Dementia in people with learning disability: a preliminary study into care staff knowledge and attributions

Abstract

Summary The present paper describes the findings of a pilot study funded by the NHS Executive Primary and Community Care Research Initiative Small Projects Scheme that investigated the knowledge and attributions of dementia held by care staff who work with older adults with learning disability. Meetings took place with 21 members of care staff identified as keyworkers to older adults with learning disability living in residential houses provided by Solihull Healthcare NHS Trust, Solihull, UK. The results suggest that staff have knowledge of ageing at a similar level to that of college students. Forgetfulness was the sign that they would most expect to see if they thought someone was suffering from dementia. When a change in behaviour was attributed to dementia, it was most likely to be viewed as ‘stable, uncontrollable’ with staff feeling pessimistic about being able to change the behaviour.

An overview of the LASER-AD study: A longitudinal epidemiological study of people with Alzheimer's disease

“…Many believed that the symptoms were under the persons' control and some that the person with AD would improve. As in other studies, shortterm memory loss was identified most frequently by carers as problematic (Whitehouse & Chamberlain, 2000). Many other symptoms were difficult for carers to deal with, for example, aggression, apathy, hallucinations, delusions and anxiety were often identified as troubling.…”

Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT)

“…2001; Banat et al . 2002), and view behaviour changes pessimistically as a part of disease progression that is unlikely to change (Whitehouse et al . 2000).…”

Impact of Dementia Upon Residential Care for Individuals With Down Syndrome

“…However, no data were available to indicate the level of care previously required by individuals before they developed dementia, thus, it may be that this had still increased markedly although it had not reached the levels described by other studies (e.g., McCarron et al., 2002b). Equally, if professional carers have little knowledge or understanding about the impact of dementia on their care recipient (Whitehouse et al., 2000), it could be argued that this will increase the emotional stress of the caring role overall. The experience of observing care recipients deteriorate with a dementing condition is also likely to be distressing.…”

“…These conclusions can be considered in the context of findings indicating that, while carers are familiar with the demands associated with assisting an individual with intellectual disabilities, they may have little knowledge or understanding about the impact of dementia (Whitehouse, Chamberlain, & Tunna, 2000). This situation can result in a disparity between the demands placed upon the caregiver and the resources they have to fulfill them, a situation that increases the likelihood of stress and eventual burnout (Hobsfall and Freedy 1993; Leiter 1993).…”