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Professional carers’ experiences of caring for individuals with intellectual disability and dementia: a review of the literature
- Authors:
- CLEARY Josephine, DOODY Owen
- Journal article citation:
- Journal of Intellectual Disabilities, 21(1), 2017, pp.68-86.
- Publisher:
- Sage
- Place of publication:
- London
The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers’ experiences of caring for individuals with intellectual disability and dementia. Seven electronic databases were searched using Boolean operators and truncation to identify relevant literature. Search results were combined and narrowed to articles relevant to staff working with individuals with intellectual disability and dementia, and 14 articles met the criteria for review. Themes outlined in the review include staff knowledge of dementia, staff training in dementia, caregiving, challenging behaviour, pain management, mealtime support and coping strategies. Overall carers must review and adjust their care delivery and support to people with intellectual disability and dementia, not only in terms of identifying and responding to their health needs but also through collaborative team working within and across services. (Edited publisher abstract)
"Forgetting familiar faces": staff perceptions of dementia in people with intellectual disabilities
- Authors:
- RYAN Christian, MacHALE Rosemary, HICKEY Emma
- Journal article citation:
- British Journal of Learning Disabilities, 46(3), 2018, pp.155-162.
- Publisher:
- Wiley
Background: Living with dementia is challenging, but poses unique difficulties for people with an intellectual disability. The process of dementia is also challenging for family, carers and friends. Materials and Methods: This study explores the impact of dementia on direct care staff using a focus group methodology. Thematic analysis was used to investigate the staff narratives. Results: Four key themes that emerged were as follows: (a) the difficulty of recognising symptoms of dementia in people with intellectual disabilities, (b) the process of diagnosis, (c) the challenge of dementia for the person, (d) the emotional impact of dementia for other people. Conclusion: The themes identify a number of important potential targets for supporting staff and peers in this challenging area of work. (Publisher abstract)
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)
Support workers' knowledge about dementia: a vignette study
- Authors:
- HERRON Daniel L., PRIEST Helena M.
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(1), 2013, pp.27-39.
- Publisher:
- Emerald
Because of the relationships they build, support workers can play a vital role in recognising and attending to the mental health needs of service users with intellectual disabilities. However, many lack the knowledge, skills and confidence to identify and respond appropriately. This paper focuses on the mental health of older people with intellectual disabilities. Fourteen support workers, working in one UK county, completed a questionnaire in which three vignettes presented progressively worsening indicators of dementia in an older person with intellectual disabilities. Participants explained what they thought was happening and what action they would take. Few of the participants had any mental health training, and only one in relation to older people. They were generally poor at judging early and intermediate indicators of dementia, sometimes attributing these to changes in routine or difficulty in communicating needs. The support workers were able to identify more overt later signs but believed these advanced indicators to be the onset of dementia. Proposed action was however appropriate, for example observation and referral. Abuse was often considered as a causal factor. The authors believe that their findings demonstrate the need for training in the mental health needs of older people, in particular, the general and specific indicators and expected trajectory of dementia in this population.
Think pain
- Authors:
- KERR Diana, WILKINSON Heather, CUNNINGHAM Colm
- Journal article citation:
- Learning Disability Today, February 2009, pp.34-36.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The research reported in this paper explores the pain experiences amongst people with a learning disability who also have dementia. The paper outlines the additional issues that need to be taken into consideration when providing care for someone with a learning disability and dementia. Areas discussed include: misunderstanding behaviour that is 'challenging', problems with communication, lack of staff knowledge about the conditions of older age and the impact of dementia, and prescription of medication.
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.
Supporting carers: the carer
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2010
- Place of publication:
- London
This film focuses on Rose Fernandes who cares for her mother, who has dementia, and her daughter, who is autistic and has learning difficulties. She uses direct payments to pay for people to help with her daughter’s care, but for her mother she relies on agency staff. She finds this method tough as the agency staff only come at certain times, leaving her to care for her mum alone throughout the night. Meanwhile, her daughter Crystal receives much more flexible care, but direct payments leave her with a lot of paperwork to do. Note: This film is no longer available.
Support workers’ mental health knowledge and confidence in relation to exposure, experience, work setting and training
- Authors:
- KILANSKA Ann, PRIEST Helena M.
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(4), 2014, pp.260-267.
- Publisher:
- Emerald
Purpose: In the context of improved UK training programmes, this paper explores the factors that can predict support workers’ knowledge and confidence in recognising mental health problems in service users with intellectual disabilities. Design/methodology/approach: In total, 80 support workers (40 residential and 40 community-based) completed a questionnaire about their length of work experience, exposure to service users with additional mental health needs, training, general and specific mental health knowledge, and confidence in working with mental health issues. It was hypothesised that length of work experience, extent of training, and level of exposure would predict knowledge about mental health problems, and also predict confidence in working with people with mental health problems. It was further predicted that residential support workers would be more knowledgeable and confident than community workers. Findings: Results showed that level of exposure could predict knowledge about schizophrenia, but not about depression, anxiety, or dementia, while length of experience could predict overall mental health knowledge and confidence. Extent of training could only predict knowledge about anxiety, and work setting (residential or community) had no effect to on knowledge or confidence. Implications for practice and training are discussed. (Edited publisher abstract)
Rights, risks and limits to freedom: principles and good practice guidance for practitioners considering restraint in residential care settings
- Author:
- MENTAL WELFARE COMMISSION FOR SCOTLAND
- Publisher:
- Mental Welfare Commission for Scotland
- Publication year:
- 2006
- Pagination:
- 40p.
- Place of publication:
- Edinburgh
This guidance sets out a number of general principles that the Commission believes apply to the use of restraint in any setting. These general principles should be taken into account when restraint is being considered in the care of any person who has a mental learning difficulty, dementia or other mental disorder. The guidance aims to help guide thinking on the use of restraint and encourage all care staff to consider their actions and the impact that those actions may have on the people they are caring for. This guidance cannot give answers to every situation residents and care staff find themselves in. The document also includes sections on particular types of restraint and interventions that can lead to the freedom of movement and liberty of residents being limited in some way.