Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support

Karen Dodd-a, Karen Watchman-b, Matthew P. Janicki-c, Antonia Coppus-d,e, Claudia Gaertner-f, Juan Forteag-h, Flavia H. Santos-i,j, Seth M. Keller-k and Andre Strydom-l

a-Department of Psychology, Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK;
b-University of Stirling, Scotland;
c-University of Illinois at Chicago, USA;
d Radboudumc, Nijmegen, The Netherlands;
e Dichterbij Centre of the Intellectual Disabled, Gennep, The Netherlands;
f Theodor Fliedner Foundation, Muelheim an Der Ruhr, Germany;
g Hospital De La Santa Creu i Sant Pau–Biomedical Research Institute Sant Pau, Barcelona, Spain;
h Down Medical Center, Fundaci_o Catalana S_ındrome de Down, Barcelona, Spain; iUniversity of Minho, Braga, Portugal;
j UNESP – S~ao Paulo State University, Bauru, Brazil;
k Advocare Neurology South Jersey, Lumberton, NJ USA;
l University College London, UK

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.
Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.
Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person’s needs as dementia progresses.
Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Download Post-Summit Consensus Statement

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