van der Steen, Jenny T.

Background: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it.

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study.

Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. An exploratory qualitative study.

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent.

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cro