Unburdening dementia – a basic social process grounded theory based on a primary care physician survey from 25 countries

Figures & data

Table 1. The basic social process of Unburdening Dementia.*

Unburdening Dementia - a two-step Basic Social Process
BASIC SOCIAL PROCESS STAGE:	Recognising burden after burden identification and assessment.	Burden Relief
APPLIED TO DEMENTIA CARE :	Identifying cognitive and mental burden by family caregiver. Assessing burden by psychometric tools and then Recognising burden by formal caregiver.	Cognitive, mental and social Burden Relief
CASE STORY ILLUSTRATION:	Consultation together: spouse/child report memory loss. Physician notices lack of collaboration during consultation. Assessment with Mini Mental State Examination. Physician diagnoses the patient with dementia.	Burden Relief by community health services, home help services and drugs

The table illustrates the basic social process of Unburdening Dementia that emerged to explain the action in the data provided by primary care physicians across EGPRN countries. *Basic social processes are grounded theory core variables that are ‘processural’ meaning that they have two or more clear emergent stages [13,14]. Descriptive incidents of community health and home help services (such as nursing home care and dementia services) appeared in more than half of the case stories as indicators of a property of Burden Relief.

Table 2. Demographics, dementia prevalence, grades of dementia drug prescribing permissiveness in the participating countries and share of dementia drugs prescribed in the case stories per region.

Country	Population million people	Population 65 years old or over (%)	Dementia prevalence (%)	Primary care physician allowed to prescribe dementia drugs?	Number of case stories (% of total)	Proportion of typical dementia drug treatment per case per region
Denmark	5.8	18.2	1.5	PARTIAL	3 (2)
Finland	5.5	19.4	1.7	NO	4 (3)
Norway	5.2	15.9	1.6	YES	6 (4)
Sweden	9.7	19.4	1.8	YES	8 (5)
North Countries, total					21	57%
Austria	8.6	18.3	1.7	NO	3 (2)
Belgium	11.3	17.8	1.8	PARTIAL	2 (1)
France	66.4	18.0	1.8	PARTIAL	5 (3)
Germany	81.2	20.8	1.9	YES	5 (3)
Ireland	4.6	12.6	1.1	YES	35 (23)
Switzerland	8.2	17.6	1.7	YES	5 (3)
The Netherlands	16.9	17.3	1.5	PARTIAL	5 (3)
West Countries, total					60	67%
Bulgaria	7.2	19.6	1.5	NO	5 (3)
Croatia	4.2	18.4	1.5	NO	3 (2)
Hungary	9.8	17.5	1.5	NO	3 (2)
Poland	38.0	14.9	1.3	NO	20 (13)
Romania	19.9	16.5	1.3	NO	10 (6)
Slovenia	2.1	17.5	1.6	PARTIAL	4 (3)
East Countries, total					45	40%
Greece	10.8	20.5	1.8	NO	4 (3)
Israel	8.5	10.3	1.1	NO	7 (5)
Italy	60.6	21.4	2.1	NO	8 (5)
Malta	0.4	17.9	1.3	NO	1 (1)
Spain	46.4	18.1	1.8	NO	6 (4)
Turkey	77.7	7.7	0.4	NO	3 (2)
Mediterranean Countries, total					29	66%
Total					155	57%

Legend: Demography, dementia prevalence, prescription rules for primary care physicians, dementia cases stories and proportion of typical dementia drug treatment from 25 countries in the EGPRN. Data on dementia prevalence by Prince et al. 2013 and on dementia drug prescribing rules by the Alzheimer Europe Association, 2012.

Figure 1. Importance of predictors of primary care physician involvement in dementia work-up and treatment. Degree of involvement is dichotomised into two groups by a two-step cluster analysis. Cluster analysis is an exploratory method to identify structures within the data such as homogenous groups of cases if grouping is not previously known. ‘Exploratory’ means that it makes no distinction between dependent and independent variables. We used the SPSS Version 22 two-step cluster analysis. The most important predicting variables to allocate the informants in the two groups were ‘permissiveness to prescribe dementia drugs’ (Predictor importance PI = 1) and ‘country’ (PI = 0.61). All the other variables had a PI of < 0.02. Permissiveness: official permissiveness to prescribe typical dementia drug reimbursed by the local health care system. Country: country of the case and his/her primary care physician. Appropriate treatment: appropriate treatment according to the dementia guidelines and the label indication. Age: age of the case in years. Gender: gender of the case. MMSE: mini mental state examination. Number of words in case: word count in the case description.

Table 3. Dementia drug treatment stratified by diagnostic group.

	Dementia Drug		Total number of patients
Diagnosis	No regular dementia drug	Regular dementia drug (acetylcholinesterase inhibitors/memantine)
No diagnostic information available	4	0	4
Alzheimer’s Disease/Major Neurocognitive Disorder (*)	9	31	40
Vascular Dementia /Major Neurocognitive Disorder (†)	12	4	16
Major Neurocognitive Disorder unspecified (β)	19	31	50
Normal Pressure Hydrocephalus	1	0	1
Mild Neurocognitive Disorder unspecified	5	0	5
Major Neurocognitive Disorders, mixed aetiologies	10	22	32
Fronto-Temporal Dementia (β)	3	1	4
Dementia of Lewy Body	1	0	1
Alzheimer’s Disease/ Mild Neurocognitive Disorders	2	0	2
Total	66	89	155

Legend: Memantine and acetylcholinesterase inhibitors were considered appropriately used if they were prescribed to patients with Alzheimer’s disease (AD), mixed dementia (if AD was considered one of the components), dementia with Lewy bodies or Parkinson’s disease dementia. The indication for the treatment was considered correct regardless of dementia stage (i.e. memantine was not restricted to moderate to severe AD and acetylcholinesterase inhibitors was not restricted to mild to moderate AD) [21].

(*) = appropriate prescription of acetylcholinesterase inhibitors/memantine.

(β) = questionable prescription of acetylcholinesterase inhibitors/memantine.

(†) = inappropriate prescription of acetylcholinesterase inhibitors/memantine.

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Data availability statement

All data generated or analysed during this study are included in this published article and its supplementary information files as well as in reference [10]. The datasets analysed during this study will be available from the corresponding author on reasonable request.