Down Syndrome and Dementia: Guide to Identification, Screening, and Management

Moriconi, Christine; Schlamb, Cheryl; Harrison, Barbara

doi:10.1016/j.nurpra.2015.05.015

Cited by 10 publications

(16 citation statements)

References 24 publications

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“…Given the complexity of diagnosing dementia in people with severe/profound intellectual disabilities, it is questionable whether early dementia symptoms were observed or whether observed symptoms were attributed to the intellectual disability, ageing or another condition rather than dementia. For instance, cognitive changes and BPSD may also be caused by other causes than dementia, for example, sensory impairments and psychiatric disorders (Moriconi et al, 2015 ). In fact, studies reported high prevalence rates of visual or hearing deficits and psychiatric disorders including depression and schizophrenia in elderly with severe/profound intellectual disabilities (Evenhuis et al, 2001 ; Haveman & Maaskant, 1989 ; Kirkpatrick‐Sanchez et al, 1996 ; Van Splunder et al, 2006 ).…”

Section: Discussionmentioning

confidence: 99%

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

Wissing

Ulgiati

Hobbelen

et al. 2021

Research Intellect Disabil

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Background Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. Method A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing. Results Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found. Conclusions Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

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Section: Discussionmentioning

confidence: 99%

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

Wissing

Ulgiati

Hobbelen

et al. 2021

Research Intellect Disabil

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“…Accounts of the experiences of people with Down syndrome and dementia from their own perspective are extremely limited with research recommending inclusion in further studies to understand this perspective first hand (Hahn, Fox, & Janicki, 2015;Strydom et al, 2009). A wider range of research is available that focuses on the process of screening and diagnosis of dementia in people with intellectual disabilities (Carr & Collins, 2014;O'Caoimh, Clune, & Molloy, 2013;Moriconi, 2015;Nieuwenhuis-Mark, 2009) or on observations from the perspective of family members (Carling-Jenkins, Bigby, & Iacona, 2012;Janicki, Zendell, & DeHaven, 2010) and staff (McCarron, McCallion, Fahey-McCarthy, Connaire, & Dunn-Lane, 2010).…”

Section: Introductionmentioning

confidence: 99%

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

Watchman

2016

Policy Practice Intel Disabi

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Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognized and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome

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“…Aandoeningen die uitgesloten worden zijn onder andere [46]: -cerebrovasculair accident (beroerte); -delier; -depressie, deze kan ook in combinatie met dementie voorkomen; -epilepsie; -gehoorproblemen; -hypothyreoïdie; -medicijnbijwerkingen of -vergiftiging; -pijn; -slaapapneu; -visusproblemen; -vitamine-B12-deficiëntie.…”

Section: Diagnostiekunclassified

De ziekte van Alzheimer bij mensen met het syndroom van Down

Dekker

Deyn

2018

Neuropraxis

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Down Syndrome and Dementia: Guide to Identification, Screening, and Management

Cited by 10 publications

References 24 publications

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

De ziekte van Alzheimer bij mensen met het syndroom van Down

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