Dataset Information

Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK.

ABSTRACT:

Objectives

To explore people's experiences of cognitive decline and receiving a diagnosis of dementia.

Design

61 semistructured interviews within 2?weeks of diagnosis. Audio recordings were transcribed, line-by-line coded using NVIVO V.11 and analysed using thematic analysis.

Setting

9 memory clinics (UK).

Participants

People with mild/moderate dementia.

Results

Most participants were diagnosed with Alzheimer's disease (56% female, mean age 81 years). 104 codes were grouped into 22 categories, feeding into 9 subthemes and 4 overarching themes: (1) dissonance, threat to identity and visibility of dementia: dementia was associated with a progressive loss of competence, culminating in being an idiot, crazy and losing the plot. The stigma of dementia led people to hide their diagnosis from others, even close family members. However, decreasing competence in everyday tasks was becoming increasingly visible in family and wider social networks. (2) Vulnerability and being in limbo: people were frustrated by the impact of dementia on their lives and felt vulnerable. Moreover, people were disturbed by not knowing how much and when they would deteriorate further. (3) Loss of control and agency: loneliness, increasing dependence and becoming a burden foreshadowed increasing diminished personal agency. (4) Maintaining agency and self-worth: some people focused on what they could do and the benefits of diagnosis. This involved accepting the diagnosis, adapting to changes by using coping strategies and accepting support from others. This helped people to maintain personal agency and self-worth.

Conclusion

While personal acceptance of dementia is challenging, people are additionally troubled about disclosing their diagnosis to others. Limited time in diagnostic appointments and limited postdiagnostic support leave few opportunities to address the emotional impact of a dementia diagnosis. There may be opportunities for healthcare professionals to discuss with patients the benefits of staying positive, implementing coping strategies and accepting support to live well with dementia.

SUBMITTER: Xanthopoulou P

PROVIDER: S-EPMC6688685 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK.

Xanthopoulou Penny P McCabe Rose R

BMJ open 20190801 8

<h4>Objectives</h4>To explore people's experiences of cognitive decline and receiving a diagnosis of dementia.<h4>Design</h4>61 semistructured interviews within 2 weeks of diagnosis. Audio recordings were transcribed, line-by-line coded using NVIVO V.11 and analysed using thematic analysis.<h4>Setting</h4>9 memory clinics (UK).<h4>Participants</h4>People with mild/moderate dementia.<h4>Results</h4>Most participants were diagnosed with Alzheimer's disease (56% female, mean age 81 years). 104 code ...[more]

PMID: 31375604

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Project description:ObjectivesPhysical frailty (or loss of physiologic reserve) is associated with cognitive impairment and dementia. Subjective cognitive decline (SCD) may represent early pathologic changes of dementia. The association between these disease markers is unclear.DesignCross-sectional analysis.SettingCommunity-based participants from the Vanderbilt Memory & Aging Project.ParticipantsA total of 306 older adults with normal cognition (NC; n = 174) or mild cognitive impairment (MCI; n = 132).MeasurementsFrailty was measured using standard methods, and a composite frailty score was calculated. SCD was quantified using the Everyday Cognition Scale (ECog; total score and four domain scores). Objective cognition was assessed with the Montreal Cognitive Assessment (MoCA). Proportional odds models, stratified by sex, related the frailty composite to MoCA and total ECog score adjusting for age, education, body mass index, cognitive diagnosis, depressed mood, Framingham Stroke Risk Profile, apolipoprotein E (APOE ε4) carrier status, and height (for gait speed models). Secondary models related individual frailty components to SCD domains and explored associations in NC only.ResultsIn women, frailty composite was related to MoCA (odds ratio [OR] = .56; P = .04), a finding attenuated in sensitivity analysis (OR = .59; P = .08). Frailty composite related to ECog total (OR = 2.27; P = .02), planning (OR = 2.63; P = .02), and organization scores (OR = 2.39; P = .03). Increasing gait speed related to lower ECog total (OR = .06; P = .003) and memory scores (OR = .03; P < .001). Grip strength related to lower ECog planning score (OR = .91; P = .04). In men, frailty was unrelated to objective and subjective cognition (P values >.07). Findings were consistent in the NC group.ConclusionFrailty component and composite scores are related to SCD before the presence of overt dementia. Results suggest that this association is present before overt cognitive impairment. Results suggest a possible sex difference in the clinical manifestation of frailty, with primary associations noted in women. Further studies should investigate mechanisms linking early changes among frailty, SCD, and cognition. J Am Geriatr Soc, 1-9, 2019. J Am Geriatr Soc 67:1803-1811, 2019.

Project description:IntroductionAfter being diagnosed with dementia, patients need a medical professional to empathetically address their fears and get initial questions answered. This scoping review therefore addresses how patients newly diagnosed with dementia are cared for in the general practitioner (GP) setting and how the communication between different healthcare professionals and the GP is handled.MethodsThe scoping review was conducted based on the PRISMA Extension for Scoping Reviews checklist. After developing a search algorithm, literature searches were performed in PubMed, Scopus, Web of Science, Cochrane Library, PsychInfo, GeroLit and Cinahl using defined search criteria, such as a focus on qualitative study designs. After the removal of duplicates, title/abstract and full text screening was carried out.ResultsFinal data extraction included 10 articles out of 12,633 records. Strategies regarding the post-acute care of newly diagnosed patients included providing clarity and comfort to the patients and giving support and information both pre- and post-diagnosis. Care efforts were focused on advanced care planning and deprescribing. Involving people with dementia and their caregivers in further care was seen as crucial to provide them with the support needed. GPs emphasised the importance of listening to concerns, as well as ensuring wishes are respected, and autonomy is maintained. All studies found communication between the GP setting and other healthcare professionals regarding post-acute care to be inadequate. Lack of information sharing, clinical notes and recommendations for the GP setting resulted in inefficient provision of support, as GPs feel limited in their ability to act.DiscussionSharing necessary information with the GP setting could promote patient-centred care for people living with dementia and facilitate appropriate and timely resource allocation and effective healthcare collaboration between the settings, for example, by defining clear care pathways and clarifying roles and expectations.

Project description:BACKGROUND:Subjective cognitive decline (SCD) and anxiety symptoms both predict neurocognitive disorders, but the two correlate strongly with each other. It is unclear whether they reflect two independent disease processes in the development of neurocognitive disorders and hence deserve separate attention. This cohort study examined whether SCD and anxiety symptoms demonstrate independent risks of mild cognitive disorder and dementia (MCI/dementia). METHODS:The study included 14,066 participants aged ??50?years and diagnosed with normal cognition at baseline, recruited from Alzheimer's Disease Centers across the USA. The participants were evaluated for SCD and anxiety symptoms at baseline and followed up almost annually for incident MCI/dementia (median follow-up 4.5?years; interquartile range 2.2-7.7?years). SCD and anxiety symptoms were included in Cox regression to investigate their independent risks of MCI/dementia. RESULTS:SCD and anxiety symptoms demonstrated independent risks of MCI/dementia, with HR 1.9 (95% CI 1.7-2.1) and 1.3 (95% CI 1.2-1.5), respectively. Co-occurring SCD and anxiety symptoms demonstrated the highest risk (HR 2.4, 95% CI 1.9-2.9)-participants in this group had a 25% probability of developing MCI/dementia by 3.1?years (95% 2.4-3.7), compared to 8.2?years among those without SCD or anxiety (95% CI 7.9-8.6). The results remained robust even in the sensitivity analyses that took into account symptom severity and consistency of symptoms in the first 2 annual visits. CONCLUSIONS:The findings suggest that clinicians should not dismiss one over the other when patients present with both SCD and anxiety and that both constructs may potentially be useful to identify high-risk populations for preventive interventions and trials. The findings also point to the need for further research to clarify on the neurobiological distinctions between SCD and anxiety symptoms, which may potentially enrich our understanding on the pathogenesis of neurocognitive disorders.

Project description:BackgroundIn cognitively normal individuals, subjective cognitive decline (SCD) has been reported to predict MCI and dementia (MCI/dementia). However, prior studies mostly captured SCD at single time-points without considering the longitudinal course of SCD. This study examined whether the trajectories of SCD provide any added information-beyond one-time assessments of SCD-on the risk of MCI/dementia.MethodsThis cohort study included 5661 participants from the Alzheimer's Disease Centers across the USA, who were ≥ 50 years and had normal cognition in the first-four annual visits (year 1 to year 4). The participants were evaluated for SCD in the first-four annual visits (year 1 to year 4), and followed-up almost annually (year 4 up to year 14) for incident MCI/dementia. SCD trajectories (as identified from latent-class-growth-curve-analysis) were included in Cox regression to estimate their risks of MCI/dementia, with analyses further stratified by age (< 75 years versus ≥ 75 years; based on median-split).ResultsCompared to those without SCD (in the first-four annual visits), Intermittent SCD (i.e., reported in 1-2 of the first-four annual visits) predicted a higher risk (HR 1.4) and Persistent SCD (i.e., reported in 3-4 of the first-four annual visits) predicted the highest risk (HR 2.2), with the results remaining significant even after adjusting for baseline SCD. Age-stratified analysis revealed that the risk associated with Intermittent SCD was only present in older individuals, while risk related to Persistent SCD was consistently present across the younger and older age groups. Age compounded the effects of the trajectories, whereby older individuals with Persistent SCD had > 75% probability of developing MCI/dementia by 10 years, in contrast to < 25% probability by 10 years in younger individuals with No SCD.ConclusionsThe findings demonstrate the utility of SCD trajectories-especially when used in combination with age strata-in identifying high-risk populations for preventive interventions and trials. They also suggest a potential modification in the current SCD criteria, with the inclusion of "persistent SCD over several years" as a feature of SCD plus.

Dataset Information

Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK.

Objectives

Design

Setting

Participants

Results

Conclusion

Publications

Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK.

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