Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Abstract

A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

Informal and formal care among persons with dementia immediately before nursing home admission.

“…In contrast, a previous study conducted in eight European countries with a similar cohort regarding age and stage of dementia reported 360 hours per month, while studies observing cohorts with younger patients in earlier stages of dementia have reported the use of informal care in a range of 82 to 160 hours per month [12,16,25,26]. The difference in informal care between previous studies and the current one may be due to the substantially lower share of co-resident family caregivers in our study.…”

Evaluation of the perceived health of caregivers of patients in mild-to-moderate stage Alzheimer's disease

“…37 Thus, when studying specifically the type of family relationship of the caregiver with the person cared for we have observed how the acute pathology is more evident in family caregivers, brothers and sisters and in the spouses, being also more pronounced in the case of chronic psychological problems in siblings and to a lesser extent in close relatives in the family environment as they are the children and the spouses. According to other authors, the closer the family relationship and coexistence in the home, the perceived health and overload is more severe in family caregivers, 25,26 but it has not been found in other closer kinship relationships such as siblings.…”

“…It is divided into four subscales of seven items each, which measure different dimensions: somatic symptoms (items 1-7), anxiety and insomnia (items 8-14), social dysfunction (items 15-21), and severe depression (items [22][23][24][25][26][27][28]. Each item has four alternatives responses: Not at all, No more than usual, Rather more than usual, and Much more than usual.…”

“…Specifically, spouses and children, to a lesser extent, suffer the most emotional distress and this is attributable to the relationship of familiarity and coexistence in the family home . Sutcliffe et al determined that the longer the time of care and the relationship of kinship in the nearest, especially in daughters and wives, the overload and psychological stress is also higher. The time and evolution of dementia and, therefore, the care required by patients during their evolution is a determining factor in caregiver overload .…”

Dementia as a contemporary challenge for providing care for the aging populations

“…The burden on the informal carer depends not only on the severity of the disease and symptoms, but also on the support provided by different systemic solutions in a given country. A comparative analysis of this problem conducted in 8 European countries (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, the United Kingdom) showed that the burden on caregivers was highest in Estonia and lowest in the Netherlands [26].…”