Abstract
Background:
To provide an optimal care for persons with dementia (PWD), their individual unmet needs have to be identified and comprehensively addressed.
Objectives:
Present analyses aim to describe the number and types of unmet needs of German primary care patients screened positive for dementia and factors associated with the number of unmet needs.
Methods:
DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania) is a general practitioner-based, cluster-randomized controlled intervention trial. Analyses are based on the baseline data of 227 PWD (≥70 years, living at home) of the intervention group who had screened positive for dementia (DemTect<9) and received a standardized computer-assisted needs assessment.
Results:
PWD had on average 8.77±5.04 unmet needs (Range = 0–31). More than 90% of the PWD had three or more unmet needs. Unmet needs were identified across all predefined 26 subcategories. The majority of unmet needs occurred in the domains “nursing treatment and care” (38%), “social counseling and legal support” (20%), and “pharmacological treatment and care” (15%). More impairment in the activities of daily living was the only factor that was significantly associated with a higher number of unmet needs, independent of age, gender, living situation, presence of an informal caregiver, cognitive impairment, and depression.
Conclusions:
Present results demonstrate that community-dwelling PWD had a broad range of varying unmet needs. These findings emphasize the importance of a comprehensive needs assessment that allows the identification of individual needs as the basis for a tailored intervention— such as Dementia Care Management— that can address these needs.
INTRODUCTION
About three-quarters of the estimated 1.5 million persons with dementia (PWD) living in Germany are cared for at home [1, 2]. Optimal treatment and care are needed to avoid or at least delay institutionalization. Gaugler and colleagues [3] analyzed the impact of unmet care needs on key outcomes in dementia and found that a greater number of unmet needs were predictive for nursing home placement and death. Neurodegenerative diseases are very complex and not only affect cognitive functions, but also physical functions, medical health, psychological well-being, and social integration. Furthermore, they also affect families, health care systems, and legislation. These complex consequences of neurodegenerative diseases can lead to a number of unmet needs from the side of the PWD that should be identified and comprehensively addressed in order to provide an optimal care for PWD.
There are different approaches to identify dementia-related needs. A common way is the assessment of unmet needs using a standardized questionnaire such as the John Hopkins Dementia Care Needs Assessment (JHDCNA) [4] or the Camberwell Assessment of Need for the Elderly (CANE) [5]. The JHDCNA is a multi-dimensional tool. It comprises 15 need domains with 77 items that are assessed by a clinician after a home visit. The CANE contains just 24 items and records the staff, caregiver, and patient view. Black and colleagues [6] utilized the JHDCNA and found 7.7±4.8 unmet needs per PWD living at home in the United States (US), most common in the domains of personal and home safety, general health and medical care, meaningful activities, legal issues, advanced care planning, and evaluation and diagnosis of dementia. The number of unmet needs was significantly associated with higher cognitive function, lower income, less impairment in activities of daily living (ADL), and more symptoms of depression. Johnston and colleagues [7] found comparable results using the JHDCNA in community-dwelling PWD in the US, they identified 6.6±3.5 unmet needs per person. These needs occurred most frequently in the domains dementia workup, general health, medical care, safety, assistance with ADL impairments, and meaningful activities. In contrast, Miranda-Castillo and colleagues [8] and van der Roest and colleagues [9] found considerably less unmet needs per community-dwelling PWD in the United Kingdom (2.6) and the Netherlands (0.5) using the CANE. The pronounced differences in the number of identified unmet needs might be attributable to the different instruments used for the needs assessment, because they contain different domains and numbers of items [10].
Another method to identify unmet needs of PWD was developed in the context of the study DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania). DelpHi-MV is an ongoing general practitioner (GP) based cluster-randomized intervention trial to evaluate a collaborative Dementia Care Management - program that aims to provide “optimum care” to community-dwelling PWD and their caregivers in Germany [11, 12]. Dementia Care Management is initiated and coordinated by Dementia Care Managers (DCM), qualified nurses who received a dementia-specific training [13]. To define “optimum care”, the “DelpHi-Standard” has been developed, mainly based on German guidelines for evidence-based diagnostic and treatment of dementia [14, 15]. The “DelpHi-Standard” describes eight domains: Nursing treatment and care, social counseling and legal support, pharmacological treatment and care, social integration, medical diagnosis and treatment, special therapies, technical assistance/telemedicine, and caregiver support and education (for details see Eichler and colleagues [12]). The Dementia Care Management - program aims to address unmet needs in order to meet the “DelpHi-Standard of optimum care”. Therefore, the DCM perform a comprehensive needs assessment to identify individual unmet needs, compile a tailored intervention plan, and aim to address these needs in close cooperation with the treating GP. The assessment of unmet needs is not based on a single instrument. Instead, the DCM conducts a comprehensive standardized computer-assisted assessment that includes a battery of standardized questionnaires and tests (e.g., Resource Utilization in Dementia [16]; Standardized Assessment of Elderly People in Primary Care [17]); Mini-Mental State Examination (MMSE) [18]; Bayer Activities of Daily Living Scale [19]; Geriatric Depression Scale [20]). A detailed description of the entire assessment is given here [12]. The DCM are not restricted to the predefined needs assessment. If they identify additional unmet needs that should be addressed in the course of the Dementia Care Management - program, they document it and include a corresponding intervention task into the intervention plan.
The needs assessment is conducted in the intervention group only. The evaluation of the Dementia Care Management - program will be based on the comparison of the primary outcomes between the intervention and control group (quality of life, neuropsychiatric symptoms, caregiver burden, potentially inappropriate drugs, and anti-dementia drug treatment). However, because there is no primary data available regarding unmet needs of community-dwelling primary care patients with dementia in Germany, the present analysis aims to describe the number and types of unmet needs among this population. In addition, we will examine socio-demographical (age, gender, living situation, and presence of an informal caregiver) and clinical characteristics (cognitive and functional impairment, depression) associated with the number of unmet needs. The clinical variables under examination were selected according to the variables that proofed to be associated with the number of unmet needs in a previous study [6].
MATERIALS AND METHODS
Study design
The present cross-sectional analyses are based on data derived from the GP-based cluster-randomized controlled intervention trial DelpHi-MV. The details of the study are described elsewhere [11]. Eligible primary care patients (≥70 years, living at home, screened positive for dementia (DemTect-score <9) [21]) were informed by their GPs about the study, invited to participate, and asked to provide a written informed consent. If the patient named a caregiver, he or she was also asked to participate in the study. When the patient was unable to give an informed consent, his or her legal representative was asked to sign the consent form on his or her behalf (as approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11). Study enrollment started on January 1, 2012 and ended on December 31, 2014. The study is registered as clinical trial (ClinicalTrials.gov Identifier: NCT01401582).
Procedures and instruments
A standardized, computer-assisted needs assessment (intervention group only) was conducted in a face-to-face interview at the participants’ homes. To support the systematic identification of unmet needs according to the “DelpHi-Standard” a computerized Intervention-Management-System (IMS) has been developed, implemented and evaluated [22]. IMS is a rule-based expert decision support system that matches the individual characteristics of the PWD to the computerized knowledge base. An unmet need is defined as (1) a need that was either identified automatically by the IMS and confirmed by the DCM or (2) additionally identified by the DCM as a need that should be addressed in the course of the Dementia Care Management. These additional self-assigned intervention tasks must comply with the principal requirements of the DelpHi-study (not to double an established service and not to violate the autonomy of the PWD). They were documented in the computer-system as a part of the tailored intervention plan. The different instruments of the needs assessment were completed either by the PWD, the DCM, or the caregiver, depending on the respective instrument (self- or proxy assessment), the ability of the PWD to answer the questions, and the availability of a caregiver (for details see [12]). All data were entered directly into a tablet-PC by the DCM and immediately processed [23]. Present analyses include unmet needs of the domains “nursing treatment and care”, “social counseling and legal support”, “pharmacological treatment and care”, “social integration”, “medical diagnosis and treatment”, “special therapies”, and “others”. The category “others” contains individual needs of PWD that were identified by the DCM but did not match any of the predefined categories. The action field “technical assistance/telemedicine” is not yet applicable within the Delphi-trial, and the action field “caregiver support and education” does concern the unmet needs of the caregiver only; thus they were excluded from the analyses.
For sample description we analyzed age, gender, living situation (alone /not alone), and presence of an informal caregiver (yes /no), cognitive and functional impairment, depression, and formal dementia diagnosis (ICD-10). The cognitive status was assessed using the German version of the MMSE [18]. For analyses we used the total score as well as a categorization that indicates “no cognitive impairment” (score, 27–30), “mild” (score, 20–26), “moderate” (score, 10–19), and “severe cognitive impairment” (score, 0–9). The functional impairment was assessed using the Bayer Activities of Daily Living Scale [19], which yields a mean score between 1 and 10, where 10 indicates the highest possible impairment. Depression was assessed using the dichotomized score of the Geriatric Depression Scale [20] with “no depression” (score, 0–5) versus “depression” (score, 6–15). For all patients who had provided the respective informed consent, the formal medical diagnoses (ICD-10 codes: F00, F01, F02, F03, G30, G31) were retrieved from the medical records in their GPs’ practice.
Study sample
Figure. 1 shows the flow of the study participants through each stage of the DelpHi-study. The present analyses are based on the data of 227 PWD of the intervention group who have completed a computer-assisted needs assessment as described above. N = 96 PWD of the intervention group did not receive a computer-assisted baseline assessment because the IMS was developed and tested over the course of the DelpHi-trial and implemented into the study routine 12 months after the beginning of the study [22]. Differences between PWD with and without completed computer-assisted needs assessment are summarized in supplementary Table 1. PWD who were excluded from the analysis because of missing needs assessment were statistically significantly more frequently female (64.4% versus 53.3% ; Fisher’s exact test: p = 0.012) and less severely functionally impaired (M = 3.3, SD = 2.4 versus M = 4.2, SD = 2.7; Welch’s t-test: t (438.30) = 3.58, p < 0.001).
Statistical analyses
We summarized the variables that describe the sample using descriptive statistics. To test for differences between PWD who were included into the analyses and those who were not, we used Welch’s t-test (robust to unequal variances) for continuous and Fisher’s exact-test for categorized variables. To analyze the univariate associations of socio-demographical and clinical characteristics with the number of unmet needs, we used Welch’s t-test and Pearson’s product-moment correlation. For multivariate analyses, we fitted a conditional negative binomial regression model including age, gender, living alone, presence of an informal caregiver, cognitive and functional impairment, and depression with random effects for the panel variable (GP practice). N = 18 subjects were excluded from multivariate analysis because of missing data (subjects were not able to answer the questions due to the severity of dementia or subjects refused to answer for other reasons). There was no statistically significant difference in the number of unmet needs between included and excluded subjects (M = 8.7, SD = 4.7 versus M = 10.1, SD = 7.9; Welch’s t-test: t (18.20) = 0.77, p < 0.450). Because a certain proportion of the study participants might have been screened false-positive, we conducted a multivariate sensitivity analysis in which n = 50 subjects with a MMSE-score≤27 (assessed at baseline) were excluded. Statistical analyses were performed by STATA 13 [24].
RESULTS
Table 1 presents the socio-demographic and clinical characteristic of the study sample.
A total of 1,991 unmet needs were identified for 227 PWD from the intervention group. Each PWD had on average 8.77 (SD = 5.04) unmet needs that should be addressed in the course of the Dementia Care Management. The number of unmet needs per PWD ranged from 0 to 31 unmet needs. Only one person had no unmet need, whereas 93% of the PWD had three or more unmet needs, and 30% of the PWD had more than 10 unmet needs.
The distribution of the unmet needs across different domains and subcategories is shown in Table 2. The majority of unmet needs occurred in the domains “nursing treatment and care” (38%), followed by “social counseling and legal support” (20%) and “pharmaceutical treatment and care” (15%). The most common individual needs concerned the improvement of mobility/the reduction of the risk of fall (9%), the establishment of the power of attorney/the provision of a legal representative (8.6%), and the increase of physical activities (6.7%).
The results of the univariate analyses showed that the only factor significantly associated with the number of unmet need was higher ADL-impairment (r = 0.17 (small effect size); p = 0.011; see Table 3).
The result of the multivariate analysis confirmed this finding independent of the variables age, gender, cognitive impairment, living alone, having an informal caregiver, and depression (b = 0.05; p < 0.001; 95% CI: 0.03 to 0.08; significant regression model: F (7, 43) = 3.02; p = 0.011; see Table 4).
The results of the sensitivity analysis in which n = 50 subjects with MMSE ≥27 were excluded did not differ from the initial analysis. The total number of unmet needs was 8.75±4.95 and the ADL-impairment was the only factor independently associated with a higher number of unmet needs (b = 0.05; p < 0.002; 95% CI: 0.02 to 0.08; significant regression model: F (7, 41) = 2.25; p = 0.0496; (see Supplementary Table 2).
DISCUSSION
To our knowledge, this is the first study that provided empirical data regarding the unmet needs of community-dwelling persons with dementia in the German primary care sector.
Our findings show that community-dwelling primary care patients screened positive for dementia had on average more than eight unmet needs (8.8±5.0) that should be addressed in order to provide optimum care. The number of unmet needs identified by a comprehensive standardized computer-assisted needs assessment ranged from none to the maximum of 31 unmet needs per PWD. Only one person had no unmet need, whereas 93% of the PWD had three or more unmet needs, and 30% of the PWD had even more than 10 unmet needs. The majority of unmet needs were detected in the domains “nursing treatment and care”, “social counseling and legal support”, and “pharmacological treatment and care”. The most common individual needs that should be addressed in the course of the Dementia Care Management - program concerned limitations in mobility/risk of fall (9%), the missing power of attorney or legal representative (8.6%), and the lack of physical activities (6.7%). Overall, unmet needs were identified across all domains and subcategories that were defined in the “DelpHi-Standard of optimum care” [12].
The number of unmet needs found in the present study are slightly higher than the findings for community-residing PWD in the US. Black and colleagues [6] found 7.7±4.8 unmet needs per PWD, and Johnston and colleagues [7] reported 6.6±3.5 unmet needs per PWD. Both studies utilized the JHDCNA [4] to complete the needs assessment that includes 77 items. The standardized computer-assisted needs assessment in the DelpHi-trial is more comprehensive. It allows an individual needs assessment according to the “DelpHi-Standard of optimum care” that is not just based on a single questionnaire but on a battery of standardized questionnaires and tests and includes self as well as proxy ratings. The validity of this assessment is likely to be high, because the results of standardized instruments (e.g., for cognitive impairment, functional impairment and depression) are used to identify unmet needs.
Furthermore, the needs assessment allows the documentation of additional unmet needs that are not predefined by the assessment tool (see Methods section).
The only factor that was significantly associated with the number of unmet needs was higher impairment in ADLs –independent of the variables age, gender, cognitive impairment, living alone, having an informal caregiver, and depression. It seems quite self-evident that the number of needs increases with the decline of the functional status. However, this finding is not in line with the results of Black and colleagues [6] who showed that the number of unmet needs was significantly associated with less impairment in ADLs. Surprisingly, we found that neither cognitive impairment nor living alone, the presence of an informal caregiver, age, gender, or depression was associated with the number of unmet needs. These outcomes did not confirm the findings of Black and colleagues who reported that the number of unmet needs was significantly associated with higher cognitive function and more symptoms of depression. These differences in the outcomes might have occurred due to differences in the sample characteristics; compared to the sample of Black and colleagues, the subjects of the present sample were less frequently female (53% versus 65%), more frequently living alone (51% versus 19%), and less severely cognitively impaired (MMSE: 22.1±5.3 versus 17.7±7.6).
However, the present as well as previous research [6, 7] have clearly demonstrated that community-dwelling persons with dementia do have a broad range of unmet needs with varying individual patterns of needs. Therefore, these findings emphasize the importance of a comprehensive needs assessment that allows the identification of all unmet needs of a person as the basis for a tailored intervention that can address these individual needs.
Limitations
Dementia is a complex disease and often associated with a variety of comorbid disorders. At the same time, the individual living conditions of the PWD are very diverse. Therefore, it is not possible to detect every existing unmet need. The needs assessment is partly based on self-reports. Considering the cognitive impairment of the subjects the information assessed may not always be valid and complete. In addition, unmet needs that cannot be addressed in the course of the Dementia Care Management - program were not documented. Considering these circumstances, the number of unmet needs might have been underestimated. Unmet needs that were not identified will not be addressed in the course of the Dementia Care Management - program. This could have an impact on the effect of the intervention. On the other hand the PWD who were excluded from the present analyses because they did not complete a computer-assisted needs assessment were significantly more often female and less impaired in their ADLs. Because the number of unmet needs was associated with higher ADL-impairment we might have overestimated the number of unmet needs somewhat.
The comparability of our results to the findings of others studies is limited. The computerized IMS allows a comprehensive needs assessment. However, it has been specifically developed for Dementia Care Management in the context of the DelpHi-trial [22]. Unlike others instruments for needs assessment (e.g., the JHDCNA [4] or the CANE [5]), it is not transferable to other studies.
A certain proportion of the study participants might have been screened false-positive. Twenty three percent of the primary care patients who had screened positive for dementia (DemTect-score <9) were not categorized as cognitively impaired according to their MMSE-score (27–30; assessed at baseline). Because the MMSE is less sensitive for detecting milder forms of cognitive impairment (43% –46%) [25] than the DemTect (80% –100%) [21, 26], the rate of false-positive screenings might be lower than 23% . However, the results of the sensitivity analysis in which subjects with a MMSE-score≥27 were excluded did not differ from the initial analysis.
Further research
Dementia Care Management has been suggested as a method to address the wide variety of individual needs in primary care patients with dementia. Collaborative care management programs that are intensive and ensure a high level of integration between health and social service organizations have been shown to be clinically effective in the US [27]. With DelpHi-MV, we developed and implemented a Dementia Care Management program to provide an “optimum care” to community-dwelling PWD and their caregivers in Germany [12]. The analyses of our follow-up data will reveal to what extent the identified unmet needs will actually be addressed in the course of the Dementia Care Management. In addition we will be able to determine the impact of the intervention on outcomes such as the quality of life, neuropsychiatric symptoms, caregiver burden, and drug-related problems.
Footnotes
ACKNOWLEDGMENTS
The DelpHi-trial was developed and established as a result of input from the following experts in their respective fields: Aniela Angelow, Grit Aßmann, Georgia Böwing, Thomas Fiß, Daniel Fredrich, and Leonore Köhler. An experienced field study team provided support with data collection and data management: Ines Abraham, Kerstin Albuerne, Vaska Böhmann, Kathleen Dittmer, Jana Hubert, Ulrike Kempe, Viktoriya Kim, Julius Krause, Andrea Pooch, Saskia Moll, Sabine Schmidt, and Christine Winckler. We thank all participating patients and their caregivers as well as the participating general practitioners for their most valued collaboration.
The study is funded by the German Center for Neurodegenerative Diseases (DZNE) and the University Medicine Greifswald.
