Suchergebnisse

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

Abstract

Objectives
This research explores how the representations and meanings of living with dementia are constructed by older adults.


Methods
Focus groups (N = 19) and in-depth interviews (N = 29) were conducted with older adults aged 65+ living in the Czech Republic, representing different levels of personal familiarity with care for an individual experiencing dementia.


Results
We identified 2 different discourses: (1) Tragedy discourse with two distinctive repertoires "dementia as a thief of personality" and "dementia as a thief of humanity." Within such discourse, dementia transcends mere medical terminology, serving as a symbolic representation of existential anxieties linked to aging and the perceived loss of control. (2) The discourse of Dementia as a specific way in which people approach the world was articulated mainly by caregivers, providing them with a coping mechanism and a means to reconstruct the agency of the person experiencing dementia. In older adults' representations, references to suffering among family members emerged as a primary association with dementia. Dementia was portrayed as "contagious" in its effect on the family members who were, in a sense, depicted as the primary sufferers of the disease.


Discussion
Dementia often serves as a symbolic tool for older adults to articulate concerns about advanced old age, extending beyond its clinical definition to convey deep-seated fears associated with aging. The experience of people surrounding those diagnosed with dementia and the permeability of the impacts of this disease between bodies represented crucial frameworks for conceptualizing dementia in the narratives of older adults.

Population aging will likely lead to increases is health care spending and the ability of governments to support entitlement programs such as Medicare and Medicaid. Dementia is a chronic condition that is especially pertinent because of its strong association with old age and because care for dementia is labor intensive and expensive. Indeed, prior research has found that if current dementia prevalence rates persist population aging will generate very large increases in health care spending for dementia. In this study we considered two alternative assumptions or scenarios about future prevalence. The first adjusts the prevalence projections using recent research that suggests dementia prevalence may be declining. The second uses growth hypertension, obesity and diabetes, and the relationship between dementia and these conditions to adjust future prevalence rates. We find under the first scenario that if the rates of decline in age-specific dementia rates persist, future costs will be much less than previous estimates, about 40% lower. Under the second scenario, the growth in those conditions makes only small differences in costs.

This book explores how dementia studies relates to dementia's growing public profile and corresponding research economy.

The book argues that a neuropsychiatric biopolitics of dementia positions dementia as a syndrome of cognitive decline, caused by discrete brain diseases, distinct from ageing, widely misunderstood by the public, that will one day be overcome through technoscience. This biopolitics generates dementia's public profile and is implicated in several problems, including the failure of drug discovery, the spread of stigma, the perpetuation of social inequalities and the lack of support that is available to people affected by dementia. Through a failure to critically engage with neuropsychiatric biopolitics, much dementia studies is complicit in these problems.

Drawing on insights from critical psychiatry and critical gerontology, this book explores these problems and the relations between them, revealing how they are facilitated by neuro-agnostic dementia studies work that lacks robust biopolitical critiques and sociopolitical alternatives. In response, the book makes the case for a more biopolitically engaged ""neurocritical"" dementia studies and shows how such a tradition might be realised through the promotion of a promissory sociopolitics of dementia.