Caregivers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis

Abstract

Purpose A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose of this paper was to develop an understanding of the complexities, challenges and support available to meet the needs of an ageing population. Design/methodology/approach A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges caregivers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships and trends to enhance the awareness of gaps in care provision. Findings There were six main domains identified from the available literature which included: gaps in knowledge and skills, early identification of dementia and associated difficulties, managing behaviour, coping, burden of care and Impact on confidence. Originality/value To the best of the authors’ knowledge, this is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia.

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review

“…It also highlights key factors that support carers within their caring role. Acton et al’s (2023) similar systematic review utilises only eight out of the fourteen studies included in this review, to map the challenges experienced by carers. Acton et al’s (2023) identified domains, such as gaps in knowledge and skills, burden and increased care demands are evidenced with the emerging themes of this review.…”

“…These reviews fail to fully capture the experiences of the primary caregivers for people with a learning disability and dementia. A recent small-scale review has been published ( Acton et al, 2023 ) claiming to explore carers experience of caring for individuals with a learning disability and dementia. However upon review it would appear that Acton et al (2023) have not explicitly followed their eligibility criteria for their qualitative synthesis, (e.g., quantitative and non-dementia papers included) and therefor findings should be interpreted with caution.…”

“…A recent small-scale review has been published ( Acton et al, 2023 ) claiming to explore carers experience of caring for individuals with a learning disability and dementia. However upon review it would appear that Acton et al (2023) have not explicitly followed their eligibility criteria for their qualitative synthesis, (e.g., quantitative and non-dementia papers included) and therefor findings should be interpreted with caution. The aim of this qualitative systematic review was to explore the evidence base of family and formal carers’ experiences of caring for someone with both a learning disability and dementia and their needs, and addressed the following research question: How do family and formal carers experience caring for someone with both a learning disability and dementia?…”

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers

“…The loss of everyday skills experienced by such persons has to be compensated for by a significant increase in the help provided by formal caregivers (Alzheimer's Association, 2022; Cleary & Doody, 2017a; Janicki et al, 2005; McCarron et al, 2005) This often results in a feeling of overload among formal caregivers as they are then left with relatively little time for other residents (the use of the term residents in these study means, persons who are living in the care facility for people with disabilities) (Gövert et al, 2016). Furthermore, as formal caregivers frequently report that they feel helpless and overwhelmed when dealing with dementia in people with intellectual disabilities (Acton et al, 2023; Grundwald et al, 2017), there may also be a drop in the quality of care provided (Herron et al, 2020; Rose & Rose, 2005).…”

Assessing adherence to National Institute for Health and Care Excellence dementia assessment and diagnosis guidelines in adults with intellectual disability: a retrospective cohort study

“…Identifying dementia in people with intellectual disability is often reliant on those who provide care recognising the early signs and symptoms of cognitive decline (Dodd, 2014). However, carers often receive limited training or education about ageing in people with intellectual disability which can result in delays in identifying cognitive changes (Acton et al , 2023; Iacono et al , 2014). When cognitive changes are identified, the presence of behavioural distress can result in diagnostic delay, particularly in the early stages of dementia (Cleary and Doody, 2017).…”