Yes / Specialist services for dementia are seeing an increasing number of patients. We investigated whether interactional and linguistic features in the communication behaviour of patients with memory problems could help distinguish between those with problems secondary to neurological disorders (ND) and those with Functional Memory Disorder (FMD). In Part 1 of this study, a Diagnostic Scoring Aid (DSA) was developed encouraging linguists to provide quantitative ratings for 14 interactional features. An optimal cut-off differentiating ND and FMD was established by applying the DSA to 30 initial patient-doctor memory clinic encounters. In Part 2, the DSA was tested prospectively in ten additional cases analysed independently by two Conversation Analysts blinded to medical information. In part one, the median score of the DSA was +5 in ND and -5 in FMD (p<0.001). The optimal numeric DSA cut off (+1) identified patients with ND with a sensitivity of 86.7% and a specificity of 100%. In part two, DSA scores of rater one correctly predicted 10/10 and those of rater two 9/10 diagnoses. This study indicates that interactional and linguistic features can help distinguish between patients developing dementia and those with FMD and could aid the stratification of patients with memory problems. / NIHR Research for Patient Benefit (RfPB) Programme: PB-PG-0211-24079 – Using Conversation Analysis in the Differential Diagnosis of Memory Problems: a pilot study. 2013-2015

Recent research provides evidence for new conceptualizations of memory, including the brain's drive to predict and anticipate future events based on past experiences, a narrowing gap between perceptual and mnemonic functions, and the importance of sleep-dependent memory consolidation. These new perspectives, which highlight the interactive nature of the brain bases of memory, are rarely applied to the study of memory in neurodevelopmental disorders. In the present work, I adopted some of these theoretical perspectives to rethink the study of memory in typical development and in neurodevelopmental disorders such as Down syndrome (Trisomy 21). Given that several studies have reported atypical patterns of brain connectivity in individuals with Down syndrome, this dissertation aims to assess the integrity of memory processing in this population by examining different levels of cross-regional communication measured at the neuropsychological level. I first provide evidence of impaired rapid interactions between the brain areas that mediate high-level influences on figure-ground perception and relatively unimpaired integration of neural inputs across local areas of visual cortex (Spanò, Peterson, Nadel, Rhoads, & Edgin, 2015; see Appendix A). In the second study, I demonstrate spared use of anticipatory scene representation, thought to rely on top-down information from the hippocampus and likely to support our understanding of the properties of the visual world (Spanò, Intraub, & Edgin, submitted; see Appendix B). Finally, the third study reveals impaired sleep-dependent memory consolidation of arbitrary object-label associations, symptomatic of a weak dialogue between prefrontal cortex and hippocampus (Spanò, Gómez, Demara, Alt, Cowen, & Edgin, in preparation; see Appendix C). Based on these findings, treatments for Down syndrome, and other developmental disorders affecting functional connectivity, should be aimed at establishing balanced neural communication and cross-regional connectivity early on in development.

Yes / Objectives: In the UK dementia is under-diagnosed, there is limited access to specialist memory clinics, and many of the patients referred to such clinics are ultimately found to have functional (non-progressive) memory disorders (FMD), rather than a neurodegenerative disorder. Government initiatives on ‘timely diagnosis’ aim to improve the rate and quality of diagnosis for those with dementia. This study seeks to improve the screening and diagnostic process by analysing communication between clinicians and patients during initial specialist clinic visits. Establishing differential conversational profiles could help the timely differential diagnosis of memory complaints. Method: This study is based on video- and audio recordings of 25 initial consultations between neurologists and patients referred to a UK memory clinic. Conversation analysis was used to explore recurrent communicative practices associated with each diagnostic group. Results: Two discrete conversational profiles began to emerge, to help differentiate between patients with dementia and functional memory complaints, based on (1) whether the patient is able to answer questions about personal information; (2) whether they can display working memory in interaction; (3) whether they are able to respond to compound questions; (4) the time taken to respond to questions; and (5) the level of detail they offer when providing an account of their memory failure experiences. Conclusion: The distinctive conversational profiles observed in patients with functional memory complaints on the one hand and neurodegenerative memory conditions on the other suggest that conversational profiling can support the differential diagnosis of functional and neurodegenerative memory disorders.

Abstract The prevalence of memory disorders is increasing worldwide due to an aging population. The condition affects not only those with the disorder, but also their families and the wider social network. Establishing services that meet the needs of patients and their families is a topical issue and requires knowledge produced from service user viewpoints. However there remains limited knowledge of how families manage their lives when there is a memory disorder. This study produces a substantive theory that describes the processes of managing life after disclosure of a progressive memory disorder from the viewpoint of individuals with that diagnosis and their family caregivers. A qualitative longitudinal research design informed by grounded theory methodology was undertaken. Research data were gathered for 2006–2009 using in-depth interviews (n=40) from those with the memory disorder (n=8) and their family caregivers (n=8). The data were analyzed using a constant comparative analysis. A core category ‘Accepting memory disorder as part of family life’ with related categories and subcategories was formulated from the gathered data. Family illness trajectory begins when patients or close relatives recognize the symptoms. Diagnosis of memory disorder is a turning point in that trajectory. It changes the course of lives for both individuals and their whole family and leads families to seek a new equilibrium. Altering life challenges people with the diagnosis and their family caregivers to restructure their roles and identities. Adjusting to altering self and adapting to the new role of caregiver are intertwined processes. Families strive to manage these changes by acknowledging available qualities and resources, seeking meaningful social support and living for today. Managing life with a memory disorder produces mutual processes in families that contain both positive and negative factors. Accepting memory disorder as part of family life represents a hope-fostering adjustment. The findings confirm and supplement the knowledge base in nursing science of family experiences and the means families use for managing life after diagnosis of a progressive memory disorder. These findings can be well utilized by professionals working with patients and their families who are living with newly diagnosed memory disorder while also advancing nursing education. / Tiivistelmä Väestön ikääntymisen vuoksi muistisairauksien esiintyvyys on kasvussa koko maailmassa. Etenevä muistisairaus vaikuttaa sekä sairastuneiden että perheiden elämään, ja heidän tarpeisiinsa vastaavien palvelujen kehittäminen on ajankohtaista. Perheiden selviytymistä koskevaa tutkimustietoa palvelujen kehittämiseksi on kuitenkin rajallisesti. Tutkimuksen tarkoituksena oli kehittää aineistolähtöinen teoria, joka kuvaa muistisairaiden ja omaishoitajien elämänhallinnan prosesseja muistisairausdiagnoosin varmistumisen jälkeen. Tutkimus oli laadullinen pitkittäistutkimus, jossa aineisto kerättiin vuosina 2006–2009 syvähaastattelemalla (n=40) sekä sairastuneita (n=8) että heidän omaisiaan (n=8). Aineisto analysoitiin grounded theory -metodologian jatkuvan vertailun analyysimenetelmällä. Tutkimuksessa tuotetun aineistolähtöisen teorian ydinkategoriaksi muodostui ’Muistisairauden hyväksyminen osaksi perheen elämää’. Ydinkategoriaan olivat yhteydessä pää- ja alakategoriat, jotka kuvasivat vastavuoroisia elämänhallinnan prosesseja perheessä. Perheiden kehityskulku muistisairauden kanssa käynnistyi ennen diagnoosin varmistumista, kun sairastunut itse tai hänen läheisensä kiinnittivät huomiota oireisiin. Muistisairausdiagnoosi oli käännekohta, joka muutti perheiden elämänkulun suuntaa ja johti etsimään uutta tasapainoa elämässä. Muuttuva elämäntilanne haastoi sairastuneet ja heidän omaisensa rakentamaan uudelleen käsitystä itsestään ja sosiaalisista rooleistaan. Sairastuneiden kokemuksena tämä tarkoitti sopeutumista muuttuvaan itseen ja omaisten kokemuksena mukautumista uuteen omaishoitajan rooliin. Nämä kehityshaasteet kytkeytyivät toisiinsa. Perheet pyrkivät selviytymään muuttuvassa elämäntilanteessaan huomioimalla käytettävissä olevat voimavarat, hyödyntämällä merkityksellistä sosiaalista tukea ja tavoittelemalla elämää tässä ja nyt. Muistisairaiden ja omaishoitajien vastavuoroiset elämänhallinnan prosessit sisälsivät sekä myönteisiä että kielteisiä tekijöitä. Muistisairauden hyväksyminen osaksi perheen elämää merkitsi toivoa vahvistavaa sopeutumista. Tutkimustulokset täydentävät hoitotieteen tietoperustaa perheiden kokemuksista ja elämänhallinnan keinoista muistisairausdiagnoosin varmistumisen jälkeen. Tutkimustuloksia voidaan hyödyntää sekä käytännön hoitotyössä tuettaessa muistisairaita ja heidän perheitään diagnoosin jälkeen että hoitotyön koulutuksessa.

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