Factors Influencing Health-Related Quality of Life of Patients with Spinocerebellar Ataxia.

BACKGROUND: Little is known about the progression of health-related quality of life (HRQoL) and predicting factors in spinocerebellar ataxia (SCA). Such knowledge is crucial to identify modifiable factors promoting everyday life with SCA and attenuating HRQoL decline. OBJECTIVES: This study is to assess HRQoL progression and identify factors affecting SCA patients' HRQoL. METHODS: Longitudinal data (three-year follow-up) of 310 SCA patients of the European SCA3/Machado-Joseph-Disease Initiative (ESMI) (2016-2022) and 525 SCA patients (SCA1, SCA2, SCA3 or SCA6) of the EUROSCA natural history study cohort (2006-2015) were assessed. Both large cohort studies share standardized assessments of clinical measures, SARA, INAS, PHQ-9, and HRQoL (EQ-5D-3L). The association between HRQoL and clinical measures was assessed by Spearman Correlation (rs). Multivariable panel regression models were performed to evaluate the impact of patients' socio-demographics, age of onset, SCA type and body mass index (BMI), and clinical measures on HRQoL progression. RESULTS: HRQoL significantly decreased over one (- 0.014, p = 0.095), two (- 0.028, p = 0.003), and three years (- 0.032, p = 0.002). Ataxia severity and mental health strongly correlated with HRQoL (rsSARA = - 0.589; rsPHQ-9 = - 0.507). HRQoL more intensively declined in male (ß = - 0.024, p = 0.038) patients with an earlier age of onset (ß = 0.002, p = 0.058). Higher progression of ataxia severity (ß = - 0.010, p ≤ 0.001), mental health problems (ß = - 0.012, p < 0.001), and higher BMI (ß = - 0.003, p = 0.029) caused more severe decline of patients' HRQoL over time. DISCUSSION: In absence of curative treatments, stronger focus on mental health and weight influence could help clinical evaluation and accompany treatment improving SCA patients' HRQoL, especially in male patients with early disease onset.

Health Fluctuations in Dementia and its Impact on the Assessment of Health-Related Quality of Life Using the EQ-5D-5L.

OBJECTIVES: To quantify health fluctuations, identify affected health-related quality of life (HRQoL) dimensions, and evaluate if fluctuations affect the HRQoL instruments recall period adherence in people living with dementia (PlwD). METHODS: Caregivers of PlwD completed a daily diary for 14 days, documenting if PlwD's health was better or worse than the day before and the affected HRQoL dimensions. Health fluctuation was categorized into low (0-4 fluctuations in 14 days), moderate (5-8), and high (9-14). Also, caregivers and PlwD completed the EQ-5D-5L (proxy- and self-reported) on days 1, 7, and 14. Subsequently, caregivers were interviewed to determine whether recurrent fluctuations were considered in the EQ-5D-5L assessment of today's health (recall period adherence). RESULTS: Fluctuations were reported for 96% of PlwD, on average, for 7 of the 14 days. Dimensions most frequently triggering fluctuations included memory, mobility, concentration, sleep, pain, and usual activities. Fluctuations were associated with higher EQ-5D-5L health-states variation and nonadherence to the EQ-5D-5L recall period "today." PlwD with moderate to high fluctuation had the highest EQ-5D-5L utility change between day 1 and 14 (0.157 and 0.134) and recall period nonadherence (31% and 26%) compared with PlwD with low fluctuation (0.010; 17%). Recall period nonadherence was higher in PlwD with improved compared with those with deteriorated health in the diary (37% vs 9%). CONCLUSIONS: Health fluctuations frequently occur in dementia and strongly affect HRQoL assessments. Further research is needed to evaluate if more extended recall periods and multiple, consecutive assessments could capture health fluctuations more appropriately in dementia.

What influences life expectancy in people with dementia? Social support as an emerging protective factor.

BACKGROUND: The aim of this study was to investigate the role of support from the social environment for the life expectancy in people with dementia beyond well-established individual demographic and clinical predictors over a period of up to 8 years. METHODS: The analyses are based on data from 500 community-dwelling individuals in Germany who tested positive for dementia and were followed up for up to 8 years. Life expectancy was examined in relation to perceived social support as well as well-established socio-demographic (age, sex) and clinical predictors (cognitive status, functional status, comorbidities), using Cox regressions. RESULTS: Greater support from the social environment reduced the risk of mortality (hazard ratio [HR]: 0.78; 95% confidence interval [CI]: 0.63-0.98), with the role of emotional support being particularly important. Furthermore, higher age was associated with an increased mortality risk (HR: 1.08; 95% CI: 1.05-1.11), while female sex (HR: 0.64; 95% CI: 0.48-0.85) and higher cognitive (HR: 0.96; 95% CI: 0.93-0.98) and functional status (HR: 0.91; 95% CI: 0.86-0.97) were associated with higher life expectancy. CONCLUSION: Our study provides novel evidence that less support from the social environment, especially emotional support, is a risk factor for shorter life expectancy in people with dementia-beyond known clinical factors. Not only the clinical and caregiving needs but also their psychosocial needs of individuals with dementia should be emphasised.

Health-Related Quality of Life in Patients with Spinocerebellar Ataxia: a Validation Study of the EQ-5D-3L.

Although health-related quality of life (HRQoL) has developed into a crucial outcome parameter in clinical research, evidence of the EQ-5D-3L validation performance is lacking in patients with spinocerebellar ataxia (SCA) types 1, 2, 3, and 6. The objective of this study is to assess the acceptability, validity, reliability, and responsiveness of the EQ-5D-3L. For n = 842 predominantly European SCA patients of two longitudinal cohort studies, the EQ-5D-3L, PHQ-9 (Patient Health Questionnaire), and ataxia-specific clinical assessments (SARA: Scale for Assessment and Rating of Ataxia; ADL: activities of daily living as part of Friedreich's Ataxia Rating Scale; INAS: Inventory of Non-Ataxia Signs) were assessed at baseline and multiple annual follow-ups. The EQ-5D-3L was evaluated regarding acceptability, distribution properties, convergent and known-groups validity, test-retest reliability, and effect size measures to analyze health changes. The non-item response was low (EQ-5D-3L index: 0.8%; EQ-VAS: 3.4%). Ceiling effects occurred in 9.9% (EQ-5D-3L) and 3.0% (EQ-VAS) with a mean EQ-5D-3L index of 0.65 ± 0.21. In total, convergent validity showed moderate to strong Spearman's rho (rs > 0.3) coefficients comparing EQ-5D-3L and EQ-VAS with PHQ-9, SARA, ADL, and INAS. EQ-5D-3L could discriminate between groups of age, SARA, ADL, and INAS. Intra-class correlation coefficients (EQ-5D-3LICC: 0.95/EQ-VASICC: 0.88) and Kappa statistics (range 0.44 to 0.93 for EQ-5D-3L items) indicated tolerable reliability. EQ-5D-3L shows small (effect size < 0.3) to moderate (effect size 0.3-0.59) health changes regarding ataxia severity. The analysis confirms an acceptable, reliable, valid, and responsive recommended EQ-5D-3L in SCA patients, measuring the HRQoL adequately, besides well-established clinical instruments.

Design and implementation of the participatory German network for translational dementia care research (TaNDem): A mixed-method study on the perspectives of healthcare providers and dementia researchers in dementia care research.

BACKGROUND: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. OBJECTIVES: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. METHODS: Within an exploratory sequential mixed-method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. RESULTS: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. CONCLUSION: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long-term, effective collaboration and added value for practice and research. PATIENT OR PUBLIC CONTRIBUTION: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text.

Impact of low-value medications on quality of life, hospitalization and costs - A longitudinal analysis of patients living with dementia.

INTRODUCTION: This study aimed to analyze the impact of low-value medications (Lvm), that is, medications unlikely to benefit patients but to cause harm, on patient-centered outcomes over 24 months. METHODS: This longitudinal analysis was based on baseline, 12 and 24 months follow-up data of 352 patients with dementia. The impact of Lvm on health-related quality of life (HRQoL), hospitalizations, and health care costs were assessed using multiple panel-specific regression models. RESULTS: Over 24 months, 182 patients (52%) received Lvm at least once and 56 (16%) continuously. Lvm significantly increased the risk of hospitalization by 49% (odds ratio, confidence interval [CI] 95% 1.06-2.09; p = 0.022), increased health care costs by €6810 (CI 95% -707€-14,27€; p = 0.076), and reduced patients' HRQoL (b = -1.55; CI 95% -2.76 to -0.35; p = 0.011). DISCUSSION: More than every second patient received Lvm, negatively impacting patient-reported HRQoL, hospitalizations, and costs. Innovative approaches are needed to encourage prescribers to avoid and replace Lvm in dementia care. HIGHLIGHTS: Over 24 months, more than every second patient received low-value medications (Lvm). Lvm negatively impact physical, psychological, and financial outcomes. Appropriate measures are needed to change prescription behaviors.

[Regional Health Care Networks in Germany: Characteristics and Financing Illustrated with Dementia Care Networks]. / Regionale Gesundheitsnetzwerke in Deutschland: Charakteristik und Finanzierung am Beispiel regionaler Demenznetzwerke.

OBJECTIVES: To describe the characteristics, financing structures and challenges of regional dementia care networks and the use of regional financial network support according to § 45c para. 9 SGB XI. METHODS: The analysis was based on data from 120 dementia networks that provided information on the network characteristics (location, year of foundation, goals, organizational, personnel and financing structure), the challenges and the use of regional network funding according to § 45c Para. 9 SGB XI. Differences in the organizational, personnel and financing structure depending on the network characteristics were analyzed using t-Tests and ANOVA tests. The use of regional network funding (§ 45c Para. 9) were presented descriptively and discussed against the background of the planned amendment for 2022. RESULTS: The majority of networks were established between 2011 and 2015. Most networks had educational and care goals and, on average, 28 stakeholders. Medically-associated and longer-established networks and networks with a legal form had significantly more network partners, persons actively involved in the work of the network and funding sources. The linking of stakeholders and the funding were seen as the most significant challenges. Every tenth network received regional network funding (§45c para. 9) but 28% decided not to receive funding. For most networks (50%), the funding was still unknown. CONCLUSION: Regional dementia networks are very heterogeneously structured. Certain factors can significantly affect the number of partners and funding sources and should, therefore, be considered. Up to now, only one network per region could receive the maximum amount (€20,000) of funding according to §45c para. 9, which limits the usability of this funding, especially in densely populated regions. The amendment now increases the number of networks to be funded within one region and the funding level. It remains to be seen to what extent this amendment will increase the use of the regional network funding.

Comparing the psychometric properties of EQ-5D-3L and EQ-5D-5L proxy ratings by informal caregivers and a health professional for people with dementia.

BACKGROUND: Assessing health-related quality of life (HRQoL) among persons with dementia poses several challenges due to cognitive decline and limited perception. As a result, proxy ratings by family members or health professionals are used. The EQ-5D is the most commonly used generic and preference-based HRQoL instrument. Methodological drawbacks of the three-level version (EQ-5D-3L) prompted the development of the five-level version (EQ-5D-5L) by expanding the range in the domains. However, no comparison of the psychometric properties of both versions and different proxy ratings exist so far. Therefore, the objective of this study was to compare the psychometric properties of the EQ-5D-5L and EQ-5D-3L by application of different proxy ratings in dementia. METHODS: The EQ-5D-3L and -5L were completed by n = 52 family caregivers and one care manager at baseline and three and six months later. In total, 106 caregiver and 133 care manager proxy ratings were completed. The EQ-5D-3L and 5L were evaluated in terms of acceptability (missing values), agreement, ceiling effects, redistribution properties and inconsistency, and informativity (Shannon, H', and Shannon Evenness, J', indices) as well as convergent and discriminative validity. RESULTS: Mean proxy index scores were higher for the 5L than the 3L. Missing values occurred less frequently in both proxy ratings and versions (< 1%). Agreement between both measures was high but higher in caregiver than care-manager ratings (ICC 0.885 vs. 0.840). The relative ceiling effect decreased from the 3L to the 5L, more intensively in the care-manager (75%) than the caregiver rating (56%). Inconsistency between both versions was low. Informativity increased from the 3L to the 5L version, nearly equally in both proxy ratings. The 5L also demonstrated a better discriminative ability and convergent validity than the 3L, especially in the caregiver rating. CONCLUSION: Compared to the EQ-5D-3L, the EQ-5D-5L had higher feasibility and acceptability and was slightly superior by a reduction of ceiling effects and an improvement in informativity, discriminative ability and convergent validity. Proxy ratings by informal caregivers overall demonstrated better psychometric properties than professional care-manager ratings.

Elicitation of quantitative, choice-based preferences for Person-Centered Care among People living with Dementia in comparison to physicians' judgements in Germany: study protocol for the mixed-methods PreDemCare-study.

BACKGROUND: Person-Centered-Care (PCC) requires knowledge about patient preferences. Among People-living-with-Dementia (PlwD) data on quantitative, choice-based preferences, which would allow to quantify, weigh and rank patient-relevant elements of dementia-care, and identify most/least preferred choices, are limited. The Analytic-Hierarchy-Process (AHP) may be one approach to elicit quantitative, choice-based preferences with PlwD, due to simple pairwise comparisons of individual criteria from a complex decision-problem, e.g. health care decisions. Furthermore, data on congruence of patient preferences with physicians' judgements for PCC are missing. If patient preferences and physicians' judgements differ, provision of PCC becomes unlikely. An understanding of patient preferences compared to physician's judgements will support the implementation of truly PCC, i.e. state of the art dementia-care aligned with patient preferences. METHODS: This mixed-methods-study will be based on the results from a previous systematic review and conducted in three phases: (I) literature-based key intervention-categories of PCC will be investigated during qualitative interviews with Dementia-Care-Managers (DCMs) and PlwD to identify actually patient-relevant (sub) criteria of PCC; (II) based on findings from phase I, an AHP-survey will be designed and pre-tested for face- and content-validity, and consistency during face-to-face "thinking-aloud"-interviews with PlwD and two expert panels (DCMs and physicians); (III) the developed survey will elicit patient preferences and physicians' judgements for PCC. To assess individual importance weights for (sub) criteria in both groups, the Principal-Eigenvector-Method will be applied. Weights will be aggregated per group by Aggregation-of-Individual-Priorities-mode. Descriptive and interferential statistical analyses will be conducted to assess congruence of importance-weights between groups. Subgroup-analyses shall investigate participant-heterogeneities, sensitivity of AHP-results shall be tested by inclusion/exclusion of inconsistent respondents. DISCUSSION: Little research is published on quantitative, choice-based preferences in dementia care. We expect that (1) PlwD have preferences and can express these, (2) that the AHP is a suitable technique to elicit quantitative, choice-based preferences among PlwD, and (3) to identify a divergence between patient preferences and physicians' judgements for PCC. With the help of the AHP-technique, which supports systematic decision-making including multiple criteria, it may be possible to involve PlwD in future care decisions (patient participation) and ensure implementation of truly Person-Centered-Dementia-Care. TRIAL REGISTRATION: Approval of the study was granted by the Ethics Committee at the University Medicine Greifswald the 09Apr2021 (Reg.-Nr.: BB 018-21, BB 018-21a, BB 018-21b).

[Transfer of Physicians' Tasks to Nurses in the Care of People with Dementia]. / Aufgabenübertragung ärztlicher Tätigkeiten in der Versorgung von Menschen mit Demenz auf Pflegefachpersonen in Substitution und Delegation.

THE AIM OF THE STUDY: A transfer of medical activities to nurses and thus the redistribution of tasks has been discussed for almost 15 years. A legal base for model projects has been enacted. However, clearly defined tasks for substitution are still lacking. The aim of this study was to solicit opinions of general practitioners, nurses, people with dementia (PwD) and their relatives about the possibility of a large number of specific General practitioner (GP) tasks being performed by nurses in outpatient dementia care. METHODS: A mixed-methods study with a sequential in-depth design was conducted. The analysis presented here refers to the quantitative survey of the four participant groups. 865 participants were asked about the acceptance of substitution of assessments, primary and follow-up prescriptions, health monitoring measures and other activities currently performed by physicians. RESULTS: Across all groups of subjects, the highest level of approval for substitution was achieved for the assessment of mobility restrictions, everyday competencies, nutritional abnormalities, prescription of transportation, nursing aids, home nursing services and drawing of blood samples. Among PwD and relatives, the level of acceptance for substitution was very high. 88% of the PwD and relatives indicated that many activities can be substituted while the general practitioner remained their first point of contact. More GPs (63.2%) than nurses (56.7%) would accept the substitution. CONCLUSION: The results indicate that a large number of GPs, nurses, patients and their relatives welcome substitution. However, PwD and relatives have a significantly more positive attitude towards substitution.

[Covid-19 Pandemic: Anxiety Experience of Resident and Hospital Psychiatrists]. / Covid-19-Pandemie: Angsterleben von niedergelassenen und Krankenhaus-Psychiatern.

BACKGROUND: To date, no studies have examined the pandemic-related stress experience of inpatient versus outpatient psychiatrists. Therefore, the aim is to investigate the extent of Covid-19 exposure, anxiety, stress experience, and coping abilities among psychiatrists in private practice compared to physicians in psychiatric and psychosomatic hospitals. METHODS: E-mail-based questionnaires with 13 items were used to assess anxiety and stress experience. A total of 105 practicing psychiatrists, and 73 physicians and psychologists from four clinics (including the Clinic for Psychosomatic Medicine and Psychotherapy) were surveyed between early April and mid-May 2020. RESULTS: Compared to hospital psychiatrists, psychiatrists in private practice more often felt severely restricted (52.4 vs. 32.9% p=0.010), at risk of infection (35.2 vs. 13.7%, p<0.001) and financially threatened (24.7 vs. 6.9%, p=0.002). The proportion of well-informed practicing psychiatrists was lower (47.6 vs. 63.0%, p=0.043) and the proportion with lack of protective equipment was higher (27.6 vs. 4.1%, p<0.001). At the same COVID-19 exposure level (8.6 vs. 8.2%), office-based psychiatrists were more likely to report high anxiety, although not significantly, compared to hospital psychiatrists (18.1 vs. 9.6%, p=0.114). Risk factors for experiencing anxiety in both groups were feeling restricted (OR=5.52, p=0.025) and experienced risk of infection (OR=5.74, p=0.005). Exposure level, clinic or practice affiliation, age, gender, and other dimensions of threat experience and coping behavior had no influence. DISCUSSION: Psychiatrists in private practice felt more stressed and threatened by the COVID-19 pandemic compared with hospital-based colleagues. The experience of anxiety was dependent on feeling constrained and at risk of exposure, but not on exposure, protective equipment. Objective indicators seem to play less of an important role in the expression of anxiety than subjective experience.

[Task sharing in outpatient dementia care - Focus groups with GPs and nurses]. / Aufgabenteilung in der ambulanten Versorgung von Menschen mit Demenz.

Task sharing in outpatient dementia care - Focus groups with GPs and nurses Abstract. Background: Caring for people with dementia (PWD) is challenging for the health system and family carers and can only be managed through interprofessional medical and nursing care. AIM: The AHeaD study investigated attitudes of general practitioners (GPs) and nurses towards the transfer of activities previously performed by GPs to advanced nurses in the outpatient care of PWDs. METHODS: In four focus group discussions with 10 GPs and 13 nurses, qualitative content analysis was used to investigate attitudes towards the transfer of certain tasks and to identify opportunities and barriers to their introduction. RESULTS: GPs primarily preferred the transfer of nursing activities such as blood sampling, assessments, their monitoring or follow-up prescriptions for nursing aids. "Classical" medical tasks (e. g. diagnosis of diseases, initial prescription of medication) are still seen in the hands of GPs. Nurses demanded more appreciation and recognition for the relationship between GPs and nurse and criticised the lack of trust and insufficient communication. Both sides pointed to tight time budgets that were hardly oriented towards the actual needs of the PWD. CONCLUSIONS: The implementation of a redistribution of tasks requires the creation of legal and financial framework conditions, time resources, concrete task descriptions as well as a stronger cooperation between the professional groups involved. Innovative concepts could contribute to the sensible use of the resources GP and nurses and strengthen the care of PWDs.

Effect of the COVID-19 lockdown on disease recognition and utilisation of healthcare services in the older population in Germany: a cross-sectional study.

BACKGROUND: There is little evidence about the utilisation of healthcare services and disease recognition in the older population, which was urged to self-isolate during the COVID-19 lockdown. OBJECTIVES: We aimed to describe the utilisation of physician consultations, specialist referrals, hospital admissions and the recognition of incident diseases in Germany for this age group during the COVID-19 lockdown. DESIGN: Cross-sectional observational study. SETTING: 1,095 general practitioners (GPs) and 960 specialist practices in Germany. SUBJECTS: 2.45 million older patients aged 65 or older. METHODS: The number of documented physician consultations, specialist referrals, hospital admissions and incident diagnoses during the imposed lockdown in 2020 was descriptively analysed and compared to 2019. RESULTS: Physician consultations decrease slightly in February (-2%), increase before the imposed lockdown in March (+9%) and decline in April (-18%) and May (-14%) 2020 compared to the same periods in 2019. Volumes of hospital admissions decrease earlier and more intensely than physician consultations (-39 versus -6%, respectively). Overall, 15, 16 and 18% fewer incident diagnoses were documented by GPs, neurologists and diabetologists, respectively, in 2020. Diabetes, dementia, depression, cancer and stroke were diagnosed less frequently during the lockdown (-17 to -26%), meaning that the decrease in the recognition of diseases was greater than the decrease in physician consultations. CONCLUSION: The data suggest that organisational changes were adopted quickly by practice management but also raise concerns about the maintenance of routine care. Prospective studies should evaluate the long-term effects of lockdowns on patient-related outcomes.

Burden of caregivers of patients with frontotemporal lobar degeneration - a scoping review.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Types of leisure time physical activities (LTPA) of community-dwelling persons who have been screened positive for dementia.

BACKGROUND: To (a) describe the pattern of leisure time physical activities (LTPA) in community-dwelling persons who have been screened positive for dementia and (b) determine the health-related and sociodemographic factors associated with LTPA. METHODS: Data of the general practitioner-based, randomized, controlled intervention trial, DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania) were used. Patients aged 70 years or older, who lived at home and had a DemTect< 9 were informed about the study by their General practitioners and invited to participate. Data from 436 participants with complete baseline data were used. Standardized, computer-assisted assessments were made during face-to-face interviews at the participants' homes. RESULTS: Two hundred thirty-eight patients (54.6%) carried out LTPA (men 58.4%, women 51.8%). Physically active patients mentioned one to two different activities; diversity of LTPA was higher for men than for women. The most-frequently mentioned types of activity were gardening (35.3%), cycling (24.1%) and mobility training (12.4%); there was only a statistically significant difference between men and women in cycling, χ2(1) = 21.47, p < .001. The odds of LTPA increased with increasing quality of life (OR = 2.41), lower impairments in activities of daily living (OR = 0.85), and living in a rural environment (OR = 2.02). CONCLUSIONS: Our findings suggest that people who have been screened positive for dementia living in a rural area are more likely to be active than people living in an urban area. Following studies should investigate whether this difference has an effect on the progression of dementia. TRIAL REGISTRATION: ClinicalTrial.gov Identifier NCT01401582 .

Attitudes towards advanced nursing roles in primary dementia care - Results of an observational study in Germany.

AIMS: To demonstrate the attitudes of general practitioners (GPs), nurses, persons with dementia, and caregiver towards suitable tasks and qualification needs for and the acceptance and impact of advanced nursing roles in German dementia primary care. DESIGN: Observational study using a questionnaire survey with 225 GPs, 232 nurses, 211 persons with dementia, and 197 caregivers, conducted between December 2017-August 2018. METHODS: A questionnaire was generated that includes specific assessment, prescription, and monitoring tasks of advanced nursing roles in dementia primary care as well as qualification requirements for and the acceptance and the impact of advanced nursing roles. Data were analysed using descriptive statistics. Group differences were assessed using the Fisher's exact test. RESULTS: Advanced nursing roles were highly appreciated across all groups. Assessment and monitoring tasks were rated as highly suitable, and prescription authorities as moderately suitable. Nurses felt less confident in assessment and monitoring, but more confident in prescribing as practitioners expected. Patients and caregivers would appreciate a takeover of tasks by nurses; nurses and practitioners preferred a delegation. A dementia-specific qualification was rated as best suitable for advanced nursing roles, followed by 'no specific qualification' if medical tasks that only can be carried out by practitioners were delegated and an academic degree if tasks were substituted. Advanced nursing roles were rated as beneficial, strengthening the confidence in nursing care and improving the cooperation between professionals and the treatment. Practitioners assumed that advanced nursing roles would improve job satisfaction of nurses, which was not confirmed by nurses. CONCLUSION: There is an extended consensus towards the enlargement of advanced nursing roles, represented by high endorsement, acceptance, and willingness to reorganize tasks. IMPACT: Results debunk the common notion that German practitioners would be reluctant towards advanced nursing roles and a takeover of current practitioner tasks, supporting the implementation of advanced nursing roles in Germany.

Acceptability and Validity of the EQ-5D in Patients Living With Dementia.

OBJECTIVES: To assess the acceptability and validity of the 3 levels of the EQ-5D (EQ-5D-3L) compared with the Quality of Life in Alzheimer's Diseases (QoL-AD) in patients living with dementia. METHODS: The analysis was based on 560 dyads of persons with dementia and their caregivers of the multicenter observational study of dementia care networks in Germany (DemNet-D). Health-related quality of life was assessed by face-to-face interviews using the EQ-5D-3L (self-rating) and the QoL-AD (self- and proxy-rating). The number of missing values, the score ranges (observed vs possible range) and the floor and ceiling effects were used to assess the acceptability. We used one-way analyses of variance and multivariate linear regression models to evaluate the discriminative ability. The convergent validity was assessed using Spearman's correlation coefficient (rs) and multivariate regression models. RESULTS: The EQ-5D index had a higher response rate (89% vs 84%) and a comparable floor (>1%) but a higher ceiling effect (18% vs >1%) compared with the QoL-AD. Both measures can significantly differentiate between different stages of general health, instrumental activities of daily living, and depression. The EQ-5D index and the visual analog scale self-rating scores strongly correlated with the QoL-AD self-rating (rs = 0.644 and 0.553, respectively) but not with the proxy-rating score (rs = 0.314 and rs = 0.170, respectively), which was confirmed by multivariate regression analyses. CONCLUSION: The results satisfy acceptability, discriminative ability, and convergent validity for moderately cognitively and functionally impaired patients living with dementia. The EQ-5D-3L performed comparably with the QoL-AD, and could, therefore, be used in economic evaluations in dementia. The differences between self- and proxy-ratings should be evaluated and considered in the interpretation of health-related quality of life scores.

The situation of elderly with cognitive impairment living at home during lockdown in the Corona-pandemic in Germany.

BACKGROUND: The outbreak of the Corona virus is a challenge for health care systems worldwide. The aim of this study is to analyze a) knowledge about, and feelings related to the Corona-pandemic. Describe b) loneliness, depression and anxiety and, c) the perceived, immediate impact of the lockdown on frequency of social contacts and quality of health care provision of people with cognitive impairment during social distancing and lockdown in the primary care system and living at home in Germany. METHODS: This analysis is based on data of a telephone-based assessment in a convenience sample of n = 141 people with known cognitive impairment in the primary care setting. Data on e.g. cognitive and psychological status prior to the pandemic was available. Attitudes, knowledge about and perceived personal impact of the pandemic, social support, loneliness, anxiety, depression, change in the frequency of social activities due to the pandemic and perceived impact of the pandemic on health care related services were assessed during the time of lockdown. RESULTS: The vast majority of participants are sufficiently informed about Corona (85%) and most think that the measures taken are appropriate (64%). A total of 11% shows one main symptom of a depression according to DSM-5. The frequency of depressive symptoms has not increased between the time before pandemic and lockdown in almost all participants. The sample shows minimal (65.0%) or low symptoms of anxiety (25%). The prevalence of loneliness is 10%. On average seven activities have decreased in frequency due to the pandemic. Social activities related to meeting people, dancing or visiting birthdays have decreased significantly. Talking with friends by phone and activities like gardening have increased. Utilization of health care services like day clinics, relief services and prescribed therapies have been reported to have worsened due to the pandemic. Visits to general practitioners decreased. CONCLUSIONS: The study shows a small impact of the pandemic on psychological variables like depression, anxiety and loneliness in the short-term in Germany. There is a decrease in social activities as expected. The impact on health care provision is prominent. There is a need for qualitative, in-depth studies to further interpret the results.

Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

BACKGROUND: Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection. METHODS: Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data. RESULTS: In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers. CONCLUSIONS: Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

[Healthcare of the future-Insights and strategy for (dementia) health services research]. / Gesundheitsversorgung der Zukunft ­ Erkenntnisse und Strategie der (Demenz­)Versorgungsforschung.

BACKGROUND: Due to the demographic change healthcare for older people is becoming more important. A key strategic document for the near future is the national dementia strategy (NDS), which defines four fields of action including promoting excellent research on dementia. The NDS will guide and influence the further development of dementia healthcare research in the coming years. OBJECTIVE: The current research on specific NDS topics is presented and an outlook on expected developments is given. MATERIAL AND METHODS: This article provides a narrative review in which concepts and examples for selected sections of the NDS are presented: funding and promotion of healthcare research, development of evidence-based prevention and healthcare concepts and transfer into routine care, support for people with dementia (PwD) and their caregiver, cross-sectoral networking, participation in dementia research and networks in healthcare research. These were analyzed with respect to future developments and concretized based on current healthcare and promotion models. RESULTS: Insights are given into the healthcare concept of dementia care management, rethinking regional healthcare models such as medicine and e­health. The innovation fund and research practice networks are described as examples of current structural methods of evidence-based design of future healthcare. CONCLUSION: The NDS represents an ambitious agenda with very comprehensive goals and topics for the improvement of healthcare for PwD and will probably significantly influence healthcare research and thus healthcare in the future. Overarching, mutually influencing and strengthening components on the way to improvement of the situation for PwD and the healthcare system are translation, participation and networking in research.