Dementia. A personal legacy beyond words

Abstract

This is the revised text of a lecture presented at the Joint Meeting of the Faculty of Old Age Psychiatry and the Special Interest Group in Spirituality and Psychiatry on 14 December 2005. The paper explores the interface of clinical, ethical, and spiritual dimensions in the promotion of communication in dementia. Themes are derived from personal anecdotal experience, principles of logotherapy, and ethical frameworks. It is argued that individuals with dementia remain at the centre of meaningful interaction through the period of illness and that it is incumbent upon formal carers to be aware of the lasting needs of the whole individual, and not to dismiss a spiritual approach. Finally, the paper introduces suggestions for the development of an integrated framework. Strategies and tools are being developed jointly by clinicians and spiritual advisors, and are aimed at preserving the dignity of the person with dementia, their right to be accepted at different stages of decline, in recognition of a meaning to their life and experience even beyond the point where normal language skills are irreparably lost.

Spirituality within Dementia Care: Perceptions of Health Professionals

“…One of the main challenges of assessing spiritual needs in people with dementia is that dementia can affect the ability to communicate (Dunn 2004, Bëphage 2008). The spiritual needs of patients with dementia should, however, be identified throughout all stages of dementia to ensure person-centred care (Goldsmith 2004, Wallace 2004, Lawrence 2007. Research therefore recommends that health professionals obtain as much information as possible, including speaking to a patient's carer, to identify what the patient had previously found meaningful (Bell andTroxel 2001, Dunn 2004).…”

“…The type of training required was not explored with the health professionals, but the need for training is also acknowledged within the literature (Kirsh et al 2001, Lawrence 2007. Swinton (2001) argued that training should begin during the education of health professionals in the universities to ensure that staff feel confident in addressing spiritual issues once qualified.…”

Joy, Happiness, and Humor in Dementia Care: A Qualitative Study

“…The word personhood is used to describe a person's fundamental traits (Dewing, 2008). When one's personhood is maintained, well-being is possible, and is often manifested through a positive or happy mood (Ellis & Astell, 2010;Kitwood, 2012;Lawrence, 2007).…”

Horizons of Meaning in Dementia: Retained and Shifting Narratives

“…This is a critical question from a spiritual care perspective, and many have written about the need to change how dementia is understood, seeing beyond the broken-down memory and failed words to encounter the person at the center and create the possibility for greater human connection and spiritual growth (e.g., Goldsmith, 2001;Lawrence, 2007;O'Connor, 1992;Stoddart, 1998). By taking this "personhood turn," it has been argued that those who provide spiritual care and guidance will be in a position to better support the needs of people with dementia, and in the process find greater meaning in their own practice (Everett, 1999).…”