Johannes Gräske

Quality of life in dementia care – differences in quality of life measurements performed by residents with dementia and by nursing staff

Objectives: Quality of life (QoL) is a major outcome parameter in dementia care. Self-ratings are considered the best way to evaluate QoL, but staff-ratings also provide valid results. In particular, the discrepancies between self-ratings and staff-ratings are underrepresented. The aim was to identify characteristics of people with dementia that improve the probability of completing a self rating QoL instrument on the ‘Quality of Life – Alzheimers’ Disease’ (QoL-AD). Additionally, a level of agreement was set between self-rated and staff-rated QoL-AD and possible influencing factors. Method: A cross-sectional study was conducted in 2010 in Berlin. Using the instrument QoL-AD, the self- and staff-rated QoL of people with dementia was assessed. Results: 104 residents (73.1% female, mean age: 79.0 years, mean cognitive function (MMSE): 11.5) were included in this research project. 49 (47.1%) residents were able to complete the QoL-AD questionnaire. A predictor to complete the QoL-AD was the MMSE-part ‘language’. Residents rated their QoL as significantly higher than the nursing staff did. If the primary nurse rated the QoL, a significantly better agreement was identified. Conclusion: The study generated new findings concerning a better understanding of QoL measurements. The results suggest the usefulness of performing self-ratings whenever possible. If proxy-ratings have to be used, these should be performed by primary nurses only in order to get reliable results.

Quality of life ratings in dementia care – a cross-sectional study to identify factors associated with proxy-ratings

ObjectiveQuality of life (QoL) is one major outcome parameter in the care for people with dementia (PwD); however, their assessment is lacking a gold standard. The purpose of this study was to evaluate potential factors associated with nurse-rated quality of life of PwD in nursing homes in Berlin, Germany.MethodAn explorative cross-sectional study was performed in five nursing homes to evaluate QoL. Nurses rated the QoL for all residents with dementia by completing two different standardised assessments (ADRQL, QUALIDEM). Potential associated factors were evaluated concerning resident and nurse related factors. A fixed-effects models of analysis of co-variance (ANCOVA) was used to analyse effects of assumed associated factors of the major outcome parameters ADRQL and QUALIDEM. Associated factors were severity of dementia (GDS), challenging behaviour (CMAI), and other characteristics. Regarding the nurses, burnout (MBI), satisfaction with life (SWLS), attitude (ADQ) and empathy toward residents (JSPE), as well as circumstances of the ratings and days worked in advance of the ratings were assessed.ResultsIn total, 133 PwD and 88 nurses were included. Overall, the ratings show moderate to high QoL in every subscale independent of the instrument used. Assumed confounders relevantly influenced 14 out of 17 ratings. Predominantly, residents’ challenging behaviour, nurses’ burnout and satisfaction with life as well as the circumstances of the ratings are significant and clinically relevant associated factors.ConclusionAssessing QoL of PwD is acknowledged as a central component of health care and health care research. In later stages of dementia, proxy-reported information obtained from quality of life questionnaires is and will continue to be essential in this research. However, methodological issues that underline this research - matters of measurement and instrument validity - must receive more attention. Associated factors in proxy-ratings have to be routinely assessed in order to get more valid and comparable estimates.

Dementia-Specific Quality of Life Instruments and Their Appropriateness in Shared-Housing Arrangements—A Literature Study

Shared-housing arrangements (SHA) in Germany are a specific type of housing arrangement that belongs to the global concept of small-scale living arrangements. This caring approach comprises characteristics of both home and institutional care for persons with dementia. To evaluate the impact of SHA on the quality of life (QoL) of residents, an appropriate setting- and dementia-specific QoL instrument is needed. This article aims to identify QoL instruments that relate to the core domains of SHA. After a comprehensive literature review, existing dementia-specific QoL instruments were evaluated to determine whether any have been specifically designed for or applied in SHA. Additionally, each domain of the instruments was matched with the core domains of SHA. None of the existing instruments was identified as having been developed for SHA. Matching of the instrument domains with the SHA core domains leads to the conclusion that Quality of Life-Alzheimers Disease, Dementia Quality of Life, Alzheimer Disease-Related Quality of Life, and QUALIDEM are adequate instruments for measuring the dementia-specific QoL of persons living in SHA. For the first time, a basis has been created for valid QoL evaluations of residents with dementia living in SHA. The 4 identified instruments are considered applicable in SHA. Conducting a performance test and evaluating further attributes according to the Scientific Advisory Committee of the Medical Outcomes Trust (e.g., reliability and validity) will further elucidation of the appropriateness of the instruments for SHA.

Quality of care and its impact on quality of life for care-dependent persons with dementia in shared-housing arrangements: results of the Berlin WGQual-study.

AIM The aim of study was to evaluate setting-specific quality indicators (QIs) for shared-housing arrangements (SHA) regarding effects of a guided quality development process on residents quality of life (QoL). BACKGROUND SHA are a specific German kind of small-scale living facilities for care-dependent persons with dementia. SHA are disconnected from residential facilities and served by community care services. METHOD In a longitudinal cluster-randomised design 104 residents of 34 SHA were surveyed for 1 year; the intervention group took part in a quality development process. QIs, physical and psychological health outcomes including QoL were surveyed. RESULTS During the 1 year follow-up, analyses show a positive trend regarding QI-outcomes in the intervention group, but no statistically significant differences could be proved regarding QoL. CONCLUSIONS Setting-sensitive QIs are absolutely essential to measure quality of care in multi-professional settings like SHA. Further research as well as longer study intervals is essential.

Influence of living situation on vulnerable elderly: Focus on nutritional status

OBJECTIVES We compared the nutritional status of elderly people living in two different settings (shared-housing arrangements and home-living arrangements). DESIGN For this secondary analysis, a cross-sectional study was performed. SETTING For the home-living setting, home-dwelling elderly people from Hamburg, Germany who were participants in a prior study were included. For the shared-housing arrangements (SHA) setting, we used baseline data from the WGQual Study. PARTICIPANTS The sample from the home-living setting comprised patients who were discharged from a geriatric rehabilitation clinic within the six months prior to data collection. The sample from the shared-housing arrangements comprised all residents that lived in SHAs. MEASUREMENTS Nutritional status was examined by administering the Mini Nutritional Assessment (MNA). Cognitive status was measured by the Mini Mental State Examination (MMSE). RESULTS Overall, 142 individuals participated in this study. Statistical analysis showed differences in both overall MNA scores and MNA assessment scores. Significantly more participants from the SHA setting were at risk of malnutrition compared to the home-living setting. CONCLUSION Screening and assessment of nutritional status and prevention interventions should be considered in SHA settings.

Finanzierung regionaler Demenznetzwerke: Determinanten einer nachhaltigen Finanzierung am Beispiel spezialisierter Gesundheitsnetzwerke

OBJECTIVES Analysis of practice-based financing concepts in German dementia networks (DN); Provision of sustainable financing structures and their determinants in DN. MATERIALS AND METHODS Qualitative expert interviews with leaders of 13 DN were conducted. A semi-structured interview guide was used to analyse four main topics: Finance-related organization, cost, sources of funding and financial sustainability. RESULTS DN were primarily financed by membership fees, earnings of services provided, public funds and payments by municipalities or health care providers. 63% of the DN reported a financial sustainability. Funds to support the interpersonal expanding, a mix of internal and external financing sources and investments of the municipality were determinants of a sustainable financing. Overall, DN in rural areas seemed to be disadvantaged due to a lack of potential linkable service providers. CONCLUSION DN in urban regions are more likely able to gather sustainable funding resources. A minimum funding of 50.000 €/year for human resources coordinating the DN, seems to be a threshold for a sustainable DN.

[Regional Dementia Care Networks in Germany--results from the DemNet-D-Study regarding the quality of life of their users].

BACKGROUND Regional dementia care networks become more and more important in the care for community-dwelling persons with dementia (PwD). However, the quality of life of PwD, served by dementia care networks, has not been investigated yet. It also remains unclear if there are differences between urban and rural dementia care networks. This study therefore aims at investigating the quality of life of PwD using this care model, also regarding possible regional differences. METHODS Within the DemNet-D-Study, PwD and their primary caregivers were interviewed using typical outcome parameters (quality of life: QoL-AD, depression: GDS, challenging behaviour: CMAI, capacities of daily living: IADL, caregiver burden: BIZA-D). In addition to these parameters, regional differences were analysed using multi-level-analysis. RESULTS In total, 560 PwD (79.7 years; 57.0 % female) and their caregivers participated in the study. Both self- and proxy-rated quality of life is on a moderate level. The analysis shows a sufficient explanation of the quality of life. (self: p<0.001, R2=0.493; proxy: p<0.001, R2=0.406). Higher quality of life was found for PwD living together with their care givers and for those PwD with higher capacities of daily living. Regional (urban vs. rural) differences could not be found. CONCLUSION The quality of life of community-dwelling PwD using regional dementia care networks is comparable to those in other studies of outpatient dementia care. Further investigation should be carried out regarding different types of dementia care networks.

Regionale Demenznetzwerke in Deutschland

BACKGROUND Regional dementia care networks become more and more important in the care for community-dwelling persons with dementia (PwD). However, the quality of life of PwD, served by dementia care networks, has not been investigated yet. It also remains unclear if there are differences between urban and rural dementia care networks. This study therefore aims at investigating the quality of life of PwD using this care model, also regarding possible regional differences. METHODS Within the DemNet-D-Study, PwD and their primary caregivers were interviewed using typical outcome parameters (quality of life: QoL-AD, depression: GDS, challenging behaviour: CMAI, capacities of daily living: IADL, caregiver burden: BIZA-D). In addition to these parameters, regional differences were analysed using multi-level-analysis. RESULTS In total, 560 PwD (79.7 years; 57.0 % female) and their caregivers participated in the study. Both self- and proxy-rated quality of life is on a moderate level. The analysis shows a sufficient explanation of the quality of life. (self: p<0.001, R2=0.493; proxy: p<0.001, R2=0.406). Higher quality of life was found for PwD living together with their care givers and for those PwD with higher capacities of daily living. Regional (urban vs. rural) differences could not be found. CONCLUSION The quality of life of community-dwelling PwD using regional dementia care networks is comparable to those in other studies of outpatient dementia care. Further investigation should be carried out regarding different types of dementia care networks.

[Users of regional dementia care networks in Germany : First results of the evaluation study DemNet-D].

BACKGROUND In Germany a growing number of community-based support services for people with dementia (PwD) and their caregivers are organized in dementia care networks (DCN), which provide a single point of entry to social facilities and offer personal care and support. OBJECTIVE The aim of this study was to describe the health, functional and social characteristics of PwDs enrolled in DCNs throughout Germany because no data are currently available on this aspect. MATERIAL AND METHODS As part of the multi-center, multi-professional 12-month follow-up study DemNet-D, data on functional and psychological health, sociodemographic and dementia-specific factors and social inclusion were collected in standardized interviews with PwDs living at home. RESULTS A total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50 % had Alzheimers dementia and more than 75 % demonstrated at least a challenging form of behavior. More than half of the participants lived together with a partner or relative. Instrumental activities of daily living (IADLs) were very limited; nevertheless, one in five PwDs showed no long-term care-dependency level. The participants reported having a relatively low feeling of loneliness and a high feeling of social inclusion, depending on the severity of dementia. CONCLUSION This is one of the very first studies generating data on PwDs who receive domiciliary care within DCNs in Germany. The results suggest that the regional DCNs make a successful contribution to overcoming the interface problem and can, therefore, contribute to a more stable care situation and better social integration of PwDs.

Regional dementia care networks in Germany: changes in caregiver burden at one-year follow-up and associated factors

BACKGROUND Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time. METHODS The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories. RESULTS A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD-caregiver relationship, the caregivers gender and health status, and the PwDs socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories. CONCLUSIONS Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD-caregiver relationship should be considered by DCN stakeholders when developing support structures.