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An overview of the impact of dementia that focuses on underdeveloped countries across the globe, and migrant and minority ethnic communities within the developed world. Increased longevity increases the risk of dementia and brings new challenges in terms of cultural perspectives and cultural obligations in the care of elders. The chapter examines these challenges in detail and their consequences in planning for support and care.

Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical models, several scholars highlight the preserved skills of persons with dementia. Identity, or a sense of self, is among the areas relatively preserved in the later stages of dementia. It is the window through which caregivers understand the subjective experiences of persons with dementia.

This qualitative exploratory study highlights the value of social relationships, particularly the role of the Filipino family in recognizing personhood and maintaining identity in dementia care. Preserving identity entails understanding the person’s unique characteristics that reflect one’s sense of self. In a highly collectivistic culture, such as the Philippines, the family is crucial to preserving identity and overall well-being in dementia. This study explores the perspectives of 15 Filipino caregivers as regards caring for a family member with dementia. Participants discuss changes in family structure and the challenges in dementia care. More importantly, they delve into strategies used to preserve identity and encourage life participation in their loved one with dementia. Essential Filipino cultural values in dementia care, such as collectivism, religion, and the values of filial piety and utang na loob (or debt of gratitude) are further discussed.

This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

This chapter will begin by exploring the importance for people living with dementia of maintaining a sense of self or ‘personhood’, and how this is linked directly to wellbeing. It will chart how the initial pilot projects were developed to embrace older people living with a dementia diagnosis, and how we teamed up with different partners in Brazil and on Merseyside, showing how the methodology outlined in the toolkit can be used to foster this sense of self or ‘personhood’. In both geographical locations it proved vital to establish contacts with enthusiastic partners and to work closely with occupational therapists and/or nursing home staff. On Merseyside we also benefitted from the expertise of a local community cinema which had extensive experience of running dementia-friendly film screenings. Finally, drawing on concrete results from the use of the toolkit's methodology in a recent project that Lisa conducted in Brazil, this chapter will present some conclusions about how music and film can help carers connect with the person living with dementia, and be used as a powerful tool for restoring a sense of personhood, thus increasing a sense of wellbeing and improving the quality of care.

Persons living with dementia (PLWD) constitute a global epidemic of more than 50 million people around the world, and tens of millions more serve as their caregivers. Public libraries must learn to assist, support, and sustain those with dementia in their communities. The good news is that some of the most powerful non-pharmacological interventions for PLWD – healthy lifestyle choices, lifelong learning for mental stimulation, and the stimulation and support of social networks – all are embedded in public libraries’ core mission. Thus, library services for the underserved population of PLWD and their caregivers can make a huge collective impact toward sustainable communities, social justice, and strong institutions.

Libraries can provide this help through dementia-friendly customer service and through programming that both supports individuals and develops and strengthens social relationships. Libraries can further promote good health and well-being, both through information resources and with targeted older adult programming. We can simultaneously contribute to social justice, mitigating the stigma and the deleterious effects of dementia which can be worse within minority communities. The positive impact of library dementia services can even be magnified through collective impact when different institutions within a community work together toward dementia-friendly standards.

This reflective chapter details the operation of library services for PLWD and their caregivers, providing concrete examples of dementia-friendly customer service, collection development, information and reference services, and a wide variety of older adult programming. Together, these library dementia services can create a powerful and positive impact through lifelong learning, mental stimulation, and social connections.