Transitioning to long-term care for older adults with intellectual disabilities: A concept analysis. — TEI-tagged view

Caroline EganpersName, Helen MulcahypersName, Corina NaughtonpersName (2021date). “Transitioning to long-term care for older adults with intellectual disabilities: A concept analysis..” Journal of Intellectual Disabilitiestitle·j.

Object of study — transitioning into long-term careterm·dom for older adults with intellectual disabilitiesterm·dom

Research question — what the attributes, antecedents and consequences of this transition are

Contribution — a working definition of the concept, with four defining attributes, antecedents and consequences

Full text — tagged

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Transitioningterm·key to long-term careterm·key for older adults with intellectual disabilitiesterm·dom: A concept analysisterm·key.

Abstract To undertake a concept analysisterm·key of transitioningterm·key to long-term careterm·key for older adults with intellectual disabilitiesterm·dom.

Individuals with an intellectual disabilityterm·dom are experiencing increased longevity which is associated with an increase in transitions in later life to long-term careterm·key. Their experience of later life transitions is likely to be different to the general older population.

Concept Analysisterm·key was undertaken using the Walker and Avant framework.

Eight studies met the inclusion criteria. Defining attributes are an older person with intellectual disabilityterm·dom; a planned relocationterm·dom to a long-term careterm·key facility; person-centred; and supported decision-makingterm·dom.

There is a dearth of empirical evidence and theorisation on this concept. Transitions of this nature have been inadequately informed by the perspective of the older person with an intellectual disabilityterm·dom, and future research and practice requires greater efforts to include their voice.

Introduction/background Within the sphere of intellectual disabilityterm·dom there is a plethora of research on ageing however, little of this addresses transitions in later life especially involving a change of residence. The focus of this paper is the concept of transitioningterm·key in later life, namely to a long-term care settingterm·dom from the perspective of older people with intellectual disabilities and their caregivers. These transitions are likely to have a significant emotional and physical impact on older people with intellectual disabilities, yet there is limited consideration of these experiences in policy or clinical practice. It is important to note that transitioningterm·key of older adults with intellectual disabilitiesterm·dom to long-term careterm·key facilities is only one paradigm, there is also the philosophy of ‘ageing in placeterm·dom’. This is defined as the ability of the individual to remain at home for as long as possible as an alternative to moving to an institutional setting ( Grimmer et al., 2015 ). Contemporary approaches within the field of intellectual disabilities also identify ‘ageing in placeterm·dom’ as central to their philosophy and service provision ( Bigby, 2008 ). This concept analysisterm·key addresses the alternative paradigm of transitioningterm·key to long-term care settingsterm·dom. Within this paper a long-term care settingterm·dom describes a full-time residential facility which provides a broad range of services including personal, medical or social care which supports a person with cognitive or functional limitations to self-care ( Zimmerman and Sloane, 2007 ). Furthermore, people with intellectual disabilities reside in a number of settings including their family home or residential facilities ( NIDD, 2017 ) which they regard as their home. This concept analysisterm·key will include all types of residences from which an older person with an intellectual disabilityterm·dom may transition to long-term careterm·key.

The concept of transitioningterm·key in later life is relatively new due to the increased life expectancy of older adults with intellectual disabilitiesterm·dom ( Dolan et al., 2019 ; WHO, 2000 ). Such longevity is the result of advances in both the social and health care experienced by people with intellectual disabilities over the last century ( WHO, 2000 ). Concurrently, increased life expectancy is often associated with a higher prevalence of chronic illness and disability. Several studies reported higher rates of ill-health, chronic conditions and multi-morbidities ( Cooper et al., 2015 ; McCarron et al., 2013 ), and higher prevalence of early onset dementia among older adults with Down syndrome ( Strydom et al., 2010 ). This is compounded by poor access to health and social care and health promotion services ( Williamson et al., 2017 ) which can accelerate transitions to long-term residential settings.

Similar to the general population, the biological ageing processes, deterioration in long-term conditions, as well as decline in functional and cognitive capability may necessitate transitioningterm·key to higher levels of support and care needs ( Bigby et al., 2011 ). This in turn can increase demands on the primary caregiver potentially triggering a transition process. Another significant issue that accelerates a transition for the person with an intellectual disabilityterm·dom is ageing family caregivers who may also experience deteriorating health and functional capability and are no longer in a position to provide the level of care required ( Dieckmann et al., 2019 ). This life-long caring role itself can contribute to the carers health and functional decline and is associated with increasing difficulties with care routines ( Grey et al., 2018 ).

Furthermore, the alignment of national policies with international policy and legislation may inadvertently lead to transitions to long-term careterm·key. The prioritisation of social inclusion and de-congregating from institutional settings reflects the principles of the United Nations Convention on the Rights of Persons with Disabilities ( UN, 2006 ). The Convention affirms the rights of people, regardless of age, through explicitly recognising their right to choose their place of residence, facilitated by a range of supports to ensure inclusion in their community. However, a paucity of resources to support ageing individuals with intellectual disabilities has resulted in reduced residential placements within traditional disability services and an over-reliance on family caregivers ( Brennan et al., 2017 ; McConkey et al., 2018 ). Similarly, the influence of frequently changing government policies and funding for access to alternative accommodation significantly impacted choices among family caregivers and older adults with intellectual disabilitiesterm·dom ( Trip et al., 2019 ). This may inadvertently lead to increasing numbers of older adults with intellectual disabilitiesterm·dom having no choice but to transition to long-term careterm·key facilities in the future.

Research has explored the experiences of older adults with intellectual disabilitiesterm·dom who reside in long-term careterm·key facilities designed for the general population ( Bigby et al., 2008 ; Thompson et al., 2004 ). Their findings identified that this population were significantly younger than other residents and indicators suggested they experienced a lower quality of life and social exclusion within these facilities. Within the Irish long-term careterm·key sector, there is no accurate data on the number of people with intellectual disabilities living in general long-term careterm·key facilities largely due to the absence of a formal diagnosis of intellectual disabilities or a lack of previous contact with disability or statutory services. However, data from Germany suggests that these facilities have become a significant residential placement for this population ( Dieckmann et al., 2019 ).

Any conceptualisation of transitioningterm·key requires acknowledgement of the seminal work of Meleis’ grand theory of transitioningterm·key which is described as ‘a passage from one fairly stable state to another fairly stable state, and it is a process which is triggered by change’ ( Meleis, 2010 : 11). Transitions are often precipitated by a significant event, resulting in a period of time of disequilibrium, that requires different actions or strategies such as the development of new skills, seeking supports, development of new relationships and finding meaning within the transition. A number of theoretical frameworks were developed based on Meleis’ theory by Schumacher et al. (Cited, Meleis, 2010 : 129) and Davies (2005) which conceptualised the experiences of older adults and their family caregivers among the general older population during transitions into long-term careterm·key. However, the experiences and responses of older adults with intellectual disabilitiesterm·dom relocating to long-term careterm·key are likely to be different to the general population, therefore, the author will undertake an analysis of this concept.

Rationale for undertaking a concept analysisterm·key Transitioningterm·key into a long-term care settingterm·dom has become a lived experience for many older adults with intellectual disabilitiesterm·dom ( Bigby et al., 2011 ; Dieckmann et al., 2019 ; Webber et al., 2014 ). Although the phenomenon has been explored, there is inadequate conceptual analysisterm·mth of the attributes, antecedents and consequences. The impetus for this project is to explore this phenomenon through analysing the concept of transition or relocation to a long-term careterm·key facility for older adults with intellectual disabilitiesterm·dom. It will operationally define the concept for future reviews and research projects and provides a way to identify and express key ideas about the concept and the essence of transitioning into long-term careterm·dom for an older person with intellectual disabilities. A concept analysisterm·key will delineate the professional’s perspective of this concept through identification of attributes of clinical practice which may facilitate a more positive experience of transitioningterm·key for the older person.

Aim of study To define, explore and clarify the concept of transitioning into long-term careterm·dom for an older person with an intellectual disabilityterm·dom. This was undertaken using the eight-step approach by Walker and Avant (2014) .

Concept analysisterm·key A conceptual framework using the Walker and Avant (2014) approach was adopted to guide analysis on transitions into long-term careterm·key facilities for older adults with intellectual disabilitiesterm·dom. This approach was selected as it details a framework which allows for a systematic analysis of the inherent attributes, antecedents and consequences of a concept. Furthermore, it facilitates the development of a working definition and identification of cases of the concept in real-life, so it appeals to a broad range of disciplines and individuals. The framework will map the relationship between ageing with an intellectual disabilityterm·dom and transitioningterm·key to long-term careterm·key. It will explore and construct a conceptual model based on the empirical evidence.

The stages of Walker and Avant (2014 : 166) include, Selecting a concept. Determining the aims or purposes of analysis. Identifying all uses of the concept that you can discover. Determining the defining attributes Identifying a model caseterm·mth Identifying borderline, related and contrary cases. Identifying antecedents and consequences. Defining the empirical referentsterm·mth Search strategy Walker and Avant (2014) details that analysis must be rigorous and precise. Therefore, all possible uses of the concept of transitions were explored. A systematic search was undertaken, the research question was based on the PICo mnemonic ( Stern et al., 2014 ). PICo with a lowercase ‘o’ can be useful when seeking to analyse human experiences or phenomena. The population of interest were older adults with intellectual disabilitiesterm·dom. The phenomenon of interest is transition or relocating to a long-term careterm·key facility, including that which predicted it, the consequences of transitioningterm·key, and contextual issues such as geographical or residential setting. Keywords relating to transitioningterm·key, long-term careterm·key and intellectual disabilities were combined (Online Supplemental Tables 1 and 2). The following electronic databases: CINAHL, Medline, Psych Info, (Embase) and Web of Science were searched. A Grey literature search was undertaken using Google Scholar to identify government and health department reports, intellectual disabilityterm·dom charity or stakeholder documents and evidence of relevant theses or dissertations. Finally, bidirectional citation searching was undertaken concurrently ( Hinde and Spackman, 2015 ).

Inclusion criteria were studies which: (1) explored actions or experiences of transitioning into long-term careterm·dom for an older person with an intellectual disabilityterm·dom and their caregivers (including family, paid carers); (2) contained definitions or discussed the concept of transitions within this context; (3) identified antecedents or consequences of transitioningterm·key to a long-term careterm·key facility; (4) detailed the physical, emotional or social effects of transitioningterm·key; (5) primary research studies and (6) literature published between the years 2000–2020.

The exclusion criteria were research which (1) explored transitioningterm·key to long-term careterm·key facilities for older adults within the general population; (2) related to life transitions for children and younger adults with intellectual disabilities; (3) explored ‘ageing in placeterm·dom’ as a strategy to support older adults or deinstitutionalisation to community settings; (4) examined placement of young people with intellectual disabilities in nursing home settings.

The searches were undertaken from September to November 2020. The first stage of the search identified 554 papers. Searches of references and grey literature identified five further papers which were included. Following review of abstracts and the removal of duplicates 36 studies were imported into Mendeley referencing system for full text review, from which 8 studies met the inclusion criteria. Two authors CE & HM independently screened the 36 studies and reached consensus on the final 8 included studies. The selected articles were in English and one German study was translated into English. The search is outlined in PRISMA flow chart (2009) ( Figure 1 ).

PRISMA 2009 flow diagram.

Uses of the concept Of the final eight studies, five were from Australia ( Bigby et al., 2011 ; Buys et al., 2012 ; Webber et al., 2010 , 2014 , 2016 ), two from America ( Janicki et al., 2002 ; Patti et al., 2010 ), and one from Germany ( Dieckmann et al., 2019 ). The study designs included four qualitative, three quantitative and one mixed-methods. The qualitative papers explored the perceptions of family and paid caregivers’ decisions around transitioningterm·key to long-term careterm·key facilities for older adults with intellectual disabilitiesterm·dom. The main themes centred on decision-making processes, factors leading to and reasons why a transition was imminent ( Bigby et al., 2011 ; Buys et al., 2012 ; Dieckmann et al., 2019 ; Webber et al., 2010 ). Two studies ( Dieckmann et al., 2019 ; Webber et al., 2014 ) analysed the experiences of older adults who had transitioned from the perspective of their caregivers, while Dieckmann et al. (2019) was the only study to include older adults with intellectual disabilitiesterm·dom through making reasonable adjustments including the use of simple language, picture cards and graphics to aid inclusion in interviews. Two studies adopted a quantitative design which measured paid caregivers’ experiences of providing supports to ageing individuals and their attitudes in relation to ageing in placeterm·dom or progression to long-term careterm·key facilities ( Janicki et al., 2002 ; Webber et al., 2016 ). The final study used a retrospective cohort approach to investigate associations between ageing with an intellectual disabilityterm·dom and relocation to a long-term careterm·key facility ( Patti et al., 2010 ).

Defining attributes The papers provided little theorisation on the concept itself however, with transitioningterm·key identified as a central concept. Bigby et al. (2011 : 779) defined the concept as the older adult with an intellectual disabilityterm·dom who ‘experiences age associated changes to health and functional capacity’…. The transitional point ‘at which decisions are made that a person can no longer be supported’ to age in place within their home and moves to a long-term care settingterm·dom.

Four defining attributes or characteristics repeatedly appear in the literature ( Table 1 ) An older person with an intellectual disabilityterm·dom. A planned relocationterm·dom to a long-term careterm·key facility more appropriate to their ageing needs. Person-centred. Supported decision-makingterm·dom.

Literature supporting the defining attributes.

The first defining attribute is the older adult with an intellectual disabilityterm·dom . An intellectual disabilityterm·dom is defined as a disability characterised by significant limitations in both intellectual functioning and adaptive behaviour, which covers many everyday social and practical skills originating before the age of 22 years ( American Association of Intellectual and Developmental Disabilities, 2010 ) or 18 years ( American Psychiatric Association, 2013 ). Clarity on what defines an older adult with an intellectual disabilityterm·dom is less obvious. Older adults with a mild intellectual disabilityterm·dom in western countries have a similar life expectancy as the general population ( WHO, 2000 ). However, people with specific syndromes, such as Down syndrome, profound intellectual disabilities or complex and multiple disabilities have a reduced life expectancy ( WHO, 2000 ). Premature ageingterm·dom is evident in some cohorts including cognitive and functional decline with high rates of geriatric conditions e.g. falls, immobility, incontinence evident from as early as 40 years ( Carfi et al., 2019 ; WHO, 2000 ). Additionally, premature ageingterm·dom is associated with high rates of frailty among those with intellectual disabilities ( McKensie et al., 2017 ). Consequently, ageing can occur well in advance of chronological age. Therefore, older adults with intellectual disabilitiesterm·dom will be defined as individuals over 40 years of age who present with health and functional decline associated with ageing processes.

The second attribute is A planned relocationterm·dom to a long-term careterm·key facility which is more appropriate to their ageing needs . A planned relocationterm·dom is a permanent move into a long-term careterm·key facility made with foresight and in a well-informed manner ( Dieckmann et al., 2019 ). A long-term careterm·key facility is described as a skilled nursing facility which provides a range of personal and health care with a focus on medical, nursing care, safety and support with activities of daily living (National Institute on Ageing, 2020 ). Needs are associated with ageing processes such as developing a chronic health condition or experiencing functional decline ( Bigby et al., 2011 ; Webber et al., 2014 , 2016 ).

Person-centred is the third attribute. The American Geriatric Society (2015) expert panel describes person-centred careterm·dom as the recognition and engagement with the person’s values and preferences, which are used to guide care. Person-centred careterm·dom is demonstrated through the establishment of a therapeutic relationship, sharing of power and responsibility, empowerment, trust, respect and communication ( Sharma et al., 2015 ). Furthermore, in the non-acute setting person-centred careterm·dom was conceptualised by Morgan and Yoder (2012) as synonymous with a respect for several ethical values including approaches that are holistic, individualised, respectful and empowering. The analysis, presented approaches which were person-centred. Therapeutic long-term relationships between the older person and their family or professional caregivers were a cornerstone of studies. Person-centred approaches were empowering, respectful and trusting. Furthermore, caregivers recognised that holistic, individualised care which considered the whole person was essential. Person-centred approaches encompassed advocacy, beneficence, autonomy and responsibility. Family caregivers voiced feelings of responsibility to advocate on behalf of their family member with an intellectual disabilityterm·dom ( Bigby et al., 2011 ; Webber et al., 2014 ). Equally, professionals aspired to do their best to advocate for the person with an intellectual disabilityterm·dom. Planning and actions came from altruistic concern and wanting to do one’s best for the person reflective of a person-centred philosophy.

The fourth attribute is supported decision-makingterm·dom which involves individual’s working together supporting the older person with an intellectual disabilityterm·dom to make informed choices from all available options. Transitioningterm·key decisions within the studies were made by family members or disability staff ( Bigby et al., 2011 ; Dieckmann et al., 2019 ; Janicki et al., 2002 ; Webber et al., 2010 , 2014 , 2016 ). Individuals with intellectual disabilities were included as participants in Dieckmann et al. (2019) study however, they did not experience themselves as decision-makers but rather submitted to the advice of others including disability staff and family caregivers. The UNCRPD (UN 2006) Article 12 requires signatory countries to move towards supported decision makingterm·dom approaches. Future approaches to transitional decisions must enable the individual to exercise their legal capacity to the greatest extent in transitional decisions according to their wishes. Furthermore, the convention further asserts that the processes are put in place to ensure that the person’s voice is evident ( UN, 2006 ). Such approaches may include shared decision-making or a representative agreement within a support network. Supported decision-makingterm·dom was advocated for to support self-determination of the older adult with an intellectual disabilityterm·dom and family involvement in transitions ( Bigby et al., 2011 ; Dieckmann et al., 2019 ; Webber et al., 2014 ).

Definition A definition is proposed based on the defining attributes and analysis of this concept namely, A supported decision involving an older person with an intellectual disabilityterm·dom is made to facilitate a planned relocationterm·dom to a long-term careterm·key facility which reflects a person-centred philosophy.

Antecedents The antecedents included health and functional decline as a result of ageing, staff knowledge and competencies, family caregiver issues, disability service inflexibility/inappropriate fit and organisational issues ( Table 2 ). Similar to the general population, older adults with intellectual disabilitiesterm·dom may develop health conditions or experience a decline in functional capacity precipitating a relocation to long-term careterm·key ( Bigby et al., 2011 ; Buys et al., 2012 ; Dieckmann et al., 2019 ; Janicki et al., 2002 ; Webber et al., 2010 , 2014 , 2016 ). Furthermore, people with congenital syndromes, such as Down syndrome, experienced accelerated ageing and were predisposed to relocating to a long-term careterm·key facility due to functional decline ( Patti et al., 2010 ). Several studies explored the impact of ageing processes on residential services which prompted a move to long-term careterm·key. Bigby et al. (2011) and Webber et al. (2016) reported that staff in group homes were ill-prepared to support the person with newly emerging health needs or functional decline. A lack of training and poor staff understanding was further compounded by organisational issues including insufficient fit and adaptation to the newly emerging needs of the older adult which made ‘ageing in placeterm·dom’ difficult ( Dieckmann et al., 2019 ; Webber et al., 2016 ). Further examples of inadequate staff support and skills included absence of 24-hour care, lack of qualified staff to support complex health interventions and inflexible day care services. This resulted in an overburdening of disability services which further impacted the lives of other group home residents ( Bigby et al., 2011 ; Webber et al., 2010 ). The philosophy of more experienced or managerial disability staff had a significant impact on whether the person should stay or move to a long-term care settingterm·dom ( Webber et al., 2010 ). Additionally, inflexible organisation funding rules precipitated a move ( Janicki et al., 2002 ). Indeed Webber et al. (2010) highlighted a lack of funding and staffing models to appropriately meet the ageing needs of this population within disability settings such as one-to-one care provision. Dieckmann et al. (2019) reported that family caregiver wellbeing was identified as another antecedent to relocating from the family home to long-term careterm·key namely, when the primary caregiver was no longer able to continue caring due to frailty or death of the primary caregiver.

Literature support for the antecedents.

Consequences The studies presented both positive and negative consequences of transitioningterm·key to long-term careterm·key facilities ( Table 3 ). Positive experiences were associated with overall improvements in the person’s health and wellbeing following relocation ( Webber et al., 2014 ). Family and disability services identified that positive experiences were influenced by satisfaction with how decisions were made ( Bigby et al., 2011 ). Responsiveness to the needs of the individual and their caregivers was positively received, indeed, families noted that placement in a facility near the family home was very important to maintain contact (Dieckmann et al., 2019). Planning which maintains social relationships and a sense of connection with former relationships was viewed positively; interestingly ‘group relocations’ was presented by both Bigby et al. (2011) and Dieckmann et al. (2019) as an option. A group moveterm·dom involves existing residential groups who are simultaneously ageing and experiencing both health and functional decline, relocating together to a long-term careterm·key facility. In the studies reviewed, positive experiences were associated with the perception that the older person with an intellectual disabilityterm·dom was happy, settled, connected to their former life and in the correct place to meet their needs.

Literature support for the consequences.

Negative experiences were reported by Bigby et al. (2011) , Dieckmann et al. (2019) and Webber et al. (2014) . Families reported a lack of involvement in the whole decision-making process, that decisions were hastily made, and they felt unprepared due to a lack of knowledge of the inherent rights of the person with an intellectual disabilityterm·dom ( Bigby et al., 2011 ). Dieckmann et al. (2019) reiterated this lack of involvement in decisions with participants noting an absence of neutral advice and alternative housing choices for ageing people with intellectual disabilities. Family members and support staff identified that social isolationterm·dom was experienced by older adults with intellectual disabilitiesterm·dom post-transition ( Webber et al., 2014 ). This was compounded by a lack of acceptance of people with intellectual disabilities among the other residents in long-term careterm·key. Staff observed that residents were often afraid or uncomfortable with residents with intellectual disabilities and avoided them ( Webber et al., 2014 ). Similarly, disability staff consistently voiced concern that long-term careterm·key staff did not understand the social needs of this population citing inappropriate staffing and activities programmes as well as disciplinary differences between staff in disability and long-term care settingsterm·dom ( Buys et al., 2012 ). Families reiterated concerns about the disconnection from past relationships, hobbies and the lack of interaction post transition to long-term careterm·key ( Webber et al., 2014 ).

The defining attributes, antecedents and consequences are presented in a conceptual framework ( Figure 2 ) Transitioningterm·key to aged care for older adults with intellectual disabilitiesterm·dom: A conceptual framework.

Case examples Model caseterm·mth The model caseterm·mth is a real-life example which includes all the defining characteristics. They are hypothetical but have been informed by the author’s nursing experiences supporting older adults with intellectual disabilityterm·dom.

John is a 60-year-old man with Down syndrome and a diagnosis of Alzheimer’s dementia. He previously resided in a disability group home which was staffed during the day with one person sleeping over at night. John frequently wandered at night and spent his days rummaging through his personal artefacts in his bedroom. When John was asked to attend his day service or go to bed at night, he became distressed and refused, causing stress to the other residents, sleepover staff and John. The supports offered by the disability service were failing to meet John’s functional decline and changing needs. John appeared unhappy and it was decided with John that supporting his relocation to an appropriate long-term careterm·key facility nearby may suit John better. A transition plan was created in collaboration with John, his sister, long-term careterm·key and disability staff. A planned relocationterm·dom over 3 months involved visiting the long-term careterm·key facility on a weekly basis enabling long-term careterm·key staff to meet and get to know John, his sister and group home staff. This ensured that long-term careterm·key staff become familiar with his individualised needs and supports. A social timetable was established so former residents could visit and maintain social contact with John thus maintaining a link with his past-life. John transitioned over a 3-month period and settled well into his new home. A health assessment identified several health deficits with interventions implemented. Presently, John continues to maintain friendships from his previous life and enjoys activities within the long-term careterm·key facility. The transition plan was evaluated by John who reported that he feels happy and is enjoying his new home.

The model caseterm·mth includes all the defining attributes. John, an older gentleman with an intellectual disabilityterm·dom, was experiencing both health and functional decline due to a diagnosis of dementia. A planned relocationterm·dom was created involving his relocation to an long-term careterm·key facility nearby. John, his sister and disability support staff created a person-centred transition plan. Supported decision-makingterm·dom through meaningful efforts were made to include John’s wishes and to maintain the connection with his previous life. The transition was responsive to John’s changing needs and demonstrated collaboration between parties.

Additional cases Borderline caseterm·mth Borderline casesterm·mth contain most of the defining attributes but are inconsistent with the present concept.

Mary is a 63-year-old lady with a moderate intellectual disabilityterm·dom who previously lived in a group home. Mary was diagnosed with Parkinson’s disease and had fallen several times. The group home vacated during the day with residents attending the day services. Mary was exhausted and verbalised that she would like to reduce the time she spent at the day service. There were no staff available to support Mary if she remained at home and Mary required ongoing support throughout the day. Her elderly parents and support services were anxious that Mary relocated to a nearby nursing home where she could be supported. Staff and her family recognised that talk of a relocation was upsetting Mary and created a transition plan without her involvement. Long-term careterm·key, disability staff and Mary’s family met and had a case conference. A planned relocationterm·dom involved Mary moving to long-term careterm·key was initiated, her keyworker was allocated 10 hours a week for 2 months to work as a personal assistant to ensure Marys’ social and psychological needs were supported during the relocation. This ensured that staff became familiar with her individual needs and supports. Provisions were made for Mary to continue to attend her day service for half day sessions if she so wishes following her move to long-term careterm·key.

This case example represents a borderline caseterm·mth. Mary, an older adult with an intellectual disabilityterm·dom, was experiencing both health and functional decline. A transition plan was created to facilitate a relocation to a long-term careterm·key facility nearby. The attribute of supported decision-makingterm·dom is inconsistent with the concept as Mary was not involved in the planning nor did it provide Mary with opportunities to self-determine. A person-centred transition plan was created with efforts to advocate for Mary and to maintain the connection with her previous life.

Related caseterm·mth Related casesterm·mth are instances of the concept which are related but do not contain all the attributes.

Deirdre is a 65-year-old lady with a mild level of intellectual disabilityterm·dom. She previously lived with her brother who suffered a stroke, he could no longer meet her needs and decided to relinquish care. There were no available residential beds within the local disability service which Deirdre attended therefore out of necessity Deirdre relocated directly into a long-term careterm·key facility near her brother’s home. Deirdre was nervous but settled very quickly into her new routine. Deirdre received a full health checkup and was commenced on a modified diet. She lost weight and reported she feels overall much better. Over time, Deirdre lost contact with her previous friends and interests.

This case does contain some of the attributes, but they differ when examined closely. Deirdre is an older adult with an intellectual disabilityterm·dom however, she was not experiencing health and functional decline associated with ageing processes. The relocation to a long-term careterm·key facility was not planned. The attribute of supported decision-makingterm·dom is inconsistent with the concept as Deirdre was not involved in the planning, the move was reactive and there was no time to support her involvement in decision making. A lack of choice and resources restrict available options therefore, a person-centred plan did not feature as central in this relocation.

Contrary case Is not an example of the concept Eddie is a 74-year-old man without an intellectual disabilityterm·dom, but with a diagnosis of dementia. His dementia had progressed quite rapidly and following a period of hospitalisation for an acute illness, it was decided that he would not return home and was relocated to long-term careterm·key facility. Eddie was saddened and became depressed, isolated himself refusing to leave his bed following the relocation.

This is an example of a contrary case and is clearly not an example of the concept. Eddie is not an older adult with an intellectual disabilityterm·dom, nor is the relocation planned. Eddie was discharged to the first available long-term careterm·key facility as there was no family at home to care for him. The relocation did not prioritise Eddie’s needs nor was it person-centred as the focus was on a timely discharge from acute care. There were no opportunities for Eddie to self-determine or his involvement in relocation decisions. Once Eddie was relocated there was an absence of attention to his social and psychological needs.

Defining the empirical referentsterm·mth The empirical referentsterm·mth are a way to measure and recognise the concept of transitioning into long-term careterm·dom for an older adult with an intellectual disabilityterm·dom in both practice and research. Exemplars of alder adults with intellectual disabilities and planned relocationterm·dom to long-term careterm·key facilities more appropriate to their needs, were represented in the demographic details of the referrent studies ( Bigby et al., 2011 ; Buys et al., 2012 ; Dieckmann et al., 2019 ; Janicki et al., 2002 ; Patti et al., 2010 ; Webber et al., 2010 , 2014 , 2016 ). Decision-making within the context of transitioningterm·key was measured using several methodologies. Three of the studies adopted qualitative approaches using grounded dimensional analysis ( Bigby et al., 2011 ; Webber et al., 2010 , 2014 ). This methodology involved approaches which explored complex phenomena, early interviews were exploratory, evolving over time to become focused. Theoretical sampling was undertaken to direct later interviews and subsequently develop theory on the decision-making processes and actions of transitioningterm·key older adults with intellectual disabilitiesterm·dom. Quantitative measurement of decision-making was described by Janicki et al. (2002) , this involved a postal survey of 54 group homes serving at least one older adult with an intellectual disabilityterm·dom who were experiencing health and functional decline due to dementia. The survey examined data related to decision-making namely, whether the older person would ‘age in place’ or progress to a specialised long-term careterm·key facility. One study ( Dieckmann et al., 2019 ) adopted a mixed-methods approach, quantitative telephone interviews and surveys were completed in 22 long-term careterm·key facilities which were home to older adults with intellectual disabilitiesterm·dom. This was further explored using qualitative interviews within three long-term careterm·key facilities. Data were collected on demographic information of older residents with intellectual disabilities, their reasons for relocating and their involvement in decision-making.

A person-centred approach was an observable phenomon evident in the included studies ( Bigby et al., 2011 ; Buys et al., 2012 ; Dieckmann et al., 2019 ; Webber et al., 2010 , 2014 ). This attribute was not directly measured in the included studies but was thematically extracted during this concept analysisterm·key.

Health and functional decline as an antecedent to a planned relocationterm·dom to a long-term careterm·key facility was explored by Webber et al. (2016) who undertook an online survey of 76 group home care staff, examining their training and confidence in meeting the health needs of older adults and attitudes towards relocating adults with intellectual disabilities to long-term careterm·key. Other qualitative approaches involved semi-structured interviews (Buys et al., 2012), which reported on the attribute of a planned relocationterm·dom to a long-term care settingterm·dom due to health and functional decline of an older adult with an intellectual disabilityterm·dom.

Discussion The present analysis addresses the concept of transitioningterm·key for older adults with intellectual disabilitiesterm·dom to a long-term care settingterm·dom from the perspective of caregivers rather than the older person themselves. From the included papers the defining attributes are, an older person with intellectual disabilityterm·dom, a planned relocationterm·dom to a long-term careterm·key facility more appropriate to their ageing needs, person-centred approaches to identify wishes and preferences and supported decision-makingterm·dom. To date the concept has received little attention leading to a dearth of empirical evidence and theorisation. A significant gap in the literature when defining the concept is the absence of the voice of older people with intellectual disabilityterm·dom.

Transitions among older adults with intellectual disabilitiesterm·dom was explored by Strnadová (2019) who presents types of transitions in later life involving relationships, residential, work, retirement, and health. As far as the author is aware, this is the only concept analysisterm·key to address residential transitions in later life experienced by individuals with intellectual disabilities.

Supported decision-makingterm·dom was identified as a defining attribute which involves individual’s working together supporting the older person with an intellectual disabilityterm·dom to make informed choices from all available options. However, the evidence suggested a lack of self-determination on the part of the older adult with an intellectual disabilityterm·dom ( Bigby et al., 2011 ; Dieckamnn et al., 2019 ; Webber et al., 2014 ). Critically, decisions did not involve the older person in a meaningful or acceptable way. Therefore, the concept is not adequately informed by the views of the people most centrally involved in the experience. Future research should include people with intellectual disabilities not only as participants, but also as collaborators and co-researchers. Researchers should link with advocacy groups to ensure accessible information in the form of interviews and ethical considerations to ensure meaningful inclusion using sensitive approaches ( Herron et al., 2015 ), as the views of those most impacted by these transitions are paramount. There is a need to develop creative and inclusive methodologies to include older adults with intellectual disabilitiesterm·dom in research which addresses their rights and creates a platform for their voices to be heard in a non-tokenistic way ( Salmon et al., 2018 ).

Several of the studies noted the different care philosophies and competencies between long-term careterm·key and disability staff ( Webber et al., 2010 , 2014 ). Greater collaboration between long-term careterm·key and disability services may facilitate decisions-making processes and shared learning. Such integrated approaches could potentially champion supportive decision-making which may improve the experiences of all those involved and assist in the implementation of holistic person-centred transitioningterm·key plans. Heller (2019) and Trip et al. (2019) advocated for greater collaboration between long-term careterm·key and disability services whereby the expertise of both can enhance the quality of care including bridging ageing and intellectual disabilityterm·dom in research, policy and practice.

A person-centred approach to care was identified as a defining attribute. This was characterised by approaches which empower, respect and involve the person in relocation decisions. However, the included studies presented findings which presumed that the older person lacked capacity and thus precluded the person in relocation planning or choices. This raises concerns regarding how we involve people with intellectual disabilities in such transitional processes. Transition planning or actions should reflect the human rights of this population ( UN, 2006 ) therefore, researchers and disability services have an important role to ensure that the voice of people with intellectual disabilities is evident throughout the processes and findings. Older adults with intellectual disabilitiesterm·dom would also benefit from regular and accessible education to ensure health literacy, life skills and that people with intellectual disabilities are aware of their rights, which may facilitate choice and access ( Trip et al., 2019 ). Furthermore, internationally, countries are recognising and passing laws to legalise frameworks which recognise the person’s right regardless of disability to make such decisions ( UN, 2006 ). In Ireland, legislation was updated through the Assisted Decision-Making (Capacity) Act ( Government of Ireland, 2015 ). This law integrates the human rights approaches of self-determination, choice and consent placing an onus on society and health and social services to facilitate a person’s ability to make their own decisions about their lives including decisions in respect to transitioningterm·key in later life. Such transitions can benefit from inclusion of independent advocates and integrating individual-level reasonable adjustments ( Heslop et al., 2019 ) to ensure the older adult with an intellectual disabilityterm·dom is included and can participate to the fullest extent possible in decisions.

Facilitating ‘ageing in placeterm·dom’ for individuals with intellectual disabilities is central to many services and policy ( Bigby, 2008 ). However, the studies included in this analysis, demonstrated that service providers and staff experience difficulties in responding to the needs of the older person with an intellectual disabilityterm·dom within existing residential settings ( Bigby et al., 2011 ; Webber et al., 2010 , 2016 ). In the short term, It is evident that there will continue to be a need for transitions and thus the need to identify best practice on how to support those who are or will relocate to a long-term care settingterm·dom in the future. Furthermore, a clear lack of guidance, planning and education was evident from direct care staff to organisational decision makers ( Bigby et al., 2011 ; Webber et al., 2010 ). Subsequently disability staff were ill-equipped to meet the newly emerging needs of this population which influenced decisions to move residents to a long-term careterm·key facility. Decisions were made with staff citing a duty of care or recognition that the current setting was ill equipped to meet their progressive care needs. However, there was uncertainty as to what indicators or triggers signalled when a transition was imminent. There is a need for evidence-based policy and guidelines at organisation, governmental and professional level to inform these decisions. This is in-keeping with professional caregiver’s experiences of caring for older adults with intellectual disabilitiesterm·dom, the need for effective planning and integrated care was highlighted by Doody et al. (2012) . Such approaches may enhance responsiveness and person-centred careterm·dom.

Transition to long-term careterm·key was not always associated with negative experiences, none the less, the majority of studies tended to dwell on the negative consequences ( Dieckmann et al., 2019 ; Webber et al., 2014 ). Social isolationterm·dom as a negative consequence of relocating to a long-term care settingterm·dom was identified by family members and support staff ( Webber et al., 2014 ). This was compounded by a lack of acceptance of people with intellectual disabilities by the other residents in long-term careterm·key. These findings are in-keeping with data from a large national representative sample of people with disabilities, Emerson et al. (2020) reported higher levels of loneliness and social isolationterm·dom among people with intellectual disabilities compared to their non-disabled peers. Non-specialist long-term careterm·key facilities make well intentioned efforts to include the older person with an intellectual disabilityterm·dom as part of the care home community but a lack of adequate understanding of the their unique needs may result in limited success ( Webber et al., 2014 ). There is an onus on professionals and services to develop social inclusion strategies as part of a transition plan for older people with intellectual disabilities. Approaches should explore strategies to maintain past relationships, hobbies and interests. Indeed, Webber et al. (2014) advocated for the development of expertise in working with people with intellectual disabilities in long-term careterm·key facilities. Concurrently, educational institutions and disability services could develop expertise and services to facilitate person-centred transitional care for older adults with intellectual disabilitiesterm·dom.

Implications for practice A deeper understanding of the transitional process associated with relocating to a long-term care settingsterm·dom may improve the experiences of caregivers and the older adult with an intellectual disabilityterm·dom, during this stressful life event. Future research and practice development need to prioritise the development of strategies to promote self-determination and supported decision-makingterm·dom relating to relocation decisions. The analysis has identified elements of a person-centred transition that could be used as a guide to practice. Furthermore, long-term careterm·key facilities may learn from contemporary approaches to reduce social isolationterm·dom including buddy services or the development of structured social groups involving the person with an intellectual disabilityterm·dom ( Wilson et al., 2016 ) and flexibility in attending or visiting day services or previous residences. In the short term, we need to develop evidence based organisational and professional policies, guidelines and staff competencies to support a person-centred relocation model. In the longer term, intellectual disabilityterm·dom services need to examine pathways to ‘age in place’ to facilitate choice and preferences of older people with intellectual disabilities and families. Consideration of these practices need to be addressed on a case-by-case basis reflective of a person-centred philosophy.

Conclusion This paper operationally defines the concept for future reviews and research projects through providing a definition, identifying key ideas and findings from the evidence base while delineating the concept of transitioning into long-term careterm·dom for an older person with an intellectual disabilityterm·dom. Future research involving older adults with intellectual disabilitiesterm·dom, and integration of this into the concept, will facilitate a more rounded concept.

Older people with intellectual disabilities are and will increasingly transition to some category of long-term care settingterm·dom in the future. This concept of transitioningterm·key was analysed from the limited literature on the topic. Critically the concept analysisterm·key findings do not reflect contemporary approaches including person-centredness or the ethical standards which we accept as human rights for all people. We as a society including individuals with intellectual disabilities, their family caregivers, disability staff and services, researchers and academics must do better to reflect the voice of those most impacted by these transitions.

Future research involving older adults with intellectual disabilitiesterm·dom, their wishes and experiences relating to transitions is required to inform this concept. Evidence based practice and policies based on principles of inclusion, self-determination, shared and supported decision-makingterm·dom in line with mental capacity legislation is essential. Intellectual disabilityterm·dom services also require standardised and evidence based pathways appropriately resourced to enable person-centred transitions to improve experiences and quality of life of older people with intellectual disabilities.

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Supplemental Material, sj-docx-1-jld-10.1177_17446295211041839 for Transitioningterm·key to long-term careterm·key for older adults with intellectual disabilitiesterm·dom: A concept analysisterm·key by Caroline EganpersName, Helen MulcahypersName and Corina NaughtonpersName in Journal of Intellectual Disabilities