Building Capacity for Self-Management Interventions: The Challenges

It has been five years since the Affordable Care Act was signed and much attention has been focused upon website problems, delays in implementation, litigation and less than universal expansions of Medicaid in different states, as well as successes in signing people up, and increases in the numbers of people covered by health insurance, particularly young adults and those with pre-existing conditions. Increased coverage is not the only outcome desired; transformations in the delivery of health care have also been purposefully advanced including achieving better health, better care and lower cost, and implementation of incentives and penalties related to addressing healthcare goals. Care Transition, Accountable Care Organization, Patient Centered Medical Home, Preventive Health and bundled payment mechanisms are advancing change throughout the U.S. by responding to health management concerns with holistic, person in environment and patient as partner emphases. Self-management of their conditions by patients, person-centered care, multidisciplinary approaches and the value of partnerships with community based agencies are being discovered, sometimes as if they are new concepts. And in many ways they are “new” as they did not feature prominently in past healthcare delivery but now are at the forefront of moving healthcare from an acute to a chronic care focus. These ideas are embedded in theoretical perspectives such as the Chronic Care Model [1] driving healthcare reform and supporting growing use of low cost evidence and community-based interventions. They have their own models for widespread dissemination (e.g., the expanded Chronic Care Model and the RE-AIM Framework) but are challenged by (1) poor understanding of the value and availability of evidence-based self-management interventions; (2) skepticism among professionals and providers, (3) a lack of linkages of program need and delivery particularly in electronic exchange of information, and (4) still to be established reimbursement mechanisms. Resolving these challenges will be the next critical step for healthcare reform and nurses and other healthcare professionals must decide if they are ready to be the innovators who will realize the potential of these approaches

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

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

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

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

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

Overweight/obesity and chronic health conditions in older people with intellectual disability in Ireland

This study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID).Data for this cross-sectional observational study emanated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a longitudinal study assessing the health and well-being of older Irish adults with ID aged ≥40 years across all levels of ID. Participation involves an interview process and collation of objective health measures. In this study, body mass index (BMI) (n = 572), used as a measure of weight status, was examined with clustered doctor’s diagnosed CHCs. Descriptive analysis was conducted where counts (n) and proportions (%) were used to summarise the variables univariately, while cross-tabulations were used for bivariate summary into counts and proportions. With overweight/obesity prevalence established and patterns described using logistical regression, Pearson’s chi-squared test was used to test for significant associations

Consensus Statement of the International Summit on Intellectual Disabilityand Dementia Related to Nomenclature

A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion; an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group's report), (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced, and (c) that in reports on neuropathologies or cognitive decline or impairment, definitions are used and data include subjects' ages, sex, level of ID, residential situation, basis for dementia diagnosis, presence of Down syndrome (or other risk conditions), years from diagnosis, and if available, scores on objective measures of changing function

Evaluation: Programme to Support Palliative and Hospice Care in the Republic of Ireland, Final Report

Investment in end-of-life care has made Ireland a world leader in advancing palliative and hospice care but regional inequities persist, according to an evaluation by Professor Mary McCarron and colleagues at Trinity College Dublin.This evaluation examined The Atlantic Philanthropies' End of Life programme -- which aimed to improve the care and quality of life for patients dying from an incurable illness and to ensure they and their families received excellent end-of-life care and services. From its first grant in 2004 through its final grant in 2010, Atlantic invested 25 million in the programme

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

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

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