| CODE | GER5109 | |||||||||
| TITLE | Dementia and Ageing: Policy Directions and Ethical Choices | |||||||||
| UM LEVEL | 05 - Postgraduate Modular Diploma or Degree Course | |||||||||
| MQF LEVEL | 7 | |||||||||
| ECTS CREDITS | 5 | |||||||||
| DEPARTMENT | Gerontology and Dementia Studies | |||||||||
| DESCRIPTION | This study-unit will illustrate how dementia presents a significant and urgent challenge to health and social care in terms of both numbers of people affected and cost. For the older persons living with dementia, their families, health care professionals and policy makers, the challenges are huge and the economic costs are astounding. Primarily, the study-unit will present contextual information on Alzheimer's disease as well as related dementia disorders, describing also the difficulties experienced by the older persons living with dementia, their informal and formal carers. The ethical framework components of, (a) case-based approach to ethical decisions, (b) quality of life in dementia, (c) promoting the interests in autonomy and well-being, (d) solidarity and (e) recognising personhood, will successively be described. The ethical approach to care will be also explored. This part of the study-unit will include discussions on, (a) an ethical approach to a care pathway for the older person living with dementia, (b) communication of the diagnosis, (c) ongoing care and support, acute and rehabilitative hospital services and (d) end of life palliative care. The study-unit will also tackle society's perception of dementia, the stigma and the inclusion (or not) in everyday life, and the role of society in providing care and support. Making decisions and dilemmas in care will also form part of this study-unit. This component will consist of discussions on balancing the past and present, advance decisions and advance care planning, as well as pressure for assisted suicide and euthanasia. Abuse by family and friends will be discussed; as well as subjects on assistive technologies, sexual relationships and sexual disinhibition. The needs of informal and formal carers, as well as involving older persons living with dementia in research and the general approach to research priorities will sum up this study-unit. Study-Unit Aims: The study-unit aims to, - identify and consider the ethical, legal, policy, economic and societal issues, arising in caring and treating older persons living with dementia; - look at the ethical issues affecting older persons living with dementia, informal and formal carers, health care professionals, societal services and society in general, zooming in on, (a) decision-making and capacity to consent, (b) respect for the autonomy of the older person living with dementia, informal and formal carers, (c) the 'best interests' and quality of life of the older person living with dementia, informal and formal carers, and (d) the impact caused by the changes in behaviour that affect the older person living with dementia; and - explore the legal, policy, educational and research implications of the ethical issues surrounding the care and support of older persons living with dementia and their families, capturing the differing cultural and societal contexts of, (a) implications of the advanced directive or living will, relative to palliative care and end of life issues before or after the diagnosis, and (b) the adequacy of care and support for the older persons living with dementia and their families. Learning Outcomes: 1. Knowledge & Understanding: By the end of the study-unit the student will be able to: - analyse the incidence and prevalence of dementia, as well as the experiences of the older persons living with dementia, treatments and available support; - appraise the components related to the dementia ethical framework; - establish how the framework could be practically applied in the day-to-day care of the older persons living with dementia, whether in their own homes, or care homes or acute/rehabilitative setting; - describe the public perceptions of dementia; - apply the concept of effective decision-making; - discuss the ethical dilemmas in care, freedom of action and risk, as well as the potential situations of abuse by informal and formal carers; - evaluate how a good quality of life is possible for the older person living with dementia; and - demonstrate how research could be prioritised as well as considering the particular difficulties arising when older persons living with dementia are involved in research studies. 2. Skills: By the end of the study-unit the student will be able to: - tackle the ethical issues arising as a result of dementia, drawing both on the current state of scientific knowledge and on the direct experiences of the older person living with dementia and of those caring for them; the emphasis on neither is sufficient alone; - utilise the dementia ethical framework to assist in (a) the relationships between the older person living with dementia and others in society, (b) when making health and welfare decisions, (c) in aspects of care which pose particular challenges, (d) in the consideration of informal and formal carers' own interests, and (3) in research; - apply the ethical framework in the everyday lives of the older persons living with dementia, informal and formal carers; - recognise that the public silence revolving around dementia is beginning to disperse and discuss ways in which remaining taboos may be tackled openly; - realise that there is no straightforward right or best or no answer; and that the essence of approaching such decisions comes with both flexibility and compassion, that are founded on the respect for the value of the older person living with dementia; - recognise that ethical, mundane, ordinary problems arise frequently in the day-to-day care of the older person living with dementia. Such situations are the result of the feelings of isolation and lack of support of the carer providing care. Critical judgment is of essence in such situations; - enhance the skills for effective partnerships in care; and - bring to the fore, good ethical reasons, based on concern for the person's autonomy and well-being, ensuring that strong safeguards are in place to protect the older person living with dementia from being harmed by research. Main Text/s and any supplementary readings: Main Texts: - Bourgeois, M.S. & Hickey, E.M. (2009). Dementia: from diagnosis tomanagement: a functional approach. East Sussex: Psychology Press. (Available in Library) - Smith, G.E. & Bondi, M.W. (2013). Mild cognitive impairment and dementia: Definitions, diagnosis, and treatment. Oxford: Oxford University Press. (Available in Library) Supplementary Readings: - Adams, T., & Clarke, C. (1999). Dementia care: Developing partnerships in practice. Bailliere Tindall Published in association with the RCN. (Available in Library) - Alzheimer Europe. (2019). Dementia in Europe yearbook 2019: Estimating the prevalence of Dementia in Europe. Luxembourg: Alzheimer Europe. (Available in Library) - Bartlett, R. (2010). Broadening the dementia debate: Towards social citizenship. Bristol: Policy Press. (Available in Library) - Binstock, R., Post, S., & Whitehouse, P. (eds.) (1992). Dementia and Aging: Ethics, values and policy choices. (Available in Library) - Challis, D., Sutcliffe, C., Hughes, J., Abendorff, R., & Brown, P. (eds.) (2009). Supporting people with Dementia at home: Challenges and opportunities for the 21st century. Surrey: Ashgate. (Available in Library) - Downs, M., & Bowers, B. (eds) (2008). Excellence in dementia care. Research into practice. Buckingham: Open University Press. (Available in Library) - Innes, A., & McCabe, L. (eds.) (2007). Evaluation in dementia care. London: Jessica Kingsley. (Available in Library) - Kitwood, T.M. (1997). Dementia reconsidered: The person comes first. Maidenhead and New York: Open University Press. (Available in Library) - O'Connor,D., & Purves, B. (2009). Decision-making, personhood, and dementia: Exploring the interface. Jessica Kingsley Publishers. (Available in Library) - Parliamentary Secretariat for Rights of Persons with Disability and Active Ageing. (2015). Empowering change: A national strategy for dementia in the Maltese Islands. Retrieved from https://activeageing.gov.mt/en/Documents/book_english_book.pdf - Regional Statistics Malta: 2021 Edition. (2021) https://nso.gov.mt/en/nso/Media/Salient-Points-of-Publications/Documents/2021/Regional 2021/Regional Statistics 2021_full publication.pdf - Scerri, C. (2012), Challenges of developing A dementia strategy: The case of Malta. In A. Innes, F. Kelly & L. McCabe (eds.), Key issues in Evolving Dementia Care (pp. 150-172). London: Jessica Kingsley. (Available in Library) |
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| STUDY-UNIT TYPE | Independent Study and Online Learning | |||||||||
| METHOD OF ASSESSMENT |
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| LECTURER/S | Rosette Farrugia Bonello (Co-ord.) Peter Ferry |
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The University makes every effort to ensure that the published Courses Plans, Programmes of Study and Study-Unit information are complete and up-to-date at the time of publication. The University reserves the right to make changes in case errors are detected after publication.
The availability of optional units may be subject to timetabling constraints. Units not attracting a sufficient number of registrations may be withdrawn without notice. It should be noted that all the information in the description above applies to study-units available during the academic year 2024/5. It may be subject to change in subsequent years. |
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