Intellectual disability and dementia

The challenges of diagnosis and treatment of dementia in Down’s syndrome.

Vaughan, R.M., McGee, C., Guerin, S., Tyrrell, J. and Dodd, P.
Irish Journal of Psychological Medicine
This study analysed retrospective data on twenty adults with Down’s syndrome (DS), who are clients of a specialist service in Dublin.
The aim was to compare the practice of this service on diagnosis and treatment of dementia, with the consensus recommendations of the Royal College of Psychiatry, British Psychological Society and National Institute for Health and Care Excellence. Further aims were to establish average time to make a diagnosis and commence pharmacotherapy, and to describe tolerability to acetylcholinesterase inhibitors. Vaughan et al. (2016) found that screening for dementia did not take place before the age of 30yrs with the mean age for first assessment being 48yrs and average age at diagnosis being 51yrs. Average length of time from first identified symptoms to diagnosis was 1.3yrs. Of those diagnosed, 83% were prescribed acetylcholinesterase inhibitors but the authors were concerned at the continued use of the drug even when there appeared to be no benefit to the person. They found that a wide range of assessments were in use and that longitudinal assessment and follow up were not practiced. The authors recommend the streamlining of assessment tools and repeating assessment on a longitudinal basis.

Professional carers’ experiences of caring for individuals with intellectual disability and dementia: A review of the literature.

Cleary, J. and Doody, O.
Journal of Intellectual Disabilities
This article documents a narrative literature review of professional carer’s experiences of caring for individuals with intellectual disability and dementia, between January 2010 and May 2015.
The literature suggests a lack of knowledge among staff about dementia progression, the presence of pain and the impact of the environment, with staff aware of the need for training. Cleary and O’Doody (2017) report evidence of an increased demand in care giving and on levels of stress among staff. Early signs of dementia are sometime misinterpreted as being part of the intellectual disability and dementia may only be recognised when more overt behavioural and psychological symptoms present. The authors highlight evidence of the need for training that is specific to intellectual disability, person centred and role appropriate and to the need for staff to be recognised as a key resource.

Nurses' experience of caring for people with intellectual disability and dementia.

Cleary, J. and Doody, O.
Journal of Clinical Nursing
Using a Husserlian phenomenological approach Cleary & Doody (2016) explored the lived experience of 20 nurses providing community and residential services to people with an intellectual disability and dementia.
Contrary to previous literature in this area, the authors found a good level of knowledge about dementia and a confidence in providing end of life care but participants reported concern about the level of knowledge among their colleagues. Participants were committed to a person centred approach but highlighted the impact of increased time needed to provide care and support. They also highlighted the complex and difficult nature of transitions across all settings and the impact of the behaviour of the person with dementia on their peers. The authors point to the need for an educated, dementia aware workforce.