are trying to cope with dementia (Department of Health, 2001). Moreover, care provision of these people has significant economic impacts. The informal caregivers face loss of productivity leading to enhancement of economic burden. The medical care and long-term care systems often suffer from increase in staff burnout. In such scenario, the family member who continues to provide the bulk of the care throughout the course of the illness fall victims of mental and physical ill health due mainly to loss of their own leisure time. There will be impact of such factors in social work practice since the profession would need more social work knowledge, skills, and roles, which could assume critical promotion throughout the care spectrum (Illiffe and Drennan, 2001). Although these are very easy to propose, are actually very difficult to materialise. Despite these known human and financial impacts, dementia still lacks at least equal priority from the health department as compared to comparatively less common disorders, such as, coronary heart disease and cancer. The focus of improvement is thus expected to change with increase in the number of patients with dementia. It is unfortunate that a large proportion of patients fail to receive a formal diagnosis. This attitudinal pattern has been ascribed to GPs' lack of knowledge, deficiency in confidence to make a definitive diagnosis, perception that little can be done, and fear for dementia. The social workers must equip them against these odds to be able to live up to the demands of increased work load in their practice areas in the upcoming times (Downs et al., 2002). Poor awareness in the community and at the professional level about what is necessary to be done have lead to the conclusion that increase in the understanding of the symptoms of dementia has been considered to be a major determinant of outcome of care. Research has emphasised that there are many interventions and treatments which may hinder the progress of this disease. Knowledge and skills related to these interventions would also be able to enable people with dementia to lead an independent life for a longer life. Killick and Allan (2001) studied that the most suitable profile of a person with dementia is that of a person with abilities to exercises autonomy about the services that they desire to receive. From the social work perspective, the new culture thus strongly advocates promotion of personhood. While delivering care organisational partnership and collaborative care have also gained ardent attention (Killick and Allan, 2001). Like nursing practice in this area, the social work as a profession is most successful in care delivery when health care and social services work hand in hand in partnership in that planning for care, delivery of service, and review and evaluation of care must be a multiagency endeavour. Miller et al. (2001) proposed that effective care in this practice setting would depend on works that are strongly intercollaborative (Miller et al. 2001). The nature of the disease is such that people with dementia would need supportive measures from multiple health and social care providers. Involvement of multiple providers is often difficult to manage. Thus the trend is to provide a single social care professional contact who can coordinate care between all services and professionals involved. The current scenario is somewhat frustrating in that in the nursing homes, about 62% of the residents have dementia. It appears dangerous since less than 28% of the nursing homes are registered to provide a specialist dementia care. The reason is inefficiency. In most of these nursing homes, very few have specialist nursing qualifications, and quite often the staff lack in knowledge about dementia care. All these culminate into poor standards of care. On the contrary care based on hospitals is inadequate and sometimes very poorly managed. These risk longer stays, admission to care home, and deterioration in the health of the patient. It is not that these patients would not need hospital based care, but the best mode could be a framework of collaborative care where nursing homes set up a collaborative and interagency care delivery system with a local hospital. The New Ambition of Old Age (2006) desires to promote mental health as a part of active ageing. To worsen matters further while the incidence of dementia is rising at a rate of 12.2% people at age 82, still now, a late diagnosis can prolong the life of an individual with dementia even up to 20 years (Department of Health, 2006). Expertise of Colleagues Quite often professionals think dementia is just loss of memory. This gets reflected in patients' or carers' experiences and statements. It must be admitted that the infrastructure for management of these patients is deficient. The main complaints are the length of time needed to have a correct diagnosis. Even if the diagnosis happens right, there is indeed a lack of flexibility regarding the delivery of care services. One significant point is limited interactions with the care professionals, both social and healthcare. Review of the care processes has shown that the clients and their caregivers are overall dissatisfied with the process of diagnosis. The carers reported lack of support experienced throughout the stage of diagnosis with dissatisfactory interactions with the healthcare professionals (Keady, 1996). As evidenced in this writer's experience, the expertise of colleagues can be used as sources of much information. Many professionals think dementia to be just memory loss. On the contrary, ideally, the knowledge about the problems and its mental health manifestations would allow the professional to diagnose the disease pretty quickly. My colleagues have said that diagnosis should always be made as early as possible. This writer could easily understand that early diagnosis would allow early interventions and would enable the patients and their caregivers to make plans for the upcoming future. One colleague stated that the knowledge and skills contribute to the confidence in diagnosis, but lack of them lead to a situation where the diagnosis is not communicated well. Communicating with these subjects and their families are very important since it is a fact that many families report being abandoned after the diagnosis. Colleagues also report that since the people with dementia need complex support mix from care givers, health services, and social care services, presence of these multiple service providers complicates issues not only for the patients and the care providers but also for the care providers themselves (Keady and Nolan, 1995). Joint working at the local level is the need and an issue, but the journey through it not always smooth. This creates sometimes a considerable barrier for the people with dementia with need of long-term services due to poor integration. Some colleagues think that the role of the professional is not treating, rather establishing and providing continuity of relationship. In practice use of health related knowledge base is very important. The service provider must know which is usual and which is unusual. Some colleagues in the practice area think that the most important aspects of care to these individuals are establishing and providing a continuity of relationship. This objective can be materialised through use of a health-oriented knowledge base on dementia. Networking is an important part, where relationship building is of essence, where a commitment to a sustained relationship is understood, where the receiver can feel the friendship. Clear communication is the heart of a sensible care to these people. It is not all. Knowledge about the health conditions, the symptoms, and their meanings bear paramount importance in the care of these individuals. Early stage symptoms are warning signs, and otherwise normal individuals often misattribute them to stress, normal ageing, and bereavement. These are loss of short-term memory, confusion, poor judgment, and unwillingness to make decisions (Killick and Allan, 2001). To worsen matters further, the person suffering these can become aware about these perceived changes and become anxious, agitated, and distressed. Interventions are best provided at this stage when a person demonstrates inability to manage everyday tasks. In many cases paucity of awareness by the caregivers and denial on the part of them allow this condition to progress unabated until things progress further leading to requirement of more support for activities of daily living. The person affected would become increasingly forgetful, recognition comes to a minimum, leading to a halt in the social life. At this stage collaborative care is necessary since unless, allowed to progress unhindered, these people may be in severe distress due to frustration leading to anger and aggression. These aspects of dementia care need to be handled by other suitably trained professionals, and the social care worker must know the pros and cons of this. Situations may arise where the person's safety may be at peril. In the household or in the nursing homes, appropriate interventions and vigilance are both necessary. There may be wandering behaviour, extreme forgetfulness, inappropriate behaviour, and experience of hallucinations. Appropriate mental health intervention must be called for, and the social worker being the single common point of contact and in charge, would have to know these and know when and whom to contact to seek help. Late stage symptoms are very evident, but this stage demands very hectic care. Forgetfulness reaches its extreme, and social isolation looms large. Effective communication skills based on the principles of building a therapeutic relationship is the key. But rehabilitation and physical nursing are important, since these individuals lack mobility and may have problems with speech, swallowing, inadequate food intake, and health consequences out of all of them. Unless vigilant care is provided which empowers independent living, not quite infrequently, these people may end up in acute care settings or hospital leading to further worsening of the situation. Before and after such events, help from the healthcare facilities may be necessary, and the practitioner must know when to call for them (Kitwood, 1997). Positive Interactions Most people think of dementia as memory loss; however, the most important change in these individuals is behavioural changes. There is a wide variety of behaviour exhibited by the patients with dementia. These are easy distractibility or being stuck in repetitive words and actions. Additionally, there may be restlessness, noticeable anxiety, depression, disinhibition, irritability, sleeplessness, delusions, hallucinations, apathy, and paranoia. Verbal and physical aggression in some cases make matters further complicated. There are a set of cognitive impairments which characterise dementia. These patients' quality of life is affected seriously with the problems they face. They have considerable difficulty retaining new information with frequently lost or misplaced objects. Their personal hygiene is often poor, and this neglect is evident in common household chores. Their judgments are often faulty leading to unsafe decisions. They have reduced interest in society, hobbies, social lives, and family (Keady, 1997). Thus it can be summarised that dementia is a disorder associated with cognitive, emotional, and behavioural changes. This translates into the fact that people with dementia need supportive care and treatment from other people and care professionals in order to maintain wellbeing. Staff should be able to meet these service demands in a comprehensive and therapeutic manner. Specially with patients with mild dementia, the staff may help them in a positive manner to challenge negative conditions, emotions, and feelings so more adaptive ways of viewing situations and events are generated. A positive interaction means the staff can engage the people in a discussion which would help them clarify and define their own problems. In this way, the staff would assist in identification of their thoughts, assumptions, and beliefs. There could be a joint examination of the meaning of these thoughts and events and assessment of consequences of these thoughts. The staff can intensify the interaction and engagement between themselves and the persons with dementia in the care setting (Allan, 2001). A person with dementia can easily be limited by poor and negative expectations, particularly with their losses in social and relationship areas. It is a reality that basic courtesy and social interactions do not occur in dementia services. Sabat (2002) demonstrated appropriate interactions can enhance a person's sense of self. The staff has a professional need to build up relationships in the nursing home patients. These would develop a sense of security, continuity, belonging, purpose, achievement, and significance. In fact, active communication with the patients with dementia is in it a subject to learn. To make things short, it can be stated that everyday interactions with the staff would promote personhood of these people. It has been described that there are ten different forms of interactions which can promote and maintain personhood in care. These are recognition, negotiation, collaboration, play, timalation involving engagement through senses, celebration, relaxation, validation, holding, and facilitation. Demonstration of genuine affection, respect, and acceptance are keys to have a positive communication. The communication must bring in empowerment, facilitation, and enablement in order to generate positive feelings and would foster independence, which would change the quality of life in a positive manner (Sabat, 2002). Suspicions of Abuse Handling of suspicion of abuse is an important issue while caring for the people with dementia. Complaints related to dementia care in the nursing homes usually are related to care practice, staffing, and abuse. Abuse may be financial, physical, verbal, and sexual. Within the nursing home, there are risk policies which serve to link practice and organizational imperatives. The Department of Health (2000) has published a document No Secrets: Guidance on Developing and Implementing Multi-agency Policies and Procedures to Protect Vulnerable Adults from Abuse (Department of Health 2000). This provides the guidelines for protection of these vulnerable adults involving prevention of abuse, protection of these people, and guidelines for responding to abuse when it is suspected. People with dementia very much fall within the category of vulnerable adults since they may be having associated mental disability and are unable to care for themselves or protect themselves. It has been acknowledged that they are at risk within the community and in nursing homes. In relation to professional practice, the safeguards against abuse are inadequate. When suspected, the first step would be to involve the other colleagues and other managers, which would broaden the professional circle of vigilance. Risk assessment and greater multidisciplinary working have been recommended. This interagency working would broadly involve health services, social services, hospital provisions, and community provisions (Clarke, 1999). With all the representatives from selected within the workgroup that handles suspicion of abuse, a work group may be formed. This allows building relationship and trusts among the partner agencies and also allows establishment of core values for service delivery. The group would be divided into subsets such as PCTs, AHTs, the Criminal justice system, social care, and others. A tool is usually developed to help identification of cases of abuse within the residential homes. These are open groups with no secrets and open communications. They group members will have contact points in local police and in national probation service. The local city council will also be involved. The safeguarding vision and interagency safeguarding policies will be published through effective communications and leaflets. Posters are prepared which can be displayed in the staff room which indicates the point of contact at suspicion of abuse (Clarke, 2000). There are audit tools which can evaluate the commitments of these groups to safeguard these adults and can monitor the implementation of multiagency policies and procedures to safeguard against abuse. Support systems available for those providing care Many patients with dementia are cared at home by the family caregivers. The impact of caring a person with dementia is well known in that there are high level of stress, strain, depression, and distress. They suffer from poorer physical health and abnormal mental health. To begin with the support systems for these caregivers were inadequate and without any specialisation. The community mental health nurse used to provide some support (Adams, 1999). A range of interventions has now been developed through the works of health and social care practitioners. It must be stated that there is no theoretical framework for these interventions. The earliest models were based on improving general education of the caregivers. Now this has been expanded to include a broad range of approaches that include enhancement of social and support networks, management of stress, and emotional support, delivered both at group and individual levels. There is no model that can be accepted and applied by nurses or social work professionals. This has resulted in disorganised and different approaches, where evidence from research may be lacking. This is contradictory to the principles of clinical governance which insist on evidence base in practice. Moreover caregivers may have limited access to professionals who could provide the most effective interventions. In dementia care, outcome research has shown that mental health nurses are less effective than social workers. There is no systemic plan to prevent caregiver's problems and address their needs in a proactive manner, and needs for intervention only arose at the time of crisis. If all these issues are solved, the existing lack of transmission of information between the caregivers and the nurses may enhance, and the caregivers may have increased confidence on the staff. Research may be utilised to develop a theoretical framework and model, and the support services may be oriented to that, rather than empiric expertise of the professionals (Bourgeois et al., 1996). Currently Admiral Nurse service is noteworthy since they extend supports to carer for even a long time. This service provides emotional support, provides information, helps skill development, and provides consultancy, training, and education. This service utilises stress management model and identifies unmet needs as the main cause of stress. There is provision of family intervention to educate and support families. They do it through an assessment scale and out of this assessment, they determine the needs of the families. They assist them to acquire a range of coping skills to help them face the problems. The problem solving approach can be a better framework to help the caregivers, which allow the carer to pinpoint the problem and generate a solution with the help of the professionals (Carradice, 1999). About other wider range of therapeutic approaches intended for the caregivers, further research is necessary. Reference List Adams, T. (1999) Developing partnership in the work of community psychiatric nurses with older people with dementia, in T. Adams and C. Clarke (eds) Dementia Care: Developing Partnerships in Practice. London: Baillière Tindall. Adams, T. (2002) Developing partnerships in dementia care, in S. Benson (ed.) Dementia topics for the millennium and beyond. London: Hawker, pp. 58–60 Allan, K. (2001) Communication and Consultation: Exploring Ways for Staff to Involve People with Dementia in Developing Services. Bristol: The Policy Press/Joseph Rowntree Foundation. Bourgeois, M., Schulz, R. and Burgio, L. (1996) Interventions for caregivers of patients with Alzheimer’s disease: a review and analysis of content, process and outcomes, International Journal of Ageing and Human Development, 43(1): 35–92. Clarke, C.L. (1999) Professional practice with people with dementia and their carers: help or hindrance?, in T. Adams and C.L. Clarke (eds) Dementia Care: Developing Partnerships in Practice. London: Ballière Tindall. Clarke, C.L. (2000) Risk: constructing care and care environments in dementia, Health, Risk and Society, 2(1): 83–94. Carradice, A. (1999) A qualitative study of the theoretical models used by mental health nurses to guide their assessments of family care givers for people with dementia. D.Clin.Psy. thesis, University of Sheffield. Department of Health (2006) New Ambitions in Old Age. DOH London. Department of Health (1994a) Working in Partnership: A Collaborative Approach to Care. London: The Stationery Office. Department of Health (2000) No Secrets: Guidance on Developing and Implementing Multiagency Policies and Procedures to Protect Vulnerable Adults from Abuse. London: Department of Health. Department of Health (2001) National Service Framework for Older People. London: The Stationery Office. Downs, M., Clibbens, R., Rae, C., Cook, A. and Woods, R. (2002) What do general practitioners tell people with dementia and their families about the condition? A survey of experiences in Scotland, Dementia: The International Journal of Social Research and Practice, 1(1): 47–58. Illiffe, S. and Drennan, V. (2001) Bradford Dementia Group Good Practice Guides: Primary Care and Dementia. London: Jessica Kingsley. Keady, J. and Nolan, M. (1995) A stitch in time – facilitating proactive interventions with dementia caregivers: the role of community practitioners, Journal of Psychiatric and Mental Health Nursing, 2: 23–40. Keady, J. (1996) The experience of dementia: a review of the literature and implications for nursing practice, Journal of Clinical Nursing, 5: 275–88. Keady, J. (1997) Maintaining involvement: a meta-concept to describe the dynamics of dementia, in M. Marshall (ed.) State of the Art in Dementia Care. London: Centre for Policy on Ageing. Keady, J. and Adams, T. (2001) Community mental health nursing and dementia care, Journal of Dementia Care (Research Focus), 9(1): 35–8. Killick, J. and Allan, K. (2001) Communication and the Care of People with Dementia. Buckingham: Open University Press. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Miller, C., Freeman, M. and Ross, N. (2001) Interprofessional Practice in Health and Social Care. London: Arnold. Sabat, S. (2002) Surviving manifestations of selfhood in Alzheimer’s disease. Dementia: The International Journal of Social Research and Practice, 1(1): 25–36. Read More