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Exploring coping strategies of carers looking after people with intellectual disabilities and dementia
- Authors:
- PERERA Bhathika D., STANDEN Penny J.
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(5), 2014, pp.292-301.
- Publisher:
- Emerald
Purpose: Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach: Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings: Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value: Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers. (Publisher abstract)
Impact of dementia upon residential care for individuals with Down Syndrome
- Authors:
- LLOYD Vicki, KALSY Sunny, GATHERER Amanda
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 5(1), 2008, pp.33-38.
- Publisher:
- Wiley
In this exploratory study, the authors examined the objective and subjective impact of dementia upon paraprofessional paid carers of individuals with Down syndrome working in residential settings. The study used the Caregiver Activities Scale -Intellectual Disabilities (CAS-ID), the Caregiver Difficulties Scale - Intellectual Disabilities (CDS-ID), and the Maslach Burnout Inventory (MBI). Responses given for these measures by paraprofessional carers of individuals with Down syndrome and dementia (n = 9) were compared with responses from those caring for recipients with Down syndrome and no additional cognitive decline (n = 11). No significant differences were found in the responses from these sets of carers on measures of objective (CAS-ID) or subjective burden (CDS-ID). However, the MBI revealed that carers of individuals with Down syndrome and dementia reported significantly increased levels of emotional exhaustion. Findings suggested that, while even when there is little difference in the level of caregiving tasks or the subjective difficulties of caregiving, the onset of dementia in individuals with Down syndrome resulted in increased emotional exhaustion for carers. Additional factors not considered within this study, such as challenging behaviour, may also be pertinent to carer burden.
A comparison of reports of caregiver burden between foster family care providers and staff caregivers in other settings: a pilot study
- Authors:
- MCCALLION Philip, NICKLE Tara, McCARRON Mary
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(3), August 2005, pp.401-412.
- Publisher:
- Sage
There has been increasing concern about the impact of dementia symptoms on the lives and on the care being provided for persons with intellectual disability (ID) in out-of-home settings. One such setting that has received little attention is foster family care homes. These settings in the USA replicate family living and while some supports and resources are provided, they are not designed to meet intensive care needs. As a preliminary step in understanding family experiences and to expand the range of interest in Alzheimer’s disease (AD) in persons with ID beyond traditional out-of-home settings, a pilot study was initiated that included aging persons with ID and symptoms of AD who were living in foster family care settings in two regions of New York State as well as more traditional out-of-home care subjects. Comparisons of matched samples on subjective and objective burden measures suggest that there are few differences in experiences. The limitations of these findings are considered and recommendations made for future, related research.
Psychological and other non-pharmacological interventions in services for people with learning disabilities and dementia
- Author:
- DODD Karen
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 4(1), March 2010, pp.28-36.
- Publisher:
- Emerald
This article describes the current research regarding people with learning disabilities who develop dementia. The author notes that current interest has largely focused on epidemiology, prevalence, assessment and diagnosis, and that there has been less focus on care issues and interventions. Currently, there is a lack of research material, but a growing number of books and resource packs are addressing these issues. The author suggests that psychological and non-pharmacological approaches are useful in services for people with learning disabilities and dementia, but must be delivered in line with a clear conceptual framework of dementia that aids staff in understanding what is happening to the person with dementia and the effect of their care and responses. This paper outlines the most commonly used approaches, including developing an understanding of dementia, anxiety and stress reduction, life story work, reminiscence, reality orientation and validation techniques, helping peers to understand dementia, other therapeutic approaches, and understanding behaviour and dementia care mapping and their impact on the well-being of people with learning disabilities and dementia and the people who support them.
Electronic tagging of people with dementia who wander
- Authors:
- HUGHES Julian C., LOUW Stephen J.
- Journal article citation:
- British Medical Journal, 19.10.02, 2002, pp.847-848.
- Publisher:
- British Medical Association
The problem of wandering in dementia is not trivial. It causes stress to carers, referrals to psychiatric services and hospital admissions, problems in the hospital environment, and an unknown number of deaths. The prevalence of wandering is over 40%, and in a five year prospective study 44% of wanderers with dementia were kept behind locked doors at some point. However decisions about limiting a person's liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier.