What happens to family life/partnership when dementia is diagnosed

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The purpose of this study is to identify what happens to family life after dementia is diagnosed. This includes the impact of being separated from a partner or spouse when dementia is diagnosed. The research will try to show how dementia can be seen as an end to family life as the mental capacity of a person with dementia is limited. It also aims to research whether there is a need for specialised accommodation to assist in the care of the service user and create a positive way for couples to maintain family life with dementia.


This research project developed from my role as a carer working for the local authority from 2006 to date. I noticed that many service users were alone at home and their partners were in a residential nursing home. Scourfield (2004 :502) has said that over the last two decades there has been a significant shift in which services in which the criteria for nursing care was provided by the being eligible for supplementary benefits. In 1983 the government policies which were introduced, allowed people to be funded by the social security system if they were on a low income. Scourfield (2004: 502) also acknowledges the 1980’s and 1990’s policies opened up the private sector as payments were available for service users on low income so long as they fitted the benefits criteria.

In 1990 the NHS Community Care Act 1990 made major changes, service users were assessed under the by the local authority which was means tested. Although the idea behind the Community Care Act 1990 was to maintain people at home, during my time as a carer with the local authorities, only once have I seen anyone with Dementia (living at home alone) with 24 hour care (she was self funding). I have noticed through personal involvement that, not all service users with dementia are sixty and above, dementia can strike at almost any age.

My aim therefore is to locate the gap in accommodation when caring for dementia service users to enable them to live life in specialised accommodation as a family. Dementia service users need more care as their disease progresses and respite where they are placed in a care home can be seen as detrimental to the service user and can create more stress for the carer/.partner on their return home, which could be seen to undo the benefit of the initial respite.

Introduction to the Project

My proposed research would be created to analyse whether it is cost effective to provide care on a twenty four hour basis or in specialised housing which could support the carer and the service user, or whether human rights should be forfeited and family life be denied to the partner or spouse of the service user with dementia. Through personal knowledge developed in the management of some of the nursing homes in the West Midlands I am aware that they have the ability to accommodate couples in private nursing homes, although this may not be possible when one partner does not reach the criteria to be there. For example, if a female has dementia at 60 and her partner is 58 and able bodied, the care home may decline to allow them to move to residential care.

As social workers, we work to the GSCC code of practice (2002 :2) The GSCC code of practice (2002) states we should protect the rights and promote the interests of service users and carers. Therefore, in this research, my aim is to show there is a gap in legislation on the provision of sheltered accommodation which could give support and maintain peoples right to family life when they are faced with caring for dementia service users,. If legislation was provided to enable specialised accommodation for people with dementia and their partners it could enrich the lives of thousands of carers and service users. Therefore my research proposal is designed to protect and promote the interests of service users with dementia and their partners by looking at the provision of specialised care and housing facilities to accommodate their needs.

Beck (1992: 1264) cited in McLaughlin, states that “contemporary society is no longer primarily concerned with attaining something ‘good’ but with preventing the worst”. Therefore by creating appropriate legislation to enable facilities for people with dementia to live in a family home or accommodation which provides the necessary care and respite for the carer without removing them from a family situation maybe a step towards positive non oppressive work in the field of mental health and service users with dementia.

The Royal Commission on long term cases ( cited in Parker 2001) states that research has shown dementia is on the increase and research to promote or develop better services are important. There are residential care services available for most groups of service users, including, residential for the elderly, residential for children and mental health facilities and although there appears to be a need for specialised housing facilities to accommodate both the service users and their spouse/partners, there is no apparent legislation to implement it, furthermore if specialised housing was available the partner who is the carer would have emotional and physical support as well as being able to socialise with others.

Isolation and support are important to the carer of someone with dementia as is respite from constant caring. As respite for some one with dementia can be seen to create disruption by removing them from a known environment, this removal /respite would no longer be necessary with gthe provision of carers who are able to cover it would create a network of support and it would open a door which enables socialising for both carer and service users.

Aim and objectives of the project

The NHS Community Care Act 1990 legislation was to provide service users with an assessment of need (s47). This assessment for the service user enabled a package of care which would be ‘Taylor’ made’ to their needs to be implemented.

* To identify patterns of what is available for couples once dementia is diagnosed to enable them to remain together should they chose to do so.

* To identify what factors are associated with the effect dementia has on partnership and how to prevent isolation.

* To identify whether there is a way to identify a need for specialised accommodation for partners/couples which may allow socialisation after dementia claims the mind.

* To discover if there is a gap in dementia care which needs closing by the provision of specialised sheltered accommodation.

Literature Review

Prince, (cited in Alzheimer’s Disease International, 2004) states that there are real concerns about the growth in numbers of people with dementia, these numbers appear to be doubling worldwide and could be up to 34 million by 2025, direct costs are currently running at approximately ten billion pounds per annum (which outstrips the costs associated with heart disease, cancer and stroke combined).

Elizabeth Rimmer, (cited in Alzheimer’s disease International, 2004) states that she feels that we are “facing a dementia epidemic and there is no time to lose” (cited in Alzheimer’s disease International, 2004:1). Whereas, The Royal Commission on Long Term Cases (cited in Parker 2001: 553) believes that although this trend is expected to continue until 2030, they are optimistic about the future due to the drop of birth rates in the UK, they also state that “in a sense the UK have lived through its demographic ‘time bomb'”. The recommendation made by Alzheimer’s disease International was to promote better services for dementia/Alzheimer’s sufferers. Therefore the need for research on this subject in my view is warranted.

Alister MacDonald a consultant psychiatrist and Tom Dening a professor of old age psychiatry (cited in British Medical Journal, 2002 March 2; 324(7336): 548) wrote an article for the Department of Health (2001) where they stated that they believe dementia care has become the main business of almost any residential or nursing home for older people. They suggested in this article that society should demand specialist homes for people without significant dementia, in which their autonomy and self fulfilment can be safeguarded.

A minority of care homes and nursing homes are available although they are mainly designated for elderly mentally infirm people, most of the residential homes are for people who are not elderly mentally infirm (MacDonald, A., Dening, T. 2008). This data closely resembles a small part of my research, although it does not appear to look at the provision of how to give support for the partner of the service user in specialised sheltered housing.

Design and Methodology

In this research the methodological framework I will use will be qualitative and will be specifically aimed at empowering couples to remain as couples or partners as they were at the pre-dementia stage. My aim is to collect data by the use of literature and by conducting interviews using a structured (appropriately worded to ensure it is unbiased) questionnaire rather than a semi structured questionnaire. (A structured questionnaire is based on asking questions which do not wander from the subject).

This would be completed through interviewing three social workers and asking each one the same questions, then analysing and evaluating the answers. Although after the questionnaire, viewpoints on the topic could be expressed through a group discussion on the chosen subject after the initial survey. I would also use available literature to explore other available research already carried out on this subject. Although there does not seem to be large amounts of literature on this particular subject, although there is data available in similar subjects for other groups. The concept of this research is accessible and observable and is therefore measurable which means that the concept of my research proposal can be seen as a valid subject (Sarantakos 2005: 139).

Ethical Considerations

My aim would be to approach social workers who work in dementia or mental health to assist me with a questionnaire and then a group meeting after where my main function would be as a facilitator. I would then compare the answers to conclude what they would do in set scenarios. To approach this is type of survey is something the university ethics committee would need to give approval for my proposal to continue.

Due to having a physical disability, I would ensure I have a recording facility to ensure accurate data compilations. I would also compliance with the data protection act 1998 and ensure that the person completing the survey would not be identified under their real names and that any information given will be confidential and only used for the purpose it was originally designed for. The main reason for using the social worker to complete the survey in this research is of the ethical aspect of how distress could be created for service users or their partners

Once approved I would need to seek written consent from the social workers which would define how the research would be used and who would have access to this data. However, it is impossible for the respondents to remain anonymous as the researcher will know who they are talking to. Ethics will be considered before, during and after the interviews, in relation to informed consent and not damaging the respondent and by talking about issues in a sensitive way. The respondent would need to be someone who has experience of the topic that is to be researched; it is my belief that the social workers from a mental health department would be more effective in this research as they have many different views from various service users. This type of questioning may present as problematic for a service user and unethical.

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