Living with a diagnosis of behavioural-variant frontotemporal dementia: The person’s experience

Griffin, Julie; Oyebode, Jan R.; Allen, Joanne

doi:10.1177/1471301214568164

Cited by 27 publications

(41 citation statements)

References 44 publications

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“…The pre-diagnostic and diagnostic periods are salient areas of patient experience and narrative. Studies indicate that with hindsight patients can recognise and acknowledge changes in their cognition or behaviour during the pre-diagnostic phase, but suggest that at the time they may feel uncertain regarding changes (Griffin, Oyebode, & Allen, 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015). It was frequently those in closest proximity to patients, such as family members and co-workers, who pointed out patient changes (Griffin et al., 2015; Harris, 2004; Johannessen & Mӧller, 2011).…”

Section: Resultsmentioning

confidence: 99%

“…Studies indicate that with hindsight patients can recognise and acknowledge changes in their cognition or behaviour during the pre-diagnostic phase, but suggest that at the time they may feel uncertain regarding changes (Griffin, Oyebode, & Allen, 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015). It was frequently those in closest proximity to patients, such as family members and co-workers, who pointed out patient changes (Griffin et al., 2015; Harris, 2004; Johannessen & Mӧller, 2011). Amongst the changes reported by patients included memory problems, difficulties at work, and being slower than usual (Griffin et al., 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015).…”

Section: Resultsmentioning

confidence: 99%

“…It was frequently those in closest proximity to patients, such as family members and co-workers, who pointed out patient changes (Griffin et al., 2015; Harris, 2004; Johannessen & Mӧller, 2011). Amongst the changes reported by patients included memory problems, difficulties at work, and being slower than usual (Griffin et al., 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015). There is little indication that patients attribute their changes to a particular medical cause during the pre-diagnostic period, and certainly not to dementia, and there is some sense of patient indifference towards seeking a medical opinion (Griffin et al., 2015; Johannessen & Mӧller, 2011).…”

Section: Resultsmentioning

confidence: 99%

“…Amongst the changes reported by patients included memory problems, difficulties at work, and being slower than usual (Griffin et al., 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015). There is little indication that patients attribute their changes to a particular medical cause during the pre-diagnostic period, and certainly not to dementia, and there is some sense of patient indifference towards seeking a medical opinion (Griffin et al., 2015; Johannessen & Mӧller, 2011). In many cases, it seems to be family members, typically spouses, who play a significant role in instigating help from healthcare professionals (Griffin et al., 2015; Johannessen & Mӧller, 2011; Wawrziczny et al., 2015).…”

Section: Resultsmentioning

confidence: 99%

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Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers

Spreadbury

Kipps

2017

Dementia

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Background The qualitative research on young onset dementia is providing insights about the 'lived experience' of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers. Method The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles. Results In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the post-diagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver-patient relationship. Both can experience grief, isolation, and stigma. Discussion The diagnosis of dementia elicits significant changes in thinking, emotion, and lifestyle that patients and caregivers are unlikely to be ready for. Both receive insufficient support or guidance in particular of a psychological nature on how to cope and adjust.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers

Spreadbury

Kipps

2017

Dementia

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“…A second generation of literature is beginning to delineate the particular experiences of those with less common forms of dementias such as young-onset dementias 20 21 and those with atypical symptom profiles like behavioural variant frontotemporal dementia. 22 Developing a greater understanding of the day-to-day impact of dementia in relation to visual problems will be a timely addition to this, not least because those with tAD may also go on to have cortical visual impairment, likely later on in their diagnosis and as such at a time when they may not be so able to articulate their experiences of the symptoms. 23 …”

Section: Introductionmentioning

confidence: 99%

‘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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Loss of “insight” into behavioral changes in ALS: Differences across cognitive profiles

et al. 2021

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Objective: Behavioral impairment occurs in amyotrophic lateral sclerosis (ALS) and ALS-fronto-temporal dementia (ALS-FTD). It has been proposed that ALS patients without FTD retain an awareness of their behavioral impairment while ALS-FTD patients lose this awareness (referred to as retention vs. loss of "insight"). Loss of insight has not yet been studied across the entire ALS-FTD spectrum; our study addresses this gap by including patients with all the ALS cognitive-behavioral profiles.Methods: Eighty-three ALS patients (and their informants) took part in this bicentric study involving two German recruitment sites. Patients and informants completed the Frontal Systems Behavior Scale covering the domains of apathy, disinhibition, and executive dysfunctioning. Patients were classified into five groups according to the Strong and Rascovsky criteria: cognitively unimpaired (ALSni), cognitively impaired without dementia (ALSci), behaviorally impaired (ALSbi), a combination of behaviorally and cognitively impaired (ALScbi), and ALS-FTD. We applied Bayesian two-way ANOVA to test whether there were subgroup differences regarding insight into their behavioral decline.Results: All patient subgroups experienced behavioral decline (Bayes factor > 3). Only ALS-FTD patients lost insight into disinhibition and executive dysfunctioning. ALSbi patients exhibited worse insight than ALSni and ALSci patients (Bayes factor > 10). Evidence regarding the ALScbi patients was inconclusive. Higher IQ was associated with worse insight (Bayes factor > 3). Conclusions:Our findings provide solid support for the notion that ALS patients without dementia experience behavioral decline regardless of their cognitive-behavioral profile and retain different levels of insight into this decline. The inverse association of premorbid verbal intelligence with insight was unexpected, leaving room for further investigation.

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Living with a diagnosis of behavioural-variant frontotemporal dementia: The person’s experience

Cited by 27 publications

References 44 publications

Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers

Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers

‘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

Loss of “insight” into behavioral changes in ALS: Differences across cognitive profiles

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