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The purpose of this essay is to examine the historical and political perspective of social work provision in relation to people with dementia. It will explore how the development of social work practice has transformed these groups, the impact of social exclusion they experienced that lead to discrimination and/or oppression and the benefit of listening to service users’ views.
The primary mission of social work profession ‘is to enhance human well-being and help meet the basic human needs of all people, with particular attention to the needs and empowerment of people who are vulnerable, oppressed and living in poverty’ (Baker 1999 Pg 55). Social work has an important role to play in coordinating efforts to support people with dementia who may often have negative experiences of mental health services. As a result, it will be a challenge to provide effective social support to these groups in an environment where their views are being seen as significant and where they do not receive services fairly and uniformly (SCIE July 2008).
The medical terms ‘dementia’ has developed since the 19th century and was used to describe people whose mental disabilities were secondary to acquired brain damage, usually degenerative and often associated with old age (Tibbs 2001). Before the 19th century, a person with dementia would probably have been confined to the workhouses. (Marshall et al 2006). During this period, many sufferers were taken away to a Workhouse Infirmary with medical care on hand and given outdoor relief (Denney 1998). Whereas charities began to emerge during this era however there were no good measures in place to deliver social work services; no criteria to determine who the ‘deserving and ‘undeserving’ poor were, therefore help provided were viewed as indiscriminate (Howe 2009).
As the 1940s progressed, there were new developments and approaches in the treatment of people with mental disorders. Poor houses for destitute elderly people were slowly replaced by old people’s homes (Marshall et al 2006). The period after the Second World War saw the development of the welfare state. There was a national agreement that the state has an obligation to provide full services in order to respond to problems of poverty, mental health, old age etc (Tibbs 2001).
The implementation of Beverage report published in 1942 directed at abolition of squalor, want, ignorance, disease and idleness. The National Assistant Act 1948 laid a foundation upon which future social work was built and created departments to meet the needs of different client groups (Tibbs 2001). During the late 20th century, both conservative and New Labour legislation have an impact on Mental Health reformation. The establishment of Social Service Departments introduced in 1970 reviewed in Seebohm reports (1969), enabled Local Authorities to promote welfare services for the elderly which had not already been included within the framework of some other statutory body. (Tibbs 2001).
The 1983 Mental Health Act introduced during the conservative regime mark a further move towards legislation to improve matters with statutory requirements and procedures for social workers to be properly trained in order to carry out professional assessments. The Act ensures professionals who work with elderly people with dementia and indeed those who suffer from mental disorder have a basic understanding of the Mental Health Act, even if they do not act as Approved Social Workers (Tibbs 2001).
The role of carers have also been crucial in the field of dementia care through the introduction of The Carers Act 1995 & 2000, which gave statutory recognition and right to carers, and funding through provision of Direct Payment (Marshall et al 2006). The Mental Capacity Act 2005 is also a relevant Act to people with dementia and their carers. It includes the provision of independent Mental Capacity Advocates (IMCA) to protect vulnerable people and dementia sufferers to gain more control over their lives, plan for the future and have their retained abilities recognised.
It is important to address the impact of discrimination on these service groups as they suffer disability and as a result are subject to degrading treatment from the relatively powerful groups within the society. (Tibbs 2001). Research shows that the society’s fear towards dementia causes them to avoid people with the condition making them feeling isolated and stigmatised (BBC 2010). According to Thompson (2006), discrimination is a process through which a difference is identified, and can be positive or negative. He suggests that negative discrimination also involves making a negative attribution and attaching devalued label to a person.
Dementia is one of the major causes of disability in the elderly, affecting personal care, everyday cognitive activities and social behaviour. To be diagnosed as having dementia involves a great deal of stigma, often resulting in disadvantage and loss of life chances by the sufferers. (Kitwood 1997). Although, dementia is strongly associated to elderly but research shows that increase number of people diagnosed with the ill-health are under 65 years of age and are referred to as ‘young onset dementia’ (SCIE not dated). These service users are likely to experience inequality because society and professionals fail to recognise that dementia exists in this age group and they can continue to integrate within the society (SCIE not dated). They will have different circumstances in life from older people with dementia because they are more likely to be in paid employment, have young children and have financial commitments.
They will have to discontinue employment as most services are not able to cope with their condition which means promotion prospect and pension entitlements are lost. (Marshall et al 2006). Feelings of discrimination and oppression may also be a barrier to people asking for support (Downs et al 2008). From experience, some people from black minority ethnic groups (Asian and Black Community) diagnosed with the ill-health would rather keep it in the family than to get help because they see it as being shameful (BBC 2010). Furthermore, accessing services can be complicated because there are no age-specific services available as most of the developed services are for older people with dementia (Tibbs 2001). Lack of access to services could result in extra burden being placed on families when the care needs exceed the ability to provide (Downs et al 2008).
Emotional impact is one of the significant factors experienced by dementia sufferers. There is also a prejudice with sufferers because of the association with madness and psychiatric disorder that the label creates. (Brooker 2007). They also experience social isolation due to withdrawal of friends which diminishes their social networks and inability to meet a perceived societal expectation. (Crawford 2004). From experience with elderly, people sometimes hold ageist view against them by the way they talk to them e.g. name calling as ‘sweet old lady’. According to the Alzheimer Society publication, ageist societal attitudes compound the experience of elderly people with dementia who already appear to be prejudiced because of their age and intellectual decline. (Crawford 2004).
Health professionals often consciously or otherwise oppress elderly with dementia because of their position of authority which could prevent them from making their own choice thereby disempowering them (Crawford 2004). From experience, professionals sometimes in their attitudes assumed elderly people with dementia are incapable of providing valid information or making decision for themselves, by constantly focusing their attention to their carers instead of the service users. They are often seen as being a burden to the state economy resources and are subjected to considerable pity as they are deemed to be ‘out of their mind’ Crawford (2004).
Research shows that it is often assumed that people with dementia are not articulated enough to express their opinion or views on any aspect of their lives because of problems with communication through speech (Brooker 2007). As a result, practitioners inclined to rely on alternative views, usually provided by family carers, rather than their view. However, the needs, experience and perception of the carer might be different from that of the person they are caring.
Empowerment and giving voices to people with dementia is a vital part of anti discriminatory/oppressive practice. (Tibbs 2001). The needs for communicating and empowering dementia sufferers by involving them in decision making became major considerations within social works field. It is anticipated that the Mental Capacity Act, 2005 will address some of these issues. Begum (2006, P.3) defined user involvement as ‘participation of users of services in decisions that affect their lives’. People with dementia voices can be valued by promoting active participation within care relationship regardless of their age or cognitive impairment rooting out discriminatory practice. (Marthorpe et al 2003). Involving service users in decision making often leads to increased self-esteem and confidence. (Chaston et al, 2004, P.19) quotes that ‘It is good to feel valued and to be somebody, not just anybody’
Effective service therefore must be provided to change the needs of people with dementia (Cantley 2001). One of the main principles to consider in social work code of practice as stipulated by the General Social Care Council (GSCC) is the right of service users to be treated with dignity and respect in order for them to make informed choices about the services they received. Practitioners must therefore acknowledge who they are, listen to their circumstances; treat them as a unique person with worthy of dignity and respect. It is therefore imperative that during intervention with service users with dementia, health practitioners should go beyond safety to promote their choice, maintain independence, autonomy and their self determination Cantley (2001).
It is essential to encourage these service user groups to express their views and preferences in order to build their personal strengths and confidence. Listening to them will provide them the opportunity to express their views on how dementia affects them, what they consider important in their lives, including how services should meet their health and social care needs (Tibbs 2001). People with dementia, either independently or in small groups, should be given the right to participate directly in service planning and development processes (Warren 2007). Practitioners can provide a range of methods and approaches which will enable them to make a choice that will influence future service provisions. They can be engaged to make decision through direct observation and communicating using specific tools or systems (Warren 2007).
This will enabled the practitioners to have a better understanding of individual needs particularly, of people diagnosed with dementia that have complex needs and communication impairment. Research shows that these service users’ groups can still articulate their opinions about their well-being and quality of care even though they are severely cognitively impaired (Mozley et al 1999). For example, Talking Mat is an innovative method of allowing their views to be heard in order to make decision about managing different aspect of their life (SCIE not dated). They can also be involved in activities through collective approach which will provide them the opportunity to be in control by acting collectively to influence services and the broader communities. Such activities are often combined with elements of peer support and empower them through collective involvement (Cantley 2001).
It is also important to devise services that will fulfil their needs by obtaining the necessary information from them, which could be by occasionally adjusting services that were designed to meet their needs as perceived by others. Information about their routines, choices, preferences, culture before, during and after they are diagnosed with the ill-health, which is important to their well-being and at their best interest must be documented in their care plan in order to meet their needs and to organise their care support effectively. (Cantley 2001). Organisations such Alzheimer Society and Social Care Institute of Excellence provide support to carers and health professionals to improve the quality of life of people affected with Dementia through web resources, free e-learning programmes etc in order for their voice to be heard (Alzheimer’s Society). Also, The National Dementia Declaration for England has made a pledge to improve services for service users and carers by ensuring that they have choice and control over the decisions that affect them and live in a supportive environment (Community Care 2010).
Overall, it can be concluded that over the years, there have been changes in development of social work provision which has brought about important legislations to tackle the issues of discrimination and oppression on people with dementia. It has been evaluated that public and professional attitudes towards ageing and the ill-health are now changing rapidly. It was also recognised that through good social work practice, involving dementia sufferers in decision making would enhance empowerment; promote their choices and self determination while maintaining independence. This provided me with understanding of how services’ views are essential in improving social service provisions. It is therefore imperative to encourage further learning within social work provision to ensure good practice is sustained.
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