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1.
Health Soc Care Community ; 27(4): 982-990, 2019 07.
Article in English | MEDLINE | ID: mdl-30737853

ABSTRACT

It has been highlighted that health and social care staff need a greater awareness of the needs and problems of those people with young onset dementia in the UK. Symptoms of Alzheimer's disease are relatively well known (memory loss, disorientation, language difficulties and behavioural problems). However, there is less awareness of dementia-related visual processing impairments in Alzheimer's disease, Dementia with Lewy Bodies or rarer dementia syndromes such as posterior cortical atrophy (PCA), leading to delayed assessment, diagnosis and management. This qualitative study explored health and social care practitioners' opinions of the needs of people with dementia-related visual processing impairment (such as individuals with PCA) and identify any training that these practitioners might need. Social workers, occupational therapists, care home staff, rehabilitation workers (visual impairment), optometrists and admiral nurses participated in focus groups or one-to-one semi-structured interviews. All participants were shown video clips of people with dementia-related visual impairment to facilitate discussion. Sixty-one participants took part in focus groups or interviews between November 2014 and December 2015. Participants' experiences and understanding of dementia were explored and thematic analysis of the data identified two major themes. Theme 1 explores participants' understanding of dementia-related visual impairments. Theme 2 recounts how participants address and support people with dementia-related visual impairment and their families. Participants discussed, reflected and critically analysed the video clips during data collection. Most considered new perspectives of their own clients' difficulties and those participants working with people with rarer dementias consolidated their experiences. However, some participants seemed hesitant to accept the existence of visual processing impairment arising due to dementia, rationalising novel information to existing understanding of memory loss or behavioural problems. This study highlights that health and social care practitioners want more training and better understanding of less well-recognised symptoms of dementia and rarer syndromes (including PCA) to ensure appropriate, evidence-based assessment and intervention.


Subject(s)
Caregivers/statistics & numerical data , Dementia/nursing , Social Support , Vision Disorders/nursing , Adaptation, Physiological , Alzheimer Disease/nursing , Dementia/complications , Female , Focus Groups , Humans , Male , Qualitative Research , Vision Disorders/complications
2.
BMJ Open ; 8(2): e018663, 2018 02 08.
Article in English | MEDLINE | ID: mdl-29439072

ABSTRACT

OBJECTIVES: To explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families. DESIGN: A 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. SETTING: Participants' homes. PARTICIPANTS: 20 individuals in the mild to moderate stages of PCA and 20 family carers. FINDINGS: Three 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. CONCLUSION: The 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.


Subject(s)
Alzheimer Disease/pathology , Alzheimer Disease/psychology , Cerebral Cortex/pathology , Vision Disorders/etiology , Adaptation, Psychological , Aged , Atrophy , Family , Female , Humans , Interviews as Topic , Male , Middle Aged , Neuropsychological Tests , Qualitative Research
3.
Neuroimage Clin ; 2: 143-50, 2012.
Article in English | MEDLINE | ID: mdl-24179767

ABSTRACT

The number bisection tasks, whereby participants estimate the midpoint of a given number interval, is frequently used to explore the idea that numbers are spatially represented within the brain across a 'mental number line'. Some neuropsychological research supports the argument that number bisection is a spatial task, recruiting parietal brain regions, whereas other data suggest that number bisection is dissociable from spatial processing and is instead dependent on working memory in the prefrontal cortices. This study explored the anatomical correlates of deficits in the number bisection task, using voxel-based morphometry in a sample of 25 neuropsychological patients with both left and right hemisphere damage. Interestingly, impairments in number bisection were strongly associated with grey matter lesions in the left hemisphere including both frontal and prefrontal cortices, extending to inferior parietal cortex. Similar prefrontal and frontal grey matter areas were found to be associated with increased leftward deviations (underestimations of the midpoint), whereas no suprathreshold clusters were observed for rightward deviations from the midpoint. Analysis of white matter integrity revealed that lesions in the tracts connecting the parietal and frontal cortices (i.e. the superior longitudinal fasciculus) were highly associated with leftward deviation impairments in number bisection. The data suggest that there is a common parieto-frontal number processing network underlying performances on number bisection, with larger numbers represented on the left side.

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