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.

Citation

Acton, D.J., Jaydeokar, S. and Jones, S. (2023), "Caregivers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis", Advances in Mental Health and Intellectual Disabilities, Vol. 17 No. 1, pp. 10-25. https://doi.org/10.1108/AMHID-08-2022-0027

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-related conditions, 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 and social 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 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 keywords intellectual 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 Skills Programme 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.

Analysis

A qualitative evidence synthesis (QES) method was used to systematically analyse and interpret the information identified within studies. QES can provide rich interpretations relating to the impact of a condition, intervention or policy on the lived experience and feelings of those involved (Flemming et al., 2019). Interoperated approaches allow for a greater analysis of existing primary data to generate new knowledge to develop an in-depth understanding of a particular phenomenon and experience (Hannes and Lockwood, 2011).

Noblit et al. (1988) were pioneers in synthesising qualitative data. They describe such reviews as aggregated or as interpretive. The aggregated review summarises the data and interpretive approaches, interpret the data to inform the development of new understandings. This can lead to the development of new theories in understanding or predicting behaviour.

Interpretive synthesis allows for the development of concepts and theories grounded in the data contained in the primary studies. Themes were developed inductively with the aim of generating concepts and further develop theory, for example, using meta-ethnography (Flemming et al., 2019). The approach to QES taken is dependent on the question and scope of the review (Hannes and Lockwood, 2011).

QES is widely used in health and social care as they provide insight into the effectiveness of clinical practices and address additional questions through analysis of evidence (Hannes and Lockwood, 2011). QES use a number of approaches to integrate data including meta-ethnography, narrative, realist and interpretive synthesis (Flemming and Noyes, 2021).

A meta-ethnography approach was used to facilitate concepts between studies using a seven-stage process defined by Noblit et al.(1988). The process includes: preparation, determining relevance, reading studies, determining studies relationship to each other, translating studies, synthesising translation and expressing the synthesis.

All 12 reviewed papers were considered relevant for inclusion. Five studies had low participant numbers of seven or below but were considered relevant for inclusion because of the relationship with the other included study papers. Evidence synthesis was conducted manually by DA, SJ and SLJ. Synthesis was an iterative process which involved reading and re-reading papers to become familiarised with the overall content and determine relationship between studies.

Detailed notes were made during the translation process with initial grouping of identified themes. This process involved interpretive synthesis to identified features which were of particular interest and noteworthy. The themes were examined by DA, SJ and SLJ to develop theories and concepts from the data within the studies. These concepts were synthesised into representative examples and the main domains were identified.

Results

Six key domains were identified from the data. The first theme represents the daily challenges and emotional impact of caring for older adults with intellectual disability. The remaining five domains represent the impact of caring for a person with dementia. These were limited awareness of dementia and ageing, coping strategies, identifying dementia, managing changes in behaviour and burden of care.

Gaps in knowledge and skills

The symptoms of dementia can present differently in people with intellectual disability (Alzheimer's Society, 2021; Zeilinger et al., 2022). Heterogeneity in clinical presentation, particularly in the early stages of dementia with subtle signs of cognitive decline, is more difficult to identify in people with intellectual disability (Krinsky-McHale and Silverman, 2013; Strydom et al., 2010). Consequently, people receive a later diagnosis, usually in the moderate to later stages of dementia (McCarron et al., 2018; Sheehan et al., 2014).

Limited carer knowledge of the signs and symptoms of dementia is an important factor in people receiving effective post-diagnostic treatments (McLaughlin and Jones, 2011). The difficulty identifying signs of cognitive decline can be because of existing differences in memory, thinking and living skills which are often already caused by the person’s intellectual disability (Strydom et al., 2013; The British Psychological Society, 2015).

Changes in personality, behaviour and loss of skills are early indications of possible cognitive decline in people with intellectual disability (Herron et al., 2020). However, behavioural changes or loss of skills can be viewed by carers as a natural decline, associated with a person’s intellectual disability (Herron and Priest, 2013; McLaughlin and Jones, 2011; Ryan, MacHale, and Hickey, 2018). This can result in a delay for people receiving post-diagnostic treatment (Carling-Jenkins et al., 2012). Therefore, it is important for caregivers of people with intellectual disability to receive information to help improve awareness of the subtle signs of dementia to improve identification and early diagnosis.

Early identification of dementia and associated difficulties

There is a dearth of evidence for the delivery of dementia education for caregivers in the intellectual disability field (Dodd, 2014). Some evidence suggests the importance of caregivers identifying the subtle signs of dementia to support early diagnosis (Carling-Jenkins et al., 2012; Herron and Priest, 2013; Herron et al., 2020; McLaughlin and Jones, 2011; Ryan et al., 2018). It is argued specialist services offer limited pre- and post-diagnostic support to caregivers (MacDonald and Summers, 2020). Consequently, caregivers can often feel unsupported and report a lack of preparedness to provide ongoing aged care (Webber et al., 2016).

The importance of older adult education is entrenched in clinical guidelines (National Institute for Health and Care Excellence, 2018a, 2018b). In spite of clinical recommendations, evidence suggests caregivers receive insufficient pre- and post-diagnostic age-related education (Herron and Priest, 2013; Herron et al., 2020). Similarly, several studies identify the limitation of dementia awareness education for caregivers to improve confidence in supporting older people with intellectual disability (Furniss et al., 2012; Iacono et al., 2014; Ryan et al., 2018; Webber et al., 2016).

To demonstrate the effectiveness of bespoke dementia education for caregivers of people with intellectual disability, Fahey-McCarthy et al.(2009) reported training improved participant’s confidence and orient aged care. A key strategy to improving care provision for people growing older with intellectual disability is education for those who provide care (National Institute for Health and Care Excellence, 2018a). However, evidence suggests a significant improvement in clinical practice is needed to develop the skills of caregivers in providing high quality care for older adults with intellectual disability (Coyle et al., 2014; Ryan et al., 2018; Webber et al., 2016).

It is noted, key to making improvements in care delivery is building on the importance of maintaining person centred approaches to ensure people lead fulfilling lives (Herron et al., 2020). Caregiver have integral role and can feel undervalued often fearing a person would be moved after a diagnosis of dementia as they are assumed to not have the necessary skills to provide ongoing care (Perera and Standen, 2014; Ryan et al., 2018). However, it is important caregivers are supported to develop the core principles in dementia care to improve their own coping strategies (Janicki et al., 2010).

Managing behaviour

The changes in a person’s behaviour present a significant daily challenge for carers (Buys et al., 2012; Holst et al., 2018). A key factor in supporting delivery of care is a lack of challenging behaviour and dementia specific training (Herron and Priest, 2013). In their study, Iacono et al.(2014) found participants experienced the daily challenge of effectively managing increased levels of agitation and distress in people with dementia. Ryan et al.(2018) reported a direct correlation between increased episodes of challenging behaviour in older adults and higher levels of caregiver stress. In addition, caregivers rely on existing knowledge of challenging behaviour to manage the daily complexities presented by a person with dementia (Perera and Standen, 2014).

Several studies demonstrate caregivers make frequent adaptations to management strategies to establish a consistent approach (Iacono et al., 2014; Perera and Standen, 2014). Similarly, Iacono et al.(2014) found developing effective communication systems within care teams was a useful strategy in reducing behavioural incidence.

The presence of challenging behaviour in people with intellectual disability can be an indication of pain or physical illness (de Winter et al., 2011; Dillane and Doody, 2019; Doody and Bailey, 2017). Evidence suggests a lack of awareness of the signs of distress can result in diagnostic overshadowing and delay people receiving effective pain management (Heslop and Hoghton, 2018). The effective use of pain assessment tools has been found to reduce incidence of challenging behaviour in people with intellectual disability (de Winter et al., 2011; Doody and Bailey, 2019).

The evidence underlines the skilled role professional carers have and how they become experts by experience, often propelled into the role through necessity rather than choice, with limited alternatives. This is compounded by a lack of support and limited post-diagnostic services to help caregivers to improve the quality of life of people with intellectual disability and dementia. Co-producing post-diagnostic interventions with caregivers has demonstrated that innovative practice is clearly needed to improve dementia care provision (Acton et al., 2022).

Coping

Developing effective coping strategies can have a significant effect on individuals lives and on the lives of those who provide care (Iacono et al., 2014). In particular, family carers are continually balancing the needs of themselves with the needs of the people they care for (Janicki et al., 2010). The development of individual coping skills is a key aspect of this process, however, the development of these essential skills is often a gradual process (Alzheimer's Society, 2021). It is argued there is a wide variation in care management strategies used by those providing care on a daily basis (Furniss et al., 2012; Herron and Priest, 2013; Iacono et al., 2014). Perera and Standen(2014) examined coping strategies used by family and formal caregivers of people with intellectual disability and dementia. Narratives from caregivers demonstrated a creative and adaptability in response to a person’s changing needs. These findings further establish the importance of caregivers developing individual coping strategies to improving confidence in providing person centred dementia care (McLaughlin and Jones, 2011; Ryan et al., 2018).

The benefits of using a flexible caring approach were found to be valuable in reducing the daily stressors associated with caring for a person with intellectual disability and dementia (Herron et al., 2020). Furthermore, evidence of this approach is provided by Iacono et al. (2014) and Perera and Standen (2014) who reported carers use a “strategy toolbox” or trial and error learning to manage the daily challenges of providing care. Caregivers frequently use their own experiences of challenging situations to share with peers to improve overall care practices and modify approaches (Iacono et al., 2014).

The development of self-coping strategies is equally important for caregivers to avoid burnout. It is important to recognise that caregivers coping strategies have an influence on the level of burden associated with caring for a person with intellectual disability and dementia (Janicki et al., 2010). In their study, Webber et al. (2016) found the diagnosis of dementia promoted caregivers to consider moving older adults to aged care because of lack of confidence in providing care. Similar findings were identified by Iacono et al. (2014) who emphasised the emotional impact working with people with intellectual disability and dementia had on formal carers leading to increased care pressures.

Burden of care

Burden of care is a multi-dimensional response to physical, psychological, emotional and financial stressors associated with care giving (Etters et al., 2008). Caregiver burden derives from the activities and daily stressors associated with providing dementia care (Connors et al., 2020).

There are a dearth of studies which have specifically examined burden of care in caregivers of people with intellectual disability and dementia. The emotional and psychological aspects associated with the burden of care for a person with dementia is clearly outlined in studies (Herron et al., 2020; Janicki et al., 2010; Mary McCarron et al., 2010). Carling-Jenkins et al. (2012) identified the emotional impact of caring for a person with dementia placed on family caregivers. In addition, it is suggested caring for a person with intellectual disability has a greater impact on the commitment and morale of carers (Hatton et al., 1999). It is suggested responding to people’s changing characteristics is a key contributory factor which increases carer burden in both family and formal caregivers (Ryan et al., 2018). Consequently, Furniss et al.(2012); Janicki et al.(2010); and Webber et al.(2016) argue caregivers regularly examine their own ability to effectively deliver person-centred dementia care.

Caring for a person with intellectual disability and dementia is demanding and can create increased levels of stress and anxiety in those who provide (Ryan et al., 2018). It is important for caregivers to have the opportunity to share their experiences with other caregivers to learn from each other (Perera and Standen, 2014). The commitment of caring for a person with advancing dementia to “age in place” presents families and formal caregivers with a moral dilemma (Coyle et al., 2014). It has been demonstrated in the literature that caregivers recognise their own limitations in adequately responding to a person’s changing needs (Coyle et al., 2014; Furniss et al., 2012). In addition, concerns about future care provision further compound the burden of caring for older adults with intellectual disability (Janicki et al., 2010).

Support structures have been found to provide people with a forum to express concerns, acknowledge any worries and more positively respond to difficulties (McLaughlin and Jones, 2011). Providing caregivers with opportunities to learn from each other is effective in alleviating burden and helps establish a structural support platform (Ryan et al., 2018). These findings suggest support networks and social opportunities help provide caregivers with necessary support to reduce the burden of care. However, lone family caregivers were found to not have the same support network opportunities and relied heavily on health and social care staff to provide support (McLaughlin and Jones, 2011). This lack of support network opportunities places considerable pressure on family caregivers.

Impact on confidence

In general, the studies underlined the challenges caregivers experience in effectively responding to the needs of older adults with intellectual disability (Webber et al., 2016). The evidence suggests the onset of dementia creates an additional dependency on carers, because of an increased time spent caring for a person, as their dementia progresses (Coyle et al., 2014; Furniss et al., 2012). Subsequently, the increased care giving role compels carers to examine their own competence and confidence to provide continued support to older adults with intellectual disability (Janicki et al., 2010; Webber et al., 2016).

There is some evidence to suggest that involvement of specialist service is essential to improve caregiver confidence in providing dementia care (Perera and Standen, 2014). Specialist services are vital in supporting caregivers post-diagnostically to make environmental adaptations, modify care approaches and deliver psychosocial interventions (Furniss et al., 2012; Herron et al., 2020; MacDonald and Summers, 2020). However, barriers exist which can often limit carers access to support from specialist services. Equally, a lack of available information which promotes support services is considered a particular issue (Furniss et al., 2012). Furthermore, McLaughlin and Jones (2011) argue a lack of post-diagnostic follow up is an area which needs further investigation.

The commitment of caregivers to improve the lives of older people with intellectual disability is evidenced throughout the literature. Worryingly, this can be at the expense of carers own medical needs (Ryan et al., 2018). Higher levels of stress and increased isolation can present an additional challenge for carers, particularly unpaid family carers (Janicki et al., 2010; McLaughlin and Jones, 2011). It is important that family carers maintain their own health and well-being in addition to caring for the person with intellectual disability and dementia (Janicki et al., 2010).Therefore, support networks are essential within this process to help reduce caregivers feelings of isolation and loneliness (Herron et al., 2020). However, support networks are largely in the third sector domain, with limited information provided to caregivers of available support services (Francis and Hanna, 2022). These services should be integral to the care and treatment of people with dementia (National Institute for Health and Care Excellence, 2018b).

The opportunity of support is crucial in providing people with social opportunities to maintain relationships (Webber et al., 2014) and providing caregivers with periods of much needed respite (Buys et al., 2012).

Discussion

The study used the QES as a process for synthesising the available and interoperating literature to gain valuable insight into the challenges of delivering care to people with intellectual disability and dementia. QES aims to support ideas and generate new findings to improve the experience of health and social care (Carroll, 2017). QES is increasingly recognised as an effective method towards the development of guidelines for complex interventions (Flemming et al., 2019). The process helps develop arguments to understand complex and often challenging issues. In this study, the QES helped identify six themes around the experience of caregivers caring for adults with intellectual disability. It enabled a greater understanding of individual experiences and the complexities involved in caring for a person with intellectual disability and dementia.

The evidence suggests research in the intellectual disability field has largely focused on diagnosis and assessment (MacDonald and Summers, 2020). There is limited evidence on what is needed post-diagnostically. The diagnosis of dementia relies heavily on caregivers recognising the early signs and symptoms of cognitive decline (Ryan et al., 2018). Moreover, there is even less evidence of service provision which is directed towards follow up or effective support for those who provide care. Furthermore, there is limited evidence of interagency ownership or collaborative working practices. Guidelines for dementia care in the UK recognises the importance of this approach (National Institute for Health and Care Excellence, 2018b). However, there is a dearth of evidence for proactive support for this marginalised group.

There is a need for qualitative investigations to examine the six domains identified through QES in this study; it will help gain a better understanding of the needs of people with dementia, including those who provide care. Improving the quality of aged care received by people with intellectual disability is clearly set out in national guidance. The overarching principle is to ensure clinical expertise is provided to improve the delivery of care to ageing population of people with intellectual disability (National Institute for Health and Care Excellence, 2018a, 2018b; NHS England, 2020).

To overcome the challenge of caring for a person with dementia, it is important for carers to receive necessary education on ageing and dementia to improve caring practices. Furthermore, education should include awareness of the physical health needs of this population and promote the use of appropriate monitoring and assessment tools to contribute towards reducing the health inequalities gap (Heslop and Hoghton, 2018; Webber et al., 2016).

The experiences of providing dementia care for people with intellectual disability highlight the need for improvements in clinical practice. The evidence suggests specialist services are reactive and often lack pro-active strategies to avoid crisis situations (Herron et al., 2020). This can result in placement breakdown and caregivers having to make difficult decisions in relation to providing ongoing and future care. A key mandate in UK policy is to support people to live healthier and happier lives, this includes support for those people who provide care (NHS England, 2020). However, home care often breaks down or reaches crisis point before services actively engage (Chapman et al., 2018; Holingue et al., 2022).

Evaluation of specialist intellectual disability memory services has demonstrated the crucial role clinical services have in providing effective screening, diagnosis and post-diagnostic education (Bayley et al., 2017; Cairns et al., 2011; Hobson et al., 2012). A study by Chapman et al. (2018) reported the effectiveness of a dementia service model in intellectual disability clinical practice. This included evidence for the potential effect education has on improving awareness and reducing levels of caregiver stress, hence reducing burden and proactively supporting future planning to include end-of-life care.

The burden of caring for a person with intellectual disability and dementia reinforces the need for caregivers to have appropriate access to psychological and social support in line with national strategies and best practice guidance (Department of Health, 2016; National Institute for Health and Care Excellence, 2018a, 2018b; The British Psychological Society, 2015). However, evidence suggests the inconsistency in providing such support fails to address carers own support requirements (Heller et al., 2018). Therefore, it is essential that clinical direction focuses on improving confidence in the care workforce to provide aged care and contribute towards reducing the burden of care.

Conclusion

This QES provides an insight into the challenges of caring for a person with intellectual disability and dementia. Caring for a person with intellectual disability and dementia can be demanding for those who provide care. In spite of these difficulties, carers demonstrate a commitment to provide person centred dementia care with limited available resources to support aged care delivery.

There is a need for health and social care services to improve support to caregivers of people with intellectual disability and dementia. In addition, improvements in specialist clinical services to support those who provide care manage increasing complex issues caused by a person’s dementia progression.

A salient finding within the literature was the lack of available evidence of dementia education for family and carers. Given the limited available evidence, improving pre- and post-diagnostic support is imperative for further exploration and study. Future evaluation studies need to examine multiple intellectual disability dementia service models to inform future direction in meeting the needs of an ageing population. Furthermore, the development and evaluation of bespoke intellectual disability dementia education programmes are needed to evaluate the effectiveness of such training programmes. These should be co-produced with caregivers to understand the lived experience perspective and include guides to support caregivers transfer knowledge into the delivery of person-centred dementia care.

Figures

Figure 1

PRISMA flow diagram

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

Table 2

Eligibility criteria

Inclusion criteria	Exclusion criteria
Population Family caregivers, paid formal caregivers, and unpaid caregivers of people with intellectual disability with dementia or older adults	Carers of people without intellectual disability and dementia Carers of children or adolescents
Study characteristics Articles written in English Peer reviewed publications All qualitative studies Publication between 2012 and 2022	Research paper not available in English Quantitative studies Non-peer reviewed publications

Table 3

Results of individual sources of evidence

Author/year/title/country	Purpose	Type of study	Data collection/analysis	Sample	Summary of findings
Buys et al. (2012) “Service providers’ perceptions of active ageing among older adults with lifelong intellectual disabilities” Australia	To explore facilitators and barriers to active aging for older adults with intellectual disabilities	Qualitative research	Face-to-face individual semi-structured interviews Transcripts uploaded to NVivo 8 software WHO (2000) six core principles followed to guide analysis	N = 16 participants from 16 different service providers	Study identified carers have a direct role in encouraging and facilitating active aging. Principles of active aging need to be applied more consistently encompassing diversity within transition to retirement Recognising limitations in social networks which placed increased reliance on paid carers to support active engagement
Carling-Jenkins et al. (2012) “Experiences of supporting people with Down syndrome and Alzheimer’s disease in aged care and family environments” Australia	To understand the experiences of families in pursuing diagnosis and caring for people with Down’s syndrome and Alzheimer’s disease	Qualitative research	Semi-structured interviews Initial interview – focused on changes to presentation which triggered carer to seek diagnosis. Follow up interview explored experiences of providing care Data analysis followed Miles and Huberman (1994) other analysis strategies mentioned but no detail provided	N = 3 family carers (paid and unpaid) who were part of a larger study exploring pathways to diagnosis	Families reported difficulties navigating service systems which caused stress and confusion. Professional within services focused more on disability than recent diagnosis of Alzheimer’s disease Behavioural problems, loss of independent skills and interests. Families experienced increases burden of care and financial constraint. Reactive service provision and difficulties accessing support identified
Coyle et al. (2014) “Aging together: sibling carers of adults with intellectual and developmental disabilities” United States of America	To explore the transition of care to sibling carers when older parents unable to provide primary care to person with intellectual disability	Qualitative research	Semi-structured interviews Conducted mainly by telephone Interviews transcribed to NVivo 9 software Analysis completed using a constant comparative approach	N = 15 sibling carers over 40 years of age	Findings underline the need for effective future planning and availability of support. Identifying the need for development of longer-term support services with professional’s lack of recognition of appropriate service need with a greater need for available education resources for carers on aging and intellectual disability
Furniss et al. (2012) “The views of people who care for adults with Down’s syndrome and dementia: a service evaluation” United Kingdom	To evaluate the support community intellectual disability team provided to families and paid carers of people with Down’s syndrome and dementia	Qualitative research Service evaluation	Semi-structured interviews Interpretative phenomenological analysis	N = 16 people with Down’s syndrome and dementia N = 30 family carers, relatives and staff	Three themes identified from analysis: 1. Knowledge and information 2. Coping and support 3. Concerns about the future
Herron and Priest (2013) “Support workers’ knowledge about dementia: a vignette study” United Kingdom	To explore support workers knowledge about the mental health of older adults with intellectual disabilities	Qualitative research Vignette study	Semi-structured interviews Thematic analysis	N = 14 support workers	Limited mental health education undertaken by participants impacting on identification of signs of early to intermediate cognitive decline. A lack of awareness and recognition of later stages of dementia identified by carers as early onset
Herron et al. (2020) “Supporting people with an intellectual disability and dementia: a constructivist grounded theory study exploring care providers” views and experiences in the UK	To understand the experiences of carers in supporting a person with intellectual disability and dementia. In addition, understand intellectual disability professionals support in meeting the needs of patient’s, families and carers	Qualitative research Grounded theory	Face-to-face semi structured interviews Analysed using constructivist grounded theory	N = 8 health-care professionals N = 8 paid carers N = 2 family carers	Findings demonstrated the importance of early diagnosis planning and supporting carers’ holistic needs. Identified the role of intellectual disability services in providing post-diagnostic support for carers
Iacono et al. (2014) “Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer’s disease in group homes” Australia	To report on experiences of support staff providing care and responding to the needs of people with Down’s syndrome and Alzheimer’s disease	Qualitative research	Face-to-face semi-structured interviews 6–12 months apart Thematic analysis	N = 9 people with Down’s syndrome with Alzheimer’s disease N = 18 staff initial N = 15 staff follow up	Staff demonstrated limited understanding of how Alzheimer’s disease impacts on a person with Down’s syndrome using ad hoc responses to care and adopting trial and error strategies Staff were committed to providing care but at risk of rejecting input and support
Janicki et al. (2010) “Coping with dementia and older families of adults with Down syndrome” United States of America	To understand the comparative effects of caregiving, examining the key signs of commencement of cognitive decline, health factors and care burden on older carers of people with Down’s syndrome and dementia	Qualitative research	Postal survey questionnaires Method of analysis not described	N = 17 primary carers	Carers commitment was evident and environmental adaptations and seeking external support to continue to provide care at home No burn out was identified or health decline from caring
McCarron et al. (2010) “Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia” Ireland	To understand carer concerns in supporting persons with intellectual disabilities and advanced dementia	Qualitative interview	14 focus groups Content analysis	N = 50 from 6 intellectual disability services N = 7 from single palliative care service	Focus group data identified two main themes: – Building upon services’ history and personal caring – offering quality and sensitive care – Supporting comfort and optimal death in persons with Intellectual disability and advanced dementia
McLaughlin and Jones (2011) “It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia” United Kingdom	To increase knowledge by examining the information and support needs of carers of people with Down’s syndrome and dementia	Qualitative interview study	Unstructured, face-to-face interview Thematic analysis	N = 4 sibling carers N = 2 paid carers	Identified changes to carers information and support needs throughout all stages such as pre-diagnosis, diagnosis and post-diagnosis. Health professional viewed as having an important role in assisting carers to manage and respond to individuals changing needs
Perera and Standen (2014) “Exploring coping strategies of carers looking after people with intellectual disabilities and dementia” United Kingdom	To explore coping strategies of paid carers and families in caring for a person with intellectual disabilities and dementia	Qualitative research	Face-to-face semi-structured interviews Thematic analysis	N = 6 paid carers N = 3 family carers	Three main themes identified: 1. “Narratives” helped people manage daily stressors 2. “Strategy toolbox” to help manage stressful situations 3. “Compartmentalisation” allowed for separation of work and personal life
Ryan et al. (2018) “Forgetting familiar faces: staff perceptions of dementia in people with intellectual disabilities” Ireland	To explore staff members experiences of caring for a person with dementia and understand the emotional impact dementia has on people who provide care and their support needs	Qualitative research	Focus groups Demographic questionnaire Thematic analysis	N = 18 paid care staff	Four key themes emerged: 1. Staff members difficulties identifying early signs of dementia 2. The process of diagnosis 3. The challenges dementia places on clients themselves 4. The challenges a dementia diagnosis places on staff, families and friends