Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study

Abstract

BackgroundIn European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.MethodsA mapping system was used in 2010–2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole.ResultsThere was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master’s degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master’s degree.ConclusionsCounselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.

Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study

“…Some of the caregivers had been providing assistance for several years and resulting in a high burden of care (Akpınar, Küçükgüçlü, & Yener, ; Erol et al, ). Their workload was affected by the caregiver's (in)experience with dementia as a specific condition, a lack of information and poor support (Abley et al, ; Karlsson et al, ; Lethin et al, ; Parker, Mills, & Abbey, ; Teel & Carson, ). The demands of a caregiver's role also influenced family relationships, employment, financial resources, social activities, well‐being and health (Gallicchio, Siddiqi, Langenberg, & Baumgarten, ; Stensletten, Bruvk, Espehaug, & Drageset, ; Tang, Ryburn, Doyle, & Wells, ; Verbeek et al, ; Verbeek‐Oudijk et al, ; Zabalegui et al, ).…”

Online behavior of the alzheimer's disease patient caregivers on croatian online discussion forum

“…The examination of relevant literature in English and Croatian reveals general agreement that AD, in the words of Marc Wortmann, is as much an economic and fiscal disaster as it is a social and health challenge, and that its impact on societies with an increasingly aging population is growing dramatically (Alzheimer's Disease International, 2012). This presumption has led scholars from around the world to address the diverse needs of AD patients and their informal CGs (Edelman et al, 2006), and also to explore unmet needs (e.g., Lai & Chung, 2007;Tatangelo et al, 2018), support and service utilization (Lethin et al, 2016), and challenges and barriers CGs experience when caring for their family members diagnosed with AD (e.g., Arévalo-Flechas et al, 2014;Brodaty & Donkin, 2009;Kucmanski et al, 2016;Rosa et al, 2009;Uzun et al, 2019;Vaingankar et al, 2013) in order to maximize service utilization by CGs and minimize their burden.…”

Family Partnerships, Palliative Care and End of Life

“…Much informal care is given by individuals who would not traditionally be considered family members and such "informal caregiving" is recognised as an important facet of care delivery. Informal caregivers are defined as "persons without formal health care education who are caring for, or helping, a person with functional disabilities, prolonged psychiatric or physical illness, or age-related problems" [4]. Within this chapter, the term "family" will be used to encapsulate all persons who have an important relationship with the patient, e.g.…”