Understanding the Complexity of Loneliness

CHAPTER ONE 1.0 INTRODUCTION

According to Greenfield & Russell (2011), the experience of loneliness is subjective to each individual despite having common characteristics that can be measured at population level. Moreover, the concept of loneliness has a historical background that spans through various cultures and population strata including children and adults (Pearl & Dykstra, 2009). Nonetheless, according to Alma et al (2011), it is difficult to conduct an objective measurement of loneliness because sometimes, an individual can be lonely despite leaving among a community of people, yet on the other hand, an isolated person can feel contented. More importantly, Louise et al (2010) has found an association between loneliness and various physical illnesses such as high blood pressure. Researchers are increasingly gaining interest in the experiences of loneliness among older people namely: characteristics, consequences, and antecedents of loneliness in older people. However, it is important to note that loneliness is triggered by change (Golden et al, 2009), and this change may be as a result of a loss of a spouse, loss of health, loss of family members or loss of friends. Besides, according to Pearl & Dykstra (2009), loneliness can be influenced by the support given to people, their expectations of this support, and how these expectations are met. But Graneheim & Lundman (2010) write that people with a learning disability (LD) tend to have a unique support mechanism especially considering that they may not have children or spouses. Besides, such people tend to see their family and friends less often compared to the general population, and their reported levels of LD dictates their contact with family and friends. Greenfield & Russell (2011) asserts that people with LD find it difficult to integrate into the wider society especially because they are stigmatized and devalued based on their communication difficulties, poor self-regulation capabilities, and inadequate social skills. Consequently, people with LD tend to spend most of their lives in the presence of caregivers and service providers, thus the higher their disabilities levels are, the more restrictions are put to their lives by the caregivers.

1.1 Background of the Study

1.1.1 Intellectual disability and aging

The definition of learning disability/intellectual disability (ID) will be based on the definition used in the IDS-TILDA. Derived from the World Health Organization (1992), Mental retardation (herein known as intellectual disability) is defined as “a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period, which contribute to the overall level of intelligence, i.e. cognitive, language, motor, and social abilities” (World Health Organization, 1992, p.176). To date, there is no clear diagnosis of ID, and different domains have different characteristics that define their classification. However, for a definite diagnosis, the individual must have had a diminished level of intellectual capability and a reduced ability to adapt to the social environment’s daily demands (Iecovich et al, 2011). There are different definitions of aging for people with ID, some defining it as being 40 years or above while others define it as 50 years or above. According to Liu & Rook (2013), this difference could be because people with ID are characterized by early signs of aging compared to people from the wider community.

1.1.2 The Concept of Loneliness

Nyqvist et al (2013) defines loneliness as an experience personally encountered by individuals and is associated with cultural fabrics and forms of social organization. Known to people as part of human’s daily life conditions such as pain, thirst, and hunger, loneliness tends to be inconceivable for people who experience it, and is often difficult to describe in a manner that the non-lonely can understand. Furthermore, O’luanaigh & Lawlor (2008) remark that loneliness is often disguised and feared, so much so that it may go without being noticed. Nonetheless, it is often defined as the absence of social connection between an individual with a particular social group (e.g. family and friends), and lack of attempts to make such a connection. Worryingly, Schirmer & Michailakis (2016) indicates: loneliness among people with chronic loneliness can cause premature death, akin to smoking or obesity. However, Golden et al (2009) note that despite the deadly nature of loneliness, the medical profession has largely ignored it – even years of warnings. Existing research has established various impacts of loneliness on the victims’ social lives. For instance, according to Wormald (2018), a lonely individual becomes less trusting and less emphatic, yet, ironically, they feel the urge to reconnect. Nevertheless, according to Alma et al (2011), every individual carries the risk of loneliness, while sensitivity to it may be DNA dependent. In an evolutionary context, loneliness is an inherited system of warning, informing individuals of their inadequate social networks, exposing them to a dangerous land shorter life (Greenfield & Russell, 2011). Arguably though, there is no single standard of defining loneliness, thus different researchers use different definitions; including Victor et al (2005) who defined loneliness as a subjective lived experience that is characterized by various constructs of realities about one’s life histories; and Shiovitz-Ezras (2010) who defined loneliness as a personal concept and a feeling that emanates from lack of social relationships. However, there are common elements of these definitions that are worth noting: whereas there is an association between loneliness and isolation, the two concepts are separate, thus an individual can be lonely but not isolated (Iecovich et al, 2011). However, as stated earlier, loneliness is a subjective concept and this subjectivity occurs because the individual’s brain interprets the social aspects of life. On the other hand, isolation can be directly measured based on variables such as being a distance away from neighbours, the number of people in a household, or the frequency with which a person is involved in social activities. Contrastingly though, loneliness can be measured in terms of quality and quality of social relationships pone is involved in, although the quality measurement aspects are more common. Even so, Dykstra (2009) and Golden et al (2009) agree that people can be lonely while in marriages, while living around many people, in large households or while living in populated residential areas. Besides, according to Wormald (2018), loneliness tends to increase when one falls short of their desired number of networks and social contacts, or when their desired number of contacts surpasses ideal levels. Ultimately, Wormald (2018) argues that both isolation and loneliness can affect an individual’s health in different ways. But Wormald (2018) observes that loneliness is not only confused with isolation but also with depression. Whereas most depression scales include questions of loneliness, it is possible that people can be depressed without being lonely. Clearly, Alma et al (2011) define depression as a mood disorder that causes a feeling of loss of interest and sadness. Hence, whereas the feelings associated with depression are general, those associated with loneliness are more specific – manifested in the difference between desired and achieved social relations. Conversely, loneliness caused by social exclusion, ostracism, anxiety or bereavement may make an individual feel the urge to reconnect (Greenfield & Russell, 2011). This is in contrast with depression, which is not associated with an urge to reconnect. However, one point that is worth noting is that whereas depression and loneliness are closely linked, the fact that individuals with mental health issues tend to be lonelier marks a difference between loneliness and depression. That said, the latest and most relevant research indicating the difference between loneliness and depression is that of Victor et al (2008) who found that among the study participants, only 26% of those diagnosed with depression were lonely. Similar results were found in the longitudinal study by Cacioppo et al (2010) who found loneliness as a risk factor for depression.

There is a scarcity of research and statistics explicitly focusing on the prevalence of loneliness among older people with learning disability. However, consistent findings of various pieces of research on similar groups of populations indicate that people with intellectual disability generally have higher levels of loneliness. For example, Gilmore & Cuskelly (2014) found that compared to 15-30% of the general population, up to a half of those diagnosed with learning disabilities experience chronic loneliness.

1.1.3 Theoretical Framework

There are various theoretical frameworks within which the concept of loneliness among older adults with learning disabilities can be understood. According to Gilmore & Cuskelly (2014), understanding these theoretical frameworks is especially important due to the paucity of research on loneliness among the group of 75+ - considering that this group of the population may be difficult to access. Even if a researcher gains access to this group for qualitative data, it may be difficult to communicate with them due to attention and understanding deficits that characterize their age.

1.1.3.1 Social Cognitive Theory

Through cognitive triad, social cognitive theory can help in understanding how people can use environmental changes to counter the development and spiralling of loneliness. Basically, the social cognitive theory argues that events that occur in an individual’s environment are capable of separating an individual from their support group and these events may include the death of a loved one, shifting locations, of any form of ostracism (Greenfield & Russell, 2011). When the individual is separated, they begin to feel lonely, blame themselves for the loneliness and begin to perceive themselves as outsiders of any group around them. The feeling like an outsider triggers one to behave like an outsider by alienating themselves from the group of people around them (Greenfield & Russell, 2011). While basing their narrative on the social cognitive theory, Blossom & Apsche (2013) write that children diagnosed with behavioural problems react to loneliness that emerges from the various punishments they experience; and those punishments exclude the children from their environments and social groups. Consequently, children internalize this exclusion as though they are becoming deviant. According to Alma et al (2011), this feeling among children contributes to violent and aggressive behaviour as a form of reacting to the loneliness they experience. However, from the perspective of adult loneliness, the social cognitive theory was used to investigate loneliness among people living in an adult nursing home by Cohen-Mansfield & Parpura-Gill (2007). The study found that lack of financial resources, inadequate opportunities for social contacts; poor self-efficacy and poor mobility were some of the risk factors for loneliness. Similarly, the study found loneliness to be the predominant cause of depression – whereby depression caused by loneliness contributed to a loss of energy. Loss of energy leads to reduced social interaction and reduced social activity. Ultimately, reduced social activity leads to reduced self-efficacy and leading further to loneliness.

1.1.3.2 The social Needs Approach

The social needs approach holds that humans have an inherent need for intimacy and human relationship (Weiss, 1973). This theorization is supported by the interpersonal theory proposed by Sullivan’s (1953). Ideally, according to Evans (2005), the interpersonal theory defines loneliness as the feeling and experience of failing to achieve an intimate relationship. In this regard, Sullivan (1953) proposes that loneliness occurs as a result of changes in adolescence, changes which create a need for intimacy as a key determinant for emotional well-being during adolescence. When the individual denies this feeling, they develop more sense of loneliness, which then becomes an organizing force. However, to apply the social need approach to loneliness among 75+, Weiss (1973) argued that there are three proximity behaviours that characterize an individual’s survival. The first one is proximity to others, which give a sense of pleasure and well-being; the second one is the distance from others, which gives a sense of distress and discomfort, while the third one is the urge to be in constant contact with those known to an individual. Against this backdrop, the social need approach holds that when an individual does not have a set of relationship, is not in need of a relationship, or is not in a specific relationship, that individual is likely to become lonely. Hence, according to Weiss (1973), loneliness exists in the form of a set of syndromes that leaves one yearning for relationships. Consequently, the theorist defined two major syndromes related to loneliness namely loneliness of social isolation and loneliness of emotional isolation. On one hand, the loneliness that emanates from social isolation occurs in an adolescent who is in need to be part of a social group; and this explains why children who are separated from their peers feel bored. However, this type of loneliness increases gradually over time, and thus if an individual fails to make contact with their social group, they form a new social network and begin to feel the loneliness of social isolation even when they are within close proximity with others (Weiss, 1973). On the other hand, according to Weiss (1973) loneliness of emotional isolation emanates from proximity-promoting behaviours inherited by a child and is a composite of distress that is felt when one is loss contact with a primary contact figure. Individuals who experience this kind of loneliness tend to be pervasively apprehensive and this apprehensiveness is associated with deeper levels of loneliness. Against this background, the social needs approach enables the understanding that loneliness is not just as a result of solace but also about the inability to benefit from different types of relationships, and different kinds of loneliness syndromes are associated with different kinds of needs (Weiss, 1973).

1.1.4 Statement of the Problem

Notably, there has been a paucity of research ion loneliness among this population. However, the existing research indicates that the amount of loneliness experienced by such people is dependent on the amount of support they need and the perceived quality of social networks they have (Greenfield & Russell, 2011). Furthermore, according to Alma et al (2011), loneliness among people with LD is associated with the people they confide in as well as the appropriateness of their living arrangements. However, to the best knowledge of the researcher, there is a dearth of research on the experiences of loneliness among this population, particularly in regards to the psychological processes that lead to loneliness, and the strategies that can be used to treat loneliness among this population. Therefore, the main question addressed by this study is: what are the perceived experiences of loneliness among older people of 75+ with learning disability in the UK? The main aim of this study is to explore the perceived experiences of loneliness among people of age 75+ in the UK with learning disabilities.

1.1.5 Research Question

What are the perceived experiences of loneliness among older people are of age 65+ in the UK with learning disability?

1.2 Justification of the Study

Reports by Help Unite Generations (HUG) (2005) indicated that 36% of people aged 65+ years are unable to keep up with the faster pace of modern life, and 9% feel like they are cut off from the communities they belong to. These statistical indications raise the need for more inquiry into the issue of loneliness among older people with learning disabilities. It is with a proper understanding of their experiences of loneliness that policymakers will be able to develop effective and person-centred approaches and policies for addressing loneliness among this population. Persistent loneliness is not only an unpleasant experience but also a mental and physical health hazard that affects the quality of life of the older population. This study, while achieving its objectives, will be able to expound on the antecedents of loneliness among people of age 65+ with learning disability, in a manner that enables the creation of a model that explains how the social environment of people aged 65+ is influenced by various structural factors that contribute to loneliness among this population. Proper understanding of these structural factors, through the current research, will make a good contribution to policy and practice. Furthermore, the findings of this study, through its objectives, will enable the development of holistic models of understanding of loneliness through cognitive, social and emotional lenses. This will provide an opportunity for understanding some of the effective approaches to addressing the issue of loneliness among people aged 65+ with learning disabilities. Age UK (2010) has documented a growing prevalence of loneliness and social isolation among older people with learning disabilities in the UK, to an extent that efforts to prevent loneliness and isolation among this group of population had become a central focus of various central and local government funded programs and policies. The current study applies a sound theoretical framework to explore loneliness among older people of age 65+ years with learning. It conducts a comprehensive and in-depth look at loneliness among this group of population in a manner that influences the theoretical development and useful information for the development of policy and practice of service delivery for people with a learning disability.

CHAPTER TWO 2.0 RESEARCH METHODS

This chapter will describe the actual research methodology that was used in the current study to achieve the research objectives. The chapter will highlight the literature search process, the databases used as sources of literary materials, as well as the inclusion/exclusion criteria used in selecting the literary materials.

2.1 Secondary Research-The Narrative Literature Review Methodology

The narrative literature review is a secondary research methodology that entails the collection of data from secondary sources to answer a specific research question. So, it entails the use of information gathered by other researches through primary research. The current study intended to explore existing evidence on the experiences of loneliness among people of age 65+ with learning disabilities. Therefore, the researcher chose secondary research methodology to achieve this aim. The choice of secondary research for this study was based on certain theoretical underpinnings. For instance, according to Shojania et al (2007), secondary research relies on already existing data, and therefore the researcher is able to achieve their objectives within a relatively shorter time and at a relatively lower budget. Thus, time and resources were among the reasons why the researcher chose to conduct secondary research. Secondly, secondary research was chosen due to its capability to build on existing primary research by comparing various findings and evaluating the best research evidence that first the current research objectives (Bastian et al, 2010). Considering these reasons, the study chose secondary research methodology as the most appropriate. According to Cronin et al (2008), reviews provide a description of the current state-of-art by describing and synthesizing published literature. There are several approaches to secondary research including systematic literature review and narrative literature review. For purposes of developing concrete evidence on the experiences of loneliness among the elderly with learning disabilities, this study took the narrative literature review approach. Narrative review approach was chosen over the systematic literature review approach because the latter requires more time and space (due to more rigour) than the current study could offer. Fundamentally, the narrative literature review approach involves the use of explicit approaches in the evaluation and selection of literary materials for inclusion into the review. The following sections describe the selection procedure through which literary materials were chosen for review:

2.2 The Search Strategy

The study relied on a systematic search and selection of literary materials for inclusion into the review. Employing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), the researcher systematically gathered evidence that related to the current topic of study, analysed the validity and reliability of these pieces of evidence to ensure that evidence-based findings were analysed for comprehensive results. Hence, the search strategy began with a search of bibliographic sources so as to identify any publications on experiences of loneliness among the elderly aged 65+ with learning disabilities. The search was conducted in various electronic databases including COCHRANE, OVID, and PubMed. These databases were selected for their abundance in nursing research content.

2.3 Keywords

The researcher relied on several search terms to enable an easier and faster retrieval of literary materials. Some of the search terms used included: intellectual disability, social isolation, emotional isolation, and friendship. The researcher used Boolean operators ‘AND’ and ‘OR’ to help in combining the terms for an easier and faster search process (Cronin et al 2008). Besides, the Boolean operators were used to develop specificity and sensitivity into the search process, so as to retrieve literary materials within the scope of the topic. For instance, OR was used to broaden the search process by combining connected search terms, while AND was used to narrow the search process by combining dissimilar search terms.

2.4 Inclusion/exclusion Criteria

The search process was based on certain limitations to ensure that only the relevant literary materials were retrieved for the final review. The first limitation was that the studies had to be in the English language to enable an easier interpretation of the presented evidence. Next, the studies had to be retrievable in full text for a comprehensive evaluation of evidence. Lastly, only academic papers were included to enable the gathering of accurate evidence. All the literary materials that did not meet these criteria were excluded from the review.

2.5 Ethical Considerations

Being secondary research, the choice to use secondary data itself was an ethical consideration. This because by using secondary data, the researcher was capable of maximizing the value of the investment already made by authors of the primary research, thereby reducing the burden on the respondents while promoting the explicability of the research findings. Major ethical concerns in secondary research often revolve around the potential harm to subjects and the difficulties of gaining consent of sue from the original author. To address these challenges, the researcher we keen on any data with any identifying information on it, to ensure they are de-identified, or properly coded to conceal identify of the subjects. On cases where the researcher could not de-identify the information, a proper explanation was given to the ethics board on why this could not happen. For data that was freely available on the internet, online databases and books, the researcher relied on implied permission. However, the ownership of this data was acknowledged through proper citation.

CHAPTER THREE 3.0 RESULTS & DISCUSSION

This chapter will highlight the main findings of the literature review. The findings will be organized and presented thematically.

3.1 Experiences Loneliness

Generally in life, people are expected to develop friendships and interpersonal relationships, which contribute to assistance, companionships, self-esteem development, emotional well-being and general well-being of individuals (Emerson & Hatton, 2014). However, according to Van Asselt-Goverts et al. (2015), older people with learning disabilities are less capable of developing social networks and are more likely to have less close friends compared to those without such disabilities. Instead, according to Gilmore & Ciskelly (2014), their social networks may only comprise of their families or individuals with similar disabilities. Whereas caregivers and families do not qualify to be considered as ‘friendships’, Kamastra et al. (2015) argue that it is possible to discount these relationships as essential enablers of social inclusion. On that note, research by Van Asselt-Goverts et al. (2015) involved older adults (65+) with mild to severe learning disabilities and asked them about their social networks. The results showed that a majority of them were not satisfied with their social networks. Van Asselt et al. (2015) argues that 65+ adults who live with their families, or alone, may not access disability-related services, and this may contribute to further isolation, loneliness, and segregation. The Authors also argue that even though significant efforts have been made by various social care organizations to enhance the social inclusion of people with learning disabilities, there are several barriers of social inclusion faced by older adults with learning disabilities. However, despite the efforts to enhance the social inclusion of this population through a rights-based approach, the best way to promote their inclusion is through the development of and support for their social networks (Reinders, 2002). Several research studies (e.g., Gilmore & Cuskelly 2014, and McVilly et al. 2006) have reported that older people with learning disabilities tend to feel less lonely and more included when they develop intimate relationships with people of similar disabilities. Moreover, research evidence indicates that the perceptions held by this population about equality, as well as the experiences of being dominated by people without these disabilities act as some of the most prominent barriers to their social inclusion. Nonetheless, according to Van Asselt et al. (2015), other barriers to social inclusion include stigmatization, lack of self-esteem, as wells as mental health difficulties. Besides, living too far away from family and friends, poor support, illness, financial incapability, and travel barriers are mentioned by Emerson & Hatton (2014) as some of the most significant physical barriers to social inclusion among older people of 65+ with learning disabilities. Conversely, Hoza et al. (2000) argue that enablers of social inclusion include the provision of community support and environment for friendship development, enabling the older people with learning disabilities to occupy valued social roles, assisting them with social skill development and including them in meaningful social activities.

People with learning disabilities are more likely to suffer from loneliness than the general population (Gilmore et al., 2014). Apparently, while reviewing research evidence, the current study found various theoretical models upon which the risk factors for loneliness among older adults of age 65+ with learning disabilities could be understood. Moreover, the review enabled the identification of various vulnerabilities associated with emotional and social isolation. For instance, it emerged that the difficulties associated with measuring loneliness were some of the risk factors for loneliness among older people of age 65+ with learning disabilities (Weiss, 1982). According to Weiss (1982), there are various issues related to the measurement and conceptualization of loneliness among older adults with learning disabilities and these issues makes it more challenging to have a clear understanding and measurement of loneliness among this population. However, reviewed literature indicates that in measuring the concept of loneliness, two significant features can be referred to emotional isolation and social isolation (Hoza et al. 2000). According to Hoza et al. (2000), older people with learning disabilities who perceive themselves as not part of any social group may socially be isolated, while those who see themselves as though they are not experiencing any reciprocal intimate relationship may feel emotionally isolated. Gilemore et al. (2014) argue that while the number of friends one has, or the amount of time they spend with others, can be used to determine their social connectedness, it would be insufficient to measure loneliness using such constructs. Nevertheless, because emotional isolation may cause loneliness among individuals even in the presence of others, others may also not be lonely if they have a small social network. Hence, conceptualizing loneliness is a complicated affair because it relies on an individual’s self-reporting of their inner feeling. The conceptualization of loneliness may even be more complicated for older adults with learning disabilities because tend to be acquiescent, and thus may find it challenging to participate in qualitative studies with various data collection tools such as Likert-scales (Carlin et al. 2008; Hartley & MacLean 2006). This complexity has raised concern over the reliability of qualitative data collected through these tools. Consequently, some researchers have used other methods and tools such as semi-structured interviews (e.g., Watt et al. 2010), sentence completion questionnaires (Dykens et al. 2007), or pictorial scales (McVilly et al. 2006) to collect quality and reliable data from this group of population.

Elderly adults with learning disabilities are predisposed to loneliness as a result of various factors related to their disability status. For instance, Gilmore & Cuskelly (2014) identifies three domains of influencers that increase the vulnerability of disables older adults to loneliness namely: the characteristics of the learning disability, attributes of their social environment, and their experiences or lack of the experiences. With this regard, Gilmore & Cuskelly (2014) believe that the devaluation and stigmatization of people with learning disabilities are the most prominent factors predisposing older adults with learning disabilities to loneliness because they limit this population’s ability to experience emotional or social connection with others. Pettigrew & Tropp (2006) also insists that lack of social understanding, communication skills, self-regulation and other functional difficulties associated with learning disabilities may predispose this group of population to loneliness by limiting opportunities to socialize. Gilmore & Cuskelly (2014) compiled these factors and developed a graphical model to illustrate how they coordinate to increase intellectually disabled adults’ vulnerability to loneliness:

The model proposed by Gilmore & Cuskelly (2014), therefore, gives an explicit acknowledgment to the relationship between skill deficit, attitudes towards the population, inadequate opportunities, and negative experiences; as coordination of factors that expose this group of population to the vulnerability of loneliness. Moreover, from the model, a direct relationship between the attitudes and skill deficits is eminent. Some researchers have made similar observations of factors exposing elderly adults with learning disability to loneliness. For instance, with regards to the expectations and attitudes, Scior et al. (2013) argue that whereas the UK society had developed an inclusive culture in the recent past, learning disability remains a stigmatizing mental health condition. People with learning disabilities are still considerably held as specially challenged in the society, and there is a belief that they deserve isolated places such as hospices and care homes for the elderly (Scior 2011). While this segregation emanates from a negative attitude, it also feeds into a negative attitude. Ideally, if the society has limited time to interact with the elderly with learning disability at home or in regular community settings, social gatherings or in family gatherings, they are more likely to be seen as unpredictable and deviant, and this is likely to reinforce the negative attitude held by the society against them (Gilore & Cuskelly, 2014). These remarks corroborate with the findings of Pettigrew & Tropp (2006) who conducted a meta-analysis of 515 studies to demonstrate the value of constant social contact in reducing negative attitude. Moreover, in a study by Feyes & Saucier (2011), the researchers found that being in constant social contact with people with learning disability enables the development of a positive attitude towards them. Several studies have also explored the availability of opportunities, or lack of it, as a significant influencer of loneliness among older people with learning disabilities. For instance, Wolfensberger (2000) developed the social role volarization theory to provide a framework for understanding how lack of opportunities affect the participation and social inclusion of older adults with learning disabilities; and exposes them to the vulnerabilities of loneliness. Ideally, the theory proposes that older people with learning disabilities are likely to be segregated under home care or residential care; hence their experiences are more likely to fall within the spectrum of reduced opportunities to participate in societal activities or complete rejection. Furthermore, these settings reduce their social networks to people with similar disabilities and therefore inhibit them from experiencing other opportunities. On the same note, Guralnick (2006) notes that older people with learning disabilities may have difficulties of establishing and maintaining friends because they are often devalued, or because they tend to behave in a manner dissimilar to what the society expects.

It is unequivocal that older people with learning disabilities live in settings that impact on their abilities to develop social networks or participate in social activities. Jobling et al. (2000) insist that the elderly people with learning disabilities often only interact with ‘paid friends’ – who are their caregivers; thus they rarely have any meaningful interaction with other people in the community. Furthermore, because they may not have had been employed, or are retired, they may not have adequate resources to access recreational settings and create more social networks (Gilmore & Cuskelly, 2014). According to Jobling & Cuskelly (2002), even if they are financially capable, they may not have physical ability to travel to social venues, let alone having the autonomy to decide when or which social encounters to have. Older adults also experience various adverse life events that predispose them to loneliness. For example, Gilmore & Cuskelly (2014) presented evidence that: support organizations dealing with older adults with learning disability tend to have high staff turnover, therefore individuals under their care experience more personal loss when their ‘paid friends’ resign. Furthermore, according to Brickell & Munir (2008), individuals with learning disabilities tend to have more complicated grief than other populations. Consequently, they may develop more significant mental health issues, creating more barriers to the development of social relationships (Gilmore & Cuskelly, 2014). The experiences of loneliness among older people with a learning disability are also mediated by various characteristics of learning disabilities that are worth exploring. The ability of adults to be socially included an avoid loneliness is compromised by multiple characteristics of learning disability such as poor self-regulation, poor communication, inability to process social information, and poor perspective-taking. According to Jarvinen et al. (2013) and Cornish et al. (2005), some of the genetic syndromes manifest in the form of social phenotypes such as Williams syndrome or social withdrawal such as Fragile ‘X’. Whereas the difficulty in developing social relationships may originate from brain-based deficiencies, these inabilities are mostly canalised by other conditions of social environment such as rejection. Some older adults with learning disabilities find it challenging to regulate their behaviour or control aggressiveness (van et al. 2009). According to Bellanti & Bierman (2000), these inabilities increase their chances of being rejected by caregivers or family members. Fundamentally, the problem with behaviour regulation in people with learning disabilities develops from childhood (i.e., as evidenced by Paderson et al. 2007). However, Totsika & Hastings (2009) confirms that this problem is likely to continue through adulthood, with more effects that limit the abilities and opportunities of the adults to develop social skills – consequently causing loneliness. Evidence by Lundqvist (2013) and Koristas & Iacono (2012) suggest that an average of 60% of adults and older adults with learning disabilities have problems of behaviour regulation such as aggressiveness, while up to 20% have challenging issues such as inappropriate sexual behaviour and self-injury. These challenging behaviours limit their ability to develop social relationships and participate in community inclusion. Poppers et al. (2010) and Perry et al. (2013) also confirm that those having more severe learning disabilities such as older adults have a higher prevalence (80%) of challenging behaviours and are thus more segregated. In another study by Bryson et al. (2010), it was estimated that 20 to 30% of intellectually disabled adults with comorbidity of autism spectrum disorder have more social deficits, display more challenging behaviours and therefore experience more social exclusion.

According to Whiteman (1990), challenges with self-regulation may not only be associated with behaviour regulation, although perceived to be inherently part of learning disability. However, according to Margalit (2004), intellectually disabled persons are more likely to have practical self-regulatory skills, and may therefore not be able to initiate and sustain self-directed activities effectively. Consequently, according to Hieman (2000), they tend to be more engaged in passive activities such as sleeping and television watching, limiting their time and opportunity to participate in social engagements.

3.3 Strategies to treat Loneliness

Results from reviewed literature reveal that ‘loneliness’ and ‘social support’ exist as opposite notions (Anderson, 1998). Thus, we used the terms to help in the identification of potential strategies and solution for the problem of loneliness, or at least, literature that examined support work for lonely adults with LD. This search process used the full words themselves without using any truncations to yield the most relevant results. Results by Creswell et al (2012) indicated a significant reduction in loneliness among the participants who took part in the study. From the onset, the stud aimed to explore the impact of Mindfulness-Based Stress Reduction (MBSR) program and found that those who engaged in the programs had a statistically significant reduction (i.e. from 42.35 to 37.40) of loneliness among compared to the control group, although even the control group also displayed some slight increase (i.e. from 38.40 to 40.75) in loneliness (p=0.008). These results present MBSR as one of the effective strategies that can be used to address loneliness among this group of population. Ultimately, studies by Creswell et al (2012), which studied the effectiveness of MBSR in reducing loneliness among the elderly, Kahlbaugh et al (2011) who conducted a one-to-one Nintendo intervention, Banks et al (2008) who studies the effectiveness opens and Tsai & Tsai (2011) who studied the effectiveness of video conferencing; all reported positive results in terms of reducing loneliness among the elderly. Specifically, Kahlbaugh et al (2011) attempted to measure the effectiveness of playing Nintendo Wii in developing social relationships among participants of an average age of 82 years, comparing it to a control group who watched television. The study found significant improvement among the intervention group (i.e. those who played Nintendo Wii) (p < 0.05), while an increase in loneliness was observed among those who watched television.

In the study by Banks et al (2008), the researchers aimed to compare the effectiveness of either alive or robotic dog in treating loneliness among the old. Based on the principles of animal therapy, the researchers supplied 12 members of the intervention group with live dogs, while 13 members of the control group were supplied with robotic dogs. Ultimately, the researchers found a significant improvement in loneliness among both the control and the intervention group (p < 0.05), while they found no significant difference in loneliness among both the intervention and control group. Lastly, Tsai & Tsai et al (2011) attempted to investigate the effectiveness of video conferencing in enhancing social support among participants who were averagely at the age of 73. After having video conferencing sessions with the participants’ families, they found that video conferencing was significantly effective in improving loneliness among the participants. Interestingly, four of these studies involved the use of assistive technology to address loneliness among the elderly (i.e. web-based communication in Tsai & Tsai et al (2011) synthetic pet in Banks et al 2008, games console in Kahlbaugh et al 2011 or Tsai & Tsai et al 2011), and therefore they seem to support the future development of technological interventions. Besides, these studies seem to demystify the notion that this group of population is technology resistant. However, Lilja et al (2003) warned against the use of assistive technology at home to address loneliness among this group of population based on the reasoning that those who are lonelier tend to be more reluctant and need more personal support to use the new technological adaptations. Perhaps, these findings imply that introducing improved independent abilities removes fear and dependency on personal support. Contrastingly through, only those with a strong social network may show a positive response, maybe showing the urge to maintain an independent relationship with the network. The finding that a majority of the group work interventions in the reviewed studies did not work in reducing loneliness indicates is in contrast with the findings by Cattan et al (2005) that when an educational focus is integrated into group work, there is a higher likelihood that loneliness among this group of population will reduce compare to one-on-one interventions. However, this discrepancy in results can be attributable to the relatively short timescales in these interventions (6-12 weeks), especially considering assertions by Findlay (2003) that group interventions for loneliness among the elderly are likely to be more effective when they run for more than 5 months. Besides, Minkler et al (2006) attempted to address loneliness among an elderly group of participants and reported that a longer-term group intervention with more informal aspects is more effective because when they initially attempted to introduce self-empowerment intervention among this group, they received no significantly effective results, but when residents came together in a more informal setting, they were able to attain their original intention. These insights support the idea that this group of the population may be resistant or wary of a direct tackling of the topic of loneliness, perhaps due to its stigmatizing nature as suggested by Griffin (2010). In this regard, an earlier study by Anderson (1998) suggested that when introducing group interventions to address loneliness among the elderly, the goals should be indirectly set, i.e. they should not directly address loneliness but should aim to prevent loneliness while evolving to address other serious problems related to loneliness. Similarly, Hawkley et al (2007) also expressed their fear over gathering a group of lonely people together for any reason because it has a negative effect. Ultimately, one challenge that must be addressed by people introducing group interventions to loneliness among lonely people with a learning disability of age 65+ is that of the need to consider the impact of individual’s negative perceptions on the program’s effectiveness.

One study (Iecovich & Biderman, 2012) in this review evaluated the effectiveness of attending day centres in addressing loneliness among the elderly. Whereas the study did not find any significant difference in loneliness levels between those who attended the day centres and the control group, a greater insight into this intervention can be gained with a deeper look at the characteristics of those who attended the day centres. The study participants included day centre attendees, most of them being widowed and living alone. Indeed, these are variables that mostly characterize loneliness, and thus a significant finding by this study was perhaps the similarity in the cross-sectional loneliness scores between the two cohorts. Besides, the study’s finding among the intervention and control groups that those who perceived their health and economic status as poor were associated with higher scores of loneliness reveals financial support and healthcare as potential targets for social workers seeking to address loneliness and improve social participation among this population. In another study by Aday et al (2006), the researchers found that attending senior centers by older women who lived alone encouraged independence, with nearly 90% of the participants admitting to having made a few friends although the researchers were not specifically targeting to explore loneliness. However, it is important to note that whereas most participants in this study expressed their dissatisfaction with this service, the researchers concluded that the benefits gained by the participants outweighed the dissatisfactions.

CHAPTER FOUR 4.0 CONCLUSION & RECCOMENDATION

4.1 Conclusions

In conclusion, the main aim of this secondary research study was to explore the experiences of loneliness among the old age (65+) with learning disabilities. In the process, the researcher encountered two other major themes namely, risk factors for loneliness among this group of the population, and effective strategies for addressing loneliness. While we admit that there is a paucity of research on loneliness especially among the older age with learning disabilities, our search strategy yielded several previously done qualitative and quantitative research highlighting different aspects of the problem of loneliness among this group. The findings in regards to experiences of loneliness among this group of the population indicate that they experience different issues apart from learning disabilities that hinder their social participation and predispose them to loneliness. Even though a variety of research studies have explored loneliness and its impacts on the lives of general population, there is a dearth of research on loneliness among order adults with learning disabilities. Yet, researchers are likely to develop inaccurate results if evidence from the general population is generalized to this particular population, considering that older adults with learning disabilities may interpret, understand or experience loneliness differently. Nonetheless, it is clear from the reviewed evidence that people with learning disabilities are lonelier than the general population, and that elderly adults may have a relatively higher prevalence of loneliness due to the severity of their intellectual disability. Moreover, it is clear that the mental, physical and mental health issues associated with learning disabilities mediate the experiences of loneliness. However, there is a need for more sophisticated research focusing on the experience of loneliness among people with learning disabilities to enable the development of effective frameworks for fostering social participation and to prevent the negative health outcomes associated with chronic loneliness. This will provide an opportunity for older adults with learning disabilities to live better quality life – considering remarks by Wolfensberger (2000) that developing social relationships is one of the key aspects of well-being in people with learning disabilities. Lastly, in regards to strategies for addressing loneliness among this population, the study found several technology-based interventions that could treat loneliness. These interventions revolved around social support and included: Mindfulness-Based Stress Reduction (MBSR) program, web-based communication through video conferencing to build social support, pet therapy, and games console. Whereas evidence has shown that technological interventions are effective, we are also made aware that victims might be resistant to technology. Another significant piece of finding by this study is the role of group-based interventions and how such interventions can be applied to yield effective results. In summary, the study has found that when implementing group interventions, there is a need to be proper goal-setting and a consideration of the impact of an individual’s negative perceptions on the program’s effectiveness.

4.2 Recommendations

Loneliness among elderly adults with learning disabilities is a composite of various health and disability issues. This, solutions to loneliness should take a comprehensive approach by addressing these issues alongside loneliness.

Family and friends of this population should be involved when developing strategies for addressing loneliness because they lay a key role in the social participation of the victims.

This group of population experience worries over health complications, unpredictability of transportation as they attempt to participate socially. Health service providers as well as policy makers should consider these risks while developing policy and care services for this population.

The neighborhood and living environment of this group is an important predictor of loneliness among them. Social workers and caregivers should ensure that this group of population lives in friendly neighborhoods to enhance their social participation.

Policy developments should consider the transport and accessibility of areas where this group of population lives, so that they are able to easily move around to enhance their social participation

4.3 Limitations of the Study

This study aimed to explore the experiences of loneliness among the elderly (65+) with learning disabilities in the UK. However, this study did not find adequate literature focusing on the UK population. The findings were therefore not specific to the UK, but there was a considerable level of generalization of the findings to the UK context. Furthermore, the study was subjected to other limitations characterising secondary research methodology. For instance, the study made reference to studies dating as back as 2005, and this data may be not still be applicable in the current context. However, the researcher ensured that any piece of data was triangulated with latest research.

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