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P13. Care evaluation

Detailed Programme, abstracts and presentations

P13.1. Knowledge synthesis: a meta-ethnography of the perspectives of paid dementia care workers on their jobs.

Cheryl Cook, Kenneth Rockwood

With the population of persons with dementia (PwD) rising globally, the expectations and strains on workers to provide quality dementia care is an area worthy of inquiry. At Geriatric Medicine Research (GMR) we are undertaking work in the area of frontline workers who provide care to PwD. Gaining an understanding of the perspectives of workers regarding the challenges and rewards of their daily work supports our patient/carer-centered approach to dementia and frailty research, and is a key area of inquiry for dementia care policy. While much study has been done regarding workers’ perspectives on the care they provide dementia patients, there is no evidence of any synthesis of the literature on this topic. Our goals were to understand the current state of knowledge in this area as well as any gaps in this, and to gain insight into the key themes as presented by the workers themselves. This project was framed around an “Integrated Knowledge Translation” model, and so in addition to the research team, we invited a large group of knowledge users representing research, education, policy and practice to meet with the core team regularly to discuss the work and offer feedback and direction.

Because this project sought to understand the issue from the perspective of the workers, a qualitative approach was best suited, as it concerns itself with how people understand and view their world. We employed a meta-ethnographic approach developed by Noblit and Hare, and searched multiple databases with for qualitative work that reported on workers’ opinions and perspectives on their jobs. A final group of 34 texts (including articles from peer-reviewed journals, articles from professional publications and dissertations/theses) were read, coded using qualitative analysis software, and the overarching themes collected, compared and contrasted. Here we present the themes uncovered by the work including: approach to care, education, emotional effect of the job, effect of dementia specific symptoms, ethical issues, organizational factors, the physical environment of care, and relationships with the PwD, the PwD’s family and with co-workers . We will also show how the themes are related to each other and discuss what this project means for future work in the area of dementia care.

P13.2. Quality assessment of the services provided at a dementia day care centre of the Athens Association of Alzheimer’s Disease and related disorders

A. Efthymiou, N. Karpathiou, N. Avrami, E.Tryfonopoulos, E. Dimakopoulou, D. Potamianou, T. Krasakis, D. Kavouridi, C. Nikolaou, P. Sakka

Introduction. The Dementia Day Care Centre in Pagrati, Athens has been operating since 2007. A multidisciplinary team of healthcare professionals provides a comprehensive array of services including neurological and cognitive assessment, non pharmacological treatments for patients (cognitive training, speech and occupational therapy, reminiscence therapy, art therapy, physical exercise), training, counselling and psychotherapy for carers. During the four years of operation, 1958 people with memory complaints were examined in our Memory Clinic and on a monthly basis 80 people attend the intervention programmes of our Day Care Centre.

The aim of this study is to investigate patients’ and caregivers’ satisfaction from the services provided at the Dementia Day Care Centre.

Methods. Sample: 80 caregivers, 72% women and 26% men, mean age 58 years, have participated in this study. Tools: A 17-item self-administered caregivers’ questionnaire was developed by our team of health professionals in order to evaluate the quality of services provided. Items were generated using literature review and caregivers’ interviews. A pilot study involving 20 caregivers was conducted to eliminate confusing items and decide on the final version of the questionnaire, which was administered to the caregivers in 2009 and 2010 after their relatives had completed a six month intervention programme.

Statistical analysis was performed using Statistical Package for Social Sciences SPSS (V.16).

Results. Centre Facilities (spaces, hygiene, security), carers’ support (leaflets, help-line, consultation), intervention programme (operating hours, frequency of attendance), qualities of personnel (discreetness, confidence, availability), caregivers’ mood and patients’ benefits were the 6 domains assessed by the self-administered caregivers questionnaire. The majority of caregivers gave positive feedback (agree, strongly agree). We found a somewhat negative view in 3 questions regarding operating hours, frequency of attendance and caregiver mood.

Discussion. In conclusion, caregivers believe that the services provided at our Day Care Centre are of high quality. The personnel has established a strong relationship with the patients and the caregivers. Caregivers request that patients would spend more time at the Day Care Centre. In this way, caregivers could perform caregiving duties such as subscribing medication, housekeeping, managing financial matters and find time to look after themselves.

P13.3. Dementia Care Mapping – Barriers and facilitators to implementation

Tina Quasdorf, Christine Riesner, Martin Dichter, Olga Dortmann, Margareta Halek

Background: Dementia Care Mapping (DCM) is an observational instrument to implement person centered care and to support quality of life for persons with dementia, which has been used in a number of countries, including Germany, for several years. Until now, little is known about the implementation process of DCM in German nursing homes, but literature indicates that various barriers and supportive factors can influence the implementation of complex interventions like DCM.

Method: In 2010, the research project ‘Leben-QD, Strengthening Quality of Life for People with Dementia’ started to evaluate the process and the effects of DCM implementation. Over three years, the quasi-experimental study takes place in 9 nursing homes of one care provider in Germany, each represented with one ward. 3 wards are going to start using DCM (intervention group). Another 3 wards are going to use QUALIDEM, a short proxy instrument to measure quality of life for people with dementia (comparison group). The remaining 3 wards have already used DCM several years (second comparison group). As part of the study semi structured interviews were conducted with the head nurses of the project wards or their proxies (n=9) to identify potential barriers and facilitators at baseline. One main topic of the interviews was the quality of communication processes within the teams. In addition care staff (n=95) answered a questionnaire for perceived burden and attitudes to dementia and dementia care, which also included questions regarding the communication within their teams. Interviews were analysed by thematic analysis and compared to parts of questionnaire data, which were analysed by descriptive statistics.

Results: Several potential barriers and facilitators for the DCM implementation could be identified. Main resources of the participating wards seem to be a strong coherence and also an efficient culture of communication within the teams. Both were reported by most of the interviewees. Questionnaire data confirm these statements. Potential barriers, however, seem to be more diverse. While there was reported a high level of workload and staff shortage for some of the wards, others had to deal with structural problems such as staff turnover and absence of head nurses. Systematic differences or regularities within the 3 research groups (intervention/comparison) could not be identified.

Conclusion: The participating wards will have to face considerable barriers but also benefit from noteworthy facilitators during the study process. One challenge of the Leben-QD study will be to identify which of them have a considerable influence on implementation processes and should be either put to account or be eliminated.

P13.4. Monitoring dementia care in German nursing homes - goals and strategies

Rebecca Palm, Kerstin Köhler, Sabine Bartholomeyczik, Bernhard Holle

The question of how care should be provided to people with dementia (PwD) is one of the most important issues for the national health care system in Germany. The necessity to act is on the one hand based on the rapidly growing population of people with dementia in Germany and on the other hand on the challenge to provide care adequate to their special needs. This is a challenge especially in institutional settings like nursing homes. Dementia is one of the main reasons for care dependency and one risk factor for the admission to a nursing home.

Depending on age, up to 70% of care dependent PwD live in nursing homes (1). The nursing home care sector in Germany is about to change with regard to the care of PwD. Changes have been made concerning the legal regulation of the financing and the quality control through the statutory health insurances. Especially concerning the provision of care in nursing homes the Federal Ministry of Health announced recommendations for the management of challenging behavior of residents with dementia (2). They include organizational and structural aspects as well as concepts and interventions mainly provided by nurses e.g. diagnostic procedures to understand challenging behavior, biographical work and emotionoriented care.

Due to a lack of valid and current data it is not possible to monitor and analyze the changes that have been made through the implementation of these recommendations. It is the aim of the “DementiaMonitor” to fill this gap. The “DementiaMonitor” is a project conducted at the German Centre for Neurodegenerative Diseases, which focuses on the nursing home care sector in Germany. In a cross-sectional survey starting in 2012 data concerning the organization of nursing homes, the provision of nursing care and health and dementia related characteristics of the residents will be collected using a three-level- instrument. The survey will be conducted every year, so it is possible to monitor changes and developments regarding the care of PwD. The focus with regard on content is set on the recommended concepts and interventions concerning the management of challenging behavior. Because there are no instruments existing which can assess the provision of dementia care the development of such an instrument is necessary. The presentation will focus on the conceptualization and study design, as well as the development of the instrument of the “DementiaMonitor”.

1. Rothgang H, Iwansky S, Müller R, Sauer S, Unger R, editors. BARMER GEK Pflegereport 2010. Schwerpunktthema: Demenz und Pflege. Band 5 ed. St. Augustin: Asgard-Verlag; 2010.

2. Bundesministerium für Gesundheit (BMG). Rahmenempfehlungen zum Umgang mit herausforderndem Verhalten bei Menschen mit Demenz in der stationären Altenhilfe. Forschungsbericht. Berlin: Bundesministerium für Gesundheit (BMG); 2007.

P13.5. The relationship between challenging behaviour and quality of life of residents with dementia.

Margareta Halek, Olga Dortmann, Christine Riesner, Tina Quasdorf, Martin Dichter

Background: The improvement of Quality of Life (QoL) of residents with dementia is an important aim of caring for these patients. Person-centred care (PCC) refers to care with individualized, valued attributes and social inclusion. This means PCC contributes to QoL. This key concept is particularly relevant in the care of residents with dementia in long-term care facilities. Dementia Care Mapping (DCM) is a tool for the implementation of person-centred care. In 2010 the research project ‘Leben-QD, Strengthening Quality of Life for People with Dementia’ was started in order to evaluate the effects of DCM implementation.

Method: The effects of DCM implementation will be compared to the effects of QUALIDEM. DCM is a comprehensive observational instrument to measure the well-being of persons with dementia. QUALIDEM is a short proxy instrument for measuring the QoL of people with dementia. Over a period of three years, the quasi experimental study will take place in 9 wards at nursing homes in Germany. Three wards are going to implement DCM (intervention group), 3 wards are going to use QUALIDEM (first comparison group), and 3 wards have already been using DCM for several years (second comparison group). The initial sample included 153 residents with dementia. The main outcome is the change in QoL of residents. In this presentation the results regarding QoL and challenging behavior prior to the implementation will be shown.

The QoL measured by QUALIDEM and challenging behavior measured by NPI-NH were analyzed by descriptive statistics. To evaluate the relationship between each of the QUALIDEM-subscales and the 12 NPI-indices the unbiased conditional inference trees (CTREE) were used.

Results: 66% of residents show mild-to-moderate (FAST 4-6) and 34% severe (FAST=7) cognitive impairments The QUALIDEM scores of each subscale vary between 34%-81% for mild-to-moderate and 58%-80% for severe dementia. The clinical relevant prevalence of challenging behaviour ( ) stands at 79% in the mild-to-moderate and at 88% in the severe dementia group. The wards using DCM have similar rates of challenging behaviour as those without DCM. There are significant relationships ( ) between some subscales of both NPI and QUALIDEM. The results indicate that behavior like apathy, depression and anxiety has a negative impact on the QoL subscales: Positive and Negative Affect, Social Relationships, Self Image and Social Isolation. Aggressive behaviour is connected with poor Care Relationships.

Conclusion: Some forms of challenging behaviour have more negative impact on QoL than others. The residents living in wards using DCM show similar rates of challenging behaviour compared to wards without DCM. The obtained results will be used to generate hypotheses for the upcoming research process.



Last Updated: Wednesday 26 October 2011


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene