Understanding and experiencing ageing: the perspectives of older people with intellectual disabilities

Abstract

Background: This thesis contains two elements: the first is a systematic review examining some of the determinants of quality of life for people with intellectual disability. Understanding these determinants can drive improvement at both individual and societal level. Yet there are a number of quality of life measures which might confound findings between studies. This systematic review sought to identify factors that influence quality of life using self-report on one measure developed for use with people with intellectual disability, the ‘Quality of Life Questionnaire’ (Schalock & Keith 1993). The second element is an empirical study that aims to explore the lived experience of aging for older adults with intellectual disability. There are noted differences between people with and without disability as they grow older, for example in terms of health and social opportunity. Previous studies have not consistently sought the experience of the people with intellectual disability themselves, or have used participants not traditionally considered older adults. This study aims to address gaps and further our knowledge in the lived experience of getting older for older adults with intellectual disability. Method: Within the systematic review a systematic search of relevant studies to 20th January 2015 was completed using a specified inclusion criteria, yielding 13 peerreviewed journal articles. These were scored on 11-point purpose-designed quality criteria. For the empirical study semi-structured interviews were completed with ten participants with intellectual disability (age range 60 – 74 years, five female) regarding their understanding of getting older and their experience of ageing. Nine transcribed interviews were analysed using interpretative phenomenological analysis. Results: The systematic review found that living in a semi-independent environment or an urban setting, being employed, being involved in domestic and community activities, receiving social support and possessing social skills and self-determination were factors that improved quality of life for people with intellectual disability. Three major themes emerged from the empirical study data when participants discussed getting older: ‘Not changed by ageing’, ‘Thinking about the ageing process’ and ‘What happens when getting older’. Participants tended to feel that they were still the same due to continuation of the same activities and social support. They demonstrated confusion in the ageing process, considering the process ‘inevitable’ but insignificant, although also recognising some changes associated with the process. They discussed their views about what they considered happens when people get older, which tended to be stereotypical and often negative. However they also reflected on their own experiences and how they had changed. Discussion: The methodological quality of the studies reviewed was found to be generally low due to a range of factors including study design, measurement of intellectual disability and reporting of sample demographics and results and therefore conclusions should be treated with caution. This highlights a need for further research with people with intellectual disability of a higher methodological quality. The empirical study is discussed in reference to previous research and gerontological theories of ageing. The study highlighted that staff or family did not broadly discuss ageing with participants and their views often changed over the course of the interviews from more physical and negative aspects to how ageing impacted them. This research demonstrated older adults with intellectual disability do have opinions on ageing. Further exploration with people with intellectual disability on this topic is to be encouraged in the future to develop a more balanced view.