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

* This consensus statement was developed as an output from the 2016 International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland, 13–14 October 2016, and hosted by the University of Stirling and University of the West of Scotland, funded by the RS MacDonald Trust, the Scottish Government, and Alzheimer Scotland. Collaborating sponsors included the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States and the University of Illinois at Chicago. The Summit was composed of individuals and representatives of many international and national organizations with a stake in issues related to adults with intellectual disability affected by dementia. The contents of this statement were partially developed under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03-00. However, those contents do not necessarily represent the policy of the US Department of Health and Human Services, nor the endorsement by the US Federal Government. The opinions expressed represent those of the Summit participants and of the NTG.

ABSTRACT

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.

KEYWORDS:

• Consensus statement
• Dementia
• intellectual disability
• non-pharmacological interventions
• post-diagnostic support

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. The 33 Summit participants represented a number of disability, aging, and dementia national and international organizations, academic institutions, government officials, and family members, had diverse professional backgrounds, and came from some 15 countries in Europe and North and South America.

Additional information

Funding

This work was supported by the Scottish Government [grant number 90RT5020-03-00]; National Task Group on Intellectual Disabilities and Dementia Practices [grant number 90RT5020-03-00]; Alzheimer Scotland [grant number 90RT5020-03-00]; RS MacDonald Trust [grant number 90RT5020-03-00]; National Institute on Disability, Independent Living, and Rehabilitation Research [grant number 90RT5020-03-00].