Living alone with dementia: an interpretive phenomenological study with older women

Witt, Lorna de; Ploeg, Jenny; Black, Margaret E.

doi:10.1111/j.1365-2648.2010.05295.x

Cited by 41 publications

(58 citation statements)

References 37 publications

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“…It was interesting that 2 of the women had family members present at their request, supporting findings [11,21] in the literature regarding the importance of the family to many people with dementia.…”

Section: Discussionsupporting

confidence: 69%

“…Phenomenology focuses on increasing the understanding of the perspective of the lived experience of research participants and can serve to assist nurses to campaign for effective services [11] . The philosophical ideas of Heidegger and Husserl underpin the phenomenological approach to enquiry [12] which can be either descriptive or interpretive.…”

Section: Methodsmentioning

confidence: 99%

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The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

Holland

Kydd²

2013

Clinical Nursing Studies

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Aim: This qualitative study was undertaken to explore the lived experience of people newly diagnosed with dementia at one local post-diagnostic counselling service in Scotland. Methods:A interpretative phenomenological approach was adopted, data was collected by means of one-to one interviews with people newly diagnosed with dementia.The process of ethical approval was lengthy and conditions attached to recruitment. Of 9 possible participants, 3 women were recruited. Due to the small number, results were presented as individual narratives. Results:The 3 women all reported a long wait for the service following diagnosis and they were unclear as to the purpose of the service. All reported a reluctance to attend the counselling service.Two women had family support and found talking to the nurse counseellor very helpful.One woman had no such support and perceived the service to be a covert form of further assessment. Conclusions:Although positive steps have been taken towards improving the service, the uptake was poor. One of three participants perceived this service to be another form of assessment, which shows the heightened anxiety of people newly diagnosed with dementia. This is especially so for people with no supportive friends and/or family.Recommendations: From this small study it appears that post diagnostic counselling needs to be offered at time of diagnosis. It also appears that careful attention should be given to all forms of communication with people newly diagnosed with dementia, as they are at a vulnerable time in their lives and are frightened by service interventions.

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Section: Discussionsupporting

confidence: 69%

Section: Methodsmentioning

confidence: 99%

The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

Holland

Kydd²

2013

Clinical Nursing Studies

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“…These risks threaten autonomy. De Witt et al [35] found that people with dementia of mild and moderate degree had risk awareness and acknowledged their limited time for living at home. They wished to postpone the time for moving to an institution for as long as possible.…”

Section: Introductionmentioning

confidence: 99%

Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study

Smebye

Kirkevold

Engedal

2015

BMC Health Serv Res

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BackgroundCaring for people with dementia living in their own homes is a challenging care issue that raises ethical dilemmas of how to balance autonomy with their safety and well-being. The theoretical framework for this study consisted of the concepts of autonomy, beneficence, non-maleficence, paternalism and from the ethics of care. The aim of this study was to explore ethical dilemmas concerning autonomy that were identified when persons with dementia wished to live at home.MethodsThis Norwegian study had a qualitative, hermeneutic design and was based on nine cases. Each case consisted of of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 i.e. dementia of moderate degree (4) able to communicate verbally and (5) expressed a wish to live at home. The family carers and professional caregivers registered in the patients’ records were included in the study.An interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. By means of deductive analysis, autonomy-related ethical dilemmas were identified. The final interpretation was based on perspectives from the theoretical framework.ResultsThe analysis revealed three main ethical dilemmas: When the autonomy of the person with dementia conflicted with (1) the family carer’s and professional caregiver’s need to prevent harm (non-maleficence) (2) the beneficence of family carers and professional caregivers (3) the autonomy of the family carer.ConclusionsIn order to remain living in their own homes, people with dementia accepted their dependence on others in order to uphold their actual autonomy and live in accordance with their identified values. Paternalism could be justified in light of beneficence and non-maleficence and within an ethics of care.

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“…In maintaining their lives at home, our participants demonstrated resilience and ability, and like frailer people more generally, ‘balance[d] loss and capacity in their everyday lives’ [45]. Participants expressed the hope that they would remain as they were, linking with De Witt et al’s [46] concept of people with dementia ‘holding back time’. The view that ‘anyone can fall’ or suffer an accident, minimises the link to personal vulnerability [18].…”

Section: Discussionmentioning

confidence: 77%

Attitudes of older people with mild dementia and mild cognitive impairment and their relatives about falls risk and prevention: A qualitative study

et al. 2017

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ObjectiveTo explore the perceptions of older people with mild dementia and mild cognitive impairment, and their family carers, about falling, falls risk and the acceptability of falls prevention interventions.DesignQualitative study involving thematic analysis of semi-structured interviews with patient and relative dyads.Participants and setting20 patient/ relative dyads recruited from Memory Assessment Services and Falls Prevention Services in the United Kingdom.ResultsThe findings are presented under four key themes: attitudes to falls, attitudes to falls prevention interventions, barriers and facilitators, and the role of relatives. Participants’ attitudes to falls interventions were varied and sometimes conflicting. Some worried about falls, but many resisted identifying themselves as potential ‘fallers’, even despite having fallen, and rejected the idea of needing the help that structured interventions signify. Participants preferred to focus on coping in the present rather than anticipating, and preparing for, an uncertain future. Falls prevention interventions were acknowledged to be valuable in principle and if required in the future but often felt to be not necessary or appropriate at present.ConclusionsThis study of how persons with cognitive impairment, and their relatives, view falls risk and prevention mirror findings relating to the wider population of older persons without dementia. Participants did not generally see falls prevention interventions as currently relevant to themselves. The challenge for clinicians is how to present interventions with understanding and respect for the older person’s identity. They must identify and address goals that patients and relatives value. Simplistic or paternalistic approaches will likely fail. Individualised interventions which focus on maintaining independence and preserving quality of life are more likely to be acceptable by supporting a positive self-image for patients and their relatives.

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Living alone with dementia: an interpretive phenomenological study with older women

Abstract: Insight into the impact of past experience with others with dementia could inform nursing assessment and advocacy for health/social services that are sensitive to the potential emotional impact of mixing people with varied levels of dementia in the same programme.

Cited by 41 publications

References 37 publications

The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study

Attitudes of older people with mild dementia and mild cognitive impairment and their relatives about falls risk and prevention: A qualitative study

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