Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Women, Health and Aging: Building a Statewide Movement

Provides an overview of current policy and program environments that affect the state's most vulnerable elder population, and considers some effective strategies to address the growing needs of older persons in California

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

World Alzheimer report 2016: improving healthcare for people living with dementia: coverage, quality and costs now and in the future

The World Alzheimer Report 2016, Improving healthcare for people living with dementia: Coverage, quality and costs now and in the future, reviews research evidence on the elements of healthcare for people with dementia, and, using economic modelling, suggests how it should be improved and made more efficient. The report argues that current dementia healthcare services are over-specialised, and that a rebalancing is required with a more prominent role for primary and community care. This would increase capacity, limit the increased costs associated with scaling up coverage of care, and, coupled with the introduction of care pathways and case management, improve the coordination and integration of care. Modelling of the costs of care pathways was carried out in Canada, China, Indonesia, Mexico, South Africa, South Korea and Switzerland, to estimate the costs of dementia healthcare under different assumptions regarding delivery systems. The report was researched and authored by Prof Martin Prince, Ms Adelina Comas-Herrera, Prof Martin Knapp, Dr Maëlenn Guerchet and Ms Maria Karagiannidou from The Global Observatory for Ageing and Dementia Care, King’s College London and the Personal Social Services Research Unit (PSSRU), London School of Economics and Political Science

Mapping long-term care in Jamaica: addressing an ageing population

Jamaica’s ageing population, high prevalence of non-communicable diseases (NCDs), and associated functional impairments suggest the need for a sustainable long-term care (LTC) system. This paper describes the current LTC system in Jamaica. A review of empirical and grey literature on LTC was supplemented with consultations and interviews and group discussions for knowledge exchange, impact and engagement events with stakeholders being conducted as part of a project on dementia care improvement. Four key findings emerged: (1) Jamaica’s LTC system depends substantially on informal care (both unpaid and paid); (2) there is a need for strategic co-ordination for LTC across the state, cross-ministerial, private, and volunteer sectors; (3) compulso-ry insurance and social protection schemes appear to exacerbate rather than narrow socioeconomic inequalities in LTC; and (4) there is a lack of systematic LTC data gathering and related information systems in both the private and public sector—for both institutional and community-based care. For LTC in Jamaica and the broader Caribbean region to be sustainable, more evidence-informed policies and practices that address inequalities in access to services, ability to pay for care, direct support from government, and the risk of needing LTC are needed

Effects of Mind and Body Interventions on Family Dementia Caregivers: A Systematic Review

Family members caring for a loved one with dementia encounter a multitude of physical and psychological stressors. Current interventions address some of these concerns, but are not adequate to address the daily psychological stress that leads so many dementia caregivers to anxiety and depression. The current review selects empirical research from the past twelve years on the effects of mind and body interventions on family dementia caregivers and finds that, while intervention type varies widely, overall results suggest that MBSR and yoga-based methods implemented for eight weeks can have a beneficial impact on caregiver anxiety, depression, mood, stress, and quality of life

Healthy Brain Initiative : state and local public health partnerships to address dementia : the 2018-2023 road map

Suggested citation: Alzheimer's Association and Centers for Disease Control and Prevention. Healthy Brain Initiative, State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map. Chicago, IL: Alzheimer\u2019s Association; 2018.2018-2023-Road-Map-508.pdf201