The subjective experience of personhood in dementia care settings

Nowell, Zoe C; Thornton, Amanda; Simpson, Jane

doi:10.1177/1471301211430648

Cited by 27 publications

(46 citation statements)

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“… Data were analysed using content analysis. Nowell ZC, Thornton A, Simpson J [ 67 ], 2013 To understand personhood by exploring the subjective experiences of those with dementia in UK N=7 people diagnosed with dementia living in dementia care units. UK Individual semi-structured individual interviews were performed.…”

Section: Methodsmentioning

confidence: 99%

“…“A home is a place where you can walk around and do what you like. Where you don’t have to be afraid of what others think about what you are doing.” [ 66 ] - Living among strangers in the nursing home, increases the feeling of homesickness [ 66 ] - Homesickness for the home [ 66 ] - Want belonging [ 66 ] Mirror’s the way we are [ 63 ] - Same setting –lived space [ 63 ] - Helping to maintain their existing identity [ 102 ] - Disillusioned by the care environment, the noise and busyness and the lack of opportunity to engage in activities [ 43 ] - Forgetting places [ 103 ] - They have reflective thinking about the ward environment, and rules/ restrictions [ 67 ] - Familiarly surroundings supported and encouraged occupations, was the key to activity [ 104 ] - She will still be able to sense, feel and appreciate the place where she is [ 51 ] Maintain a sense of self, remain the same by doing and going the places that he has been used to [ 106 ] You get to start a new life (in the care home) [ 38 ] -I miss my old home. We are miles apart (the husband and wife living in the care unit, but different rooms) [ 38 ] -I want to go back to my own home, to be with people I know [ 38 ] -Settle in the new homes (long term care homes) seemed to be a result of pre-visit before moving, continued contact with family, being accepted by others, company, care and assistance from staff [ 38 ] -I can go to my room when I like, …..I prefer to stay in the living room with the others [ 40 ] -I prepare to have my private living and my privacy.…”

Section: Methodsmentioning

confidence: 99%

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The experience of lived space in persons with dementia: a systematic meta-synthesis

et al. 2018

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BackgroundIdentifying how persons with dementia experience lived space is important for enabling supportive living environments and creating communities that compensate for the fading capabilities of these persons. Several single studies have explored this topic; however, few studies have attempted to explicitly review and synthesize this research literature. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding persons with dementia’s experience of space.MethodsA systematic, computerized search of AgeLine, CINAHL Complete, Embase, Medline and PsycINFO was conducted using a search strategy that combined MeSH terms and text words for different types of dementia with different descriptions of experience. Studies with 1) a sample of persons with dementia, 2) qualitative interviews as a research method and 3) a description of experiences of lived space were included. The search resulted in 1386 articles, of which 136 were identified as eligible and were read and assessed using the CASP criteria. The analysis was inspired by qualitative content analyses.ResultsThis interpretative qualitative meta-synthesis included 45 articles encompassing interviews with 672 persons with dementia. The analysis showed that living in one’s own home and living in long-term care established different settings and posed diverse challenges for the experience of lived space in persons with dementia. The material revealed four main categories that described the experience of lived space: (1) belonging; (2) meaningfulness; (3) safety and security; and (4) autonomy. It showed how persons with dementia experienced a reduction in their lived space due to the progression of dementia. A comprehensive understanding of the categories led to the latent theme: “Living with dementia is like living in a space where the walls keep closing in”.ConclusionThis meta-synthesis reveals a process whereby lived space gradually becomes smaller for persons with dementia. This underscores the importance of being aware of the experiences of persons with dementia and the spatial dimensions of their life-world. To sustain person-centred care and support the preservation of continuity and identity, one must acknowledge not only the physical and social environment but also space as an existential experience for persons with dementia.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The experience of lived space in persons with dementia: a systematic meta-synthesis

et al. 2018

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“…Moyle et al (2011) mention a lack of opportunity for 'decision-making' and 'feeling free'. Nowell et al (2013) highlight the negative impact of a 'global and pervasive' lack of choice (p. 399).…”

Section: Discussionmentioning

confidence: 99%

“…Dementia Care Mapping), without ever being empirically tested. Nowell, Thornton and Simpson (2013) explored the subjective experience of personhood in dementia care settings and identified the following themes: First, working out the system and adapting in order to survive it, second, using past and future roles and experiences to manage the present and third, being both an individual and a member of the group. Their interview study does not refer explicit to Kitwood's model of needs but provides important reference points.…”

Section: Introductionmentioning

confidence: 99%

Dementia and well-being: A conceptual framework based on Tom Kitwood’s model of needs

Kaufmann¹,

Engel

2014

Dementia

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The topic of well-being is becoming increasingly significant as a key outcome measure in dementia care. Previous work on personhood of individuals with dementia suggests that their subjective well-being can be described in terms of comfort, inclusion, identity, occupation and attachment. The study aimed to examine Tom Kitwood's model of psychological needs and well-being in dementia based on the self-report of individuals with moderate or severe dementia and to differentiate and elaborate this model in the light of the empirical qualitative data. Nineteen inhabitants of a special long-term care unit were interviewed using a semi-structured interview. Data were analysed using content analysis. Thirty components within Kitwood's model have been identified. A conceptual framework of subjective well-being in dementia was developed based on a theoretical background. The study was able to find indications that Kitwood's model has empirical relevance. Nevertheless, it requires to be extended by the domain agency. Furthermore, the study suggests that individuals with dementia are important informants of their subjective well-being.

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“…The recognition and acceptance of a persistent sense of self among people living with dementia has implications for the approaches of clinicians and other care partners, including those in long-term care communities, in that it can promote patientor person-centered care (PCC) [19,20], which is an important goal of modern medicine. In 2001, a report issued by the Institute of Medicine (now the National Academy of Medicine) included PCC as one of the six essential aims of modern health care [21].…”

Section: A Positive Approach To Inclusionmentioning

confidence: 99%

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

Reed

Carson

Gibb

2017

AMA Journal of Ethics

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Supporting people living with dementia in maintaining selfhood, relationships, and well-being requires seeing beyond the common negative focus on disability. Furthermore, prioritizing the person rather than the disease requires rejecting the tragedy discourse, which is the negative lens through which dementia is typically considered. In this paper, we highlight qualitative research on dementia involving people living with dementia as active participants. Recognizing that many people living with dementia remain capable of making decisions that affect their lives, we highlight a research-based approach to support known as "authentic partnerships" that includes people living with dementia as equal partners. We conclude by proposing eight beliefs to mobilize positive change in transcending the tragedy discourse of dementia, thereby opening a space for selfhood, relationships, and well-being. IntroductionWith an estimated 5.4 million people living with Alzheimer's disease in the United States [1] and almost 50 million worldwide [2], an essential question is the extent to which our society, communities, and health care professionals support people in living well with dementia, rather than focusing exclusively on managing or treating a disease. It is the authors' contention that the dominant view of dementia is grounded in a "tragedy discourse," which emphasizes the loss of both ability and identity [3,4], and that this view directly harms people living with dementia above and beyond the effects of the pathology of any disease. In this paper, we first show that the negative impact of the tragedy discourse can be readily understood by listening to people living with dementia talk about their experiences and by considering how they are commonly characterized in the public sphere. We then show that care partners can promote well-being through including and engaging persons living with dementia in decision making. However, we contend that the dominant frame for understanding dementia, the tragedy discourse, promotes stigma and is used as an inappropriate justification for denying persons with dementia opportunities for autonomy and engagement, thus threatening their wellbeing.

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The subjective experience of personhood in dementia care settings

Cited by 27 publications

References 46 publications

The experience of lived space in persons with dementia: a systematic meta-synthesis

The experience of lived space in persons with dementia: a systematic meta-synthesis

Dementia and well-being: A conceptual framework based on Tom Kitwood’s model of needs

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

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