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The content of available practice literature in dementia and intellectual disability
- Author:
- JOKINEN Nancy
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(3), August 2005, pp.327-339.
- Publisher:
- Sage
Adults with intellectual disability are living to ages seen within the general population and they, too, are at risk of developing dementia. This review identifies the nature and content of the literature related to adults with intellectual disability and dementia and bring together guidelines for services and staff providing care. The preponderance of work between 1995 and 2004 focuses on the biomedical, diagnosis and assessment aspects of the disease. Although guidelines exist, there is a lack of published literature on the efficacy of practice strategies to guide the provision of daily care. Future research is discussed that could support continued community living and high quality of life during all stages of the disease.
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)
Commentary on: a comparison of dementia assessment service provision across three English county intellectual disability services
- Author:
- DODD Karen
- Journal article citation:
- Tizard Learning Disability Review, 26(3), 2021, pp.142-147.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to consider the issue of types of assessment offered by services for people with learning disabilities from the research study “A Comparison of Dementia Assessment Services for People with Intellectual Disabilities”. Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Assessment for possible dementia is a complex activity. The gold standard is to ensure that the assessment process is comprehensive including both direct assessments with the person and gathering information from key informants. The issues in not adopting this methodology are considered, as are issues in what services and assessments are called. Originality/value: The commentary considers the studies presented from a practitioner perspective. (Edited publisher abstract)
Use of dementia care mapping in the care for older people with intellectual disabilities: a mixed‐method study
- Authors:
- SCHAAP Feija D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.149-163.
- Publisher:
- Wiley
Background: The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person‐centred methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID‐care. We examined the experiences of ID‐professionals in using DCM. Methods: We performed a mixed‐methods study, using quantitative data from care staff (N = 136) and qualitative data (focus‐groups, individual interviews) from care staff, group home managers and DCM‐in‐intellectual disabilities mappers (N = 53). Results: DCM provided new insights into the behaviours of clients, enabled professional reflection and gave new knowledge and skills regarding dementia and person‐centred care. Appreciation of DCM further increased after the second cycle of application. Conclusion: DCM is perceived as valuable in ID‐care. Further assessment is needed of its effectiveness in ID‐care with respect to quality of care, staff‐client interactions and job performance. (Edited publisher abstract)
A person‐centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia – a participatory action study
- Authors:
- WATCHMAN Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.164-177.
- Publisher:
- Wiley
Background: Numbers of people with an intellectual disability and dementia present a global health and social challenge with associated need to reduce stress or agitation and improve quality of life in affected individuals. This study aimed to identify effectiveness of psychosocial interventions in social care settings and, uniquely, explore use of photovoice methodology to develop dialogue about dementia. Methods: This mixed‐method participatory action study used individualised goal‐setting theory with 16 participants with intellectual disability and dementia, and 22 social care staff across 11 sites. Five co‐researchers with intellectual disability were part of an inclusive research team collecting data using existing and bespoke tools including photovoice. Analysis used descriptive and inferential statistics and framework analysis. Results: Seventy four percentage of individual goals met or exceeded expectations with reduction in some “as required” medication. Qualitative findings include themes of enabling care and interventions as tools for practice. Photovoice provided insight into previously unreported fears about dementia. Conclusions: Individualized psychosocial interventions have potential to reduce distress or agitation. (Edited publisher abstract)
The use of therapeutic untruths by staff supporting people with an intellectual disability who display behaviours that challenge
- Authors:
- MCKENZIE Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.28-35.
- Publisher:
- Wiley
Background: Therapeutic untruths (TU) are used in dementia services to de‐escalate distressing situations. The present authors explored the use of TU by care staff supporting people with an intellectual disability who displayed behaviours that challenged. Method: Data were collected from 126 staff (female = 72.2%; mean age = 41.9 years, SD = 10.7) via an online survey in relation to three areas: responses to three scenarios, reported use of different forms of TU and ratings of perceived effectiveness of, and level of comfort using, each type. Results: 96% of participants reported using TU themselves and observing their colleagues doing likewise. Models that included perceived effectiveness of, and level of staff comfort with using, different TU were significant, although only perceived effectiveness significantly independently contributed to the model. Conclusion: The use of TU was common, with levels consistent with those found in dementia services. The limitations and implications of the findings are discussed. (Edited publisher abstract)
Wellbeing for life: changed behaviour
- Author:
- MACINTYRE
- Publisher:
- MacIntyre
- Publication year:
- 2018
- Pagination:
- 20
- Place of publication:
- Milton Keynes
A short publication providing information the behaviour changes someone may see in relation to supporting a person with learning disabilities who is living with dementia. It covers common changed behaviours as dementia progresses, understanding that all behaviours are a form of communication, ways to support a person to understand their behaviour and of supporting staff within the workplace. It is part of the Wellbeing for Life toolkit created for the MacIntyre Dementia project in order to promote understanding about getting older with a learning disability and living well with dementia. (Edited publisher abstract)
Wellbeing for life: dementia and learning disabilities
- Author:
- MACINTYRE
- Publisher:
- MacIntyre
- Publication year:
- 2018
- Pagination:
- 24
- Place of publication:
- Milton Keynes
A short publication providing information on dementia and learning disabilities. It provides key facts and statistics relating to dementia; facts and statistics about ageing with a learning disability; and information on the links between learning disability and dementia; and specifically between Down’s Syndrome and Alzheimer’s Disease. It is part of the Wellbeing for Life toolkit created for the MacIntyre Dementia project in order to promote understanding about getting older with a learning disability and living well with dementia. (Edited publisher abstract)
Wellbeing for life: getting a timely diagnosis
- Author:
- MACINTYRE
- Publisher:
- MacIntyre
- Publication year:
- 2018
- Pagination:
- 32
- Place of publication:
- Milton Keynes
A short publication providing information on getting a timely diagnosis of dementia for people with learning disabilities. It covers understanding what Timely Diagnosis means, knowing how to prepare for the assessment process; being familiar with the dementia diagnosis pathway and your role in supporting the person; advocating for the person when the outcome of assessment(s) is known; and understanding the importance of baseline screening and monitoring to facilitate Timely Diagnosis in the future. It is part of the Wellbeing for Life toolkit created for the MacIntyre Dementia project in order to promote understanding about getting older with a learning disability and living well with dementia. (Edited publisher abstract)
How social care staff can support people with learning disabilities and dementia
- Author:
- PUBLIC HEALTH ENGLAND
- Publisher:
- Public Health England
- Publication year:
- 2017
- Pagination:
- 4
- Place of publication:
- London
This factsheet provides information on how social care staff can support people with learning disabilities and dementia. It covers recognising signs of dementia, sharing information about what a diagnosis of dementia means, and things social care staff can do. It is the 11th in a series of factsheets which show how social care staff can support the health needs of people with learning disabilities. The leaflet also includes a link to a supporting slide set that can be used by social care staff as a training resource. (Edited publisher abstract)