Health and social care practitioners' understanding of the problems of people with dementia-related visual processing impairment.

Anne Mcintyre,Keir X.X Yong,Emma Harding,Kenneth Gilhooly,Rachel Woodbridge,Sebastian Crutch,Mary Pat Sullivan,Mary Gilhooly

doi:10.1111/hsc.12715

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.

Highlights

The increasing numbers of people diagnosed with dementia as a consequence of the globally ageing population is well documented
More descriptive findings that arose in response to initial scoping questions, appertaining to participants’ experience and understanding of dementia are presented and the two major themes that came from the data
Few had personal experience of working with people with younger onset or rarer forms of dementia. Participants identified that their clients were mostly diagnosed with Alzheimer's disease, DLB and vascular dementia

Summary

Introduction

The increasing numbers of people diagnosed with dementia as a consequence of the globally ageing population is well documented. Dementia is an umbrella term for a variety of progres‐ sive neurodegenerative diseases, the majority of people living with dementia have Alzheimer's disease (AD), where a decline in memory is the predominant leading symptom. Symptoms such as problems in reasoning, communication, disorientation and behavioural prob‐ lems are recognised. Other symptoms such as demen‐ tia‐related visual impairment (arising from damage to the posterior cortical areas of the brain responsible for visual perception and ob‐ ject identification) in Alzheimer's disease are less recognised. The lack of understanding and knowledge of less common symptoms in dementia often leads to delayed or incorrect assessment, diagno‐ sis and management by health and social care professionals (Care Quality Commission & CQC, 2013) of PCA and of other uncom‐ mon dementias such as Dementia with Lewy Bodies or corticobasal degeneration

Objectives

Methods

Results

Discussion

Conclusion