How do people with learning disabilities experience and make sense of the ageing process?

Abstract

Accessible summary We wanted to find out what getting older feels like for people with learning disabilities. We asked seven people with learning disabilities about getting older. Most of the people had noticed changes as they got older. Some felt sad or angry about it. Some worried about getting older. People said that it was important to have good friends and to do useful jobs. Some people did not know much about getting older. Some people wanted to look back over their lives to feel more settled. They might need help with this. Abstract Background: Not enough is currently known about how people with learning disabilities experience and understand the ageing process. This is particularly important as the population of older people with learning disabilities is growing due to increased life expectancy. This article draws on the first author's doctoral research study, which aimed to fill this gap in the literature by exploring how people with learning disabilities experience and make sense of the ageing process and old age. Materials and Methods: Seven people with learning disabilities aged 60 or more were interviewed, and their accounts were analysed using interpretative phenomenological analysis. This approach allows the participant's lived experience to be explored in detail. Participants' accounts were analysed individually, followed by a group analysis. This article presents the results of the group analysis, illustrated by quotes from individuals. Results: The master themes arising from the group analysis were as follows: quality of relationships is central to enjoyment of life, including subthemes on the importance of affection and companionship, distress at lack of closeness and anxiety about ability to satisfy others; powerlessness; needing a sense of purpose; and making sense of getting older, including subthemes on reactions to changes with age, life review and looking to the future. Conclusions: Clinical implications of the findings include the need for services to support older people with learning disabilities in maintaining friendships and meaningful activities. This study demonstrates that some older people with learning disabilities can engage in a process of life review and raises the possibility that learning disability services could play a useful role in facilitating this process. Understanding of the ageing process varied between participants and tended towards a negative, stereotypical view of ageing. The findings suggest that people with learning disabilities could benefit from psychoeducation on the ageing process to aid them in making sense of the changes they experience as they get older.

Is it possible to use interpretative phenomenological analysis in research with people who have intellectual disabilities?

“…Three further papers looked at the experience of diagnosis and disability (Dysch et al, ; Kenyon et al, ; Monteleone & Forrester Jones, ) and two at relationships (Rushbrooke et al, ; Sullivan et al, ). Other papers explored the experience of bereavement (McRitchie et al, ); ageing (Newberry et al, ); retirement from day centres (Judge et al, ); trauma (Mitchell et al, ); fire setting (Rose, Lees‐Warley, & Thrift, ); mental health (Robinson et al, ); ethnic minorities (Malik et al, ); self‐concept (Pestana, ); and identity (Dinwoodie et al, ).…”

“…Sixteen papers were rated as “acceptable” (Anslow, ; Brown & Beail, ; Dysch, Chung, & Fox, ; Gould & Dodd, ; Kenyon, Beail, & Jackson, ; MacMahon et al, ; Malik, Unwin, Larkin, Kroese, & Rose, ; McRitchie, McKenzie, Quayle, Harlin, & Neumann, ; Mitchell, Clegg, & Furniss, ; Monteleone & Forrester‐Jones, ; Newberry, Martin, & Robbins, ; Robinson, Escopri, Stenfert Kroese, & Rose, ; Rushbrooke, Murray, & Townsend, ; Shewan, McKenzie, Quayle, & Crawley, ; Sullivan et al, ; Wilson et al, ). All of these papers subscribed to the theoretical principles of IPA.…”

“…Other papers explored the experience of bereavement (McRitchie et al, 2014); ageing (Newberry et al, 2015); retirement from day centres (Judge et al, 2010); trauma (Mitchell et al, 2006); fire setting (Rose, Lees-Warley, & Thrift, 2016); mental health (Robinson et al, 2016); ethnic minorities (Malik et al, 2017); self-concept (Pestana, 2011);and identity (Dinwoodie et al, 2016).…”

The lived experiences of elderly dementia patients in Taiwan

“…Therefore, in the process of ageing, maintaining good relationships with surrounding friends and family members plays a vital part in an enjoyable life, and a strong emphasis on roles and autonomy is important factors contributing to pride and happiness (Newberry et al . ), and a high level of family involvement may have a positive impact on an ill family member (Park & Chesla ).…”

“…The respect for parents has supreme value in the Confucian tradition; if the child is filial, the performance of the parents will be considered good, and parents' self-worth is judged by how well they perform as parents (Park & Chesla 2007), which is why the participants expressed the view that they were very fortunate to be taken care of by their children. Therefore, in the process of ageing, maintaining good relationships with surrounding friends and family members plays a vital part in an enjoyable life, and a strong emphasis on roles and autonomy is important factors contributing to pride and happiness (Newberry et al 2015), and a high level of family involvement may have a positive impact on an ill family member (Park & Chesla 2007).…”