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Caregiver resource utilization: intellectual and development disability and dementia
- Authors:
- FLEMING Victoria, LITZELMAN Kristin
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1468-1476.
- Publisher:
- Wiley
Background: Adults with intellectual and developmental disabilities and their families have high need for support services. This study assessed resource utilization among caregivers of intellectual and developmental disabilities and other conditions. Methods: We assessed 366 caregivers of adults with intellectual and developmental disabilities, dementia or other conditions Regressions assessed group differences in number of agency contacts and frequency of service use. A secondary analysis assessed reasons for underutilization of services. Results: Caregivers of individuals with dementia contacted twice as many agencies as other caregivers and were more likely to report using suggested services. Agency contact and service utilization were similar among caregivers of adults with intellectual and developmental disabilities compared to other caregivers. Caregivers of adults with intellectual and developmental indicated that suggested services were unavailable to them. Conclusion: The findings of this study shed light on challenges with access to and utilization of support services. (Edited publisher abstract)
Reliance on carer reports of early symptoms of dementia among adults with intellectual disabilities
- Authors:
- JAMIESON-CRAIG Rebekah, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(1), March 2010, pp.34-41.
- Publisher:
- Wiley
This study examined carer-reported symptoms to determine whether carer reports of decline in function would be a better screening method to detect possible cases of dementia than reports of memory decline in older adults with ID. One hundred and fifty four participants from five London boroughs were reassessed along with their carers two to three years after baseline. A questionnaire for carer-reported change in everyday function and the Dementia Questionnaire for Persons with Mental Retardation (DMR) were used to gauge carer views of everyday function and memory. Participants who developed dementia displayed both everyday function and memory decline, where decline in function appeared to be the best indicator of new dementia cases. Retrospective carer report of change in everyday function was shown to be as good as prospective ratings to identify dementia. In those with mild ID, memory change was a better indicator of dementia, while in those with more severe ID decline in everyday function was a better indicator. The authors concluded that decline in everyday function appeared to be a better screening method for dementia than memory decline, particularly for participants with moderate to severe ID.
Dementia care in England and the social model of disability
- Authors:
- GILLIARD Jane, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(4), November 2005, pp.571-586.
- Publisher:
- Sage
This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia - younger people (i.e. those under the age of 65) and those from minority ethnic groups.
Supporting people with an intellectual disability and dementia: a constructivist grounded theory study exploring care providers’ views and experiences in the UK
- Authors:
- HERRON Daniel L., PRIEST Helena M., READ Sue
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1405-1417.
- Publisher:
- Wiley
Background: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions: Findings have demonstrated the importance of planning and supporting carers’ holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered. (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)
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)
Can clinicians and carers make valid decisions about others' decision-making capacities unless tests of decision-making competence and capacity include emotionality and neurodiversity?
- Authors:
- MACKENZIE Robin, WATTS John
- Journal article citation:
- Tizard Learning Disability Review, 16(3), 2011, pp.43-51.
- Publisher:
- Emerald
This paper offers academic criticism and explanation for the lack of knowledge of many of those involved in capacity assessments, especially non-professionals such as carers of the learning disabled. It suggests that current guidance for capacity assessments do not take into account issues of emotionality. The Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and carers may undertake assessments of decision-making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision-making capacity such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the decisions on the grounds of incompetence and to act in the person's best interests. Many will lack training in their clinical and legal responsibilities and liabilities. It is therefore vital that they are protected by an increased knowledge of mental capacity legislation and practice.
Developing an education intervention for staff supporting persons with an intellectual disability and advanced dementia
- Authors:
- FAHEY-McCARTHY Elizabeth, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(4), December 2009, pp.267-275.
- Publisher:
- Wiley
This study aimed to explore care concerns in supporting people with a learning disability and advanced dementia, and to develop, deliver and evaluate an educational intervention with staff in learning disability settings and specialist palliative care services. Fourteen focus group interviews were conducted with staff across six learning disability services and one specialist palliative care provider in the greater Dublin area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "ageing in place," and the preparation for a "good death" including support for staff, peers and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in people with learning disabilities.
Assessing dementia in people with learning disabilities: the relationship between two screening measures
- Authors:
- KIRK Linzi J., HICK Rachel, LARAWAY Alec
- Journal article citation:
- Journal of Intellectual Disabilities, 10(4), December 2006, pp.357-364.
- Publisher:
- Sage
- Place of publication:
- London
As life expectancy increases for people with learning disabilities, the impact of dementia on people with learning disabilities and their families, carers and services is becoming more apparent. Psychological services for learning disabilities are receiving an increasing number of referrals requesting dementia assessment. Health and social care services are adapting to the diverse needs of an ageing population with learning disabilities. This article describes a study investigating the relationship between two assessments for dementia in people with learning disabilities. Carers of people with learning disabilities over the age of 50 (or 40 if the individual had Down syndrome) completed the Dementia Questionnaire for Mentally Retarded People and the Adaptive Behaviour Scale–Residential and Community. Overall, the two questionnaire measures showed significant relationships. However, results suggested that both assessments have clinical value in informing individual needs and aiding diagnosis. Implications for both clinical and social care services are discussed.
Make a difference in dementia care training: resources that are effective, meaningful and fun
- Editors:
- SHEARD David M, (ed.)
- Publisher:
- Alzheimer's Society
- Publication year:
- 2003
- Pagination:
- 148p.
- Place of publication:
- London
This manual includes 60 proven icebreakers, exercises. Session plans, notes, diagrams and evaluation questions ensure the exercises are ready to use immediately. Although the exercises focus on dementia care, they will also be of interest and use to trainers working in other fields.Topic areas include: the feelings and experiences of people with dementia; focusing on the person, not just their dementia; understanding the basic functions of the brain; viewing dementia as a disability; and communication – the meaning behind the words.