Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
- Författare
- Lethin C, Leino-Kilpi H, Roe B, Soto MM, Saks K, Stephan A, Zwakhalen S, Zabalegui A, Karlsson S;
- Titel
- Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
- Utgivningsår
- 2016
- Tidskrift
- BMC Geriatr
- Volym
- 16
- Sidor
- 32
- Sammanfattning
BACKGROUND: In 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.
METHODS: A 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.
RESULTS: There 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.
CONCLUSIONS: Counselling, 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.