Andrew Wormald writes that moving older people with an intellectual disability away from congregated settings into dispersed community living can contribute to their loneliness.
Understanding contributors to Loneliness in older people with an intellectual disability?
After spending a lifetime living in closed institutions older people with an intellectual disability are now being moved away from congregated settings into dispersed community living. For many this is indeed a very positive move, however concerns have also been raised about potential unintended negative impact on health and mortality at least for some (Kozma, Mansa & Beadle-Brown), 2009) Like immigrants in a new country some will reap the rewards and some will struggle to adjust. According to the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) around 50% of respondents experienced some degree of loneliness and 15% reported that they felt lonely most of the time.
Interestingly, more of the participants who are community based reported experiencing loneliness than those living in traditional congregated settings. This is not a criticism of community placement which has many other benefits but a highlighting of a concern that needs to be further addressed. The need to better address this concern was further highlighted during the consultation process with people with ID themselves in preparation for this study, when they requested that questions on loneliness be included and the determinants of loneliness be examined within IDS-TILDA (McCarron et al., 2011).
Loneliness is a painful and confidence sapping reality that leaves people with feelings of helplessness and hopelessness. If it persists, it can cause both physical and psychological harm and can be as dangerous to a person’s health as smoking (Cacioppo and Patrick 2008). Whilst there is a growing body of evidence about loneliness and its effects in the general older population, very little is known about the experience of loneliness in old age for people with an intellectual disability and nothing is known about the effects of loneliness on physical health for this group. Information has started to be disseminated by the IDS-TILDA team and a picture of difference is beginning to emerge. The loneliness experienced by people with an intellectual disability, as compared to the general Population, has different causes and different health effects. Differences start with the structures of life. In the general population the key contributors to loneliness are gender, living alone, marital status, age, education, income and employment status (Barry et al. 2009, Cleary 2011, Timonen Kamiya, and Maty 2011). IDS-TILDA and other data suggest that the picture is different for people with intellectual disability. For example, in a recent article McGlinchey et al. (2013) found that loneliness in the younger cohort of IDS-TILDA participants (40-65 years old) was not predicted by employment status, gender or age. Evidence in other studies suggests that for older people with an intellectual disability, predisposing factors are more likely to be poor community acceptance, restricted friendships, living arrangements, and support needs (Balandin, Berg and Waller 2006, McVilley et al. 2006, Stancliffe et al. 2010). However, precipitating events—those that cause disruption to a person’s way of life—are similar in nature (Victor et al. 2008).
Like the general population, adverse impacts on the quality of a person’s social network contribute to loneliness and specific contributing events include changes to services (both day services and residential), changes to health, death of friends or betrayal by friends (Bigby 2004, McVilley et al. 2006, The Money, Friends and Making Ends Meet Research Group 2012).
Once a person experiences loneliness, the effects on the health and wellbeing of the person can be quite devastating. Understanding impacts on health is further complicated because changes in health can be an additional cause for loneliness, further contributing to poorer health and loneliness and combining to create a downward spiralling effect on a person’s wellbeing.
To date there has been little research into the effects of loneliness on health and wellbeing for people with an intellectual disability, and with lifestyles and health issues so divergent from the generic population drawing conclusions from the generic population literature is challenging. However, Hawkley and Cacioppo (2007) have created a pathways model of loneliness (Fig 1) that may be useful and which categorises the effects of loneliness into five pathways that can either increase or decrease a person’s physiological resilience. From the evidence they have amassed, they concluded that loneliness has a depressing effect on physiological resilience. Their evidence argues that lonely people have worse diets, do less vigorous physical exercise, are more likely to be obese and are more likely to smoke and drink larger quantities of alcohol. Lonely people are subject to more stressful life events and they perceive these events as more stressful than do non-lonely people. The lonely are less likely to have someone to confide in and are therefore more prone to make social mistakes. Lonely individuals have more marital strife, more social problems and more disputes with neighbours. Loneliness is associated with constriction of the arteries, leading to higher blood pressure, and lonely individuals have higher levels of the stress hormone epinephrine. Lonely individuals are also more likely to have a diagnosis of depression. Finally, lonely individuals are less likely to achieve adequate rest and recuperation, as they report lower quality of sleep with more disturbances, shorter sleeping hours and they are more likely to dose during the day.
There has been little investigation of the value of Hawkley and Cacioppo’s model for people with an intellectual disability. However, a finding that case level depression was more common in participants who reported experiencing loneliness (17%) than in those who did not report feelings of loneliness (6%) (McCarron et al. 2011) suggests further consideration may be useful. There have also been few other findings regarding the health effects of loneliness for people with an intellectual disability.
Further analysis of the IDS-TILDA data set may help illuminate how loneliness, acting through the 5 health pathways, is linked to both poor health outcomes and even premature deaths for people with an intellectual disability, particularly for those living in the community.