Persistence of Self in Advanced Alzheimer's Disease

Tappen, Ruth M.; Williams, Christine L.; Fishman, Sarah; Touhy, Theris A.

doi:10.1111/j.1547-5069.1999.tb00445.x

Cited by 83 publications

(66 citation statements)

References 26 publications

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“…Indeed, Cohen-Mansfield, Parpura-Gill, and Golander (2006) found that when participants with dementia were presented with interventions tailored to their self-identity they were more involved than were control group participants with regular activities. Other studies have also found evidence for the persistence of self-identity in persons with dementia, although it may depend on interactions with others that allow this identity to be expressed (Golander & Raz, 1996; Li & Orleans, 2002; Small, Geldart, Gutman, & Clarke-Scott, 1998; Sabat & Harre, 1992; Tappen, Williams, Fishman, & Touhy, 1999). …”

Section: Introductionmentioning

confidence: 98%

The underlying meaning of stimuli: Impact on engagement of persons with dementia

Cohen‐Mansfield

Thein

Dakheel-Ali

et al. 2010

Psychiatry Research

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In a previous article, we discussed a theoretical framework asserting that a combination of stimulus attributes, person attributes and environmental attributes as well as interactions among these affect engagement with stimuli by persons with dementia (Cohen-Mansfield et al., in press). Based on this framework, we tested the impact on engagement of the personal meaning of stimuli, specifically examining work-like stimuli, stimuli based on the person's identity, and gender role based activities. We hypothesized that having such meanings will render stimuli more engaging than stimuli without these meanings. Participants were 193 residents of 7 Maryland nursing homes. All participants had a diagnosis of dementia. Results confirmed the hypotheses, demonstrating that the meaning of the stimulus impacts engagement shown by persons with dementia. Interventions that involve objects or tasks with meaning specific to the person with dementia will be more likely to engage that person. Future research could explore more identity roles as well as other mechanisms affecting engagement.

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Section: Introductionmentioning

confidence: 98%

The underlying meaning of stimuli: Impact on engagement of persons with dementia

Cohen‐Mansfield

Thein

Dakheel-Ali

et al. 2010

Psychiatry Research

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“…Each participant had at least two family members who were willing to participate in family conversations. This participation was important as an opportunity to maintain the sense of self of the participants and was dependent on the readiness of other people to facilitate connectedness (Van Dijkhuizen, Clare, & Pearce, 2006).…”

Section: Discussionmentioning

confidence: 99%

Expressions of Sense of Self Among Individuals With Alzheimer’s Disease

Skaalvik

Fjelltun

Normann

2016

Res Theory Nurs Pract

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Recent research has challenged the previously held view that people with Alzheimer's disease (AD) lack a sense of self, with several studies demonstrating that the sense of self is partially preserved, even in late stages of AD. The aim of this study was to examine how people with AD express their sense of self (Self 1-3) using the social constructionist theory of selfhood described by Harré (1998). Personal interviews were analyzed deductively. The participants narrated fragments of their life stories and expressed the fear of becoming a burden to family members and of nursing home placement. They expressed Self 1 (personal singularity or personal identity) without any problems, whereas their Self 2 (self-concept) attributes had undergone changes that they had learned to live with. The participants expressed surprisingly few problems with their narratives of Self 3 (social personae), that is, their accounts of interactions with other people. They reported being received positively when they were open about their diagnosis. These results provide further nuances that broaden our understanding of the process of preserving the sense of self, that is, simultaneously being the same and a different person.

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“…Thus ethics committees need to ensure that researchers are able to respond to the ethical dilemma of last known wishes versus here and now responses. For persons with dementia there are specific issues around the 'then' and the 'now' self [11,20,23] and with precedent autonomy [24]. This is something that may need to be more of a focus in ethics submissions.…”

Section: Informed and Proxy Consentmentioning

confidence: 99%

Process Consent and Research with Older Persons Living with Dementia

2008

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There is always a debate around consent in the context of research. Given the expansion of different approaches to qualitative research within dementia care, there is increasing consideration around consent in this context; particularly in research concerning the experiences of living with dementia and the care of persons with dementia. Specifically there is a drive to directly involve persons with dementia as they offer specific expertise concerning living with dementia. Additionally, capacity legislation strengthens the case for ensuring that persons with dementia are actively enabled to make their own decisions for as long as possible. This paper discusses an approach and method that can enable more persons who are living with dementia to participate in some types of research should they want to. Currently, most researchers rely on an extension of the traditional competency based informed consent method and/or proxy consent or assent. However, related to the development of so called person centred and participatory research in dementia, there are now a number of academic publications on approaches and practical methods of 'inclusionary' consent. This paper considers the broader contextual influences on inclusionary consent and outlines the key aspects of such approaches based on the development of one specific method for including persons with dementia in consent processes. The method is based on the premise, that for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. And even where capacity is said to no longer exist, persons with dementia are often able to make choices and make known their preferences about participating in research where the consent process is made specifically dementia sensitive. Ethics committees can facilitate researchers both by supporting them when they need to and 3 want to include persons with dementia in gerontological research and by challenging them to ensure that participation is genuine and starts with process consent. (308).

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Persistence of Self in Advanced Alzheimer's Disease

Cited by 83 publications

References 26 publications

The underlying meaning of stimuli: Impact on engagement of persons with dementia

The underlying meaning of stimuli: Impact on engagement of persons with dementia

Expressions of Sense of Self Among Individuals With Alzheimer’s Disease

Process Consent and Research with Older Persons Living with Dementia

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