‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges

Finkelstein, Adi; Tenenbaum, Ariel; Bachner, Yaacov G.

doi:10.1017/s0144686x19000266

Cited by 5 publications

(12 citation statements)

References 47 publications

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“…Three studies reported that the use of ICT by adults with DS resulted in a significant increase in their well-being, which was associated with autonomy and an improvement in perceptions of self-determination in everyday life, e.g., daily tasks, contact with family and friends, using useful apps, phone calendar, social media and setting up reminders [ 64 , 73 , 85 ]. Thirteen studies showed that the freedom to have their own rules, to live independently, and move out of home without the influence of their parents were paramount and considered a symbol of adulthood to adults with DS [ 62 – 64 , 68 , 74 , 76 , 88 , 90 , 91 , 93 , 95 , 97 , 98 ]. Five studies reported that some adults with DS demonstrated their ability to live independently such as catching a bus [ 93 ], taking responsibility for personal hygiene, house cleaning, laundry, cooking, paying bills, budgeting, taking medication and using public transport [ 63 , 64 , 97 ] and making decisions [ 65 ].…”

Section: Resultsmentioning

confidence: 99%

“…Eight studies documented that regardless of the independence of adults with DS, some required support in going for walks, going to the cinema, staying healthy, seeing a doctor [ 63 , 98 ], emotional support [ 63 ], participation in extracurricular activities [ 95 ], personal care [ 74 , 100 ], handling money [ 88 , 100 ], respite care, using public transport [ 78 , 100 ] and want to continue living with parents [ 64 ]. In three studies, most adults with DS became more independent as they transitioned to adulthood and caregivers recognised the importance to their adults with DS QoL [ 91 , 96 , 98 ]; while one study documented that most mothers did not remember whether young adults with DS played an integral part of the transition process or were actively involved in decision making [ 78 ].…”

Section: Resultsmentioning

confidence: 99%

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Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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Background As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. Objective Using Schalock and Verdugo’s multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. Methods Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. Conclusion This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. International prospective register of systematic reviews registration number CRD42019140056.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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“…Sample sizes of included studies were all relatively small and two stud- (Bibby, 2013;Finkelstein et al, 2020;Knox & Bigby, 2007), while an increasing number live in their own accommodation (Larson et al, 2017;Scottish Consortium for Learning Disabilities, 2022).…”

Section: Limitationsmentioning

confidence: 99%

“…While this included some people in supported living, the studies mainly featured people in residential or group homes. Many people with intellectual disability live with family members into old age supported by siblings or ageing parents (Bibby, 2013 ; Finkelstein et al, 2020 ; Knox & Bigby, 2007 ), while an increasing number live in their own accommodation (Larson et al, 2017 ; Scottish Consortium for Learning Disabilities, 2022 ). Thus, the majority of included studies do not reflect the experiences of people with intellectual disability and dementia living alone or those supported by family members.…”

Section: Limitationsmentioning

confidence: 99%

Experiences of people with intellectual disability and dementia: A systematic review

Jacobs

Watchman

Wilkinson

et al. 2022

Research Intellect Disabil

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Background: Dementia disproportionately affects people with intellectual disability.Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia.Method: This systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, Psy-chInfo and Social Services Abstracts.Results: Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments. Conclusion:The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.

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“…Nevertheless, 'successful ageing' of people with intellectual disabilities in Israel is still far from being achieved (Nissim, 2018). For example, parents of people with Down syndrome claim that the ageing of their children caught them unprepared (Finkelstein et al, 2019). A recent and thorough literature review found that research on older people with intellectual disabilities in Israel is comparatively scarce, and that descriptive data collected and published by governmental agencies regarding this population are insufficient (Tolub & Doron, 2020).…”

Section: Introductionmentioning

confidence: 99%

Should inclusion have an expiry date? Older people's attitudes on intellectual disabilities

Ankori

Yaacovi

Carmeli

2022

Research Intellect Disabil

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Background Older people with intellectual disabilities represent a new and neglected population in need of services, yet it may be problematic to include them in generic services without having a clear idea of how elderly people from the general population feel towards them. To the best of our knowledge, this topic has not been addressed quantitatively. Method Seventy‐three participants over 63 years of age (23 females and 50 males) from the general population without an intellectual disability completed two valid measures: the CLAS‐MR and the WHOQOL‐OLD. Results Level of education and quality of life were positively associated with attitudes towards people with intellectual disabilities. Age was negatively associated with knowledge regarding intellectual disability. Conclusions When preparing for the inclusion of older people with intellectual disabilities in generic services, attention should be given to members' level of education, quality of life, and knowledge regarding intellectual disabilities. Sensitivity should be applied to potential tendencies to shelter people with intellectual disabilities.

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‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges

Cited by 5 publications

References 47 publications

Quality of life in adults with Down syndrome: A mixed methods systematic review

Quality of life in adults with Down syndrome: A mixed methods systematic review

Experiences of people with intellectual disability and dementia: A systematic review

Should inclusion have an expiry date? Older people's attitudes on intellectual disabilities

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