Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting

Abstract

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 Germany 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.

Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

“…Most studies also reported a higher proportion of female compared to male participants with dementia, as would be expected based on the higher prevalence of dementia among women (Prince et al, 2015). Few studies (Arai, Sugiura, Miura, Washio, & Kudo, 2000;Edelman, Kuhn, Fulton, & Kyrouac, 2006;Forbes, Morgan, & Janzen, 2006;Herron & Rosenberg, 2017;Li, Kyrouac, McManus, Cranston, & Hughes, 2012;McDonnell & Ryan, 2014;Nordberg, von Strauss, Kåreholt, Johansson, & Wimo, 2005;Sanders & McFarland, 2002;von Kutzleben, Reuther, Dortmann, & Holle, 2016) examined sex (biological status as male or female) or gender (the ways maleness or femaleness may be expressed through roles, behaviors, etc.) in relation to service needs, use, and barriers.…”

“…When examining specific support services, those involving direct assistance to the person with dementia (e.g., help with activities of daily living or home care) and home maintenance were used most frequently (Arai et al, 2000;Burholt, Wenger, & Scott, 1997;Ervin & Reid, 2015;Forbes et al, 2012;Forbes et al, 2006;von Kutzleben et al, 2016;Sun et al, 2007;Wenger et al, 2002). Reported use of support/self-help groups by caregivers and people with dementia was quite low, ranging from 4.8 per cent to 25 per cent (Buettner & Langrish, 2001;Ervin & Reid, 2015;Forbes et al, 2006;Innes et al, 2003;Sun et al, 2007).…”

Trust in older persons: A quantitative analysis of alignment in triads of older persons, informal carers and home care nurses

“…Today, older persons are increasingly expected to manage their own health care and life (Hengelaar et al, ). This emphasis on self‐management fits the policy trend in many western European countries to reduce institutionalised secondary care and encourage older persons to live at home for as long as possible in order to contain excessively growing healthcare costs (Broese van Groenou, Jacobs, Zwart‐Olde, & Deeg, ; Dahlberg, Demack, & Bambra, ; Kutzleben, Reuther, Dortmann, & Holle, ; Wittenberg, Kwekkeboom, Staaks, Verhoeff, & Boer, ). Self‐management can be defined variously (Barlow, Wright, Sheasby, Turner, & Hainsworth, ; van Hooft, Dwarswaard, Jedeloo, Bal, & van Staa, ).…”

Knowledge evaluation in dementia care networks: a mixed-methods analysis of knowledge evaluation strategies and the success of informing family caregivers about dementia support services

“…The quantitative data used in the mixed-methods approach were based on items extracted from two standardized questionnaires used within the DemNet-D study [ 17 , 19 ]. These items were drawn from the “Berlin Inventory of Caregivers” (BIZA-D) [ 20 ] and the “Instrument for Assessing Home-Based Care Arrangements for People with Dementia” (D-IVA) [ 21 ].…”

“…The ordinal-scaled items were analyzed using the Mann–Whitney U Test because the sample data were not normally distributed. The findings were compared against the data from another project that focused only on PwD in the community [ 21 ] without considering DCNs. A statistical analysis was performed using the SPSS 19 software package [ 28 ].…”