Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary

Ryan, Assumpta; Taggart, Laurence; Truesdale‐Kennedy, Maria; Slevin, Eamonn

doi:10.1111/opn.12021

Cited by 115 publications

(81 citation statements)

References 34 publications

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“…while in the other two groups it loaded on the third factor "Positive value". The aging family caregivers of adult daughter or son with intellectual disabilities may have poor emergency or future planning and lack of appropriate services (Ryan, Taggart, Truesdale-Kennedy, & Slevin, 2014). For example, respite services are more often an older people's residential facilities (Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012).…”

Section: Discussionmentioning

confidence: 99%

Reliability and validity of the COPE Index among caregivers of disabled people

Juntunen

Nikander

Törmäkangas

et al. 2017

Applied Nursing Research

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Aim: To study the reliability and validity of the Carers of Older People in Europe (COPE) Index among caregivers of disabled people of different ages.Methods: A cross-sectional design of Finnish caregivers (n=1 117). Exploratory factor analysis (EFA) was performed separately on samples of three different age groups, and the internal consistencies of the subscales were investigated.Results: Three factors were identified; Cronbach's alpha was .83-.86 for negative impact and .77-.78 for quality of support, indicating good internal consistency. The third factor, positive value, was less consistent across the age groups (α < .66).

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Section: Discussionmentioning

confidence: 99%

Reliability and validity of the COPE Index among caregivers of disabled people

Juntunen

Nikander

Törmäkangas

et al. 2017

Applied Nursing Research

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“…Research has shown that many parents and siblings feel anxiety about the long‐term care plans for their adult relative with IDD (Davys & Haigh, ; Davys, Mitchell, & Haigh, ; Freedman, Krauss, & Seltzer, ; Weeks, Nilsson, Bryanton, & Kozma, ). Previous research has found that caregivers in this group are likely to be socially and economically disadvantaged and at greater risk than most to develop serious health issues (Black & McKendrick, ; McConkey, ; Ryan et al, ). In another study, a survey of lone caregivers reported a wide array of health issues and high levels of anxiety relating to their caregiving responsibilities (Taggart, Truesdale‐Kennedy, Ryan, & McConkey, ).…”

Section: Introductionmentioning

confidence: 90%

“…These caregivers, who are typically ageing parents, take on the non‐normative role of caring for their children from birth and childhood all the way through adulthood. In some cases, that parenting role can span up to seven decades (Ryan, Taggart, Truesdale‐Kennedy, & Slevin, ). Research has shown that many parents and siblings feel anxiety about the long‐term care plans for their adult relative with IDD (Davys & Haigh, ; Davys, Mitchell, & Haigh, ; Freedman, Krauss, & Seltzer, ; Weeks, Nilsson, Bryanton, & Kozma, ).…”

Section: Introductionmentioning

confidence: 99%

Domains of planning for future long‐term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives

Lindahl

Stollon

et al. 2019

Research Intellect Disabil

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BackgroundResearch shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long‐term care planning.MethodsThe study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators.ResultsThemes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day‐to‐day care, medical management and transportation. Approaches to planning within each domain varied greatly.ConclusionsThe study team dentified the domain of “identification of primary caregiver(s)” as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.

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“…In another study carers have reported that they experience a range of health problems and that their caregiving role results in high levels of anxiety [37]. A recent review suggested there was going to be a 'new' population of older people with intellectual disability due to improved survival and there is an urgent need to develop services and support structures to assist these families [39] Some work has begun to identify alternatives for these often stressed and anxious families. One example is the proposal of a health home or a medical home for adults with intellectual disability [40].…”

Section: Family Levelmentioning

confidence: 99%

Transition to adulthood for young people with intellectual disability: the experiences of their families

Leonard

Foley

Pikora

et al. 2016

Eur Child Adolesc Psychiatry

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Whilst the transition from school to adult roles can be challenging for any adolescent, for those with an intellectual disability it can present as a particularly difficult time both for the individual and their family. The process may involve coordinated planning, collaboration and decision-making among school staff, families and community agencies. This mixed-methods study utilised information from two cohorts: young people with Down syndrome in Western Australia (n = 190) and young people with intellectual disability (of any cause) in Queensland, Australia (n = 150). The parent-report questionnaires administered in both states comprised two parts: part 1 collected information about the individual with intellectual disability including information on health, functioning and service needs, and about specific transition related issues; and part 2 collected information about the health and well-being of their family. The majority (87 %) of parents said that they were involved in decision-making about transition planning but less than two-thirds (59.5 %) of young people were involved in this process. The three most helpful strategies indicated by parents that assisted with transition planning related to the provision of more information about financial assistance, the school transition program and the building of informal community-based supports. A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood, their difficulty navigating services and programs, issues and challenges around their young person building connectedness, strain on family wellbeing and finances and worry about the longer term future.

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Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary

Abstract: Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.

Cited by 115 publications

References 34 publications

Reliability and validity of the COPE Index among caregivers of disabled people

Reliability and validity of the COPE Index among caregivers of disabled people

Domains of planning for future long‐term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives

Transition to adulthood for young people with intellectual disability: the experiences of their families

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