Diagnostisch hulpmiddel dementie bij mensen met (Z)EV(M)B voor gedragskundigen en psychodiagnostisch medewerkers

Mensen met (zeer) ernstige verstandelijke (en meervoudige) beperkingen ((Z)EV(M)B) worden steeds ouder. Aangezien leeftijd de belangrijkste risicofactor is voor dementie, komt dementie vaker voor bij deze doelgroep. Daarbij komt ook dat mensen met downsyndroom (trisomie 21) een hoog genetisch bepaald risico hebben op dementie door de ziekte van Alzheimer (Ballard et al., 2016). 20-30% van alle mensen met het downsyndroom heeft een ernstige of zeer ernstige verstandelijke beperking.Het signaleren en diagnosticeren van dementie bij mensen met (Z)EV(M)B is complex. Om dementie te diagnosticeren, moet er sprake zijn van cognitieve achteruitgang ten opzichte van een eerder, hoger niveau van functioneren die impact heeft op het dagelijks functioneren. Bij mensen met (Z)EV(M)B is het ingewikkeld om achteruitgang door dementie te onderscheiden van de al aanwezige (zeer) ernstige beperkingen in het functioneren.Bij mensen zonder verstandelijke beperking worden neuropsychologische testen gebruikt voor het vaststellen van dementiegerelateerde cognitieve achteruitgang. Deze testen zijn echter niet geschikt voor mensen met (Z)EV(M)B door hun beperkte begrip van de testinstructie en beperkingen in verbale vaardigheden. Ook eerder ontwikkelde dementie-screeningsinstrumenten voor mensen met verstandelijke beperkingen (VB) zijn niet als geheel bruikbaar voor mensen met (Z)EV(M)B (Wissing, Dijkstra, et al., 2022).Dit diagnostisch hulpmiddel is ontwikkeld om dementiegerelateerde veranderingen bij mensen met (Z)EV(M)B in kaart te brengen ter ondersteuning van het diagnostisch traject bij (een vermoeden van) dementie.Inclusief handleidin

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities:Practice-Based Observations of Symptoms

Introduction Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Results Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported. Conclusion Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities:Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities

Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population

Dementia in people with severe/profound intellectual (and multiple) disabilities : applicability of items in dementia screening instruments for people with intellectual disabilities

Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population