Caregivers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis
| DOI | https://doi.org/10.1108/AMHID-08-2022-0027 |
| Published date | 20 January 2023 |
| Date | 20 January 2023 |
| Pages | 10-25 |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
| Author | Daniel James Acton,Sujeet Jaydeokar,Steven Jones |
Caregivers experiences of caring for
people with intellectual disability and
dementia: a qualitative evidence synthesis
Daniel James Acton, Sujeet Jaydeokar and Steven Jones
Abstract
Purpose –A systematic review of the literature was completed to examine the needs of those who
provide careto people with intellectual disability and dementia.The purpose of this paper was to develop
an understanding of thecomplexities, challenges and support availableto meet the needs of an ageing
population.
Design/methodology/approach –A qualitative evidence synthesis was used to appraise 12 studies.
An evidence synthesisapproach was used to better understand the challengescaregivers 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
awarenessof gaps in care provision.
Findings –There were six main domainsidentified 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.
Keywords Learning disability, Dementia, Ageing, Alzheimer’s disease, Burden of care, Older adults
Paper type Literature review
Introduction
Dementia is a progressive disease of the brain characterised by a reduction or change in
cognitive function which can effect a person’s memory, ability to effectively communicate,
complete daily tasks and solve problems, with changes to behaviour and personality
common symptoms (National Institute for Health and Care Excellence, 2018b). People with
intellectual disability are living longer and at increased risk of developing the same general
population age-relatedconditions, such as dementia (Alzheimer’s Society, 2021;The British
Psychological Society, 2015). Available evidence suggests that the risk of dementia is
markedly greater with early onset more prevalent in this population group (Strydom et al.,
2013).
Providing high quality personalised care for people with dementia is a UK Government and
NHS England priority (NHS England, 2020). The Prime Minister’s dementia challenge
underlines the importance of carers receiving high quality health andsocial care support to
improve care delivery for older people (Department of Health, 2016).
In recent years, there is an increasing interest in the people who provide care and
understanding the challenges they face when supporting adults with intellectual disability
and dementia (Alzheimer’s Society, 2021;Courtenay et al.,2010). Some commentators
Daniel James Acton and
Sujeet Jaydeokar are based
at Learning Disability
Services at Cheshire and
Wirral Partnership NHS
Foundation Trust, Chester,
UK; Centre for Autism
Neurodevelopmental
Disorders and Intellectual
Disability (CANDDID),
Chester, UK and Chester
Medical School, University of
Chester, Chester, UK.
Steven Jones is based at
Chester Medical School,
University of Chester,
Chester, UK.
Received 9 August 2022
Revised 20 December 2022
Accepted 20 December 2022
PAGE 10 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES jVOL. 17 NO. 1 2023, pp. 10-25, ©Emerald Publishing Limited, ISSN 2044-1282 DOI 10.1108/AMHID-08-2022-0027
argue that specialist intellectual disability services have been slow in responding to the
needs of an ageing population, with more proactive strategies needed to support peoples
transition into older adulthood (McCarron et al., 2014). In association with ageing, people
with intellectual disability are at risk of developing the same health-care conditions, with
quality of life and morbidity a significant factor in this ageing population group (Cleary and
Doody, 2017;Heslop et al.,2014;Heslop and Hoghton, 2018).
The importance of enhancing the dementia care skills in those who provide care is
underlined within national clinical guidance (National Institute for Health and Care
Excellence,2018a, 2018b). However, it is contended, people caring for older adults with
intellectual disability do not always receive appropriate access to specialist services and
there is often a lack of detail on what available interventions could help support a person’s
changing needs (Herron and Priest,2013;Iacono et al.,2014).
This paper examines the current literature, to further increase understanding of the
challenges experienced in providing care to people with intellectual disability and
dementia.
Methodology
Search strategy
An initial scoping exercise to enhance the search criteria and develop an understanding of
the research topic area was undertaken (DA). A detailed literature search was completed in
March 2022. The search included studies between 2012 and 2022 using databases
CINAHL, PsycInfo, MEDLINE, ScienceDirect, Cochrane and Google Scholar. The search
strategy (Table 1) used the keywordsintellectual disability and adjacent terms.
Search outcomes
A total of 1,080 papers were identified from the database and reference list search and
exported into EndNote software. A total of 91 duplicates were removed and 832 papers
were reviewed by (DA) and excluded during review of title and abstract. The 46 full-text
papers identified in this process were assessed independently by DA, SJ and SLJ. During
this process, the reviewers agreed to exclude 34 studies which did not meet the eligibility
criteria (Table 2). A group discussion between all authors was completed to clarify any
uncertainty surrounding eligibility criteria with 12 studies identified for inclusion in the final
analysis. The Preferred Reporting Items for Systematic reviews and Meta Analyses (Moher
et al.,2009) illustrates the inclusion and exclusion review process (Figure 1).
Quality appraisal
The methodological quality of the studies was appraised independently by all authors using
the Critical Appraisal SkillsProgramme tool (Critical Appraisal Skills Programme, 2018). The
purpose of the quality assessment was to demonstrate the systematic process used to
appraise the quality of available evidence and not to exclude studies based on quality.
Table 3 provides an overview of study papers.
Table 1 Keywords and search terms
1 Intellectual disability, developmental disability, learning disability, learning disabilities,Down syndrome, Down’s syndrome
2 Dementia, Alzheimer’s disease, cognitive decline, cognitive impairment, ageing
3 Paid, unpaid carer, family, support worker, care giver, caring
4 Burden, care, stress, psychological distress, competence
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