Lived experiences of ageing and later life in older people with intellectual disabilities

Abstract

The aim of this article is to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. The article is based on a study with a phenomenological approach, grounded on the concept of life-world. Individual, qualitative interviews were conducted with  people with ID (five men, seven women), between the ages of  and  (mean = ), who lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and sub-themes. The findings of the study reveal the informants' lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes, 'age as a process of change' and 'existential aspects of ageing', each with three sub-themes. The body is an essential element in their experience of ageing and growing old, and in how this experience is expressed. The study also found social, cultural and historical dimensions of the lifeworld to be important in the informants' experience of ageing and later life. This supports understanding of the existence of a collective life-world for older people with ID, the unique experiences the informants share because of their disability and its consequences for their lifecourse.

Choice and control for people ageing with intellectual disability in group homes

“…We therefore argue that discussions on occupational justice (36-37) for older people with ID need to be influenced by a life course perspective (see for example [54][55]59). This study, and others (22,38), could inform such a discussion. The life course perspective regards ageing as a dynamic process brought about by an interaction between individual, social and historical factors over time (59).…”

“…The perspectives of group home staff included in this study are, however, also important when exploring participation in this group. In an earlier study, group home residents ageing with ID accredited staff with increased importance as they and other residents became older (38). Additionally, staff perspectives, such as working methods, ambitions and values, have been shown to be important for what staff actually do (66) and thus for residents' wellbeing (13).…”

“…This makes semi-private spaces an interesting context to study, particularly in relation to the older residents' individual and collective choice and control. They are especially interesting since older people with ID tend to spend more of their time at home, and in these semi-private spaces (21)(22)38). With this background, the aim of this study is to explore how choice and control in the everyday life of people ageing with ID is expressed and performed in the group home´s semi-private spaces.…”

Points de vue d’aînés présentant une déficience intellectuelle sur leur participation sociale : une recension des écrits

“…Encore aujourd'hui, le vieillissement est perçu comme une étape de vie étroitement liée à la maladie, au sentiment de dépendance envers les autres et à la mort dans les sociétés occidentales. Bien que les PADI ne soient pas imperméables à une telle représentation, des participants à deux études (Dew, Llewellyn et Gorman, 2006;Kâhlin, Kjellberg, Nord et Hagberg, 2015) conçoivent l'avancée en âge comme une étape de vie favorable à la découverte de nouveaux intérêts et à la mise à profit de compétences acquises tout au long de leur vie. À ce sujet, plusieurs PADI ont mentionné n'avoir jamais eu autant d'occasions de réaliser des activités (p.ex., loisirs, engagement communautaire).…”

Using Healthcare Services: Perspectives of Community‐Dwelling Aging Adults With Intellectual Disabilities and Family Members

“…Thompson () reported that individuals may worry about continued support from FMs and access to services, but were not concerned with aging per se, which is similar to the findings of Jenkins (). In a study about the experience of aging among older adults with ID living in group accommodations, Kahlin, Kjellberg, Nord, and Hagberg () found that participants noticed changes in their physical and functional abilities, yet did not necessarily self‐identify as old. Because participants lived in a group setting, they did not express concerns about accessing services.…”