Frontotemporal lobar degeneration (FTLD) is the second-most common cause of young-onset dementia. Personality and behavior changes lead to high caregiver stress and burden, but little support is available. Our aim is to present the evidence on the characteristics, challenges and unmet needs of caregivers as well as on possible interventions.

We conducted a scoping review on caregiver burden using PubMed, Web of Science and ScienceDirect. A total of 69 articles were considered eligible and were analyzed in the present study.

Through the analysis of 69 empirical articles, our results show that caregivers of patients with FTLD are often younger in age, have children and find behavioral disturbances to be the most burdensome. Nine studies assessed the needs of and support for caregivers. Ten studies compared the burden in different forms of FTLD, 19 compared FTLD to other types of dementia, and one compared the caregiver burden between two countries. Eight studies reported on interventions for caregivers or interventions taking burden into account. One study assessed the support structure for caregivers of FTLD patients. Five case reports, eight research overviews and three reviews addressed specific needs and challenges.

Further research should reproduce and validate efficacious interventions and focus on underage children of FTLD patients and findings from non-Western countries. Additionally, support structures for FTLD caregivers should be assessed and extended. Awareness both in the wider population and among healthcare professionals is an urgent need for the future.

Older people have a higher risk of drug-related problems (DRPs). However, little is known about the prevalence of DRPs in community-dwelling people who screened positive for dementia. Our study aimed to determine (1) the prevalence and types of DRPs and (2) the socio-demographic and clinical variables associated with DRPs in people screened positive for dementia in primary care.

The Dementia: life- and person-centered help in Mecklenburg-Western Pomerania (DelpHi-MV) study is a general practitioner (GP)-based cluster-randomized controlled intervention study to implement and evaluate an innovative concept of collaborative dementia care management in the primary care setting in Germany. Medication reviews of 446 study participants were conducted by pharmacists based on a comprehensive baseline assessment that included a computer-based home medication assessment. ClinicalTrials.gov Identifier: NCT01401582.

A total of 1,077 DRPs were documented. In 414 study participants (93%), at least one DRP was detected by a pharmacist. The most frequent DRPs were administration and compliance problems (60%), drug interactions (17%), and problems with inappropriate drug choice (15%). The number of DRPs was significantly associated with the total number of drugs taken and with a formal diagnosis of a mental or behavioral disorder.

Degree of cognitive impairment (MMSE defined) and formal diagnosis of dementia were not risk factors for an increased number of DRPs. However, the total number of drug taken and the presence of a diagnosis of mental and behavioral disorders were associated with an increased total number of DRPs.

Dementia and depression are common syndromes in the elderly. There is lack of knowledge concerning the frequency of depressive symptoms in people with dementia (PWD) and factors associated with depression. The aim of this analysis is to (a) describe the frequency of depressive symptoms in people screened positive for dementia, (b) describe differences between PWD with and without depressive symptoms, and (c) analyze associations between depressive symptoms and other dementia-related variables.

Analyses are based on data of the GP-based intervention trial DelpHi-MV. A sample of 430 (6.29%) people screened positive for dementia in primary care was analyzed regarding depression according to the German version of the Geriatric Depression Scale (GDS, 15-items), demographic variables, and dementia/depression-related variables. Multivariate analyses were conducted to identify factors associated with depressive symptoms.

The mean GDS-score of depressive symptoms in n = 430 PWD was m = 3.21 (SD 2.45) with 67 PWD (15.55%) showing clinically relevant depression (GDS < 5) m = 7.71 (SD = 1.92). A total of n = 72 (16.74%) received a formal diagnosis of depression and n = 62 (14.42%) received antidepressive drug treatment. Depressive symptoms are significantly associated with age (OR = 0.93), functional impairment (OR = 1.36), and quality of life (OR = 0.01, CI: 0.00–0.06).

Our results support previous findings that clinically relevant depressive symptoms are more common in people screened positive for dementia than in the general population and are often missed or mismanaged. Our findings underline the importance of managing quality of life, functional status, or depressive symptoms. Also, the results highlight the benefit of including the partner (and probably other carers) for adequate treatment of PWD.

It is well-known that dementia is undiagnosed, resulting in the exclusion of patients without a formal diagnosis of dementia in many studies. Objectives of the present analyses were (1) to determine healthcare resource utilization and (2) costs of patients screened positive for dementia with a formal diagnosis and those without a formal diagnosis of dementia, and (3) to analyze the association between having received a formal dementia diagnosis and healthcare costs.

This analysis is based on 240 primary care patients who screened positive for dementia. Within the baseline assessment, individual data about the utilization of healthcare services were assessed. Costs were assessed from the perspective of insurance, solely including direct costs. Associations between dementia diagnosis and costs were evaluated using multiple linear regression models.

Patients formally diagnosed with dementia were treated significantly more often by a neurologist, but less often by all other outpatient specialists, and received anti-dementia drugs and day care more often. Diagnosed patients underwent shorter and less frequent planned in-hospital treatments. Dementia diagnosis was significantly associated with higher costs of anti-dementia drug treatment, but significantly associated with less total medical care costs, which valuated to be € 5,123 compared, to € 5,565 for undiagnosed patients. We found no association between dementia diagnosis and costs of evidence-based non-medication treatment or total healthcare cost (€ 7,346 for diagnosed vs. € 6,838 for undiagnosed patients).

There are no significant differences in total healthcare cost between diagnosed and undiagnosed patients. Dementia diagnosis is beneficial for receiving cost-intensive anti-dementia drug treatments, but is currently insufficient to ensure adequate non-medication treatment for community-dwelling patients.

Neuropsychiatric symptoms are major determinants for caregiver distress and institutionalization in dementia. Little is known about the prevalence of neuropsychiatric symptoms and their association with use of medication, caregiver distress, and resource utilization in primary care.

We assessed frequency of neuropsychiatric symptoms in a sample retrieved from a primary care intervention study. Patients were screened for dementia by their primary care physicians. A study nurse assessed neuropsychiatric symptoms in 176 patients using the neuropsychiatric inventory (NPI) through face-to-face interviews by proxy during home visits. In addition, data on global cognition (MMSE), quality of life (QoL-AD), resource utilization in dementia (RUD), caregiver distress (BIS), and use of psychotropic medication in patients were obtained. We used linear mixed effect models taking into account the clustering of patients within general physician practices.

Clinically relevant neuropsychiatric symptoms (NPI score ≥ 4) occurred in about 53% of the patients. Higher NPI scores were significantly associated with more severe cognitive impairment, higher caregiver distress, and higher utilization of caregiver resources by patients but not with a formal diagnosis of dementia from the primary care physician. Use of antipsychotics was associated with higher NPI scores, particularly in non-psychotic domains.

Neuropsychiatric symptoms in a primary care cohort screened positive for dementia were associated with resource utilization and distress of caregivers. In contrast to guideline recommendations, the use of antipsychotics was associated with non-psychotic domains of behavioral symptoms. These findings underscore the relevance of neuropsychiatric symptoms for the design of future interventions in primary care.

A computerized Intervention-Management-System (IMS) has been developed and implemented to facilitate dementia care management. IMS is a rule-based expert decision support system that matches individual patient characteristics to a computerized knowledge base. One of the most important functionalities of IMS is to support the compilation of the individual intervention plan by systematically identifying unmet needs and suggesting the corresponding specific interventions for recommendation to the general practitioner (GP). The present analysis aimed to determine if the implementation of IMS improves the identification of unmet needs and the recommendation of adequate specific interventions. In addition, the feasibility and acceptability of the IMS were evaluated.

Delphi-MV is an on-going GP-based, cluster-randomized, controlled intervention trial to implement and evaluate a collaborative dementia care management program for community-dwelling PWDs and their caregivers. IMS was developed and implemented over the course of the DelpHi-trial. The identified unmet needs and the interventions that were recommended to the GP before and after the implementation of IMS were compared. To evaluate the feasibility and acceptability of the IMS, a survey was conducted among the current users of IMS.

After the implementation of IMS, the number of specific interventions recommended to the GP increased by 85%. Our findings provide evidence that IMS improves the systematic identification of unmet needs and the subsequent recommendation of interventions to address these needs. The users evaluated IMS as very helpful and would like to use it for their future work. However, the usability could be further improved.

Increasing prevalence of dementia is a major challenge for the German healthcare system. The study DelpHi-MV (“Dementia: life- and person-centered help in Mecklenburg-Western Pomerania”) aims to implement and evaluate an innovative subsidiary support system for persons with dementia (PwDs) living at home and their caregivers.

DelpHi-MV is a GP-based cluster randomized controlled intervention trial. DelpHi-Intervention aims to provide “optimum care” by integrating multi-professional and multimodal strategies to individualize and optimize treatment of dementia within the framework of the established healthcare and social service system. The intervention is conducted by Dementia Care Managers (DCMs) – nurses with dementia-specific training – at the people's homes. Based on German guidelines for evidence-based diagnoses and treatment of dementia, a comprehensive set of 95 intervention modules – the “DelpHi-Standard” – was defined. Each module consists of predefined trigger condition(s), a subsequent intervention task, as well as at least one criterion for its completion. The intervention begins with a comprehensive assessment of the care situation, needs, and resources. The DCM develops and implements an intervention plan tailored to the individual conditions in close cooperation with the GP.

We expect statistically significant differences between control and intervention group in primary outcomes (quality of life, behavioral and psychological symptoms of dementia, pharmacotherapy, caregiver burden). Results can provide evidence for the effectiveness and efficacy of dementia care management according to the “Delphi-Standard” – prerequisites for implementing this concept into routine healthcare.