Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

McCarron, Mary; McCallion, Philip; Coppus, Antonia; Fortea, Juan; Stemp, Sandy; Janicki, Matthew P.; Wtachman, K.

doi:10.1111/jir.12500

Cited by 23 publications

(11 citation statements)

References 28 publications

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“…Higher percentages of older adults with DS have been diagnosed with epilepsy compared to younger individuals with DS (Kerins, Petrovic, Bruder, & Gruman, 2008). One explanation for this phenomenon may be related to the well‐known association between epilepsy and AD, resulting in a higher prevalence of epilepsy in older individuals with DS (McCarron et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

The burden of chronic disease, multimorbidity, and polypharmacy in adults with Down syndrome

Carfì

Romano

Zaccaria

et al. 2020

American J of Med Genetics Pt A

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Data on clinical characteristics of adults with Down syndrome (DS) are limited and the clinical phenotype of these persons is poorly described. This study aimed to describe the occurrence of chronic diseases and pattern of medication use in a population of adults with DS. Participants were 421 community dwelling adults with DS, aged 18 years or older. Individuals were assessed through a standardized clinical protocol. Multimorbidity was defined as the occurrence of two or more chronic conditions and polypharmacy as the concomitant use of five or more medications. The mean age of study participants was 38.3 ± 12.8 years and 214 (51%) were women. Three hundred and seventy-four participants (88.8%) presented with multimorbidity. The most prevalent condition was visual impairment (72.9%), followed by thyroid disease (50.1%) and hearing impairment (26.8%). Chronic diseases were more prevalent among participants aged >40 years. The mean number of medications used was 2.09 and polypharmacy was observed in 10.5% of the study sample. Psychotropic medications were used by a mean of 0.7 individuals of the total sample. The high prevalence of multimorbidity and the common use of multiple medications contributes to a high level of clinical complexity, which appears to be similar to the degree of complexity of the older non-trisomic population. A comprehensive and holistic approach, commonly adopted in geriatric medicine, may provide the most appropriate care to persons with DS as they grow into adulthood.

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Section: Discussionmentioning

confidence: 99%

The burden of chronic disease, multimorbidity, and polypharmacy in adults with Down syndrome

Carfì

Romano

Zaccaria

et al. 2020

American J of Med Genetics Pt A

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“…Nurse in intellectual disability services spends more time than other healthcare professionals with the person, so are ideally placed to meet their needs. However, there is a need for intellectual disability service providers and palliative care service providers to work more closely and collaboratively and share each other's expertise (Bailey et al, ; McCarron et al, ) with a view to improving palliative care for people with intellectual disability and dementia.…”

Section: Discussionmentioning

confidence: 99%

Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Dillane¹,

Doody

2019

Journal of Clinical Nursing

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Aims and objectives To explore the current evidence of nurses caring for people with intellectual disability and dementia who experience pain. Background People with intellectual disability are ageing and are experiencing age‐related health conditions including dementia and conditions associated with pain, but at an earlier age. Addressing the needs of people with intellectual disability who develop dementia is a new challenge for nurses. Design An integrative literature review. Methods A systematic search of databases: CINAHL, MEDLINE, PsycINFO, Cochrane, EMBASE, Academic Search Complete, Scopus and Web of Science between 27 October 2017–7 November 2017. Hand searching and review of secondary references were also undertaken. Quality appraisal (Crowe Critical Appraisal Tool), thematic data analysis (Braun and Clarke, Qualitative Research in Psychology, 3, 2006, 77) and reporting using the PRISMA guidelines. Results Seven papers met the inclusion criteria, and three themes emerged from this review: nurses knowledge of ageing, dementia and pain; recognising pain in people with intellectual disability and dementia; and the role of nurse education. People with intellectual disability and dementia have difficulty communicating their pain experience compounded by pre‐existing communication difficulties. Conclusions A pain experience can present similar to behavioural and psychological symptoms of dementia, and diagnostic overshadowing often occurs whereby a pain need is misinterpreted as behavioural and psychological symptoms resulting in inappropriate treatment. Nurses need greater knowledge about the presence of pain and potential causes in people with intellectual disability and dementia, and education can be effective in addressing this knowledge deficit. Relevance to clinical practice Pain assessment tools for people with intellectual disability and dementia need to include behavioural elements, and baseline assessments are required to identify changes in presentation. Nurses need to recognise and respond to pain based on the evidence in order to deliver quality care.

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“…Due to the pre-existing decreased cognitive abilities in the population with ID, the early detection of dementia is challenging. However, accurate screening for diagnosis of dementia is crucial in order to provide appropriate interventions, care, and support as early as possible [ 10 , 11 , 12 , 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia

2018

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The life expectancy of people with intellectual disabilities (ID) has steadily increased, which has been accompanied by an increased risk of dementia. Staff and managers are key resources for safety diagnosis since they deliver information about people with ID behavior every day. The aim of the present study was to explore the identification process employed by staff and managers to detect signs of suspected dementia in people with an ID within intellectual disability services (ID-services). Twenty managers and 24 staff within an ID-service were interviewed and qualitative latent content analysis was applied. A model consisting of three themes on three levels of resources for the identification process of signs of suspected dementia emerged from the analysis. On the first level was the time and continuity in the care relationship, which is crucial for identifying and responding to changes in cognitive ability that indicate dementia. On the second level, the staff identify deficiencies in their own knowledge, seek support from colleagues and managers within their workplace and, on the third level, outside their workplace. Staff and managers expressed a need for early and continuous guidance and education from specialists in dementia and primary healthcare. This finding indicates an urgent need for intervention research and digital support for staff in dementia care.

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Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

Cited by 23 publications

References 28 publications

The burden of chronic disease, multimorbidity, and polypharmacy in adults with Down syndrome

The burden of chronic disease, multimorbidity, and polypharmacy in adults with Down syndrome

Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia

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