Sage Publications

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements.

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia.

Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers.

Objectives Few studies have captured the experiences of family carers who manage the nutritional needs of family members living with dementia at home. The identification and management of symptoms that may affect nutritional status is often reliant upon the family carer. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of the family members who support them.

Family caregivers are the backbone of most health-care systems; intensively relied upon, yet their needs go mainly ignored. Technology has the potential to reach family caregivers and create accessible solutions to meet their complex needs. Creating a feasible, acceptable, and effective “app” requires the application of innovative qualitative methods. We combined methodologies including “agile methodology” that requires the continuous integration and involvement of the research team, caregiver participants, community partners, and a technology company, in our effort to develop the app.

Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning.

Background: Older adults with disability are frequent users of the emergency department (ED) and often rely on family caregiver support. We identify whether and which caregiver characteristics are associated with older adults' ED use. Methods: We use Cox proportional hazards regression to model the likelihood of all-cause ED use (defined as 1 or more visits within 12 months of survey) as a function of caregiver characteristics after adjusting for older adult sociodemographic and health characteristics.

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data.

The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes social transitions. The study aims to understand the meaning of filial piety for people with dementia and family caregivers. Semi-structured interviews with people with dementia (n = 10) and family caregivers (n = 14) were conducted. Data were analysed using interpretative phenomenological analysis. Three themes emerged: (a) ‘Being filial is a cultural continuity and my future investment’.

Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers.