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QOP4. Quick oral presentations – People

Detailed programme and abstracts


QOP4.2. Moved

QOP4.3. Predictors of caregiver depressiveness in dementia: Results of the Bavarian Dementia Survey (BayDem)


1Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany, 2Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany

Background: The majority of people with dementia (pwd) are cared for at home by their relatives. These informal caregivers form a risk group of depressiveness.

Research question: What are predictors of depressiveness in informal caregivers?

Methods: BayDem is a multi-center, longitudinal study that was conducted at three different sites in Bavaria, Germany. Participants were pwd (according to ICD-10) and their informal caregivers. Data was collected by standardized face-to-face interviews in collaboration with local players. Caregiver depressiveness was measured using the WHO-5 Well-Being Index. Multiple regression was used in order to identify predictors of depressiveness.

Results: In total, the data of 300 informal caregivers was analyzed. Caregivers were above-average depressed as compared to a German representative sample of similar age. Behavioral and psychological symptoms of dementia (BPSD, assessed with the Neuropsychiatric Inventory, NPI) and the social integration of caregivers (assessed with the Lubben Social Network Scale, LSNS) were among the main predictors of depressiveness.

Discussion: This German population study was able to illustrate that high BPSD scores and low social inclusion in a network are risk factors for high levels of caregiver depressiveness. The data confirms findings from international studies.

Practical implications: To treat BPSD, psychosocial interventions such as the MAKS-therapy have proven effective. Additionally, social inclusion can be fostered through neighborhood projects such as multi-generation houses, dementia cafés or support groups.

Funding notice: digiDEM Bayern is funded by the Bavarian Ministry of Health and Care as part of BAYERN DIGITAL II (funding code: G42d-G8300-2017/1606-83).

QOP4.4. Factors affecting the perception of services by dementia informal caregivers in Greece: the role of familism

KOUKOULI Sofia1, KALAITZAKI Argyroula1, PANAGIOTAKIS Symeon2, MARKAKIS Georgios3, WERNER Perla4, TZIRAKI Chariklia5

1Hellenic Mediterranean University, Heraklion, Greece, 2Internal Medicine Department, Medical School, University of Crete, Crete, Heraklion, Greece, 3Department of Social Work, School of Health and Social Welfare, Hellenic Mediterranean University, Crete, Heraklion, Greece, 4Department of Community Mental Health, University of Haifa, Haifa, Israel, 55Research and Evaluation Department, Community Club of Elders, Research Department, Community Elders Club (MELABEV), Jerusalem, Israel

Aim: To investigate the factors affecting the perception of health and social care services by informal caregivers of persons with dementia (PwD) living in the community. One of the main objectives was to examine the impact of familism on service evaluation.

Method: This was a cross-sectional study.  A total of 118 caregivers were interviewed utilizing the ‘Perception of Services Scale’ (PSS), ‘The Familism Scale’, ‘The Zarit Burden Interview’, the ‘WHOQOL-BREF’, ‘The Hospital Anxiety and Depression Scale’, ‘The Katz Activities of Daily Living Scale’, ‘The Lawton Instrumental Activities of Daily Living Scale’, ‘The Problematic Behaviour Scale’ and ‘The Mini-Mental State Examination’. Data were analyzed with multiple regression analysis.

Results: Three PSS subscales were used as dependent variables: ‘Availability and Adequacy of Services’ (AAS), ‘Physicians’ Competence’ (COMP), and ‘Professionals Behavior’ (PB). Predisposing and enabling factors had a more significant effect on caregiver’s perception of services than need factors for the AAS and COMP subscales and two need factors of the PwD for the PB index. Familism was one of the predictors of AAS and COMP and was associated negatively with service evaluation. Functional (Katz index) and behavioral (Problematic Behaviour Scale ) decline were related to worse evaluation of professionals’ behavior toward the PwD. Need for adequate information and training of careers were also emphasized and negatively associated with service evaluation.

Conclusion: Understanding the factors that impact on service perception may direct interventions that facilitate the appropriate use of community services, to effectively support the PwD and their caregivers and possibly delay institutionalization.

QOP4.5. Lack of supports - the lived experience of family carers

EASTON Avril1, REID Laura1, FAMILY CARER ADVOCATE Member of the Dementia Carers Campaign Network2

1The Alzheimer Society of Ireland, Dublin, Ireland, 2Volunteer of the Alzheimer Society of Ireland, Dublin, Ireland

Listening to the lived experience of family carers is crucial to understanding how best to improve the journey of dementia for the person diagnosed and the family caring for them.  The Dementia Carers Campaign Network is an advocacy group of family carers that aims to be a voice of and for families impacted by dementia in Ireland.

Our advocates will highlight a principal issue affecting family carers which is lack of supports. They will discuss what lack of supports means in a practical sense by giving a first-hand account of their experiences both prior to the Covid-19 pandemic and also during the emergency period.

Lack of supports was already a known issue for carers prior to the pandemic. This is reflected in 2019 statistics from The Alzheimer Society of Ireland National Helpline which receives thousands of calls annually from family carers. Our advocates will give examples of when carers are most in need of support, what impact lack of supports has on them and how they could be better supported. 

Our advocates will also give real-life insight into the changing needs of carers throughout the Covid-19 pandemic. These needs were identified through research led surveys completed by family carers following the closure of many services and supports.

Our family carer advocates will also outline how they contributed to our organisational response to the pandemic which included advocating for improved home care and nursing home care whilst highlighting the continuing challenges of caring and heightened feeling of carer isolation.

Our advocates wish to convey that returning to ‘normal’ doesn’t provide an adequate level of support for families. Their ‘ask’ is that learnings are made from this time of lockdown to properly provide for carers, to ensure that they are visible, recognised for their significant contribution and no longer remain hidden heroes. 

QOP4.6. Experiences with online Alzheimer Cafes


Alzheimer Nederland, amersfoort, Netherlands

Alzheimer Nederland has 250 Alzheimer Cafés. The Alzheimer Cafés are an easy approachable way for people with dementia, caregivers an healthcare professionals to meet each other. The corona crisis forced the Alzheimer Cafes to close. This resulted into a loss of contact with others and a lack of sharing information and experiences about dementia for the visitors.

To provide an alternative to the visitors of the Alzheimer Cafes, the regional departments of Alzheimer Nederland transformed the Alzheimer Café into an online cafe. The regional departments used different ways to set up this online Alzheimer Café to continue the contact with the visitors and to support them during the time in which it is most needed. An online Alzheimer Café is an initiative that might be continued after the corona crisis. We are currently examining the possibilities to continue the online Alzheimer Cafés, not as a replacement but as an addition. In October we would like to share our experiences with the online Alzheimer Cafes and share the experiences of the visitors and the different variants.

QOP4.7. Behavioural and psychological symptoms in community dwelling people with dementia: Bavarian Dementia Survey

MEUER Sebastian1, KOLOMINSKY-RABAS Peter1, GRÄßEL Elmar2

1Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany, 2Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany

Background: Behavioural and psychological symptoms of dementia (BPSD) are common in people with dementia (pwd). BPSD are associated with caregiver distress. Especially BPSD in the nursing home setting is well known, whereas little information is available for BPSD in community- dwelling pwd.

Method: BayDem is a multi-center longitudinal study that was conducted at three locations (Dachau, Erlangen, Kronach) in Bavaria. Participants were pwd (according to ICD-10) and their informal caregiver. Data was collected by standardized face-to-face interviews. The Neuropsychiatric Inventory was widely used for BPSD evaluation and caregiver burden.

Results: In total 330 pwd could be evaluated. Merely 6% show none BPSD. The other pwd show symptoms of varying severity. The most frequent symptoms reported were depression, aggression, irritability and apathy. There is a strong positive correlation (r = .869, p <.001) between the recorded stress experienced by caregivers and the severity of BPSD.

Conclusion: Our results demonstrate the impact of BPSD on the burden of care for family caregivers in community dwelling.  Furthermore, BPSD play an important role in long-term outcome as well as health economics as BPSD are the most common cause for shift into institutionalized care. In order to reduce BPSD, suitable interventions for the home environment should established. Non-pharmacological interventions can be the first choice of therapy for community- dwelling pwd.

Funding: The Bavarian Ministry of Health and Care funded BayDem (funding code: G42b-G8092.9-2014/10-7).

QOP4.8. France Alzheimer's Institute

FRASCA Guillaume

France Alzheimer and related diseases, Paris, France

In order to meet families’ need for information and support, the training of family caregivers and volunteers of our local branches has been one of the core missions ofFrance Alzheimersince its creation in 1985.

Along with the evolution of the needs and of the sanitary, social and medical context, the Association has gradually improved its offer by providing training courses to health-care professionals. It is indeed essential that families can rely on professionals trained to deal with the specific symptoms of the disease.

As an approved training organisation since 1991, France Alzheimer decided in 2019 to develop the Association’s brand and this global approach dedicated to the people we daily assist. This is howFrance Alzheimer’s Instituteis born.

The trainings provided by theInstituteare part of the patient’s healthcare pathway. They are meant to improve care at various stages of the disease, from the initial diagnosis to end-of-life palliative care. They are aimed at care and home care professionals, as well as health and social institutions managers, eager to provide adequate training for their staff.

The institute aims to:

  • enhance care;
  • maintain a trusting relationship between professionals and families;
  • change the attitudes towards the disease;
  • facilitate the well-being of healthcare staff and patients;
  • fight against Alzheimer’s and related diseases in the long term.

The educational approach is interactive, lively and adapts to the participants’ real needs. It is designed to enable them to be proactive in their daily work. This expertise is the fruit of France Alzheimer’s field experience, as well as of clinician trainers’ scientific experience.

TheInstitute’s ambition is to strengthen the trusting relationship between patients and healthcare and support professionals. This is necessary in order to guarantee everyone’s well-being and change our attitudes towards the disease.

QOP4.9. Voices of the community: spotlight on the lived experiences of agitation


Otsuka, Princeton, United States

Objective: To better understand the challenges, opportunities, and “lived experience” of informal care partners and professional caregivers who provide care to people experiencing agitation due to Alzheimer’s disease.

Background: Despite the notable progress that the Alzheimer’s community has made in providing resources and support for care partners of people living with Alzheimer’s, there has been inadequate attention given to the unique needs care partners and professional caregivers confront when providing care to people experiencing agitation. This shortcoming hurts care partners and people experiencing agitation.  Agitation presents multiple challenges for care partners, including verbal and physical aggression, and even unwanted sexual advances. These symptoms can place a serious burden on care partners, with research pointing to an increased burden for care partners of people with agitation, compared to people with Alzheimer’s who do not experience agitation.

But before support, resources, and education can be created, it is vital to understand the specific and unique needs of care partners and caregivers in providing care to people experiencing agitation.

Methodology: To fill this knowledge gap, we undertook both qualitative and quantitative research, including: one-on-one interviews with care partners who identified as caring for a person with agitation; one-on-one interviews with advocacy organization leadership identified as working closely with care partners and people with agitation; a review of a company intranet discussion board of professional caregivers who self-identified as caring for clients with agitation; and a review of social listening data from online platforms.

Results: Results will describe the unique, multifaceted challenges care partners and caregivers face when caring for people experiencing agitation.

Conclusion: The research suggests three areas where care partners and caregivers need the most support:

1. Noticing the signs and symptoms of agitation

2. Getting a diagnosis

3. Findings resources that work in the absence of adequate agitation-specific materials

QOP4.10. Beyond quality of life: the importance of positive psychology outcome measures

STONER Charlotte

University of Greenwich, London, United Kingdom

Introduction: Quality of life is recognised as an essential outcome. However, there can often still be an overriding focus on negative aspects of dementia including symptoms of depression and anxiety. Whilst these are undoubtedly important, there has been little room for evaluating positive emotions or traits that people with dementia use to maintain or enhance their own wellbeing. Largely, this has been limited to qualitative explorations due, in part, to an absence of psychometrically robust outcome measures.

Methods: Two outcome measures were developed using stakeholder engagement, qualitative and quantitative methods. Concepts were selected by people with dementia and were developed and refined to form the Positive Psychology Outcome Measure (PPOM), measuring hope and resilience and the Engagement and Independence in Dementia Questionnaire (EID-Q), measuring subjective independence and social engagement. Draft items were reviewed and approved by people with dementia, supportive others and experts in the field. The measures were then evaluated with 225 people with dementia in the United Kingdom (UK).

Results: Psychometric analysis of the PPOM and EID-Q indicated excellent internal consistency (α = 0.94 and α = 0.921 respectively) and both measures were significantly correlated with established measures of quality of life (r = 0.682; r = 6.27, both p < .001) and depression (r = - 0.699; r = - 0.741, both p < .001), suggesting that the PPOM and EID-Q have important implications for wellbeing in dementia.

Discussion: People with dementia were involved in every stage of development of the PPOM and EID-Q resulting in outcomes that people with dementia felt were relevant and important for wellbeing. The importance of these concepts has also now been evidenced quantitatively. It is hoped that these measures are the first step in a new wave of research where the development and evaluation of positive outcomes are prioritised.

QOP4.11. Occupational therapy for older people with dementia and caregivers (COTiD) within the multicultural context

BAKKER Kim1, GRAFF Maud1, ROETS Lieve1, THIJSSEN Marjolein2

1Radboud University Medical Center, Department of Rehabilitation and Radboudumc Alzheimercentre, Nijmegen, Netherlands, 2Radboudumc, IQ healthcare, Nijmegen, Netherlands

The COTiD program is an effective community-based occupational therapy program for elderly persons with dementia and their caregivers at home. The program was originally developed in 1998 and was updated in 2010. Within this program, elderly people with dementia and their informal caregivers are assisted in carrying out meaningful activities with the aim to improve the self-esteem and personal effectiveness of the person with dementia and to increase the problem solving and competence of the informal carer.

COTiD trained occupational therapists have the impression that people from minority ethnic groups with dementia often do not receive occupational therapy and they experience dilemmas during treatment. These therapists asked whether the COTiD can receive a supplement for adaptation of the program aimed at elderly people with dementia  from various minority ethnic groups. Initially with a Moroccan migration background and then also with a Turkish and a Chinese migration background. In June 2019 a study commenced with the aim to gain insight into whether and which adjustments are needed to the (application of) COTiD program in order to be able to provide adequate home-based occupational therapy for Moroccan elderly people and their informal caregivers.

The first two steps of action research is being performed in the first year of research. In four iterative cycles an understanding of the perspectives, experiences, needs and recommendations for change of COTiD trained occupational therapists, occupational therapists with a Moroccan migration background and Moroccan elderly people with dementia and their caregivers will be obtained by performing individual interviews, focus groups and a questionnaire.

During the presentation the first results and the progress of the research will be presented.

QOP4.12. Creating a Research Agenda with people with dementia and carers

BLOK Hester

Alzheimer Nederland, Amersfoort, Netherlands

Goal: Alzheimer Nederland wants to fund research that directly influences the situation of people with dementia (pwd) and their caregivers. That is why our new research agenda is based on their experiences. Our goal was to put pwd and caregivers at the helm of the process towards this agenda.

Method: We defined several steps to achieve a set of research priorities. At each step, informal caregivers and pwd gave their input, both in face-to-face meetings and via our online panel (2000 caregivers of pwd).

Results: There were various ways in which we asked for input:

1. In two meetings informal caregivers discussed, together and with other stakeholders, the major bottlenecks in their care for someone with dementia (140 participants).

2. In four group discussions with pwd, we discussed what they consider important (40 participants).

We analyzed the input from 1. and 2. with the help of informal caregivers, scientists and other stakeholders and converted that into 11 concrete goals.

3. We asked members of our online panel to rate these goals, if possible together with the pwd (n = 639, 58 together with pwd).

From this step, we were able to prioritize the 11 goals.

Conclusion: We have been able to put pwd and caregivers at the helm of this process. Now there is a research agenda in which they recognize themselves and in which their needs are reflected. Now we can fund research on the top three priorities that have emerged:

  • Prevent overload of caregivers
  • Search for activities for pwd, at home and in the nursing home
  • Personalized care and attention in the nursing home

When funding research, we use guiding principles to ensure that the research has maximum impact. In this way we enable better care and support for people with dementia and informal caregivers.



Last Updated: Monday 28 September 2020


  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche