Despite the increasing application of qualitative interviewing and analysis approaches, individuals with expressive language difficulties are still frequently excluded from such research. In this article, the authors seek to clarify the role for and importance of conducting qualitative interviews with respondents with impaired expressive language. They review current research with reference to studies conducted with individuals with intellectual disabilities or dementia, or those who have experienced stroke or traumatic brain injury, and identify deficits within existing research. They consider the challenges and difficulties that contribute to the limited inclusion of individuals with impaired expressive communication in qualitative interviews and discuss the way forward with suggestions of possible means of overcoming these obstacles. They argue that a willingness to adapt methods appropriately and to modify expectations is an important factor in ensuring that researchers hear the voice of respondents with expressive language deficits.

An increasing number of studies have begun to explore the subjective experience of individuals with dementia. However, despite the increased prevalence of dementia in individuals with Down syndrome, no such published research has been undertaken within this population. The aim of this study was to explore the perspectives and subjective experiences of six individuals with Down syndrome and dementia. Semi-structured interview accounts were analysed using Interpretative Phenomenological Analysis, in order to gain a level of understanding concerning the impact of dementia upon respondents’ lives and sense of self. Five main themes emerged: (1) Self-image, (2) The Relational Self, (3) Making Sense of Decline,(4) Coping Strategies and (5) Emotional Experience. Whilst the process of adjusting to dementia appeared comparable to the general population, the content of this was influenced by multiple levels of context specific to having a concomitant intellectual disability.

Despite the increased prevalence of dementia in individuals with Down syndrome, relatively little is known about its impact upon care provision. Carers may be familiar with the demands of assisting a person with Down syndrome, but generally have little knowledge about the course or impact of dementia. This dissonance may lead to stress, which can have a detrimental effect on the carer and the quality of care for the recipient. In this exploratory study, the authors examined the objective and subjective impact of dementia upon paraprofessional paid carers of individuals with Down syndrome working in residential settings. The study used the Caregiver Activities Scale-Intellectual Disabilities (CAS-ID), the Caregiver Difficulties Scale-Intellectual Disabilities (CDS-ID), and the Maslach Burnout Inventory (MBI). Responses given for these measures by paraprofessional carers of individuals with Down syndrome and dementia (n = 9) were compared with responses from those caring for recipients with Down syndrome and no additional cognitive decline (n = 11). No significant differences were found in the responses from these sets of carers on measures of objective (CAS-ID) or subjective burden (CDS-ID). However, the MBI revealed that carers of individuals with Down syndrome and dementia reported significantly increased levels of emotional exhaustion. Findings suggested that, while even when there is little difference in the level of caregiving tasks or the subjective difficulties of caregiving, the onset of dementia in individuals with Down syndrome resulted in increased emotional exhaustion for carers. Additional factors not considered within this study, such as challenging behavior, may also be pertinent to carer burden.

The authors describe and assess the experience of providing proactive screening for dementia in older adults with intellectual disabilities (ID) through a dedicated clinical psychology service within the National Health Service in England. Subjects were the first 18 participants who were referred to the clinical service or were identified as showing early signs of probable dementia in a proactive screening strategy. The screening process involved combining neuropsychological, behavioral, and health data with information from a clinical assessment of the presenting problem in a case series approach. The process of psychological assessment and formulation is illustrated together with an outline of the psychological interventions employed for early-, mid-, and late-stage dementia. An appraisal of the service strategy showed that a dedicated psychology service for dementia assessment can be effective when offering a defined and workable psychological response to the increasing presentation of dementia-associated behaviors among people with ID. Ancillary services included supporting carers in contributing to the assessment and intervention process so as to ensure appropriately responsive and respectful care management for the person with ID and dementia. The authors recommend that a multimodal stage model of intervention founded on direct performance and informant-based assessments (within a framework of differential diagnosis) be employed in supporting people with ID and dementia.

Results support the hypothesis that, consistent with literature for older adults with dementia in the general population, some behavioral excesses were functional in nature and not randomly occurring events. No relationship was found between appropriate engagement and staff contact. Evidence of the functional nature of target behavioral excesses indicates that behavioral interventions have potential for this client group.