Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…

This paper explores contemporary Irish social policy for family caregivers with specific focus on the dynamic between the individual, the family and the state in terms of the social contract for care provision for people with intellectual disability. Drawing from Bacchi's analytical framework (Bacchi, 2009), the Irish National Carers' Strategy is…

Background: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who…

Background: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning…

Background: Friendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff. Method: Data from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends.…

Background: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. Method: An international consultation relied on three consensus building methods--the Nominal Group Technique, an NIH consensus conference…

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…

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…

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and…

Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…

Multimorbidity (2 or more chronic conditions) is being widely studied in older populations and this study explores both the relevance of emerging conceptualizations and the extent to which multimorbidity is a feature of aging in persons with an intellectual disability. Methods: Data was generated from wave one of the intellectual disability…

This study evaluated the impact of an information and referral intervention designed to help family caregivers of people with dementia obtain needed health and human services. Caregivers (N = 608) of community-residing people with dementia were surveyed about their need for and use of community services. Of the 608 caregivers, 203 agreed to be…

Kin caregiving research tends to focus on the experiences of grandmothers. Often unnoticed and underserved are grandfathers who also take on this responsibility. Here, two groups of grandfathers participated in focus group interviews to discuss their experiences as caregivers to their grandchildren. Common themes for the grandfathers were the…

The authors sought to modify and apply Pearlin et al.'s "Stress and Coping Framework" model (which was designed to guide research on family caregiving) to research that could help them understand the experiences of staff carers of persons with intellectual disabilities affected by dementia. The authors, two experienced researchers and…

Examines trends in intervention research designed to support caregivers of chronically ill, older adults. Focuses on the work of Ronald W. Toseland and colleagues but also reviews other selected caregiver intervention research studies. Analyzes the aims, content, methodology, and outcomes of studies conducted over the past two decades. (RJM)