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P6. Quality of life

Detailed programme and abstracts

P6. Quality of life (Tuesday 1 Nov., 14.00 - 15.30)

P6.1. Quality of life and security: two priorities in our dementia-friendly plan


Ligue Alzheimer ASBL encourages people with dementia to live at home as long as possible with a good quality of live. In this context, the association seeks to implement projects to facilitate the inclusion of people with dementia, ensure the security and the maintenance of social ties, and gives tools to feel more comfortable with a confused person.

First, in partnership with Bastogne, a famous historical city, we build the action “Together, Alzheimer is lighter”. This initiative seeks to raise awareness of dementia among citizens, associations and local shopkeepers to encourage and practice hospitality, communication and quality support for people with Alzheimer's disease or other form of dementia.

Second, the project “Polidem” aims to establish an identity record at home in order to facilitate the research for missing persons. Why? Because 70% of people with dementia live at home. Considering that Alzheimer's disease leads to spatial disorientation and therefore ambulation, people with this disorder are prone to disappearances which are generally more worrying. To be accurate, the record contains the useful information needed to start the research of the missing person: contacts person, carers, habits, former interests and profession, medications, physical description and recent photo, and so on.

To achieve this, Ligue Alzheimer ASBL works with the Federal Police and the unit of missing persons, the local police, the public prosecutor’s department and assistance and care services providers. Concretely, all these actors sign the protocol for a given area (covered by the local police). After that, the identity record is available in this area. The final goal is to extend this protocol to all Wallonia and Brussels.

To summarize, both are practical actions to create a dementia friendly environment. The first project aims social life and liberty and the second promotes fast interventions for people staying in the place of their choice, at home.

P6.2. Improving social participation and quality of life – dementia care networks in Germany


Background: The number of older care-dependent adults with dementia is increasing rapidly all over the world. A high proportion of people with dementia (PwD) are living at home in the community, which places a great demand on developing and evaluating effective and high quality care strategies providing care. Meeting the demands of PwD and their relatives requires multiprofessional networks incorporating different stakeholders (medical doctors, nursing personnel, therapists, hospital facilities, community care services, self-help organizations, local authorities, etc.) for care and support to provide best practice person-centered care. DCN in Germany are not implemented systematically or nationwide, empirical findings of helpful structures and effectiveness of DCN are only few.

Methods: In a longitudinal study (2012-2015) health related outcomes of n=536 dyads of PwD and family caregivers participating in 13 DCN all over Germany are evaluated by standardized interviews at baseline and after a one-year follow-up. Besides socio-demographic and illness-related variables, special interest is directed to quality of life (QoL-AD), depression (GDS) social participation (SACA) and remaining in own domesticity.

Results: The results show that at baseline more than half of the participating PwD (58.1%) are female with a mean age of 79.7 years. Nearly all of them (88.6%) have a medical diagnosis of dementia and show at least one challenging behavior (76.9 %). One third of the participants show mild to severe symptoms of depression (34.1 %). But PwD still report a moderate quality of life and sufficient social participation. Satisfaction with care and support by DCN is high and only 8.9 % of the participants moved into residential long-term care during the study period.

Conclusions: Our results give detailed information on community-dwelling PwD served by DCN. The results shed some light on the question how to improve care and social inclusion of PwD in the long run.

P6.3. Identifying meaningful aspects of quality of life for older family carers of people with dementia in focus groups

OLIVEIRA Deborah, VASS Catherine, AUBEELUCK Aimee

This research aimed to explore how older family carers of people with dementia make sense of their own quality of life, as well as identifying the factors that enhance or compromise their life quality. Four focus groups were conducted with 19 older family carers taking part in community-based support groups in Nottinghamshire, United Kingdom. Data was transcribed verbatim and analysed by two researchers independently using Interpretative Phenomenological Analysis. Comparison of results demonstrated good inter-coder reliability. Thirty-four themes emerged and were collated into three superordinate themes: aspects of care and caregiving; feelings and concerns; satisfaction with life and caregiving. “Aspects of care and caregiving” represents daily factors affecting QoL that are often outside the psychological control of this group of carers, but which will invariably affect these individuals’ feelings, concerns, satisfaction and QoL. Some of these aspects are the support received, aspects of dementia, the current state of their own physical health and financial situation. “Feelings and concerns” relates to carers’ experiences of caregiving and other factors which are related to older family carers’ overall perceived QoL. Finally, “satisfaction with life and caregiving” describes the factors associated with carers’ satisfaction with the support received from social services, their self-identity, and the restrictions brought about by their caregiving role. This study has allowed for the exploration of a broad range of aspects that are of particular importantance to the QoL of older family carers of people with dementia. These findings have the potential to inform future health and social care practice with regards to improving life quality for this overlooked population.

P6.4. Remembrance dance: A concept for creating quality of life for people with dementia living at nursing homes.


Memory problems in Alzheimers Disease (AD) are primarily associated with learning new skills, whereas general knowledge and physical activity that are learned during childhood will be intact in considerably longer time. This is why physical exercise is a highly suitable activity to people with dementia. International research shows that dancing as a psychosocial approach in nursing homes enhance positive mood, decrease behavioral disorders and improve social interaction.

In the period 2014 to 2016 The Danish Alzheimer Association carries out the project “Remembrance Dancefor people with severe dementia”as a meaningful social, physical and mentally stimulating activity and raises awareness on creating joy, happiness and strengthen social relations.

The project is completed in cooperation with Nurse Susanne Rishoej, the developer of the concept. A total of 37 municipalities participated in the project, including 180 nursing homes that have implemented 8 weekly dance sessions and a grand-ball in a period of 4 months. Prior to the dance sessions about 400 professionals were trained as a Remembrance Dance instructors, responsible for implementing the dance on the nursing home they are employed.

Questionnaires and interviews with the dance instructors indicate that the residents participating in Remembrance Dance, experience joy and happiness, measured through observations of the residents smiling, laughing and having? eye contact with others.

The instructors, colleagues and leadership emphasize that dancing with a resident with dementia creates a new, equal relationship and a different, intimate space for socializing and breaks the typically very practical everyday care. The new space for interaction is due to the ambiance that characterizes the dance sessions.

The presentation will focus on the results from the project and that Remembrance Dance easily can be introduced as a separate activity at any nursing home.

P6.5. Routine measurement of quality of life in care homes

HUGHES Laura, DALEY Stephanie, FARINA Nicolas, BANERJEE Sube

One third of people with dementia live in care homes (CHs) in the UK. There is increasing concern about the quality of care for people with dementia in many CHs in the UK and lack of consensus about how best to measure QoL. One possible mechanism is the measurement of quality of life (QoL) of residents.  Several measures of dementia-specific QoL have been developed, with some validated for use in CH settings. These are usually questionnaires for self-completion by the person with dementia or by proxy.  However, the use of QoL measures in CHs has been limited, primarily linked to research rather than routine practice. The aim of this study is to develop, implement and evaluate a method for the routine measurement of QoL in CHs. To develop the best approach to implement a QoL measure it was considered important to discover the views of CH staff about measuring QoL as a part of practice. Thirty-five interviews were carried out with CH staff from three CHs in East Sussex, England to understand the perceived benefits of measuring QoL, the fit with existing practice and barriers to implementation. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis.

From the analysis, two overarching themes were identified; Perceived gains and Implementation. Overall there was a great deal of positivity towards using a measure, with a perception that it could provide positive outcomes for staff and care home residents. This positivity and benefit appeared to be an important feature in how staff saw the measure fitting into practice and of overcoming barriers and concerns to implementation. Findings from interviews were fed-back to managers from the CHs, and along with a review of the implementation science literature, were used to develop a practical guide for CH staff and implementation guidance. This was used to support and contribute towards an evaluation study of the use of the DEMQOL-Proxy in CHs, and addresses the acceptability and feasibility of routine measurements of QoL within a CH setting.

P6.6. LQDem-Tyrol - Quality of life of people with dementia in nursing homes in Austria


Background: It is estimated that currently approx. 130.000 people with dementia (PWD) live in Austria. The preservation and promotion of the quality of life (QOL) is a central objective in the provision of nursing care for PWD. Long-term care facilities face the major challenge to promote the QOL of the ever-growing group of PWD by providing adequate nursing care. Moreover, QOL is becoming increasingly important as outcome criterion in inpatient nursing care. In Austria, there is still very little research on the QOL of PWD in long-term care facilities. The aim of the study was to present the QOL of residents in Tyrolean nursing homes with mild to severe dementia and very severe dementia.

Methods: A cross-sectional study was carried out. Data were collected with QUALIDEM (Quality of Life in Dementia questionnaire) and FAST (Functional Assessment Staging).

Results: 149 people with mild to severe dementia and 80 people with very severe dementia residing in 23 nursing homes were included. The highest scores and thus an indication for a high QOL were observed in people with mild to severe dementia (FAST 4-6) in the QUALIDEM-subscales positive affect and feeling at home. The lowest scores with respect to the QOL were found in the categories restless tense behavior and having something to do.

People with a very severe dementia (FAST 7) had the lowest scores in the QUALIDEM-subscales social relations, restless tense behavior and having something to do, indicating a low QOL in these areas. The categories with the highest scores were positive self-image and feeling at home.

Conclusion: The results of the study provide first data and clues for possible developments or necessary changes in the care of people with dementia in long-term care facilities in Tyrol.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche