The main signs of ageing in people with intellectual disability

Wark, Stuart; Hussain, Rafat; Edwards, Helen

doi:10.1111/ajr.12282

Cited by 14 publications

(14 citation statements)

References 15 publications

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“…This represents an important demographic challenge (Reppermund & Trollor, ) that has caught social and healthcare leaders off guard and needs to be immediately addressed. Due to this increase in life expectancy, people with intellectual disability are experiencing health problems associated with ageing and at an earlier age than people without intellectual disability (Haveman et al, ; Heller & Sorensen, ; Reppermund & Trollor, ; Wark, Haussain, & Edwards, ). Consequently, the concept of active ageing, which has garnered increased attention in gerontology, is taking hold in the field of intellectual and developmental disabilities (Schepens, Van Puyenbroec, & Maes, ).…”

Section: Introductionmentioning

confidence: 99%

“…In addition to the barriers to accessing health care, older adults with intellectual disability have difficulties participating in activities that promote healthy lifestyles, such as physical exercise and nutritional programmes (Bigby, ; Dixon‐Ibarra, Driver, Nery‐Hurwit, & VanVolkenburg, ), which is exacerbated for people living in rural areas (Wark et al, ). Likewise, older adults with intellectual disability are not given appropriate information about the changes and alterations that they may experience as they age, which constitutes a major barrier to both self‐determination and the development of effective primary prevention strategies (Hosking et al, ).…”

Section: Introductionmentioning

confidence: 99%

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Improving healthcare access for older adults with intellectual disability: What are the needs?

Navas

Llorente

García

et al. 2019

Research Intellect Disabil

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This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty‐nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open‐ended questions included in a general survey about the health status of older individuals with intellectual disability. Most informants were women and professionals who had known the person with intellectual disability for more than 12 months. A system of categories, which showed good inter‐rater agreement, was developed to analyse participants’ written responses. Both family members and professionals emphasized the need to improve disability training for healthcare practitioners and highlighted the urgent need for flexibility in the structure of a healthcare system that currently overlooks the specific needs of this vulnerable population.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Improving healthcare access for older adults with intellectual disability: What are the needs?

Navas

Llorente

García

et al. 2019

Research Intellect Disabil

View full text Add to dashboard Cite

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“…There is an increasing need for informal care-giving, which is partially related to the recognised ageing of the general population [ 2 ], but the provision of lifelong family-based care is now also commonplace in situations where individuals born with disabilities or chronic health problems are surviving childhood and living into chronological middle and old age [ 3 ]. Previous models of health and personal care for people with severe disability, which often focused on formal institutionalisation, have been increasingly replaced with community-based support options supplementing informal family care [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Hussain

Wark

Ryan

2018

IJERPH

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Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

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“…The focus groups also identified systemic issues within disability services that were considered impediments to accessing end‐of‐life support for residents. The need for more external funding is an obvious and recurring issue in almost all disability research (e.g., Wark, Hussain, & Edwards, ), but some focus group participants also noted concerns about the necessity to continually justify the need for more support to internal management. This was felt to be both time‐consuming and ultimately a waste of resources.…”

Section: Resultsmentioning

confidence: 99%

Challenges in providing end‐of‐life care for people with intellectual disability: Health services access

Wark

Hussain

Müller

et al. 2017

Research Intellect Disabil

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The main signs of ageing in people with intellectual disability

Abstract: When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care.

Cited by 14 publications

References 15 publications

Improving healthcare access for older adults with intellectual disability: What are the needs?

Improving healthcare access for older adults with intellectual disability: What are the needs?

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Challenges in providing end‐of‐life care for people with intellectual disability: Health services access

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