101 research outputs found

    Statement by Sarah Mary (Anne) McCarron collected by Rachel George on May 1, 2014

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    Alien Registration- Mccarron, Mary E. (Brewer, Penobscot County)

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    https://digitalmaine.com/alien_docs/10707/thumbnail.jp

    Expanding Assessment of Fear of Falling among Older Adults with an Intellectual Disability: A Pilot Study to Assess the Value of Proxy Responses

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    Introduction. Fear of falling (FOF) has emerged as an important health concern in older adults, yet it has rarely been investigated in people with intellectual disabilities (ID). Valid and reliable measurement approaches are a particular challenge. Scales that have been developed to measure FOF have not been validated for use with older people with ID and are not routinely used with proxy respondents. Method. 63 people comprised purposeful samples of 3 groups, people with ID , their nominated key workers , and additional support workers . Test-retest reliability and interrater reliability were assessed for using a dichotomous, single-item FOF screening measure. The degree of FOF and activity restriction due to FOF were also investigated. Results. Inter-rater reliability was found to be moderate to excellent with Kappa = 0.77 on ratings of the FOF item. Test-retest reliability for each group of reviewers for the FOF item were also found to be excellent (0.95). Conclusion. The global item is a suitable screening measure for FOF in older adults with ID and can assist in identification of individuals requiring further assessment. Proxies, if carefully selected, can provide consistent and reliable reports of the presence of FOF in people with ID

    Developing Practice in Healthcare: The Contribution of Bildung to Negotiating the Tensions among Practical, Professional and Organisational Knowing

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    "Action research provides a framework for developing practice in healthcare. While developing practice typically implies a combination of patient centeredness, quality improvement and change, conflicts arise in how concepts such as patient centredness are defined. Developing practice invites attention to positionality and engagement with policy directives, trends in clinical care, and other disciplines each with their own language stratification reflecting particular sets of values and beliefs. Our process of engagement is value-based, requiring attention to different and often conflicting languages or worldviews. We understand practice development as responding to different calls from the system, our individual disciplines, patients and changing discourses in healthcare, each exerting different pressures at different times. This paper describes an action research project aimed at developing nursing practice through engaging with two conflicting philosophies of care. We illustrate the contribution made by a particular understanding of Bildung to engaging with positionality, different voices in healthcare and the context of care in a complex environment. Bildung, as self-cultivation, invites engagement with other as an underpinning for developing practice beginning with first person inquiry. The idea of Bildung drew attention to the local moral world of nursing and the experience of dual citizenship. Dual citizenship reflected engagement with conflicting care philosophies and notions of evidence." (author's abstract

    Factors associated with polypharmacy and excessive polypharmacy in older people with Intellectual Disability differ from the general population; a cross-sectional observational nationwide study

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    Objectives: (1) To evaluate the prevalence of polypharmacy (5–9 medicines) and excessive polypharmacy (10+ medicines) and (2) to determine associated demographic and clinical characteristics in an ageing population with intellectual disabilities (IDs). Design: Observational cross-sectional study. Setting: Wave One (2009/2010) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Participants: A nationally representative sample of 753 persons with ID, aged between 41 and 90 years. Participants/proxy reported medicines ( prescription and over the counter) taken on a regular basis; medication data was available for 736 participants (98%). Main outcome measures/interventions: Participants were divided into those with no polypharmacy (0–4 medicines), polypharmacy (5–9 medicines) and excessive polypharmacy (10+ medicines). Medication use patterns were analysed according to demographic variables and reported chronic conditions. A multinomial logistic regression model identified factors associated with polypharmacy (5–9 medicines) and excessive polypharmacy (≥10 medicines). Results: Overall, 90% of participants reported use of medicines. Polypharmacy was observed in 31.5% of participants and excessive polypharmacy in 20.1%. Living in a residential institution, and reporting a mental health or neurological condition were strongly associated with polypharmacy and excessive polypharmacy after adjusting for confounders, but age or gender had no significant effect. Conclusions: Polypharmacy was commonplace for older adults with ID and may be partly explained by the high prevalence of multimorbidity reported. Review of appropriateness of medication use is essential, as polypharmacy places ageing people with ID at risk of adverse effects

    Factors associated with polypharmacy and excessive polypharmacy in older people with Intellectual Disability differ from the general population; a cross-sectional observational nationwide study

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    Objectives: (1) To evaluate the prevalence of polypharmacy (5–9 medicines) and excessive polypharmacy (10+ medicines) and (2) to determine associated demographic and clinical characteristics in an ageing population with intellectual disabilities (IDs). Design: Observational cross-sectional study. Setting: Wave One (2009/2010) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Participants: A nationally representative sample of 753 persons with ID, aged between 41 and 90 years. Participants/proxy reported medicines ( prescription and over the counter) taken on a regular basis; medication data was available for 736 participants (98%). Main outcome measures/interventions: Participants were divided into those with no polypharmacy (0–4 medicines), polypharmacy (5–9 medicines) and excessive polypharmacy (10+ medicines). Medication use patterns were analysed according to demographic variables and reported chronic conditions. A multinomial logistic regression model identified factors associated with polypharmacy (5–9 medicines) and excessive polypharmacy (≥10 medicines). Results: Overall, 90% of participants reported use of medicines. Polypharmacy was observed in 31.5% of participants and excessive polypharmacy in 20.1%. Living in a residential institution, and reporting a mental health or neurological condition were strongly associated with polypharmacy and excessive polypharmacy after adjusting for confounders, but age or gender had no significant effect. Conclusions: Polypharmacy was commonplace for older adults with ID and may be partly explained by the high prevalence of multimorbidity reported. Review of appropriateness of medication use is essential, as polypharmacy places ageing people with ID at risk of adverse effects

    Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision

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    Purpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Findings: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person’s prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration. Summary: The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.Additional listed co-author: Advanced Dementia Working of the International Summit on Intellectual Disability and Dementi

    Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia

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    Background  Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia.  Methods  A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup.  Results  The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning.  Conclusions  The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.Additional co-author: the Working Group of the International Summit on Intellectual Disability and Dementi

    Targeting the folate receptor: Improving efficacy in inorganic medicinal chemistry

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    The discovery of the high-affinity, high-specificity folate receptor in mamalian kidney cells, coupled with the ability of folate to enter cells by folate receptor-mediated endocytosis and the subsequent elucidation of the folate receptor’s overexpression in specific cancer cell types; heralded the arrival of the area of chemotherapeutic folate targeting. The application of purely organic folate-based small-molecule drug conjugates that selectively target the folate receptor, which is over expressed in several diseases such as cancer, is well established. The application of inorganic folate-targeted drugs offers significant potential to expand and enhance this therapeutic approach. From the data made available to date, it is apparent that this aspect of inorganic medicinal chemistry is in its youth but has the capability to contribute greatly to cancer research, both in therapy and diagnosis. The union of folate-receptor targeting and inorganic medicine may also lead to the development of treatments for disorders such as chronic-inflammation, tuberculosis, neurodegenerative disease and leishmaniasis. In this review, we summarize what is known about the coordination chemistry of folic acid and the therapeutic potential of such complexes. We also describe approaches adopted to conjugate platinum drugs to folate- or folate-carrier- systems and their prospective ability to overcome problems associated with unwanted side-effects and resistance by improving their delivery and/or selectivity. The literature pertaining to non-platinum metal complex conjugates with folic acid is also reviewed revealing that this is an area that offers significant potential to develop targeted therapeutic approaches in areas such as chemotherapy and molecular imaging for diagnostics
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