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Care arrangements for community‐dwelling people with dementia in G ermany as perceived by informal carers – a cross‐sectional pilot survey in a provincial–rural setting
Author(s) -
Kutzleben Milena,
Reuther Sven,
Dortmann Olga,
Holle Bernhard
Publication year - 2016
Publication title -
health and social care in the community
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.984
H-Index - 68
eISSN - 1365-2524
pISSN - 0966-0410
DOI - 10.1111/hsc.12202
Subject(s) - respite care , dementia , thematic analysis , nursing , cross sectional study , descriptive statistics , medicine , psychology , family medicine , qualitative research , sociology , social science , statistics , disease , mathematics , pathology
The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home‐based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self‐administered questionnaire (D‐ IVA ‘Instrument for Assessing Home‐Based Care Arrangements for People with Dementia’) was developed and distributed in a provincial–rural setting in G ermany as a cross‐sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open‐ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care‐dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia ( P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D‐ IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D‐ IVA should consider applying complementing quantitative measures as well as qualitative methods.