The Impact of Decline on Everyday Life in Alzheimer's Disease

The loss of independence is a quintessential feature of dementia and important to the clinical diagnosis of Alzheimer's disease (AD). However, changes in memory and other cognitive abilities can significantly influence the rate and the trajectory of decline in everyday life. The goal of this chapter is to provide the reader with a picture of how the cognitive and emotional changes associated with AD can alter daily living in the early-to-moderate stages and the subsequent psychosocial impacts. Practical suggestions with regard to management of AD by the affected individual and supporters are offered, as are some suggestions for addressing completion of daily tasks, such as finances, medications, appointments, and transportation.

Spiritual Factors in the Experience of Alzheimer's Disease and Other Dementias

Alzheimer's disease and other dementias raise important questions of personhood and connection for those affected. Finding meaning in the face of dementia is one of the most challenging aspects of dementia; spiritual reminiscence is a way of connecting with those with dementia when their cognitive decline seems to preclude them from participating in a meaningful life. In this chapter a context for spirituality in later life is given through description of the spiritual tasks and process of ageing. This leads to presentation of work based on a mixed methods study of 113 people in residential aged care with a diagnosis of dementia who participated in either six or 24 weeks of weekly sessions of guided spiritual reminiscence (MacKinlay & Trevitt, 2012). Relationship was found to be almost synonymous with meaning for these people. Other important themes identified were vulnerability and transcendence, wisdom, hope, despair, and response to meaning.

Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia Self-Help Groups in Germany

In this chapter, results from the qualitative longitudinal Selbstbestimmung und Intervention (SEIN) study conducted at the DZNE site in Witten are presented and discussed against the background of a previously conducted systematic review of the subjective needs, demands, and coping strategies of community-dwelling people with dementia. The objective of the study was to examine how participants of dementia self-help groups in the early and middle stages of the condition cope with their illness. A phenomenological approach with a life-course perspective served as the framework for the study. The findings suggest that a person's self-concept is not changed by dementia but instead adapts over the trajectory of the illness. Struggling between external control (defence against stigmatization) and external protection (being taken seriously), and aiming for “Inner Security” were central concerns for the participants. Biographical background and social network are determining factors in the development and use of coping strategies.

Cognitive Decline and the Changing Self in Relationship

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

Art, Drawing Task Processes, and Identity Awareness

Non-pharmacological treatments for dementia include a variety of approaches, including art and drawing therapy, that aim to develop new connections between neural circuits through non-verbal memory systems. The current chapter presents a pilot study of an art therapy and reminiscence program in which drawings made by persons with dementia attending a day care center in Spain were compiled and analyzed to identify features that remain constant and those that evolve during progression of this dementia. For illustrative purposes, the chapter presents the case study of a 92-year-old woman who participated in all nine art therapy and reminiscence sessions conducted as part of this pilot study. Her drawings clearly illustrated the “retro-genesis” phenomenon. Modifications in the elements of her drawings are presented as an example of the degeneration in drawing processes that can be a marker for the evolution of cognitive decline. Despite the changes in this participant's drawings, her reminiscences reflected a retained sense of identity.

Self-Preservation in Individuals with Alzheimer's Disease

The purpose of this chapter is to highlight empirical evidence for the presence and persistence of self in individuals with Alzheimer's disease. First, the authors review their previous findings (Fazio & Mitchell, 2009) that revealed the persistence of self via language usage and delayed visual self-recognition data. Second, the authors present previously unpublished data demonstrating that both level of impairment (mild or moderate) and setting (residential or day center) are related to language usage. Third, the authors review the most recent literature about the self in individuals with Alzheimer's disease, as well as discuss social positioning and its impact on individualized care.

Awareness, Self, and the Experience of Dementia

It is now widely acknowledged in policy and practice that the individual with dementia retains the status of a person and the essence of selfhood, has the right to be heard, and has the capacity to live well with the disabilities that dementia brings, given appropriate support. Nevertheless, negative assumptions about dementia as a ‘loss of self' and a ‘living death' remain influential. This chapter examines research evidence that can provide a foundation for a psychologically minded approach to dementia care and help to create a more constructive view of what it means to live with dementia. In this chapter findings are drawn from projects conducted by the Research in Ageing and Cognitive Health (REACH) group at Bangor University, UK on awareness, self-concept, identity and the experience of dementia for people across the dementia trajectory. The REACH group is now at the University of Exeter, UK.

Steve's Story

Through a collaborative process with his co-authors, Steve shares his story of how he, at age 60, experiences life with mild cognitive impairment (MCI). Both audiotaped self-narration and an interview were used to elicit Steve's story, which was transcribed by his wife, Gincy. After an introduction presenting the authors' approach to this chapter and Steve's background, he shares his story in his own voice, as audiotaped. A subsequent interview elicited Steve's feelings about sensitive topics such as depression and anger to explore the full range of his thoughts and feelings about his situation. In the discussion, the third author places Steve's story into a contextual framework by addressing the unique aspects of diagnosis at a young age and comparing his experience to the larger literature on identity, coping, and awareness in MCI and early dementia.

Changing Perception in Alzheimer's

In this chapter, the author will explain how the predominant models for viewing Alzheimer's and other forms of dementia fail to provide an adequate understanding of the changing perceptions of people who live with these conditions and consequently limit our ability to provide effective support. An alternative “experiential” model will be presented and used to reframe several concepts regarding the changing mind. New insights from this model inform an innovative approach to understanding and supporting people whose perceptual mechanisms and communication abilities differ from those of their care partners, and suggest a strength-based framework for enhancing several aspects of well-being, regardless of one's diagnosis or cognitive ability.

Disease Awareness, Cognitive Decline, and Communication in Persons with Mild Cognitive Impairment and Caregivers

The purpose of this chapter, which is based on our pilot research, is four-fold: 1) to describe the awareness of persons with mild cognitive impairment (PwMCI) of their cognitive changes and meaning of the diagnosis, and their family caregivers' perceptions of the same; 2) to identify PwMCI's concerns about living with MCI; 3) to discuss PwMCI and caregiver perceptions of a patient- and family-centered daily enhancement of meaningful activity (DEMA) program; and 4) to describe the potential benefits of DEMA using case examples. Discussion is based on findings from interviews with PwMCI and family caregivers designed to explore awareness of cognitive changes and the diagnosis, as well as experiences living with MCI. In addition, results from three focus groups to assess content validity and acceptability of the program and from a pilot intervention study to evaluate the feasibility and acceptability of the program contributed to the discussion. Findings support further testing of DEMA in larger and more diverse samples.