A scoping review of post-diagnostic dementia supports for people with intellectual disability

Abstract

Objectives: People with intellectual disability, particularly people with Down syndrome, are at an increased risk for early-onset dementia, in comparison to people without an intellectual disability. The aim of this review was to scope the current landscape of post-diagnostic dementia supports for people with intellectual disability.

Method: A systematic search of five electronic databases (CINAHL, Medline, PsycArticles, PsycInfo and Web of Science) was conducted for this scoping review. Results were screened independently by two reviewers, with a third reviewer for arbitration where necessary.

Results: Forty-two studies met the inclusion criteria, and relevant information was extracted. The articles included focussed on the experiences of people with intellectual disability and dementia, as well as the role of carers, family members and staff. Key themes included ageing in place, environmental supports for people with intellectual disability and dementia, dementia-specific interventions and therapies, as well as the feasibility of these interventions. Besides the studies that focussed on these themes, other studies focussed on staff training and family supports.

Conclusion: This review highlights the importance of implementing timely and appropriate post-diagnostic supports for people living with intellectual disability and dementia. More controlled trials are required on post-diagnostic dementia supports for people with intellectual disability.

Keywords:

• Dementia
• Down syndrome
• intellectual disability
• support

Introduction

As people with intellectual disability are living to an older age (McCarron, Swinburne, et al., 2011), it has become more apparent that they are at increased risk for early-onset dementia, in comparison to people without an intellectual disability (Strydom et al., 2009). In particular, people with Down syndrome have a genetic vulnerability to Alzheimer’s disease due to having three copies of chromosome 21, such that virtually everyone with Down syndrome will have the neuropathology of Alzheimer’s disease by the age of 40 (Lott & Head, 2019).

The disparity between predicted prevalence of dementia in comparison to the actual number of dementia diagnoses among people with intellectual disability has been widely reported (Dawson et al., 2015; McCarron & Lawlor, 2003), with the timeline between the initial emergence of symptoms and a formal diagnosis averaging 3 years across the UK (Chrisp et al., 2011) with similar findings in Ireland and in the US (Jokinen et al., 2013; McCarron et al., 2017) which has broad implications for the provision of resources and supports. Many people with intellectual disability may struggle to obtain a diagnosis from appropriate specialist services, and where such a diagnosis is received, those diagnosed with dementia are also likely to require additional specialist advice and post-diagnostic support (McCarron et al., 2018).

For people with intellectual disability, the process to diagnose dementia can be challenging, due to pre-existing intellectual impairment, communication difficulties, staff turnover and impairment with daily activities (McCarron et al., 2018). It is critical to measure a change as compared to prior functioning to support clinical observation of significant decline (Strydom & Hassiotis, 2003); a baseline measurement of cognitive function and functional independence prior to any onset of decline allows for a clearer quantification of any subsequent decline. The availability of specialist expertise and training to facilitate diagnosis is essential, and once a diagnosis is established, a plan of care is needed.

A timely diagnosis offers the person living with dementia, as well as their families, appropriate time to plan for the future and to access appropriate supports while playing an active role in their own care planning (Robinson et al., 2010; Zeilig, 2015). Furthermore, there is significant demand for appropriate and inclusive dementia diagnostic pathways for people with young onset dementia, people with intellectual disabilities and minority populations (Chapman et al., 2018; Goeman et al., 2016; Parveen et al., 2017).

Post-diagnostic support has been defined in different ways in general population dementia support services (Dodd et al., 2018). Our working definition of post-diagnostic dementia support is taken from Gibb et al. (2019, p. 3): ‘enabling and assisting people with dementia and their families to live a life of their choosing throughout the continuum of dementia’. Post-diagnostic support is essential to support quality of life, well-being, inclusion and social connectedness. The scope of post-diagnostic support is largely dependent upon individual needs and the progression of dementia. In recent years, dementia care for the general population has focussed on maintaining the abilities and capabilities of the person living with dementia, rather than on skill deterioration or skill loss.

For the general population, post-diagnostic dementia supports have focussed on the facilitation of psychoeducational programmes for people with dementia and care partners. The Irish Dementia Working Group identified peer support, cognitive rehabilitation therapies, social contact, sharing of accessible information, and having a purpose as key areas for appropriate support after a dementia diagnosis (Gibb et al., 2019). Unhelpful supports were identified as inappropriate referrals and suggestions that one should attend a day centre or social club. Learning about dementia, legal and financial planning, information regarding local supports and services, communication, physical activity and nutrition, and environmental interventions were further identified as focal areas for support (Gibb et al., 2019). The Five Pillars Model of post-diagnostic support identifies its key pillars as: supporting community connections; peer support; planning for future care; understanding the illness and managing symptoms; and planning for future decision-making and was developed to provide people living with dementia, their families and carers with tools, connections, resources and plans (Simmons, 2011). In their clinical guidelines, Jokinen et al. (2013) confirmed the need for similar approaches for people with intellectual disabilities and dementia, but there is a need for more work on building the evidence base of responsive post-diagnostic interventions in this population. A systematic review by MacDonald and Summers (2020) did find that behavioural, systemic and therapeutic interventions were helpful for individuals with intellectual disability and dementia. Dodd et al. (2018) have also highlighted the importance of understanding non-cognitive symptoms of dementia in providing post-diagnostic support to people with intellectual disability. In the development and delivery of psychosocial interventions that are both person-centred and fit for purpose, the perspectives of people with intellectual disability and dementia must be included.

Although some progress has been made in studying post-diagnostic dementia supports for people with intellectual disability, currently less is known about such supports in this cohort compared to the general population. The aim of the current scoping review was to systematically search the existing literature for research evidence on post-diagnostic dementia supports for people with intellectual disability.

Methods

The scoping review methodology is based on the methodological framework proposed by Arksey and O’Malley (2005), including the amendments proposed by Levac et al. (2010). The Arksey and O’Malley framework consists of six stages:

1. Identifying the research question

2. Identifying relevant studies

3. Study selection

4. Charting the data

5. Collating, summarising and reporting results

6. Consultation.

The stages are discussed in more detail below.

Stage 1: Identifying the research question

The review addressed the following questions.

• What post-diagnostic supports are currently available for people with intellectual disability and dementia, nationally and internationally?

• What does the current research landscape of post-diagnostic dementia support services for people with intellectual disability look like, in terms of key areas of support under in vestigation?

Stage 2: Identifying relevant studies

An exploratory online search of five electronic databases (CINAHL, Medline, PsycAtricles, PsycInfo and Web of Science) was conducted during June and July 2021. This search identified articles, grey literature, preliminary studies, conference papers and reports related to the area of post-diagnostic dementia supports for people with intellectual disability. The search strategy may be found in the Appendix. The inclusion and exclusion criteria are presented in Table 1.

Table 1. Inclusion and exclusion criteria for the review.

Inclusion criteria	Exclusion criteria
People with an intellectual disability and a diagnosis of dementia, carers, family members, medical professionals or staff providing support to people	No formal diagnosis of dementia, or does not include people with an intellectual disability (or those that support them)
Full research papers reporting original research (qualitative or quantitative) investigating supports offered to people with an intellectual disability following a diagnosis of dementia.	Review articles
Articles written in English	Articles not written in English

Stage 3: Study selection

Duplicate studies from the different databases were excluded. The remaining studies were exported to Covidence, where study titles and abstracts were screened against the inclusion/exclusion criteria with reasons for exclusion identified and full texts obtained for included articles. Title and abstract screening, and full text screening, were performed by the same two independent reviewers. Any discrepancies were resolved by a third reviewer. A total of 42 studies met our inclusion criteria and were included in the review. A flow diagram of study selection is presented in Figure 1.

Figure 1. PRISMA flow diagram.

Source: Page et al. (2021).

Stage 4: Charting the data

Data extraction was performed independently by two reviewers, using the data extraction template which was developed by both reviewers on Covidence. This reduced bias and ensured reliability while charting the data. Any discrepancies with data extraction were resolved by consensus. The extracted data is presented under the following headings: Author(s), year, title, location, aim(s), study design, setting, sampling, participant characteristics, inclusion and exclusion criteria, methodology and results.

Stage 5: Collating, summarising and reporting results

Supplementary Tables 1 and 2 report the preliminary findings which includes key data from the included studies. Supplementary Table 1 summarises key information from studies employing qualitative or mixed methods methodology, while Supplementary Table 2 summarises relevant information from quantitative studies. Potential gaps in the existing literature on post-diagnostic dementia supports for people with intellectual disability were identified, as were areas for further research. The first author devised a narrative summary of the findings of the literature under key themes (see Results section), which were agreed with the research team.

Table 2. Quality assessment of qualitative and mixed methods publications.

Author	1. Clear statement of aims	2. Appropriate methodology	3. Appropriate design	4. Appropriate recruitment strategy	5. Appropriate data collection	6. Researcher/participants relationship considered	7. Ethical issues considered	8. Analysis sufficiently rigorous	9. Clear statement of findings	Overall assessment
Qualitative
Bevins et al. (2015)	Yes	Yes	Can’t tell	Can’t tell	Yes	Yes	No	Can’t tell	No	Moderate
Carling-Jenkins et al. (2012)	Yes	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Can’t tell	Moderate
Chapman et al. (2018)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
Cleary and Doody (2017)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
Coyle et al. (2014)	Yes	Yes	Yes	Yes	Yes	No	Can’t tell	Yes	Yes	Moderate
Forbat and Wilkinson (2008)	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Moderate
Furniss et al. (2012)	Yes	Yes	Yes	Yes	Yes	No	Yes	Can’t tell	Yes	High
Herron et al. (2020)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
Iacono et al. (2014)	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	High
Manji and Dunn (2010)	Yes	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Yes	High
McCarron, McCallion, Fahey-McCarthy, and Connaire (2010)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
McCarron, McCallion, et al. (2011)	Yes	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Yes	High
McLaughlin and Jones (2010)	Yes	Yes	Yes	Yes	Can’t tell	No	Yes	Yes	Yes	Moderate
Perera and Standen (2014)	Yes	Can’t tell	Yes	Yes	Yes	No	Can’t tell	Can’t tell	Can’t tell	Low
Schaap, Dijkstra, et al. (2018)	Yes	Can’t tell	Can’t tell	Yes	Yes	No	Yes	Yes	Yes	Moderate
Schaap, Fokkens, et al. (2018)	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	High
Sheth (2019)	Yes	Can’t tell	Yes	Yes	Yes	No	Yes	Can’t tell	Yes	Moderate
Watchman (2005)	Yes	Yes	Can’t tell	Yes	Yes	No	No	Can’t tell	Yes	Moderate
Mixed methods
Ali et al. (2022)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
Fahey-McCarthy et al. (2009)	Yes	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Yes	High
Hawkes et al. (2019)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Can’t tell	High
Janicki et al. (2005)	Yes	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Yes	High
Jaycock et al. (2006)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Can’t tell	Can’t tell	Moderate
Raj et al. (2020)	Yes	Yes	Yes	Yes	Can’t tell	Yes	Yes	Yes	Yes	High
Schaap et al. (2021)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High
Watchman et al. (2021)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	High

Stage 6: Consultation

The authors presented the findings of the review to an expert advisory panel, comprised of experts at a national and international level. The authors also prepared an accessible version of the scoping review methods and results. This was completed with a research assistant with intellectual disability, in order to ensure that this summary would be accessible.

Quality appraisal

As the identified research papers were most commonly either qualitative or mixed methods, we assessed the quality of these full research articles using the CASP instrument (Critical Appraisal Skills Programme, 2022). Using an approach similar to Vandemeulebroucke et al. (2018), two researchers independently assessed the full-text publications. The two researchers compared assessments after they had assessed five each until all research articles had been assessed (see Table 2).

Results

A total of 10,040 article titles and abstracts were screened, with 8,555 articles excluded as they did not meet the inclusion criteria. Then 1,485 full text articles were screened with 42 articles identified as meeting the inclusion criteria (see Figure 1). The 42 articles focussed on (1) the challenges associated with ageing in place for people with intellectual disability living with dementia, (2) interventions/therapies, (3) staff supports and training, (4) the role of family, (5) environmental supports and (6) end of life care. Greater detail on the studies included is provided in Supplementary Table 1 (which provides information on the qualitative/mixed methods studies) and Supplementary Table 2 (which provides information on the quantitative studies).

Ageing in place

Ageing in place involves keeping people within their communities, in familiar surroundings, and close to family, friends, and long-term care staff for as long as possible (e.g. Dixon, 2007), and is well supported as an optimal approach to post-diagnostic support (e.g. McCarron et al., 2014). Research findings indicate that many people with intellectual disability who develop dementia experience changes or disruption to their accommodation, moving from independent or group homes to larger/more congregated/institutional residential settings (e.g. generic nursing homes), or a different location within their existing service, due to the absence of community-based care responding to progression of the condition (Cleary & Doody, 2017; Manji & Dunn, 2010; Sheth, 2019; Watchman, 2008). This is unfortunate, given evidence that, for example, group homes can not only adhere to the principles of dementia care (Janicki et al., 2005) but can also provide conditions associated with better quality of life and, additionally, operate with lower staffing costs due to the non-utilization of medical staff (Chaput, 2003). Agencies can also adapt their existing services to provide dementia capable housing in the community (Janicki et al., 2003).

The negative implications associated with such disruption are evidenced by a lack of facilitation for ageing in place and a lack of consideration for the person’s wishes and interests (Cleary & Doody, 2017; Iacono et al., 2014). A retrospective study found that adults with Down syndrome experience more relocations than adults across the general populations, and are also more likely to receive end of life care in a nursing home (Patti et al., 2010). Effective ageing in place is reported to require appropriate environmental supports, as well as staff training embedded in person-centred dementia care (Cleary & Doody, 2017). A 5-year pilot programme provided collaborative support services for people with intellectual disability living with dementia (Dixon, 2007). The programme was structured around the ‘ageing in place’ model, and promoted independence and improvement of quality of life. As a result of the pilot programme, over 30% of participants showed improvements in activities of daily living, but there is no data on ageing in place (Dixon, 2007).

The research thus demonstrates that, despite evident benefits of post-diagnostic supports that support ageing in place, there are substantial challenges in realising this goal, and many people with intellectual disability and dementia will not experience ageing in place.

Interventions/therapies

Existing knowledge regarding the effectiveness and feasibility of interventions has been informed by reports from workers and practitioners as well as researchers (Dodd et al., 2015). Positive effects have previously been reported for cognitive stimulation therapy (in a mixed methods study by Ali et al., 2022), music therapy (in a qualitative study by Bevins et al., 2015), life stories (in case series by Crook et al., 2016) and dementia care mapping (in qualitative research by Finnamore & Lord, 2007; Jaycock et al., 2006; Schaap, Dijkstra, et al., 2018; Schaap, Fokkens, et al., 2018; and mixed methods research by Schaap et al., 2021).

Watchman et al. (2021) used individualised goal-setting theory to identify the effectiveness of psychosocial interventions in social care settings. This participatory action study also explored the use of photovoice methodology. Findings reported the overall effects of the interventions as 80% in cycle one and 81% in cycle two, which demonstrated a positive ‘in the moment’ effect. In cycle 1, 32% of goals were either met and 43% exceeded expectations. In cycle 2, 35% of goals were met and 37% exceeded expectations (Watchman et al., 2021). Furthermore, the adapted photovoice methodology facilitated a developing discourse around dementia (Watchman et al., 2021). Findings from a randomised controlled trial by De Vreese et al. (2012) reported that enrolment in a dementia-capable programme, which facilitated daily practice of residents’ residual skills and abilities, contributed to activity and skill maintenance.

When considering access to activities, people with Down syndrome identified choice, agency, and schedules and routines as important factors in supporting participation in paid employment, physical activity, leisure, music, home management, shopping, religious practices, community outings, and participation in holidays and celebrations with family and friends (Sheth, 2019).

In terms of guidance that can be used in informing the development of supports, the International Summit on Intellectual Disability and Dementia offered a seven key area working model of post-diagnostic support for intellectual disability settings: post-diagnostic counselling, psychological and medical surveillance, periodic reviews and adjustments to care plans, early identification of non-cognitive symptoms, review of care practices and supports, staff training and supports, as well as evaluation of quality of life for the individual (Dodd et al., 2018). The summit also identified dementia care mapping as an effective tool for evaluating quality of life and quality of care of people with intellectual disability and dementia.

Overall, there are many different interventions that can be employed with people with intellectual disability and dementia, and although these often require adaptation compared to general population approaches, such modifications need not always be extensive. There has been some initial RCT-based research in this area (Ali et al., 2022), although most research has employed qualitative or mixed-methods methodologies.

Staff supports and training

Research which explored outcomes for individuals with dementia and intellectual disability, largely tended to assess outcomes from the perspective of staff, rather than including the voice of the individual (see qualitative studies by Chapman et al., 2018; Cleary & Doody, 2017; Herron et al., 2020; Iacono et al., 2014; McLaughlin & Jones, 2010; Perera & Standen, 2014; and case series by Wilkinson et al., 2005). Indeed, a number of studies have been more focussed on staff/carer burden (McCallion, Nickle, et al., 2005; McCallion, McCarron, et al., 2005) and time spent caregiving (McCarron et al., 2002).

Staff training and supports to carers and staff, made available throughout specialist and mainstream services, are reported as central to ensuring appropriate care and support. However, qualitative findings indicate that carers and staff may not necessarily have access to specific education or training in the provision of appropriate care for individuals with a diagnosis of dementia and intellectual disability (Fahey-McCarthy et al., 2009; Herron et al., 2020).

Other findings confirm that it is critical that staff are educated on the different stages of dementia, and the outcomes to be achieved for the person (see qualitative research by Davies et al., 2002; Furniss et al., 2012; McKenzie et al., 2020). Sheth (2019) highlighted the importance of training that supports the development of skills in accessible communication, meaningful one-on-one interactions and adjusting to changing care needs. Lifshitz and Klein (2011) offered a case report on the use of Mediational Intervention for Sensitizing Caregivers, although they suggested more research is needed.

Herron et al. (2020) emphasized the importance of understanding dementia and intellectual disability in providing appropriate support to the person living with dementia as well as early identification of non-cognitive symptoms of dementia. Non-cognitive symptoms can include agitation, anxiety, disinhibition, as well as sleep and appetite changes, and increased awareness and understanding of these symptoms may enhance the quality of care provided to the individual (Dodd et al., 2018).

In summary, although the current research on staff supports and training indicates a need for specialist training on post-diagnostic dementia supports for people with intellectual disability, staff may not have such resources easily available to them, or perhaps may not know where to find such resources.

The role of the family

There are qualitative findings within the literature that there is a need to develop long-term services and supports as well as educational resources which accommodate family carers, including siblings (Coyle et al., 2014). A particular target in interventions is the reduction of caregiver burden (Perera & Standen, 2014); decreasing caregiver burden will not only benefit caregivers themselves but also contribute to increased quality of life among those receiving care. Perera and Standen outline ‘strategy toolboxes’ that carers use for reducing stress and supporting people with intellectual disability and dementia. Perera and Standen raise concerns that some family carers respond from a sense of obligation to become a carer, and their burden interacts with traditional, religious and cultural expectations.

A case series by Carling-Jenkins et al. (2012) reported that families experience stress and confusion as they negotiate care pathways and services. They reported that these pathways and services were poorly equipped to meet their needs, and that professionals were more focussed on longstanding disability than the recent diagnosis of Alzheimer’s disease. McCarron, McCallion, et al. (2011) reported qualitative findings that even though family members may have a limited relationship with the person living with dementia and may not necessarily understand their needs and wishes, they are still likely to be asked to make end of life and other decisions on behalf of the individual with dementia.

In summary, family members, like staff carers, require guidance or training in this specialist area of support. Family members may be particularly vulnerable to carer stress and burden, and any model of post-diagnostic support needs to address this.

Environmental supports

Clinical guidelines have indicated that an important consideration for people with dementia and intellectual disability is their safety from falls or injuries. Dementia inclusive design may result in decreases in falls and stress, and may lead to a reduction in the use of anti-psychotics and need for sedation (Jokinen et al., 2013). Other environmental supports identified included access to adaptive equipment, considerations for lighting, visual cues and auditory stimulation (Jokinen et al., 2013). Findings from Sheth (2019) identified physical accessibility as a specific challenge, especially as individual mobility needs change.

Hawkes et al. (2019) sought to identify areas of improvement regarding person-centred care, staff interactions, and the environment utilising the Person, Interaction and Environment (PIE) programme, which is a tool for enriching and strengthening person-centred care for teams who work with people living with dementia. Findings from their mixed-method study indicated that the PIE programme is an ongoing process and is a means of embedding an engagement-orientated culture of care in residential settings. In a cross-sectional study, Raj et al. (2020) identified the home environment and activities of daily living as areas frequently assessed by occupational therapists for people with intellectual disability living with dementia. Common interventions included compensatory strategies and environmental modifications. However, it was reported that this was less likely to occur for informal caregivers, for whom management of manual handling was more likely targeted.

The research on post-diagnostic environmental supports for people with intellectual disability and dementia has placed an emphasis on personal safety and avoiding falls. The person and their interaction with the environment has been considered, but approaches may differ between staff and family caregivers.

End-of-life/palliative care

Dementia is a life-limiting condition, and end-of-life and palliative care are an integral part of the overall picture of post-diagnostic dementia support. Issues surrounding increased relocation for people with intellectual disability and dementia throughout end-of-life and palliative care as well as the need for the individual to be more involved in planning for their own end of-life care were highlighted in the findings of a retrospective study (Patti et al., 2010) and qualitative research (Watchman, 2005). Key elements of end-of-life and palliative care identified included collaboration of specialist services and co-ordination of care, pain and symptom management, and supporting the person through death (McCarron, McCallion, et al., 2011).

A lack of equity of access for people with intellectual disability and advanced dementia to palliative and end-of-life care is a major concern (Tuffrey-Wijne et al., 2016), but is unlikely to be remedied without recognition of differing communication needs and alertness to signs of end of life/dying, support for family members, peers and carers, and including them in symptom management as well as education and training, and hospice care with a focus on comfort and quality of life (McCallion et al., 2017). A further area of concern is evidence from an audit study that found a lack of documented evidence for arrangement for the death of people with intellectual disability and dementia (Tromans et al., 2019).

In conclusion, ageing in place is likely to be more challenging during palliative and end-of-life care. Broader coordination between services and greater training and education are required to deliver a higher standard of post-diagnostic dementia support to people with intellectual disability up until death.

Quality assessment

The quality of the studies, as appraised using the CASP criteria, is summarised in Table 2. Quality was generally categorised as moderate to high. The criterion from the CASP which the most studies were not found to fulfil was a critical appraisal of the role of the researcher, and their relationship with the participant, in the research process.

Discussion

Post-diagnostic dementia supports incorporate many different elements, and are integral for maintaining the quality of life of people with intellectual disability and dementia. It is evident that any approach to providing post-diagnostic dementia supports for people with intellectual disability needs to be adaptable to both the stage of dementia and the changing needs of the person, including end-of-life care. It is particularly important that a wide range of interventions and approaches be utilised (Dodd et al., 2018). Although most of the studies identified in this review were either qualitative or mixed methods (see Supplementary Table 1), there have been some studies employing a more quantitative approach (see Supplementary Table 2).

Literature regarding the efficacy of interventions for people with intellectual disability and dementia is limited, and approaches adopted within the general population are typically similar to those adopted for people with intellectual disability. However, for people with intellectual disability, post-diagnostic supports provided are usually linked to existing service providers, with supports adapted to dementia-specific needs (Dodd et al., 2018). One such support, cited by Dodd et al. (2018), is post-diagnostic counselling, involving the provision of support and education for the individual, as well as carers, families or staff, which aims to provide the person and their carers with skills to deal with a dementia diagnosis, and to understand the implications of a diagnosis and the trajectory of the condition, in ways which promote the well-being of the individual. Nevertheless, most interventions noted are targeted at staff, while few interventions are reported for use either by families supporting individuals with intellectual disabilities and dementia, or by people with intellectual disabilities themselves, who are able and interested in being partners in their care.

There are many challenges associated with the delivery of person-centred dementia care, and person-centred approaches are not always accessible for people with intellectual disability as dementia presents and worsens (Cleary & Doody, 2017). Carers can feel unprepared to provide person-centred dementia support across the stages of dementia without dementia-specific training (McCarron, McCallion, Fahey-McCarthy, Connaire, & Dunn-Lane, 2010), often leading to reactive, rather than planned care (Iacono et al., 2014). Interventions consequently need to more comprehensively address all of the partners in care, and that may also include peers with intellectual disabilities.

It is well supported that ageing in place is optimal (Jokinen et al., 2013; McCarron et al., 2014); however, services and family homes are not always dementia capable and do not have the appropriate resources to prolong ageing in place of people with intellectual disability who are living with dementia (Dunne et al., 2014; Janicki, 2006). How ageing in place can be resourced and supported and the specific services and supports needed to ensure ageing in place both in services and in family situations needs further investigation (Jokinen et al., 2013; McCallion et al., 2017).

There were some potential limitations to this review. We did not complete a meta-analysis on previous data. However, the research was predominantly qualitative in nature, and the quantitative research was quite heterogenous in terms of outcomes and assessments. Family support was an important point arising in the literature, and including ‘family support’ as a specific search term would have been best, although family supports were captured in the articles identified in our literature search.

As people with intellectual disability age, with high risk of dementia at an earlier age for people with Down syndrome in particular, it is urgent that families, services and communities plan ahead for how to support those who will be living with dementia. The absence of agreed guidelines, demonstrated programmes and a willingness to resource supports must all be addressed. Future research in this area should do more to address implementation issues for post-diagnostic supports, and employ approaches such as more controlled trials to evaluate the efficacy of interventions. Using the same outcome measures more consistently across different trials will also help to further the progress of the field. Furthermore, although a number of articles did include participants with intellectual disability and dementia, this is something that should be explored in more depth in future work; it has been noted that delivering person-centred support requires that care staff have a good understanding of what it means for an individual with an intellectual disability to have dementia (e.g. Dodd et al., 2015).

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was made possible by funding from the Health Research Board of Ireland and the Alzheimer Society of Ireland, through the Health Research Charities Ireland – Health Research Board joint funding scheme (Grant number HRCI-HRB-2020-026).

Appendix

Search strategy

Concept 1: Disability

Medline: (MH "Intellectual Disability+") OR (MH "Learning Disabilities+") OR (MH "Disabled Persons+") OR (MH "Developmental Disabilities")

CINAHL: (MH "Intellectual Disability+") OR (MH "Attitude to Disability") OR (MH "Nurses, Disabled") OR (MH "Developmental Disabilities") OR (MH "Disability Management") OR (MH "Health Services for Persons with Disabilities") OR (MH "Severity of Disability")

PsycArticles: disability

PsycInfo: disability

Web of Science: No index terms in this database, searches run on title and topic

Keywords:

Medline or CINAHL: “intellectual disabilit*” OR “developmental disabilit*” OR “learning disabilit*” OR “disabled person*” OR “disabled patient*” OR “assessment disabilit*” OR “chronic disabilit*” OR “disability* assessment” OR “disabilit* evaluation” OR “disablement” OR “disablement evaluation” OR “evaluation disability*” OR “handicap”

Concept 2: Dementia

Medline: (MH "Dementia+") OR (MH "Frontotemporal Dementia+") OR (MH "Dementia, Vascular+") OR (MH "Dementia, Multi-Infarct") OR (MH "Alzheimer Disease") OR (MH "Amyotrophic Lateral Sclerosis") OR (MH "Lewy Body Disease") OR (MH "Prion Diseases+") OR (MH "Nootropic Agents")

CINAHL: (MH "Dementia+") OR (MH "Frontotemporal Dementia+") OR (MH "Dementia, Vascular+") OR (MH "Delirium, Dementia, Amnestic, Cognitive Disorders+") OR (MH "Dementia, Multi-Infarct") OR (MH "Lewy Body Disease") OR (MH "Dementia, Senile+") OR (MH "Dementia, Presenile+") OR (MH "Dementia Patients")

PsycArticles: dementia

PsycInfo: dementia

Web of Science: No index terms in this database, searches run on title and topic

Keywords:

Medline or CINAHL: “dementia” OR “Alzheimer*” OR “cognitive decline” OR “brain health” OR “amentia” OR “demention”

Concept 3: Support

Medline: (MH "Social Support+") OR (MH "Training Support") OR (MH "Financial Support+") OR (MH "Nutritional Support+") OR (MH "Psychosocial Support Systems") OR (MH "Decision Support Techniques+") OR (MH "Life Support Systems") OR (MH "Health Planning Support") OR (MH "Research Support as Topic") OR (MH "Life Support Care+")

CINAHL: (MH "Support, Psychosocial+") OR (MH "Nutritional Support Team") OR (MH "Home Nutritional Support") OR (MH "Decision Support Techniques+") OR (MH "Nutritional Support+") OR (MH "Training Support, Financial") OR (MH "Support Groups") OR (MH "Emotional Support (Saba CCC)") OR (MH "Coping Support (Saba CCC)")

PsycArticles: support

PsycInfo: support

Web of Science: No index terms in this database, searches run on title and topic

Keywords:

Medline or CINAHL: “support*” OR “post-diagnostic support*” OR “memory clinic” OR “therap*” OR “respite” OR “companion” OR “support” OR “support group*” OR “day program*” OR “mental health” OR “dementia practice coorindat*” OR “community” OR “planning” OR “dementia care” “cognitive stimulation” OR “environmental stimulation” OR “behavioral symptom*” OR “psychological symptom*”