Background
In 2016, approx. 1.63 million people with dementia aged 65 and older were living in Germany [
1]. About 50–70% of those affected suffer from Alzheimer’s disease, for which age is the strongest risk factor. In the group of people aged 65 and older, the prevalence of Alzheimer’s disease is 7.0%, with a duplication of prevalence rates in five-year increments for the age groups to 90 years old [
2,
3]. Against the backdrop of demographic change, estimates predict an increase in the number of people with dementia to over two million by the year 2050 [
2‐
5].
Long-term care policies in Germany
To face these challenges, long-term care (LTC) in Germany is financed by social and mandatory private LTC insurance. Social LTC insurance covers most parts of the population (approx. 90%). In order to claim LTC benefits, insurants have to file an application to their insurance company. Then, an independent organisation assesses insurants’ eligibility for LTC benefits based on legally defined criteria focussing on physical need of help with activities and instrumental activities of daily living for at least 6 months [
6‐
8]. It was only in 2017 that cognitive impairment has been added to these criteria [
9].
Based on the amount of help needed, insurants are classified into a level of care dependency (LoCD). The LoCD determines the amount of benefits insurants can claim. LTC insurance is designed as part insurance cover, out-of-pocket payments are intended [
7,
8].
The benefit package includes the following: home care in-kind benefits (for the remainder of this article referred to as ‘outpatient care’), home care in-cash benefits (hereafter referred to as ‘informal care’), inpatient care, day and night care (hereafter referred to as ‘respite care’, see Table
1), low-threshold support services, and professional caregivers for when an informal caregiver is on vacation [
7].
Table 1German policies and definitions of terms specific to German long-term care
Outpatient care | Outpatient care includes nursing, care and support services, and support with housekeeping |
Informal care | Informal care includes in-cash benefits to compensate informal caregivers. |
Respite care | Respite care is a term to describe any kind of temporary provision of care in order to give the caregiver temporary relief from caregiving [ 10]. In this article and based on German LTC insurance understanding, we define respite care as adult day care and adult night care, provided in a dedicated institution. |
Levels of care dependency for people with dementia in 2013 | In the year 2013, there were three LoCD and an additional LoCD 0 for people with a limited capability to manage their everyday life. With a higher LoCD the claim for benefits increases. A LoCD 0 does not allow claiming all kinds of LTC services. In the year 2013, amongst others, the following services were available in the different LoCD: LoCD 0: in-kind services in-cash services LoCD 1–3: in-kind services, in-cash services, nursing home care, respite care Hardship case: Hardship cases are people in LoCD 3 who receive more benefits due to severe need for LTC. |
Long-Term Care Benefits Amendment Act | Entry into force: January 2002 Changes for people with dementia: first time possibility to claim financial aids through LTC insurance by people with dementia to use for care and support services; introduction of the so-called ‘LoCD 0’ [ 12] |
Long-Term Care Further Development Act | Entry into force: July 2008 Changes for people with dementia: increase in the amount of benefits to claim [ 13] |
Act to Realign Long-Term Care | Entry into force: January 2013 Changes for people with dementia: first time possibility to claim in-kind or in-cash benefits in home care for people with dementia in a LoCD 0 [ 14] |
1st Act to Strengthen Long-Term Care | Entry into force: January 2015 Changes for people with dementia: first time possibility to claim respite care benefits, short-term care, and substitutional care (for when the informal caregiver is on vacation) [ 15] |
2nd Act to Strengthen Long-Term Care | Entry into force: January 2017 Introduction of the new definition of the need of long-term care, considering not only physical but also cognitive impairments [ 9] |
Table
1 provides an overview on German LTC terms and reforms.
Future challenges in dementia care
A major challenge in dementia care is the question of how to provide optimal care for the increasing number of people with dementia. A large part of people with dementia choose to live in their own home and claim home care benefits, which is in line with the government aim “outpatient before inpatient” [
16]. However, the potential of informal care is decreasing due to changing family- and acquisition structures [
3]. Increasing severity of dementia often comes along with symptoms such as aggressiveness or wandering, exceeding the amount of support that informal caregivers are able to provide. Therefore, people with severe dementia tend to utilise professional care, often in institutional settings [
3,
17‐
19] However, Germany is facing an increasing shortage of qualified personnel in nursing [
20].
These challenges are especially affecting rural areas, as the elderly population tends to remain in rural areas whereas younger people move to urbanized areas. There are several studies that address regional differences in LTC supply and utilisation in Germany [
3,
21‐
23] and internationally, especially in territorial states such as Canada, the United States or Australia [
24‐
27]. For example, Mitchell et al. found that older adults in urban areas were more likely to use home care services [
27]. Rudel et al. found that older adults living in rural areas perceive a lack of LTC supply [
28]. Rothgang et al. found that the supply of nursing home beds and the number of staff in nursing homes and outpatient care services differs between districts in Germany. Furthermore, there are differences in the utilisation and capacity of nursing homes and outpatient care services, respectively [
21]. There is evidence that care supply affects LTC service utilisation. Pilny and Stroka found that the supply of nursing home beds is linked to an increasing utilisation of nursing home care whereas the utilisation of informal care decreases [
29]. Rothgang et al. showed that both inpatient and outpatient care supply affect utilisation, respectively. Furthermore, they identified unemployment as a factor that affects the utilisation of informal care [
21].
Therefore, we expected that there are regional differences in the utilisation of LTC services by people with dementia that depend on not only individual characteristics, but also on regional factors. However, in Germany little is known on the influence of individual and regional factors on care utilisation. The aim of this study therefore is to provide insight into individual and regional characteristics that influence the utilisation of LTC by people with dementia.
Results
Study population
The study population comprised 79,349 individuals. Two thirds of the study population were female (67.1%). The mean age was 82.8 years (standard deviation (SD) 7.06) and the oldest included person was 107 years. 63.1% were in need of LTC and therefore classified in a LoCD, and 51.6% claimed any of the LTC services included. 36.9% of the study population were not in need of LTC. Most included individuals lived in an urban area. Table
2 gives an overview on the results of the descriptive analysis of individuals.
Table 2Characteristics of the study population
Agea | 82.8 (7.06); 65–107) |
Age in categories [n(%)] |
65–69 years | 2820 (3.6) |
70–74 years | 7500 (9.5) |
75–79 years | 15,294 (19.3) |
80–84 years | 20,161 (25.4) |
85–89 years | 19,289 (24.3) |
90–94 years | 11,571 (14.6) |
95 years and older | 2714 (3.4) |
Sex [n(%)] |
Male | 26,115 (32.9) |
Female | 53,234 (67.1) |
LoCD [n(%)] |
No LoCD | 29,263 (36.9) |
LoCD 0 | 2444 (3.1) |
LoCD 1 | 18,604 (23.4) |
LoCD 2 | 19,319 (24.3) |
LoCD 3 | 9609 (12.1) |
Hardship case | 110 (0.1) |
Comorbidity (CCI) [n(%)] |
none | 19,710 (24.8) |
mild | 24,783 (31.2) |
moderate | 18,055 (22.8) |
severe | 16,801 (21.2) |
Area [n(%)] |
City district | 11,467 (14.5) |
Urban district | 54,942 (69.2) |
Rural district | 12,940 (16.3) |
No LTC services [n(%)] | 38,388 (48.4) |
Nursing home care [n(%)] | 16,159 (20.4) |
Outpatient care [n(%)] | 852 (1.1) |
Informal care [n(%)] | 24,281 (30.6) |
Respite care [n(%)] | 2812 (3.5) |
The administrative prevalence of dementia in people insured with the AOK Baden-Wuerttemberg and aged 65 and older was 9.08%. The prevalence in females (10.2%) was higher than the prevalence in men (7.4%). The median for documented comorbidities lied at a CCI of 2, which means that half of the study population had no or little documented comorbidities. The most common documented comorbidities included hypertension, disorders of lipoprotein metabolism, Diabetes mellitus type 2, urinary incontinence, depressive episode, heart failure, chronic ischemic heart disease, back pain, gonarthrosis, and accommodation and refraction errors.
From the districts included, 8 were district-free cities, 27 are urban districts and 9 were rural districts. Table
3 shows the results of the descriptive analysis of districts.
Table 3Characteristics of districts
Area [n (%)] |
City district | 8 (18.2) |
Urban district | 27 (61.4) |
Rural district | 9 (20.5) |
Unemployment rate a | 4.1 (1.1); 2.8–8 |
Employment rate a | 81.9 (5); 59.7–87.1 |
Mean household income a | 1889.3 (271.6); 1633.7–3466.9 |
Full nursing home spots available ab | 49.1 (9.1); 35–69.8 |
Respite care spots available ab | 3 (1.2); 1–6.5 |
Respite day care spots available ab | 3 (1.2); 1–6.1 |
Number of outpatient care services ab | 0.6 (0.1); 0.3–0.9) |
Outpatient capacity utilisation rate ab | 56.7 (12.6); 32.6–90.7 |
Nursing home capacity utilisation rateab | 88.8 (3.4); 80.6–95.9 |
Respite care capacity utilisation rate ab | 133.3 (31.5); 72.6–216.3 |
Inpatient staff ab | 55.6 (10.6); 38.5–85.4 |
Outpatient staff ab | 28.4 (5.8); 18.9–45.6 |
The influence of individual and regional characteristics on the utilisation of long-term care services
About one fifth (20.4%) of the study population lived in a nursing home, 30.6% were being taken care of by informal caregivers, 1.1% received care services by an outpatient care service and 3.5% utilised respite care. Almost half of the study population (48.4%) did not utilise any of the LTC services mentioned above (Table
2).
In the analysis of LTC utilisation, the null models revealed an intra class correlation (ICC) of 0.062 for the utilisation of nursing home care, an ICC of 0.020 for the utilisation of informal care and an ICC of 0.112 for the utilisation of respite care. This shows the necessity of computing multilevel analyses in order to identify those regional characteristics that cause variance. Therefore, multilevel models were constructed for the outcomes nursing home, informal care, and respite care (see Table
4). No model was computed for the utilisation of outpatient care services as the comparatively low number of cases (
n = 852) indicates that it does not play a major role in dementia care. Unemployment rate, outpatient capacity utilisation rate, nursing home capacity utilisation rate, outpatient staff, and inpatient staff did not have a significant effect on care utilisation and therefore were excluded from the final models.
Table 4Multilevel analysis of the utilisation of nursing home care, informal care and respite care
Age | 1.005 | 0.02 | [1.001;1.009] | 0.984 | 0.00 | [0.981;0.988] | 0.962 | 0.00 | [0.956;0.969] |
Sex (reference: male) | 1.404 | 0.00 | [1.315;1.499] | 0.850 | 0.00 | [0.804;0.899] | 1.080 | 0.12 | [0.978;1.193] |
LoCD (reference: LoCD 0/ LoCD 1b) |
LoCD 1 | – | – | – | 0.384 | 0.00 | [0.339;0.436] | – | – | – |
LoCD 2 | 2.601 | 0.00 | [2.442;2.770] | 0.368 | 0.00 | [0.324;0.418] | 1.622 | 0.00 | [1.475;1.782] |
LoCD 3 | 3.607 | 0.00 | [3.345;3.889] | 0.307 | 0.00 | [0.268;0.352] | 0.807 | 0.00 | [0.702;0.929] |
Hardship case | 5.723 | 0.00 | [3.359;9.751] | 0.144 | 0.00 | [0.072;0.287] | 0.206 | 0.12 | [0.207;1.569] |
CCI categories (reference: no comorbidity) |
Mild | 1.049 | 0.20 | [0.975;1.129] | 1.058 | 0.09 | [0.990;1.130] | 1.081 | 0.18 | [0.963;1.212] |
Moderate | 1.061 | 0.14 | [0.979;1.148] | 1.134 | 0.00 | [1.056;1.218] | 0.945 | 0.38 | [0.831;1.074] |
Severe | 1.104 | 0.01 | [1.017;1.200] | 1.261 | 0.00 | [1.171;1.357] | 0.880 | 0.06 | [0.770;1.005] |
Area (reference: City district) |
Urban districts | 1.335 | 0.24 | [0.817;2.181] | 1.360 | 0.05 | [0.992;1.864] | 1.566 | 0.00 | [1.116;2.196] |
Rural districts | 1.515 | 0.12 | [0.892;2.573] | 1.713 | 0.00 | [1.220;2.406] | 2.036 | 0.00 | [1.417;2.926] |
Mean household income | 1.000 | 0.71 | [1.000;1.001] | 1.000 | 0.86 | [1.000;1.000] | 1.000 | 0.45 | [1.000;1.001] |
Nursing home care supply | 1.003 | 0.76 | [0.982;1.025] | 0.992 | 0.27 | [0.979;1.006] | 0.986 | 0.06 | [0.972;1.001] |
Respite care supply | 0.924 | 0.25 | [0.808; 1.057] | 0.954 | 0.28 | [0.876;1.040] | 1.173 | 0.00 | [1.075;1.280] |
Respite care capacity utilisation rate | 0.995 | 0.06 | [0.990;1.000] | 0.997 | 0.09 | [0.994;1.001] | 0.998 | 0.19 | [0.994;1.001] |
ICCa | 0.062 | 0.00 | | 0.020 | 0.00 | | 0.112 | 0.00 | |
n | 54,547 | 62,699 | 41,200 |
The analyses for the outcome nursing home (n = 16,159) showed significant effects for almost all independent variables on an individual level. Women were 1.4 times more likely to live in a nursing home than men. Furthermore, the likelihood to live in a nursing home was higher with increasing age (odds ratio (OR) =1.005 per year), a high LoCD (for example LoCD 3 OR = 3.607 as compared to LoCD 1) and severe comorbidity (OR = 1.104 as compared to no comorbidity). Other categories of the CCI were not significantly different from having no comorbidities. When controlling for variables on an individual level, no significant effect was found for variables on a district level.
All variables on an individual level showed a significant effect on informal care. The likelihood to be taken care of by informal caregivers decreased with higher age (OR = 0.984), a high LoCD (OR = 0.307 for LoCD 3 as compared to LoCD 0), and was higher in men than in women (OR = 0.850). However, the likelihood increased with severe comorbidity (OR = 1.261 for severe comorbidity as compared to no comorbidity). Additionally, people living in rural districts were more likely to utilise informal care than people living in city districts (OR = 1.713).
The analysis of respite care shows a decreasing likelihood of utilisation with increasing age (OR = 0.962). When considering levels of care, the likelihood of utilisation was higher in LoCD 2 compared to LoCD 1 by the factor 1.622. In LoCD 3 compared to LoCD 1 however, the likelihood decreased (OR = 0.807). In addition, people with dementia with severe comorbidity were less likely to utilise respite care than those with no comorbidity (OR = 0.880). No significant effect was found for sex and other categories within the levels of care and comorbidity. However, several district level factors had a significant effect on the utilisation of respite care. The likelihood for utilisation was higher in both urban and rural areas than in city districts, respectively (OR = 1.566 for urban districts and OR = 2.036 in rural districts). Furthermore, an effect of the care supply on utilisation was found: an increasing supply came along with higher utilisation (OR = 1.173).
Discussion
The intracluster correlations demonstrated differences between regions in the utilisation of LTC. These differences were largely explained by the composition of the population within the regions. An exception was the utilisation of respite care, which was higher in regions with higher supply of such care.
The prevalence rate of dementia for people aged 65 and older was 9.08% in our study and thereby approximately two percentage points higher than older studies on dementia prevalence [
3,
41,
42]. This may be explained by the fact that the meta-analyses by Bickel and Prince et al. included studies mostly conducted before the year 2000. For instance, the prevalence rates by Doblhammer et al. were based on data from the year 2007.
The increasing utilisation of formal care with higher age reflects the results from previous studies [
18,
43]. Furthermore, our results show lower informal care utilisation with higher age. Other studies indicate an increase in self-reported informal care time with higher age [
43]. In our population, informal care was measured based on claims-data instead of care time. As the option for financial support of informal care was only introduced in 2013, the rather younger people with dementia used this option first rather than older people with a possibly longer course of disease who tend to utilise more formal care forms. Also, women tend to be cared for in formal care. This could be explained by studies that show that women are often older and without a spouse [
3,
44].
Our results show that approximately two thirds of the study population were eligible to claim LTC insurance benefits, but only half of the study population utilised any of the LTC services included in the analyses. Schulze et al. [
45] present results showing that approx. 70% of people with early stages of dementia were not in need of LTC. Schwarzkopf and colleagues show that increasing severity of dementia leads to an increasing utilisation of formal care services [
46]. People with dementia with a low LoCD are possibly people with mild dementia and are in need of other support services rather than those LTC services considered in this study.
Concerning regional factors influencing LTC utilisation, both Pilny and Stroka [
29] and Rothgang et al. [
21] found an effect of the inpatient and outpatient care supply on care utilisation. However, in our study only utilisation of respite care was affected by care supply. In the other studies, different definitions for the variables were used and the study population did not focus on people with dementia. Furthermore, respite care for people with dementia in a LoCD 0 was only introduced in 2013. Supply of respite care has been relatively low in Germany; its expansion has been pushed by the government, as supply was considered to be too low compared to its demand [
11].
An expected benefit of respite care is delay of nursing home placement, which has been subject of many studies. Weyerer et al. [
47] and Gaugler et al. [
48] suggest that respite care can delay institutionalization. In a systematic review Fields et al. however found such no effect [
49]. Nevertheless, respite care reduces informal caregiver burden [
49,
50]. The German government took this into consideration this by opening the utilisation of respite care to people with dementia in a LoCD 0 with the major LTC reform in 2015.
Some findings differed from previous studies. For instance, Rothgang et al. suggested unemployment rate as an indicator for time resources available for informal care [
21]. We therefore tested whether the unemployment rate had an effect on the utilisation of informal care but no effect was found. Furthermore, our results indicate an effect of rurality on the utilisation of informal and respite care. This differs from the findings of Rothgang et al. [
21] and Donath et al. [
51]. However, when comparing the results, one should consider that Rothgang et al. investigated people in need of LTC in general and not only people with dementia. Contrary to the results of Unger et al. [
52] no effect of income on the utilisation of different care forms was found. However, this must be interpreted with caution as data on income in this study were only available on a regional level. Transferring this effect on individuals could lead to ecological fallacy.
Limitations
This paper provided insight into the influences of individual and regional characteristics on the utilisation of different LTC forms. There are some limitations to consider.
First, the care forms examined in the study do not cover the full spectrum of care options for people with dementia. For instance, care services such as voluntary care were not covered [
23]. Inclusion of further living and care forms in the analyses was not possible due to data availability within the Long-Term Care Statistics.
Second, claims-based data are not collected for academic purposes. Hence, data on an individual level such as socioeconomic status, income or family status are not recorded and validity of dementia diagnoses is limited due to lacking clinical data. Furthermore, claims-based data and ICD-codes do not allow differentiation between different stages of dementia severity. These limitations have already been discussed sufficiently in the literature [
28,
32,
53]. However, the study design using secondary data reduced the risk of selection bias and enabled us to investigate a large study population that included groups that are difficult to access and which could not be achieved using primary collected data. Furthermore, recall bias does not apply to study designs based on administrative data [
53].
Third, the operationalisation of ‘region’ is based on administrative districts which do not necessarily reflect the everyday reality of how health care supply is utilised as in the German health care system care utilisation takes place across regions.
Fourth, as only 44 districts were included in the analysis, only few variables on a district level could be included considering the degrees of freedom.
Lastly, external validity of the results is limited as we only used data from one insurer. The AOK historically insured people from a lower socioeconomic background and its community of insured people can differ from those of other statutory or private health insurance companies [
54,
55]. However, we were able to use a full sample of people with dementia within the AOK which is the biggest health insurer in Germany’s third-largest province.
Conclusion
The analyses in this paper give an overview on LTC of people with dementia in Germany using the example of the federal state Baden-Wurttemberg. Our data suggest that a further expansion of respite care might be necessary, however more recent data on supply and utilisation should be considered.
Secondary data analyses can help to get an initial overview on the state of care of people with dementia. However, in order to map the effects on LTC in a differentiated and realistic manner, further personal characteristics and other care and living forms, such as outpatient flat-sharing communities should be included. Then, differences at a small-area level should be examined and linked with primary data. Ulrich et al. [
56] propose to include appraisal of local stakeholders in health care in order to interpret results against the background of local care structures. In order to increase external validity, analyses using data from more than one health insurance company could be considered. Appropriate indicators should be developed to detect unintentional variation in LTC of people with dementia.
Acknowledgements
We would like to thank Dr. med. Regine Bölter, Dr. Thomas Fritze, Prof. Dr. Kerstin Hämel, Prof. Dr. Peter König, Dr. Beate Radzey, and Prof. Dr. Christian Weidmann for helpful advice and discussions about the reality of dementia care in Germany, data preparation, and validation of claims data. We would also like to thank Markus Qreini for support with data preparation. Furthermore, the data usage grant from the AOK Baden-Wurttemberg for this study is greatly acknowledged.
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