The caregiving phenomenon and caregiver participation in dementia

Abstract

Background Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads’ needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost‐effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.

Barriers and facilitators for caregiver involvement in the home care of people with pressure injuries: A qualitative study

“…In this sense, the results of this study confirm the social tendency observed in southern Europe countries, namely that women generally assume a greater responsibility in the care of children, partners, and dependent family members [37]. Our analysis supports the fact that, in the family context, caring is almost exclusively considered to be a female role [39,40].…”

Patients’ and Caregivers’ Conceptualisations of Pressure Ulcers and the Process of Decision-Making in the Context of Home Care

“…Furthermore, as reported in prior studies, the caregivers described how caring for their family member was associated with positive feelings, such as wellbeing or satisfaction [20,45], which contributes toward creating a positive and pleasant care environment and, in turn, promotes the involvement of caregivers in the process of SDM. This process is also perceived as being a psychological strategy toward facing the illness [46], helping to decrease the caregiver’s burden [47,48].…”

“…Moreover, this research shows that having a low educational level can affect patients’/caregivers’ active participation in the process of SDM [40,50]. Therefore, it is especially important to train patients and their caregivers in competencies related to the management of health [20].…”

“…It is known that pressure ulcers (PUs) are a major public health problem that increase morbimortality, the amount of care needed and the lack of autonomy or dependency of patients [15]. The home is perceived as the preferred place for the care of people with PU [20,21,22], with the main caregiver (MC) acquiring an essential role in patient care and the resolution of the PU [22].…”

Dignity as a guiding principle for family care partners in the care of an old relative with dementia

“…Previous research has been dedicated to family caregiving of people living with dementia, with a special focus on the correlation between caregiver burden and health outcomes , as well as between caregiver burden and their old relative's residential home placement . There has also been a research interest in the correlation between patient participation in relation to caregiver participation in dementia care . Some studies draw attention to how family care partners deal with the issue of recognising risks of incidents, problems and needs and how they require collaboration with formal care at different stages of dementia .…”