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

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.

Appetite, Metabolism and Hormonal Regulation in Normal Ageing and Dementia

“…The perspective pharmacological interventions in the sub-group of MCI cases whose deterioration is anticipated [ 2 , 181 ] could be beneficial in alleviating appetite/eating disturbances and providing tailored solutions, due to the divergent actions of ACHEIs [ 164 , 165 , 166 , 167 ]. The NMDA antagonist memantine has been also reported capable to mitigate overall NPI prevalence in combined schemes with donepezil, and especially up to 4.8 points in replacement schemes [ 182 ], with significant improvement of the appetite/eating cluster, possibly due to the normalization of binge-eating [ 183 ].…”

“…The NMDA antagonist memantine has been also reported capable to mitigate overall NPI prevalence in combined schemes with donepezil, and especially up to 4.8 points in replacement schemes [ 182 ], with significant improvement of the appetite/eating cluster, possibly due to the normalization of binge-eating [ 183 ]. The parallel actions against the BPSD array are fortunate [ 184 ], as only timely use of anti-dementia medication is suggested at the moment [ 2 ]. However, with the exception of rivastigmine, little evidence exists about the pathways implicated in appetite regulation during these interventions.…”

“…Non-cognitive perturbations are frequent in the ageing population [ 1 ]. Despite their disparate nature, they are significantly correlated with cognitive impairment, regardless of the establishment of a definite diagnosis [ 2 , 3 ]. The battery of symptoms covers different neuropsychiatric aspects, such as anxiety, depression, apathy, delusions, agitation, irritability or elation, motor behaviours, as well as sleep and eating disturbances.…”

Difficulties of diagnosing and managing dementia in people with Down syndrome

“…Furthermore, there are four published studies and Cochrane reviews that show no benefit with donepezil, 2 rivastigmine, 3 memantine, 4,5 or galantamine. 6 Another Cochrane Review in 2015 showed no benefit of pharmacological interventions for cognitive decline in people with Down syndrome.…”

“…It is important not to overlook dementia as an early diagnosis can facilitate prompt pharmacological and psychosocial treatments and effective care planning. 5 When dementia is diagnosed, a decision to use medication is, of course, an individual one, and should take account of the views of families and carers. Our paper provides additional evidence that could inform the decision-making process.…”