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QOP1. Quick oral presentations – Care approaches

Detailed programme and abstracts

QOP1.1. Care in the times of COVID-19: counselling and intervention for vulnerable caregivers at Fundació ACE


1Fundació ACE. Institut Català Neurociències Aplicades, Barcelona, Spain, 2Trinity College London and University of Cambridge, Barcelona, Spain, 3Institut Català de Neurociències Aplicades, Barcelona, Spain

Background: Since 1996, Fundació ACE, a non-profit organization, has provided support and care following a holistic health model approach for people with dementia and their caregivers. Due to COVID-19 pandemic, ensuring such support to caregivers has represented a major challenge to our institution.

Objectives: To identify vulnerable caregivers’ main needs during lockdown and provide counselling, strategies and support to aid in the management of care during the pandemic.

Methods: Based on the FACE memory unit data base in 2019, 2.240 persons with dementia and at least one social-worker appointment, were identified. Among them, we identified caregiver vulnerability in 620 cases, according to the following selection criteria: caregiver on their own, overwhelmed/overworked caregiver, health-compromised caregiver/frailty syndrome, caregiver without emotional support network. So far, Social-work team has performed 207 semi-structuralized phone interviews to identify specific needs of caregivers at risk under lockdown (April-May 2020). Actions taken involved personalized mentoring and counselling sessions.

Results: Sociodemographic data (63% women), identified needs and actions taken will be described. Main identified situations at risk are: psycho-emotional status (40%), care and control of dementia (20%), and lack of future action planning (12%). Analysis of needs and strategies (47% counseling, 31% education, 14% future planning) will be aligned with principles of relational intelligence, vulnerability perception, frailty syndrome, and individual/collective resilience.

Discussion: FACE’s approach to care in times of COVID 19 has not only provided a comprehensive intervention plan for vulnerable caregivers, but also has raised awareness of the importance of self-care at an emotional and personal levels to cope with their care duties. Such approach has led the implementation of tele-counselling, making us more accessible to caregivers; with the objective to identify hidden conditions of caregivers at risk and take action in a timely manner.

QOP1.2. Factors influencing end of life dementia care decision making: developing a model of decision making

DAVIES Nathan1, DE SOUZA Tanisha1, RAIT Greta1, SAMPSON Elizabeth L2

1UCL, London, United Kingdom, 2UCL, North Middlesex University Hospital NHS Trust, London, United Kingdom

Background: Many people with dementia and family carers do not want to plan or discuss end-of-life and the later stages of dementia. Many practitioners lack the confidence to engage carers or overlook the importance of ongoing discussions about planning. As dementia progresses, people with dementia are less likely to be involved in making decisions, leaving decisions to carers. Carers may benefit from further support with decision making. To develop this support, it is important to understand the decision-making process and influencing factors.

Aim: Identify decisions which need to be made towards the end of life and the factors that influence decision making from the perspective of people with dementia and family carers.

Methods: Semi-structured interviews with 21 family carers and 11 people with dementia. Interviews were analysed using thematic analysis methods and themes were mapped onto and used to revise a model of shared decision making (Interprofessional shared decision-making model) considering the context and the decision-making process.

Results: Participants described six key decisions towards the end of life covering place, and level of health and social care provided. Factors were split into those influencing the context and process. Contextual factors included: personal preferences, the depth of previous discussions, and the health of the person with dementia. Process factors focussed included: availability of information, loss of agency, shared sense of goals and values, managing emotions, the feasibility of options, and the negative outcomes of the decisions made.

Conclusions: Many carers and people with dementia struggle to discuss end of life care and make advance decisions. The interviews were seen as a unique opportunity to discuss these issues. These findings have informed the development of a modified model of decision making for end of life dementia care. This highlights the opportunities and time points to encourage discussions and support decision making.

QOP1.3. An innovative framework to support the development, implementation and evaluation of initiatives for prisoners with dementia


Birmingham City Univeristy, Birmingham, United Kingdom

Background: The prevalence of dementia in the prison setting is increasing due to the aging prison population with poor health (Brooke et al. 2018). Initiatives to support prisoners with dementia have been implemented. The aim of this study was to develop a framework to support the development, implementation and evaluation of initiatives for prisoners with dementia.

Method: The development of a framework from theoretical literature (Lee et al. 2016; du Toit and McGrath, 2019; du Toit et al. 2019), which was applied to evaluate initiatives to support prisoners with dementia. The framework consists of four main components including: 1) environment; 2) education; 3) meaningful engagement; 4) collaboration and support. Three initiatives were evaluated to explore the robustness of the framework: True Grit (Harrison, 2006); Special Needs Program for Inmate-Patients with Dementia (Hodel, 2009); and Gold Coats (Berry et al. 2006).

Results: The sub-components of each of the four components were further defined and refined during the evaluation process. The final framework consisted of: environment with 6 sub-components, which focused on the physical environment of the prison setting where the initiatives were delivered; education with 4 sub-components, focused on training and education of staff and prisoners regarding recognition of symptoms and supporting prisoners with dementia; meaningful engagement with 6 sub-components, focused on activities specifically for prisoners with dementia, and, collaboration and support with 4 sub-components, focused on collaboration of outside agencies, including health and social care.

Conclusion: The framework supports the development, implementation and evaluation of initiatives to support prisoners with dementia. The framework provides an understanding of the necessary components which need to be addressed in the development of initiatives, this process will ensure all basic requirements are met, and prevent any oversight due to a focus on the needs of the prison system and a demonstration of positive outcomes.

QOP1.4. Development and pilot study of the SPAN+ empowerment intervention for people with dementia living in the community


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

Background: Empowerment is seen as a promising concept in dementia care. In our previous study, we found that four themes are important to empower people with dementia: (1) having a sense of personal identity, (2) having a sense of choice and control, (3) having a sense of usefulness and being needed, and (4) remain a sense of worth. The aim of this study is to develop and pilot-test an empowerment intervention for people with dementia living in the community.

Methods: The Intervention Mapping framework was used. We conducted thirteen focus group discussions and three interviews with people with dementia, their family caregivers, and healthcare professionals to explore needs and wishes. An advisory expert team was involved in all project phases, and assured that the design of the research project, data collection and intervention design was suitable for all stakeholders. Three persons with dementia participated in the pilot study, together with their family caregiver and healthcare professional.

Results: We developed the SPAN+ intervention that aims to reflect and act on wishes and needs of people with dementia and their family carers regarding the four themes of empowerment. The intervention makes use of a set of conversation cards. These encourage the person with dementia and their family caregiver to conversate about the four themes of empowerment. Together with a healthcare professional, objectives are formulated for each of the four themes. Preliminary results of the pilot study showed that participants enjoyed using the conversation cards and the conversations with their healthcare professional.

Conclusion: We developed an empowerment intervention that supports people with dementia to go into conversation about the four themes of empowerment. The overall experience of people with dementia, their family caregivers and healthcare professionals was positive. Further research is needed to test the effectiveness and feasibility of the SPAN+ intervention.

QOP1.5. Transforming care for people with advanced dementia in care homes: a process evaluation of Namaste Care


Association for Dementia Studies, University of Worcester, Worcester, United Kingdom

Namaste Care was developed initially in the USA by Joyce Simard, (2013). A daily programme of physical, sensory and emotional care supports people living with advanced dementia to engage with carers, family and their surroundings. However, implementing change in practice is challenging for care homes. This presentation reports on a 3-year process evaluation of Namaste Care within 6 UK care homes. The NCI-UK study created an evidenced framework of essential elements forming a UK-model of Namaste Care. The study investigated the feasibility of implementation, including organisational facilitators and barriers, cost implications and outcomes for residents, family and staff. 

6 care homes, representing varied size/registration, were provided with standardised training and implemented Namaste Care once or twice daily for residents with advanced dementia. Interviews, diaries and observations explored the impact and experience of implementation (acceptability, feasibility, cost and development). Resident data on medication use (analgesia, anti-psychotics, sedation); untoward incidences (falls, accidents); service use (unplanned hospital admission); and measures of agitation and quality of life were collected monthly. Daily recording of intervention delivery and staff views of impact on participating residents were undertaken.

5 of 6 care homes successfully implemented Namaste for a 3-6 month period undertaking 523 sessions in total. Qualitative and quantitative data was collected from 52 residents, 27 staff and 10 family carers. Data suggests a positive impact on residents on several measures for little additional cost. Reorganising day-to-day care to incorporate Namaste Care is challenging, although care homes demonstrated similar key strategies for successful implementation. The study concluded Namaste Care is feasible to implement in UK care homes and appears to be beneficial for supporting improved social, emotional and psychological support for people living with advanced dementia. Implementation requires planning, purpose and persistence and these need to be considered an integral part of the intervention itself.

QOP1.6. Demonstrated feasibility of the FindMyApps tablet-based intervention to promote social health in dementia

NEAL David1, KERKHOF Yvonne2, BEENTJES Kim1, KOHL Gianna3, BERGSMA Ad2, MULLER Majon1, ZWAN Marissa1, GRAFF Maud4, DROES Rose-Marie1

1Amsterdam UMC, Amsterdam, Netherlands, 2Saxion University of Applied Sciences, Deventer, Netherlands, 3University College London, London, United Kingdom, 4Radboud UMC, Nijmegen, Netherlands

Objectives: FindMyApps comprises two components: 1) a tablet-based app to help people with dementia or mild cognitive impairment (MCI) find user-friendly apps for self-management and social participation; and 2) training for caregivers to use errorless learning principles to support the person with dementia’s learning process. Two pilot studies investigated the feasibility of implementing this complex intervention and of evaluating it in a randomized controlled trial (RCT).

Methods: Two consecutive pilot RCTs (n1=20 and n2=59) and parallel process evaluations were conducted following Medical Research Council (MRC) guidance for evaluating complex interventions. Dyads (person with dementia and their caregiver) were randomly assigned to receive FindMyApps or a control intervention (normal tablet with general advice). Validated questionnaires were used for baseline measurements and at three-month follow-up. Post-test semi-structured interviews were conducted with a purposively selected sample of participants.

Results: In both studies, most participants learned to use the FindMyApps app. Many required ongoing caregiver support. Errorless learning was experienced as helpful but training was implemented inconsistently. Some participants found the questionnaires too long. As anticipated, no statistically significant between-group differences were found regarding primary outcomes (first pilot, n=20). However, using FindMyApps may have improved aspects of self-efficacy and self-management (effect size hp2 range 0.12 to 0.42). FindMyApps seemed to support engagement in meaningful activities (second pilot, n=59). Drop-out rates were 37.5% and 12.1% respectively.

Conclusion: The intervention and research method were revised for a definitive randomized controlled trial: the app was optimized for tablet use, training was improved, and interviews shortened. Based on demonstrated feasibility, a definitive RCT in community-dwelling people with MCI or mild dementia started in spring 2020 (target n=150 dyads; 75 experimental, 75 control).

The pilot studies were conducted with funding from Association to Support VCVGZ and H2020-MSCA-ITN-2015 (INDUCT; 676265). The definitive trial is financed within H2020-MSCA-ITN-2019 (DISTINCT; 813196).

QOP1.7. Cost-consequence analysis of the Partner in Balance support program for informal carers of persons with dementia


Maastricht University, Maastricht, Netherlands

Objective: To perform a cost-consequence analysis of the blended care self-management programme Partner in Balance (PiB) for informal caregivers of people with early-stage dementia. This information could support decision-makers to consider reimbursing PiB in practice.

Methods: Alongside a randomized controlled trial we measured costs and consequences of PiB (face-to-face coaching combined with tailored web-based modules; n = 41) versus care as usual (n = 39). Data were collected at baseline and after 8 weeks. Quality of life was measured with ICECAP-O with UK index values to obtain utilities. Formal and informal care use by the caregiver and care recipient were obtained by the RUD-lite and multiplied with standard Dutch unit prices to obtain care costs. The intervention effect was estimated by a regression model including intervention arm and baseline value. 

Results: A significant increase of quality of life in favour of the intervention group was demonstrated at 8-week follow-up. The change in utilities was significantly higher in the intervention group (+0.063), corresponding with significantly quality-adjusted life years increase of 0.005 over an 8-week period. The change in number of mental health consultations was significantly lower (-1.2 consults per participant) in the intervention group. Total costs did not significantly differ between the groups. The incremental cost-effectiveness ratio was €113,223 per QALY. This is higher than the adopted cut-off of €40,000 per QALY. However, the uncertainty of the mean incremental costs per person over the 8-week period was very large.

Conclusions: From a clinical viewpoint, PiB can be recommended as it significantly increased quality of life over an 8-week timeframe. From a health-economic healthcare perspective, the added value of PiB is not demonstrated on the short term. Future studies including long-term follow up could clarify if the short-term increase in health status could lead to a decrease in long-term medical consumption. 

QOP1.8. Psychosocial support for people with dementia and their caregivers: building bridges between consisting initiatives of care and needs


1Trimbos-instituut, Utrecht, Netherlands, 2Dr., Maastricht, Netherlands, 3Prof. dr. , Nijmegen, Netherlands, 4Dr., Utrecht, Netherlands, 5MSc, Amersfoort, Netherlands

Background: People with dementia and their caregivers need (psychosocial) support for living with dementia or caring for a relative with dementia. Many psychosocial interventions for dementia are available in The Netherlands, but it is unclear if these interventions meet existing needs. In addition, caregivers often are unaware of the availability of these interventions, or do not know how to get access to them. Information on interventions is fragmented and can be found at various online sources. Caregivers prefer to have one digital overview of existing interventions. The aim of this study is to identify the needs of people with dementia and their caregivers and match these needs with existing psychosocial interventions. A clear and concise overview of available interventions is needed. Different phases of dementia and specifically the needs of young people with dementia and/or people with dementia and a migration background and their caregivers are also considered.

Method: A literature search on needs of people with dementia and their caregivers and existing interventions was performed from literature that was published between 2010 to 2020. Consulted databases included Pubmed, CINHAL, PsychInfo and Dutch databases. The results of these searches were supplemented by information collected by Alzheimer Nederland among professionals, people with dementia and their caregivers. Finally, interventions were linked to specific needs they address.

Results: The study will provide an overview of specific needs for which psychosocial interventions are available, which will be published on the online platform of Alzheimer Nederland ( The study will also provide insight into current gaps in the offer of psychosocial interventions for dementia and will give directions for future development and deployment of effective interventions. The results of the needs inventory, the match with existing psychosocial interventions and the resulting gap will be presented.

QOP1.9. À la recherche du temps perdu: music therapy for people with dementia (PwD) and their caregivers


Alzheimer Uniti Roma, Roma, Italy

It is well-known how the relationship between PwD and caregivers affects quality of life of both, as the disease progresses. It is also well-known that Music Therapy for PwD has shown increasingly satisfactory results. This quantum-qualitative research project, supported by Waldensian Church, and led by Alzheimer Uniti Roma within a Memory Café, uses music to improve this relationship. The objective for PwD are cognitive stimulation and well-being through music, for caregiver is to promote an effective comunication with the person, away from daily management of the disease. For both, there is the goal of getting away from isolation and being able to socialize on equal terms.

Materials and Method: 19 two-hour meetings, twice a month over a 12-month period. A multi-professional group led by a music therapist and a psychologist, following an active method, play Orff instruments and violin with partecipans.  Activities are singing, movement inspired by music, improvisation with instruments, listening and sharing impressions verbally. Maximum number is 37 participants (18 PwD and 19 caregivers), including spouses, sons, daughters, family assistants and friends, with an average of 18 participants per meeting. Quantitative analysis is through the Canterbury Wellbeing Scales (CWS), measuring 5 aspects of well-being in the PwD and the caregiver, both pre-and post-session. Family members receive an exercise book to continue activities at home.

Results: The CWS shows significant differences between entry and exit measurements in the well-being in both PwD and caregivers. The effect continues in follow-up. The qualitative analysis shows that PwD are less anxious and more communicative and caregivers are more aware and comfortable.

Conclusion: The data shows that Music Therapy set up with an accurate methodology and conducted in favourable surroundings such as Memory Cafés, promotes inclusion and improves relationships and quality of life for PwD and caregivers. Results will be presented in video.

QOP1.10. Development and assessment of feasibility of psychosicial intervention SOCAV-in-Primary-Care

DAS Phébe1, DAS Phébe2, ROETS-MERKEN Lieve3, GRAFF Maud3

1Radboudumc, Nijmegen, Netherlands, 2MSc, Nijmegen, Netherlands, 3PhD, Nijmegen, Netherlands

Background: There is a need of feasible and effective interventions to support community-dwelling people with dementia and their caregiver. If more person-centered care would be offered at home, their sense of dignity, self-reliance, autonomy, daily functioning and quality of life might increase.  The psychosocial intervention “SOCAV-in-primary-care” (SOCAV-PC), is such a program. SOCAV was successfully tested in nursing homes and involves a training and coaching to nurses and nurse-assistants in supporting persons with dementia and their caregivers to maintain or improve their self-reliance, daily functioning in meaningful activities and quality of life. The aim of this study was to investigate which elements could improve the likelihood of success of the SOCAV-PC program, and to evaluate its feasibility.

Methods: SOCAV-PC was developed and its feasibility assessed according to the MRC guidelines for complex interventions. In phase 1, the developmental phase, qualitative data on the participants’ needs, and the eligibility and elements for success of the contents and delivery of the draft intervention was collected in focus group interviews with caregivers and homecare professionals separately, and in individual interviews among persons with dementia. Phase 2, feasibility was evaluated in a pilot study in terms of acceptability, demand, implementation and practicability of the SOCAV-PC program. Data was derived from (1) intervention and coaching diaries from the homecare professionals, (2) coaching diaries of the coaches, (3) monitoring of testing procedures and (4) focus groups among caregivers and homecare professionals, and (5) individual interviews with participants with dementia.

Results: Results will be presented and discussed at the conference.

Conclusion: The results of this study will inform the design for part 2 of the feasibility phase, the pilot effectiveness study.

QOP1.11. The effectiveness of counselling for people with dementia and their families


1Leeds Beckett University, Leeds, United Kingdom, 2University of York, York, United Kingdom, 3University of Leeds, Leeds, United Kingdom, 4York St John University, York, United Kingdom

As there are limited pharmacological treatments available, psychosocial interventions are recommended to support people with dementia. There is currently limited evidence for the effectiveness of counselling interventions for people living with dementia, and existing research lacks consistency in intervention design, outcomes, and efficacy. This research aimed to evaluate a 12-week counselling intervention for people with dementia and their families. One therapist ran the intervention in a community-based service available to any individual with a dementia diagnosis or a relative/friend of individuals with this diagnosis in the catchment area. Interviews were conducted with individuals before their first, and after their final, counselling session. A total of 29 participants completed pre-counselling interviews (6 people living with dementia and 23 relatives/friends) and 25 completed post-counselling interviews. An interview was also conducted with the therapist to consider their perspective. There were four main themes at the first time point and four main themes at the second time point. At the first time point these were: support seeking, acceptance of own mortality, independence and burden, and positive appraisals of the situation. At the second time point these were:; reflection on life, therapeutic relationship, autonomy of condition, and positive appraisals of the situation. Participants reported benefits from a 12-week counselling intervention, in areas including grief, acceptance, and relationships. Adaptations to the approach were required to ensure that a therapeutic relationship was developed with people with dementia. Limitations include only recruitment of participants in the early stages of dementia, meaning we do not know how counselling may affect those with more severe cognitive impairment. Additionally, only one service was included in the present research. Further research is now needed to refine understanding of counselling for this population, develop guidance for approaches, and examine the effectiveness of counselling for people with dementia on a larger scale.

QOP1.12. Therapeutic dance movement for mild cognitive impairment patients

MÄGI Mari-Liis, KAARMA Katrin

Dementia Competence Centre, Viljandi, Estonia

There are agreed benefits of early noticing and diagnosing cognitive decline. Mild cognitive impairment (MCI) is a syndrome defined by clinical, cognitive, and functional criteria. Growing scientific evidence shows that physical and psychological interventions targeted at people with MCI will enable better quality of life for them and may slow down progression in cognitive decline.

The Estonian Dementia Competency Centre is promoting psychosocial interventions for MCI patients. One of the pilot projects was dancing. Based on scientific literature, dance movement based intervention is outstanding as it influences emotional, social, physical and cognitive domains.

The objective of the project was to assess, whether dance movement based activity is acceptable and suitable for elderly with MCI and whether this intervention improves their psychosocial wellbeing. Based on a screening tool (Montreal Cognitive Assessment; MoCA) for determining cognitive decline two groups of people were formed. Control group was formed of people without cognitive decline (MoCa score 26 or higher) and the test group consisted of people with MCI (MoCA score under 26 but higher than 20).  Baseline assessments of all participants` general health, cognitive and emotional status and physical ability were carried out. Dance movement training sessions were taking place twice a week during 12 weeks.  The same measurements were carried out for the participants after 12 weeks. The drop-out of participants was substantial but it was equal for MCI and non-MCI persons. 24 participants were selected and assessed; 20 stared dance lessons and 12 of them   finished it after 12 weeks.  The overall reported subjective psychosocial wellbeing and physical ability improved. Participants assessed the activity as rewarding and pleasant.  They pointed out the benefit of good social contacts and support. The improvement of physical performance specially balance and coordination improved subjectively and visually during the dance movement based activity.



Last Updated: Tuesday 30 June 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