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

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.

Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers’ Positive Experiences

“…The findings suggest there are benefits in health and social care professionals providing relevant, timely and essential information tailored to current challenges, which aligns with research findings in rare dementia and other chronic rare conditions (Jaffe et al, 2009;McIntyre et al, 2019). This also links in with family carers' discussions that it is helpful to make small, frequent plans and suggests the importance of professionals providing essential, relevant information to support family carers make specific plans for the near future without overwhelming them.…”

Diagnosis and Management of Posterior Cortical Atrophy

“…a painting indicating a location or turn in-home), haptic (a grabrail indicating horizontal/vertical) and regarding the wider environment (e.g. a 'landmark' church or lamppost [27,80]). Crucially, any approaches to declutter environments should carefully consider risks of inadvertently removing such cues (Table 2B).…”

STEP-UP: Enabling Low-Cost IMU Sensors to Predict the Type of Dementia During Everyday Stair Climbing

“…It is rare that the symptoms as presented are immediately associated with a form of AD. More generally health and social care practitioners are often unaware of, and find it difficult to appreciate that forms of dementia can affect people's visual abilities (McIntyre et al, 2019).…”

“…Furthermore, we include a rare form of dementia-PCA-that is often missed by clinicians, demonstrating the benefits of this approach to dementia detection. The evidence-based discrimination of dementia, particularly its atypical presentations, not only has clinical applications, but also addresses a key desire of health and social-care professionals for better understanding of rarer presentations of dementia, for appropriate evidencebased assessment (McIntyre et al, 2019). Our apparatus uses low-cost, unobtrusive devices to discriminate dementia, which not only increases the applicability of our research, but also has not been achieved before.…”