This guide is part of a series of guides looking at reasonable adjustments in a specific service area | Public Health England
It is intended to help staff in public health, health services and social care to ensure that their services are accessible to people with learning disabilities who may have, or be developing, dementia. The guide can also be of use to family and friends of people with learning disabilities.
This new guideline from NICE aims to ensure that people with learning disabilities are given the help they need to access a range of services as they grow older, so they can live healthy and fulfilled lives. It covers identifying changing needs, planning for the future, and delivering services including health, social care and housing.
Study finds, Post diagnostic support is essential for the general population, and within the intellectual disability field, needs to be individualized and adapted to the person’s needs as dementia progresses.
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.
A report from several voluntary sector organisations calls for an improvement in the way that the needs of people with learning disabilities and dementia are addressed | VODG
This paper explores how best to develop support, services and treatments for the growing number of people with a learning disability and dementia. It builds on earlier work, across the voluntary sector strategic partnership which focuses on dementia support within the context of the protected characteristics defined under the Equality Act 2010.