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P6. Care services: Home care

Detailed programme, abstracts and presentations

P6.1. Exploring personhood in formal care provision in Ireland: perspectives from people with dementia


NUI Galway, Galway, Ireland

Background: Personhood in dementia is about treating the person with dementia as a person first and foremost and in a manner that supports their sense of self. It is acknowledged as the corner stone of person-centred care and an important catalyst in an on-going paradigm shift within dementia care. However, there is ambiguity around the concept of personhood and in particular, how it can be actualised in the provision of formal care. This research examines the lived experiences of personhood of people with dementia within the context of formal care in Ireland.

Methods: The research is grounded in a theoretical conceptualisation of personhood as essentially a relational concept. Using a semi-structured approach, people with dementia are asked about their experiences of formal care relationships and services. Interview questions focus on important elements such as flexibility, choice, communication and the nature of formal care relationships. Thematic analysis is used to examine the participant views framed within a phenomenological approach. A total of 15 interviews were conducted with people with dementia residing in their own homes and in long-term care.

Results: Preliminary results indicate that people with dementia are concerned about getting the right amount of support when they needed it most; they are also concerned about striking a balance between empowerment and paternalism and between autonomy and risk. People with dementia are sometimes accepting of services that they do not necessarily want, but which provide their family carers with respite.

Conclusions: This research has implications for the content of individual care provision and the design of the system of dementia care as a whole. The findings are important for policy makers in the practical implementation of current dementia policy and the regulation of future formal care provision to ensure that personhood is being supported through holistic care for people with dementia.

P6.2. International perspectives on suicidal ideation and self-harm in family carers of people with dementia

O'DWYER Siobhan1, JOLING Karlijn2, WARMOTH Krystal1, CORBETT Anne1

1University of Exeter, Exeter, United Kingdom, 2VU University Medical Center, Amsterdam, Netherlands

A growing body of evidence suggests that people who care for family members with dementia contemplate suicide and self-harm at higher than average rates. The aim of this study was to determine how rates of suicidal ideation and self-harm vary across countries. Data from studies of suicide-related thoughts and behaviours in family carers in the Netherlands, the UK, and Australia were compared. In the Australian study (n=566) 16% of carers had contemplated suicide more than once in the previous year. In the Dutch study (n=192) 12% of carers who screened positive for depression repeatedly felt suicidal, wished they were dead, or considered hurting themselves in the previous two weeks. In the UK study (n=69), in the previous two weeks, 6% of carers felt they would be better off dead, 16% had contemplated self-harm, and 10% had self-harmed. The Dutch and Australian studies identified depression, social support, dysfunctional coping, loneliness, and physical health problems as key risk and protective factors. This is the first international comparison of data on suicide-related thoughts and behaviours in family carers and, despite differences in sample size and measurement tools, the findings suggest that these are indeed global phenomena. Further research is required to understand the social, political, and cultural factors that might contribute to variations across countries, and to develop evidence-based strategies for identifying and supporting at-risk carers.

P6.3. The “Carers’ Needs Assessment for Dementia”: results of the Bavarian Dementia Survey (BayDem)

DIETZEL Nikolas1, KOHLMANN Linda1, NICKEL Franziska1, HESS Manuela1, GRÄßEL Elmar2, KOLOMINSKY-RABAS, L. Peter 1

1Friedrich-Alexander-University of Erlangen-Nürnberg, Erlangen, Germany, 2University Hospital Erlangen, Erlangen, Germany

Background:  There are about 1.6 million people with dementia (PwD) living in Germany, whose care is predominantly conducted by their relatives. The identification of problems, demands and support services for caregivers is necessary in order to satisfy unmet needs. Therefore, this analysis investigates unmet needs and resource use of family carers.

Methods:  BayDem is a multi-centre, longitudinal study at three different sites in Bavaria, Germany. Participants are PwD (according to ICD-10) and their informal caregivers. Data was collected by standardised face-to-face interviews using well-designed instruments (CNA-D, BSFC-s).

Results: In total, 246 caregivers of PwD were considered 6 months after the first interview.

In the domain “Challenging behaviour of the PwD” (n=80), there was a significant and meaningful difference (p=0,003, Cohen’s d=0,684) between caregivers, who received satisfying assistant services (59%) and those, who were dissatisfied with the received support (41%). In this respect, discontented informal carers declared a higher subjective burden. This trend was also evident in the domains “Worries about disease” (n=102) with 49% being dissatisfied and “Care-related burden” (n=94), where 53% were discontented with the assistance services.

Conclusion: The CNA-D proved to be a valuable instrument for assessing problems and (unmet) needs of informal caregivers. The results indicate that provision of services itself is not sufficient, as the quality of those services has an essential influence on the caregiver’s burden. Inappropriate support may be more stressful than helpful.

Funding NOTICE: The research was initiated by the Bavarian State Parliament and is funded by the Bavarian Ministry for Health and Care.

P6.4. Empowerment interventions for people with dementia: a European survey


1Radboud Alzheimer Centre, Nijmegen, Netherlands, 2Open University, Heerlen, Netherlands

Background:  The concept ‘empowerment’ is important for people with dementia to remain active and involved in society, with significant others and in the decision making process regarding their care and support. Empowerment may be considered a process that enhances health and quality of life. Unfortunately, at present, effective empowerment interventions for people with dementia at home or in care homes appear to be scarce, both in the Netherlands and internationally.

Methods: We are performing a European digital survey of current empowerment interventions in cooperation with Alzheimer Europe to get an overview of existing empowerment interventions for people with dementia. The survey enables us to identify effective and usable elements, practical experiences, and implementation strategies of empowerment interventions throughout Europe. We aim to use the data for developing an empowerment intervention for people with dementia at home and in care homes. Furthermore, based on the European survey, we determine how an empowerment intervention can be integrated adequately within the range of related interventions in Europe. The 40 Alzheimer Europe member associations (from 35 countries) are approached to fill in the survey. In addition, the survey targets associations of health care providers for people with dementia at home and in care homes and knowledge centers. Furthermore, supplementary documents of the uncovered empowerment interventions will be located in the public domain (by open internet searches and targeting searches on the websites of relevant organizations). From all collected documents, the usable elements, practical experiences, methodology and implementation strategies are evaluated and included in an overview.

Results: Data collection of the European survey is in progress. The overview of empowerment interventions for people with dementia and the key findings of the survey will be presented at the conference.

P6.5. Towards culture sensitive care organisations for migrants with dementia: an exploratory study

DURAN Gözde, HULLEMAN Melissa, SMITS Carolien

Windesheim University of Applied Sciences, Zwolle, Netherlands

Background: Some migrant groups have a high risk of dementia. Care use of these migrants and their caregivers is mostly limited to general practitioners. Recently, these migrants have increasingly gained access to culture specific home care organisations, whereas traditional care organizations still fail to reach migrants with dementia. This study aims to find out the barriers that professionals in these organisations experience in offering culture sensitive care and how these organisations may learn from each other.

Project design: Qualitative design with (1) semi-structured interviews with 3 caregiving daughters of Turkish migrants with dementia (2) two focus groups sessions with care professionals from culture specific and traditional general care organisations. In the focus groups the professionals discussed facilitators and barriers to offering culture sensitive care and wrote down their claims (facilitators), concerns (barriers) and issues (improvement issues) on sticky memos and discussed them. Transcripts of interviews and focus groups, and memos were analyzed by open coding from an inductive perspective.

Research findings: Preliminary analyses of the individual interviews show that caregivers experience little culture sensitive care from traditional organisations. Professionals from both culture specific and traditional general organisations mention lack of language proficiency as a barrier to culture sensitive care. Both types of organizations aim for a high quality of life and respect for cultural differences, but professionals in the traditional organisations experience a ‘distance’ in the care relationship, whereas professionals in the culture specific organisations see trust and recognition in their clients. Both groups of professionals find care of migrants difficult: professionals from traditional care organisations because of lack of knowledge and lagging policy. Professionals from culture specific organisations because they have received no formal culture sensitive training. All professionals are eager to learn from each other by exchange of information and staff.

P6.6. Change of utilization of health care services in Dementia Care Networks? – the longitudinal DemNet-D-study

THYRIAN Jochen René1, MICHALOWSKY Bernhard1, HERTEL Johannes2, WÜBBELER Markus3, GRÄSKE Johannes4, HOLLE Bernhard5, SCHÄFER-WALKMANN Susanne6, WOLF-OSTERMANN Karin7, HOFFMANN Wolfgang8

1German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany, 2University Medicine Greifswald, Greifswald, Germany, 3University of Applied Sciences for Health, Bochum, Germany, 4University of Applied Sciences, Saarbrücken, Germany, 5DZNE, Witten, Germany, 6Institute for applied social sciences (IfaS), Stuttgart, Germany, 7University of Bremen, Bremen, Germany, 8DZNE, Greifswald, Germany

Objective: to describe changes in utilization of health services by people served by dementia care networks (DCN) in Germany and factors associated with changes over time.

Design: observational study with face-to-face interviews at two time points over a period of one year.

Setting/ Participants: Primary data was assessed in n=560 people with dementia and their caregiver supported by DCNs in Germany

Measurements: sociodemography, clinical variables, utilization of services; DCN were characterized according to their governance. Data was assessed via semi-structured interviews at the participants’ homes.

Results: Utilization of health services by PwD served in DCN is consistently higher than in the general population and does not significantly change over time. The strongest predictor of utilization of any service after one year was the use of this service at baseline (OR from 3.23 to 44.16). Higher activities of daily functioning increased the chances to utilize specialist physicians (OR=1.32) or occupational therapy (OR=1.24) significantly. Being a female decreased chances to utilize specialist physicians (OR=0.37) and increased the chances to utilize no services (OR=0.57).

Conclusion The findings underline the importance of dementia care networks. When establishing dementia care networks, special effort should be given to include the medical sector as well as emphasis should be on ways to increase participation of females. The results were considered in German legislation (SGB XI), which took effect in January 2017. The §45c section 9 SGB XI 4 regulates that Long-Term Care Insurance participates in the funding of self-organized networks for structured collaboration in long-term care now.



Last Updated: Tuesday 13 November 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche