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“It’s not the same without you:” exploring the experience and perception of transition for people with intellectual disabilities and dementia
- Authors:
- SHETH Alisa Jordan, et al
- Journal article citation:
- British Journal of Learning Disabilities, 49(3), 2021, pp.365-372.
- Publisher:
- Wiley
1 Background: For people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. 2 Methodology: Three women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. 3 Findings: Participants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. 4 Conclusions: Peer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase. (Edited publisher abstract)
The crisis facing older people living with neurodiversity and their aging family carers: a social work perspective
- Authors:
- BROTMAN Shari, et al
- Journal article citation:
- Journal of Gerontological Social Work, 64(5), 2021, pp.547-556.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion. (Edited publisher abstract)
Perspectives of adults with intellectual disabilities and key individuals on community participation in inclusive settings: a Canadian exploratory study
- Authors:
- MILOT Elise, COUVRETTE Romane, GRANDISSON Marie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(1), 2021, pp.58-66.
- Publisher:
- Taylor and Francis
Background: This article aims to present the results of a study on the facilitators and obstacles to community participation in inclusive settings for people with intellectual disabilities (ID) in Québec City (Canada), as perceived by adults with ID and key individuals involved in their daily lives. Method: Semi-structured interviews were conducted, followed by an inductive thematic analysis process. Results: Twenty participants shared their perspectives on the factors that influence community participation of adults with ID in inclusive settings. Overall, they revolved around physical and financial accessibility, openness of the members of the groups attended, as well as the adaptations and support provided to promote the people’s active participation. Conclusions: Offering social support and interventions that truly help adults with ID create meaningful relationships is crucial. Training community members is also fundamental to creating environments where people with ID can feel that they belong. (Edited publisher abstract)
Going for GOLD! Growing Older with Learning Disabilities: briefing
- Author:
- AMBITION FOR AGEING
- Publisher:
- Ambition for Ageing
- Publication year:
- 2020
- Pagination:
- 4
- Place of publication:
- Manchester
This briefing is a summary of the findings of the Greater Manchester Growing Older with Learning Disabilities (GM GOLD). The project aimed to find out what older people with learning disabilities think about their local area, whether they feel part of their local community, what barriers exist to meaningful social contacts, interactions and activities, and their perspectives on growing older. It was an inclusive research project carried out by a team of 16 older people with learning disabilities (co-researchers) supported by ‘research buddies’. The team conducted interviews and focus groups with 59 older people with learning disabilities from eight Greater Manchester boroughs. Key learning set out in this briefing include: there is a need to promote ageing well for people with learning disabilities so they can understand what it is to age positively; people with learning disabilities need support throughout their lives to live healthy lifestyles to remain healthy longer; older people with learning disabilities need to be better supported to deal with the transition that often takes place when their parents die; important influences on what makes an area a good place for older people with learning disabilities to live are local amenities, the environment, transport links, local people and whether people feel safe where they live. (Edited publisher abstract)
Ageing carers and intellectual disability: a scoping review
- Authors:
- MAHON Aoife, et al
- Journal article citation:
- Quality in Ageing and Older Adults, 20(4), 2019, pp.162-178.
- Publisher:
- Emerald
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers. (Edited publisher abstract)
An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland
- Authors:
- EGAN Caroline, DALTON Caroline Teresa
- Journal article citation:
- British Journal of Learning Disabilities, 47(3), 2019, pp.188-194.
- Publisher:
- Wiley
Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants’ self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings. (Edited publisher abstract)
Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability
- Authors:
- WALKER Ruth, HUTCHINSON Claire
- Journal article citation:
- Ageing and Society, 39(7), 2019, pp.1512-1527.
- Publisher:
- Cambridge University Press
The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds. (Edited publisher abstract)
Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia
- Authors:
- JOKINEN Nancy, et al
- Journal article citation:
- Journal of Gerontological Social Work, 61(4), 2018, pp.411-431.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalise the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognises the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy. (Edited publisher abstract)
Training of residential social care staff to meet the needs of older people with intellectual disabilities who develop age-related health problems: an exploratory study
- Authors:
- NORTHWAY Ruth, JENKINS Robert, HOLLAND-HART Daniella
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(5), 2017, pp.911-921.
- Publisher:
- Wiley
Background: Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Methods: Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Findings: Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Conclusions: Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing. (Edited publisher abstract)
Aging together: caring relations in families of adults with intellectual disabilities
- Authors:
- BAUMBUSCH Jennifer, et al
- Journal article citation:
- Gerontologist, 57(2), 2017, pp.341-347.
- Publisher:
- Oxford University Press
Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of ageing families of community-dwelling adults with ID. Design and Methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of ageing concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach. Results: Three main themes emerged: (a) Recognizing the Changes of Ageing, (b) Strengthening Connections, and (c) Planning for the Future. Implications: Ageing concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID’ understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed. (Edited publisher abstract)