Journal article

Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical.

Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3–6 months after an older person’s death and invited to take part in the current study.

Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used.

Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test.

Objectives: Although there are many studies on the relationship between patient‐related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. Aim: to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community‐dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship.

Background: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. Objectives: The aim of this study was to explore carers' participation in antipsychotic medication decision making.

Caring for dependents with disabilities and how this type of care differs from the care of typically developing dependents has largely remained unaddressed in the work–family literature, partly because of a lack of theoretical development on the concept of dependent family care. Studies examining dependent family care often apply a life course perspective, missing key disability factors influencing dependent family care demands and need for resources.

This research contributes a first-hand account of the experiences of youth’s substantial unpaid familial caregiving in the context of long-term illness, disability or problems related to alcohol and/or other drugs. A qualitative focus group methodology explored the benefits and challenges of youth’s caregiving via a sample of 15 youth caregivers (or young carers) from both the Greater Toronto area and the Niagara Region of Southern Ontario.

Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services.

Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context.