Assessing Needs of Care in European Nations. ENEPRI Policy Brief No. 14, 28 December 2012

This Policy Brief presents the research questions, main results and policy implications and recommendations of the seven Work Packages that formed the basis of the ANCIEN research project, financed under the 7th EU Research Framework Programme of the European Commission. Carried out over a 44-month period and involving 20 partners from EU member states, the project principally concerns the future of long-term care (LTC) for the elderly in Europe and addresses two questions in particular: How will need, demand, supply and use of LTC develop? How do different systems of LTC perform

The OCareCloudS project: toward organizing care through trusted cloud services

The increasing elderly population and the shift from acute to chronic illness makes it difficult to care for people in hospitals and rest homes. Moreover, elderly people, if given a choice, want to stay at home as long as possible. In this article, the methodologies to develop a cloud-based semantic system, offering valuable information and knowledge-based services, are presented. The information and services are related to the different personal living hemispheres of the patient, namely the daily care-related needs, the social needs and the daily life assistance. Ontologies are used to facilitate the integration, analysis, aggregation and efficient use of all the available data in the cloud. By using an interdisciplinary research approach, where user researchers, (ontology) engineers, researchers and domain stakeholders are at the forefront, a platform can be developed of great added value for the patients that want to grow old in their own home and for their caregivers

Collaborating to Create Elder Friendly Communities in New Hampshire: A Scan of the Current Landscape

The fact that the population of the United States is aging is no surprise; the demographic projections are well documented. There have never been as many older adults living as there are today, and this number will only increase. Northern New England is aging more rapidly than the rest of the country, with Vermont, Maine, and New Hampshire having the oldest populations in term of median age (U.S. Census, 2014). New Hampshire is expected to be the fastest aging state in New England through 2030, with nearly one-third of its population being over the age of 65 (Norton, 2011). This phenomenon is anticipated to place substantial pressure on publicly-funded health programs and long-term services and supports in the Granite State. But the story of the aging of the population is not only about increased numbers. As longevity increases, the average age of the older population will see a dramatic increase. The number of persons over the age of 85 in the United States is expected to increase five-fold by 2040. As the possibility for functional limitations and disability increases with age, the need for long-term, formal, and informal supports is expected to increase as the number of older adults, particularly those over the age of 85 increases. In addition, women continue to live longer than men; on average, life expectancy for women is three years longer than for men. These factors create a complex picture of aging, which includes a growing population of older adults, a majority of whom will be women; and a growing number of those over the age of 85, who are more likely to require some type of assistance as they age. It is a mistake to look at our aging population in a singular way. Although we tend to make generalizations about older adults, as a group, they are more physiologically and socially diverse than any other age group (Brummel-Smith & Mosqueda, 2003). As we age, we become more and more diverse, as there are no two people who have had the same life experiences, shaping who we are over our lifetimes. The baby boomers (those born between 1946 and 1964) are likely to be the most diverse cohort of older adults we have seen to date, and it is likely that they will redefine our conception of age and aging. Older adults bring a diverse set of skills, talents, and knowledge that should be tapped as a significant natural resource to support a new and exciting vision of aging

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Creating Excellence in Dementia Care: A Research Review for Ireland's National Dementia Strategy

Examines the prevalence and economic and social costs of dementia; policies, practices, and data on health and social care services in community-based, acute care, and long-term residential settings; and proposed elements for a new strategy

Quality of life for caregivers of a child aged 6-16 years with Autistic Spectrum Disorder and/or an intellectual disability : a comparative study : a thesis presented in fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Turitea, New Zealand

Quality of life for caregivers of children with autistic spectrum disorder and/or an intellectual disability was compared to quality of life for those caring for a normally developing child. Participants were caregivers of children between 6 - 16 years of age who were divided into two groups: Caregivers of disabled children (Group 1, n = 60) and caregivers of normally developing children (Group 2, n = 13). The research investigated differences of overall quality of life between groups. Within Group One the influence on quality of life for caregivers was investigated in relation to the child's behaviour, level of support the child requires to complete activities of daily living, caregivers marital status, caregivers socio-economic level, and caregivers satisfaction with perceived supports. The Quality of Life Index and the Nisonger Child Behavior Rating Form were used to determine quality of life and problem behaviours. Results showed a difference in overall quality of life between groups. Child's behaviour was found to have a significant relationship with caregiver‘s quality of life. Satisfaction with perceived supports had a weak relationship to caregiver‘s quality of life. No statistically significant relationship was found between caregiver‘s quality of life and the child's activities of daily living requirements, caregiver‘s marital status or caregiver‘s socio-economic status. Quality of life for caregivers of developmentally disabled children was shown to be lower than the general population. New Zealand is currently in a state of flux in regards to addressing and refining disability support services. Research that further investigates these results may enhance service delivery and result in better outcomes for those supporting children with a disability

Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly-funded social care services in England. Methods: Unpaid carers were identified through a survey of users of publicly-funded social care services in England. 387 carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (for example, characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses. Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (7 items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1%) indicates a high level of acceptance. Conclusions: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age

The experiences of patients and carers in the daily management of care at the end of life

Background Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. Aim To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. Method Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. Findings Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patients and spouse-carers actively made choices about how to manage their situation, and develop and modify managing strategies based on their experiences. Conclusions When daily management is effective and care professionals acknowledge the dyadic nature of the patient and spouse-carer relationship, people have confidence in living with advanced disease

Lessons Learned: The Bush Foundation Infant Toddler Development Program Turns 10

Describes a complex ten-year initiative to develop curricula and train faculty, state agencies, and the child care community in reducing barriers to the healthy development of young children in Minnesota, North Dakota, and South Dakota