Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs.

Alain D Dekker,Marieke R Groen,Johannes S M Hobbelen,Esther S Grootendorst,Aurora M Ulgiati,Gaby Van Gool,Ina A Van Der Wal,Peter P De Deyn,Maureen B G Wissing,Aly Waninge,Bas Bijl

doi:10.1111/jar.12912

Abstract

BackgroundDifferentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.MethodsFour explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.ResultsThematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).ConclusionsTimely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

Highlights

In the last decades, life expectancy of people with intellectual disabilities has increased even faster than in the general population (Bittles & Glasson, 2004; Coppus, 2013; Evans et al, 2013)
Diagnosing dementia in people with intellectual disabilities is complicated due to the level of intellectual disability, patterns of characteristic/typical behaviour related to the intellectual disability and the presence of comorbidities, which may be associated with dementialike symptoms (Dekker et al, 2015; Jamieson-Craig et al, 2010; Sabbagh & Edgin, 2016; Zigman et al, 2008)
In this explorative focus group study on dementia in people with severe/profound intellectual disabilities, we examined the (a) relevance of the diagnosis, (b) symptoms and (c) training/information needs

Summary

Introduction

Life expectancy of people with intellectual disabilities has increased even faster than in the general population (Bittles & Glasson, 2004; Coppus, 2013; Evans et al, 2013). The more severe and complex the present disabilities, the more difficult the assessment of decreasing skills due to dementia. This is difficult in people with severe or profound intellectual (and multiple) disabilities (Evans et al, 2013; McKenzie et al, 2018). Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Methods: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia. Conclusions: Timely identifying/diagnosing dementia allows for a timely response to changing needs This requires a better understanding of symptoms

Methods

Results

Discussion

Conclusion