From ‘needing to know’ to ‘needing not to know more’: an interpretative phenomenological analysis of couples' experiences with early‐onset Alzheimer's disease

Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie‐Jeanne; Antoine, Pascal

doi:10.1111/scs.12290

Cited by 28 publications

(68 citation statements)

References 36 publications

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“…This is a form of social structure whereby the needs of the family as a whole are more important than individual members, and emphasis is on keeping family cohesion (Cook & Kwon, ). In addition, in contrast to other studies, where female spousal caregivers have shown a preference to resignation from caregiving role (Lockeridge & Simpson, ; Wawrziczny, Pasquier, Ducharme, Kergoat, & Antoine, ), in this study, participants preferred to care for mentally ill husband even scarifying themselves to manage critical care conditions. They overlook their own essential requirements and prioritise their mentally ill relatives’ needs.…”

Section: Discussioncontrasting

confidence: 88%

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Rahmani

Ebrahimi

Seyedfatemi

et al. 2018

Journal of Clinical Nursing

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Section: Discussioncontrasting

confidence: 88%

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Rahmani

Ebrahimi

Seyedfatemi

et al. 2018

Journal of Clinical Nursing

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“…Following diagnosis, there was a widely reported lack of accessible information. This has previously also been reported by those adjusting to a diagnosis of tAD 46 47 and young-onset dementia specifically, 48 and the current findings therefore add to knowledge about the varied types of dementia for which advice and information are needed. The rarity of PCA had the potential to be an ongoing source of stress over time in that those living with the diagnosis repeatedly found themselves better informed on the condition than healthcare professionals they came into contact with, often having to re-explain the syndrome and their symptoms on multiple occasions.…”

Section: Methodssupporting

confidence: 83%

‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy

et al. 2018

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ObjectivesTo explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families.DesignA qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed.SettingParticipants’ homes.Participants20 individuals in the mild to moderate stages of PCA and 20 family carers.FindingsThree major themes were identified: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities. Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. The experience was framed by background and contextual factors and understood within an ever-changing temporal context.ConclusionThe stress process in PCA is characterised by uncertainty and unpredictability from diagnosis through to ongoing management. The provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being. Future research exploring (1) stress and coping in the later stages of PCA and (2) the nature and impact of visual impairment(s) in typical Alzheimer’s disease would be worthwhile.

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“…Finally, it is perhaps worrying that although two of the articles found in the literature search were published more than 10 years ago (Beattie, Daker-White, Gilliard, & Means, 2004;Harris, 2004) the themes identified remain consistent with more recent reports (Griffin et al, 2015;Wawrziczny et al, 2016), emphasising the recurrence and persisting nature of the issues raised. Furthermore, the research described was conducted in a variety of European countries and North America indicating that the issues highlighted are universal and could benefit from international consensus.…”

Section: Discussionsupporting

confidence: 64%

“…The reaction to the diagnosis: reassuring, destabilising and shock Wawrziczny, Pasquier, Ducharme, Kergoat, & Antoine (2016) Wawrziczny et al, 2016). This quote also highlights how knowing the cause of the symptoms can provide a sense of control in managing feelings.…”

Section: Language Usedmentioning

confidence: 99%

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

O’Malley

Carter

Stamou

et al. 2019

Aging & Mental Health

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Receiving a diagnosis of young onset dementia: a scoping review of lived experiences Objectives: The personal experience of receiving a diagnosis of young onset dementia (YOD) is often overlooked in a complex assessment process which can require substantial investigation. To understand the lived experiences of younger people undergoing assessment and receiving a diagnosis of dementia, we undertook a thematic synthesis of qualitative studies published until November 2018. The aim of this review was to inform a Delphi study with younger people diagnosed with dementia to learn how diagnostic process could be improved, and to identify the strengths and weaknesses of current approaches and help educate professionals concerning key issues. Method: Systematic searches of appropriate bibliographic databases were conducted to collate literature involving self-reported experiences of diagnosis of YOD. Eight out of 47 initially-identified papers satisfied our search term criteria, and all papers were quality assessed using Walsh & Browne's criteria for methodological appraisal. Results: The review of the literature emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help by the younger person, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the language used by the clinician, and the younger people diagnosed with dementia and their families' reactions to the diagnosis vary from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. Conclusion: Understanding the perspective of a younger person undergoing assessment for dementia is important both in terms of promoting future engagement with services and in designing and evaluating interventions to improve the diagnostic process. This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults.

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From ‘needing to know’ to ‘needing not to know more’: an interpretative phenomenological analysis of couples' experiences with early‐onset Alzheimer's disease

Cited by 28 publications

References 36 publications

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

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