Effects of the dementia care toolbox on personnel’s self-reported confidence in patient care: a CRT in general practices

Dementia is a worldwide challenge due to a lack of curative therapies for most forms of the syndrome [1]. It is estimated that 46.8 million people suffer from dementia and this number is expected to triple by 2050 [2]. Especially in aging populations, this represents a considerable economic, medical, and social challenge for health care systems [3‐6]. Although an issue of debate [1], it is believed that the (early) detection of dementia benefits the patient and their next of kin in terms of optimal treatment, reduction of psychological stress and the possibility of living in a familiar environment as long as possible [7‐10]. British studies from primary care by Cahill et al. [11] and Iliffe et al. [12] showed that detection can be challenging as early symptoms are difficult to distinguish from those of other cognitive impairments and normal ageing processes, testing is time-consuming [13, 14] and diagnostic skills may be insufficient [14, 15]. Surveys among general practitioners (GPs) from Ireland [11, 16], Nepal [15] and England [17] indicate a lack of knowledge on dementia [18] and support services available for patients and their next of kin [14, 19], as well as uncertainties in communicating the diagnosis [14, 18], especially when dealing with migrant populations [20]. The authors of these studies recommended information and support strategies for both physicians as well as patients and their care givers [14, 18, 11].

In Germany, 21.2 million inhabitants have a migration background of whom 2.07 million are aged over 65 years and are at risk for dementia [21]. European studies from Nielsen et al. indicate that diagnosing dementia in migrants is considered difficult by two thirds of physicians [20]. Therefore, researchers from Belgium and Norway assumed that dementia is underdiagnosed in migrants [22, 23]. Currently, there is no data from Germany indicating an outcome-relevant deficit in dementia care for migrants, but this may differ from other countries as all patients have health coverage and access to primary and further level neuro-psychiatric care. For medical and ethical reasons, the German guideline on dementia recommends dementia diagnostic only in patients agreeing on this [1]. Aiming to better understand potential difficulties of German GPs in dementia care for patients with and without migration background, we had performed a physician questionnaire survey among 326 GPs: 96% experienced barriers at least once mostly due to language barriers or information deficits for migrants, 70.9% reported difficulties in diagnosing dementia in migrants [24]. To provide focussed information for GP practices, we developed a dementia care toolbox with material for physicians and practice assistants (PrAs) (information card, diagnostic tool). In addition, information media for patients and their next of kin (poster for the waiting room, brochure) was provided in German, Turkish and Russian. This is in accordance with the distribution of migrants in the German North Rhine region, where most migrants have a Turkish (17.7%) or Russian (8.1%) background [25]. The effects of the toolbox on GPs self-reported care for dementia care patients with and without migration background was studied in the intervention arm of this study [26]. In a first analysis, we showed that the toolbox was generally well accepted (82%) by GPs and PrAs. In descending order, both professions rated the brochures (52.1.%), the information card (44.9%) and the poster (28.6%) as helpful [26]. Here we report the effects of the toolbox on the self-reported confidence of German GPs and PrAs when dealing with dementia patients with and without a migration background.

This cluster-randomised controlled intervention trial aimed at raising awareness and perceived self-confidence on dementia care for patients with and without migration background in German GPs and PrAs by providing the newly developed Dementia Care Toolbox. Based on a sample with 32 GP practices only, our toolbox did not show a significant effect on self-reported confidence in dementia care after 3 months, yet there were positive tendencies indicating learning effects regarding knowledge on local support centres and self-reported communication skills with dementia patients. The latter findings are in line with previous studies stressing an educational need for increasing GPs´ self-confidence in dementia care [11, 18]. Several studies from various countries addressed this problem and studied interventions aiming to improve dementia care in primary care. In a large, nationwide dementia-focused Continuing Medical Education program with 1352 GPs from Australia, Casey et al. 2020 found a significant increase in dementia awareness and self-reported confidence directly after the intervention and at 6 to 9 months follow-up measured with a self-report survey using mainly Likert scales [30]. In comparison to our 3-months intervention with printed materials only, the former-mentioned program offered at least 6 h online or face-to-face education including case studies and discussions to GPs. Likewise, 29 American primary care physicians, who participated in a one-day dementia care training program, showed a significantly increase in dementia care competency after 6 months assessed with a baseline, post-training, and follow-up questionnaire [31]. Similar improvements of interventions in dementia care were shown in some European GP populations [32]. Foley et al. conducted a study with 104 GPs from Ireland who participated in small-group dementia workshops resulting in increased knowledge and confidence in dementia care measured with post-intervention questionnaires using Likert-style response options [32]. As questionnaires of these studies differed, comparisons on dementia related attitudes and self-reported confidence need to be considered with caution. Our study used the validated and reliable General Practitioner Attitudes and Confidence Scale for Dementia (GPACS-D) developed by Mason et al. for measuring Australian GPs attitudes and confidence in dementia care [33]. In contrast to these studies, our study is the first survey targeting GP practices´ dementia care in patients with migration background. Although no significant differences were found in the limited sample, we showed tendencies of reduced self-reported confidence in dementia care of patients with migration background in the intervention group. This might suggest that our intervention “dementia care toolbox” might have increased GPs´ and PrAs´ awareness of their limitations in care for patients with migration background. Reported difficulties and challenges of GPs addressed communication with and information of dementia patients with migration background which highlights the need for special interventions. Similar difficulties in dementia care for patients with migration background were shown in previous studies. In a study of 27 health professionals from Norway, Sagbakken et al. (2018) found that language barriers and a lack of appropriate diagnostic tools represented main barriers for GPs in dementia care for migrants [34]. These authors recommended that communication and diagnostic skills should be improved by offering educational trainings to GPs. Similar conclusions were drawn from a Swiss survey among 4460 GPs of whom 15% reported a lack of confidence in diagnosing dementia in patients with a migration background [35]. Likewise, a survey of 36 clinical dementia centres from 15 European countries showed that 64% reported difficulties in diagnosing dementia in migrants due to communication problems and insufficient diagnostic tools [20]. Our toolbox addressed these deficits by offering practical tools for GPs in several languages. In addition, the toolbox included information brochures for patients and next of kin in several languages as families play a major role in early dementia detection. Such an approach is supported by a 2020 published study from Norway addressing barriers and facilitators for dementia care service in eight family caregivers of migrants with dementia [36]: a lack of knowledge on dementia and insufficient awareness of care services for migrants with dementia were identified as key barriers. Also, intercultural differences need to be respected as dementia is not socially accepted as a neurological disease in all cultures and initial symptoms may be misinterpreted as normal aging [37].

This cluster-randomised study addressed both professional groups involved in GP practices´ care for dementia patients, namely GPs and PrAs which is a major strength of our study. Due to limited project resources, this exploratory study has several limitations. First, no studies with reliable outcomes addressing knowledge and confidence of German GPs in dementia care for migrants were available for a formal sample size calculation. The focus was a comparison of the toolbox effects between intervention and control arm at follow-up as this information was not assessed at baseline. Second, no qualitative information on changes in practices and the use of the toolbox was obtained. Third, the intervention might have drawn attention to general practices with particular interest in dementia care, so that results on self-reported confidence in dementia care might not be representative for all GPs. German GPs complete at least 5 years of postgraduate training prior to licensing, while GP training comprises 3 years in many other countries. Therefore, generalizability of the present findings might be limited. Fourth, our questionnaire was a modified version of the Australian GPACS-D which is not validated in German yet. As we showed a high acceptance of the toolbox materials in our prior publication [26], a larger study is reasonable. Future research should include direct educational approaches involving team education rather than print-materials only.

Prospectively, GP practices will be increasingly confronted with dementia in patients with migration background. Therefore, our dementia care toolbox is a promising approach to facilitate and potentially improve dementia care especially for patients with migration background. However, further studies are needed to investigate the effectiveness of the dementia care toolbox in a larger sample of GP practices.