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QOP1. Care and services I

Detailed programme, abstracts and presentations

QOP1.1. Involving families in the hospital care of people living with dementia

KELLEY Rachael1, GODFREY Mary2, YOUNG John3

1Centre for Dementia Research, Leeds Beckett University, Leeds, United Kingdom, 2University of Leeds, Leeds, United Kingdom, 3University of Leeds, Bradford, United Kingdom

Background: A quarter of people in general hospitals are living with dementia, but staff can struggle to provide them with high quality, person centred care and they can find being in hospital difficult. At home, people living with dementia are often supported by family members, who may have an in-depth understanding of the person. Involving families could help to improve hospital care, but little is known about how families are involved in care or the impacts of family involvement practices.

Aim: To explore how families of people living with dementia are involved in hospital care, and the impacts of their involvement. 

Methods: Ethnographic data were collected from two older peoples’ hospital wards via observations, conversations and interviews with people living with dementia, families and staff. In total, 400 hours of observations and 47 interviews were conducted. Flexible data collection methods enabled people living with dementia to take part.

Results: When families were involved in care, there were many potential benefits for people living with dementia, including enhanced: interactions with staff; participation in care; decision-making; and maintenance of prior routines and levels of functioning. Despite these benefits, there was great variability in the degree to which families and their knowledge were involved in care. In addition, family involvement was not uniformly positive; careful attention was required to ensuring the needs and wishes of people with dementia were not overlooked.

Conclusions: This study demonstrates the benefits of involving families and their knowledge in care, advocating for opportunities for family involvement, alongside the involvement of people living with dementia, to become a more routine component of hospital care. The findings provide much needed evidence about how families’ knowledge and expertise can be used to effect improvements hospital care for people with dementia, and the conditions required to facilitate families’ involvement.

QOP1.2. “DECREASE Framework: A holistic approach to managing stress and distress in dementia hospital care”


1Healthcare Improvement Scotland, Glasgow, United Kingdom, 2NHS Education for Scotland, Glasgow, United Kingdom

Stress and Distress (S&D) is one of the most common and complex aspects of dementia care. During our specialist dementia unit improvement programme, the need for a structured approach to the prevention, identification, assessment and management of S&D in these units was identified.

The NHS Education for Scotland (NES) psychological interventions in response to stress and distress in dementia programme was developed to increase the workforce capacity to deliver evidence based psychological interventions to S&D in dementia. Incorporating the elements of this national programme and based on principles of Quality Improvement (QI) and easy-to-remember techniques, we designed the DECREASE Framework, with accompanying guide, which incorporates the necessary elements for a proactive holistic approach to S&D:

  • Diagnosis
  • Engagement
  • Care planning
  • Review
  • Environment
  • Activities
  • Social contacts and support
  • Education and training

An important starting point to address before considering interventions for S&D in dementia is the question of ‘Who is this behaviour causing distress to?’This follows an important aspect of the DECREASE framework: the emphasis on prevention and proactive interventions. In other words, a crucial component of thinking about S&D in dementia should be the active search and application of measures that have shown to prevent the appearance of distress or that minimise the potential for its occurrence and reducing psychotropic medication prescribing.

Using QI techniques, we tested the feasibility of using this framework in two specialist dementia units in two different ways: first, for the assessment and treatment of individual patients with high degree of S&D; secondly, to create a new person-centred nursing documentation and a transferable tool for the care of a person with after discharge. We are gathering data on its impact on staff, people with dementia and their carers. We plan on extending the testing to other hospital settings.

QOP1.3. How dementia friendly are Dutch hospitals? Experiences of people with dementia and carers with hospital care

VAN DEN BUUSE Susanne1, BRUIJS Anne-marie1, DE BRUIN Hans2

1Alzheimer Nederland, Amersfoort, Netherlands, 2PWD, Utrecht, Netherlands

People with dementia are often hospitalized due to illness and fractures related to falling incidents. It is estimated that 33 to 40% of the hospital beds are occupied by people with dementia. Yet, still little is known about how dementia friendly hospitals are. Preliminary research indicates that hospital care for people with dementia is inadequate. Together with Annette Keuning from the University of Groningen, Alzheimer Nederland conducted a study on the experiences of carers and people with dementia, using a questionnaire for carers and focus groups with carers and people with dementia. The results indicate that hospital care for people with dementia is below standards. Only 40% of the carers say they would recommend their hospital for people with dementia. The fact that people have dementia is often not taken into account by the nursing staff. Care for people with dementia is often inadequate, resulting in slower recovery and sometimes even to health decline. Carers often step in to help with the daily care, which is beneficial for the person with dementia but also creates an extra burden for carers. In this presentation we present the highlights of the study and provide recommendations for better hospital care for people with dementia.

QOP1.4. Living with a diagnosis of frontotemporal dementia (FTD): What helps and hinders?

CROY Suzanne

University of Abertay, Dundee, United Kingdom

Objectives: (1) To investigate the experiences of living with a diagnosis of frontotemporal dementia (FTD) from the perspective of the service user. (2) To identify factors which help and hinder living well with FTD, so that we can inform clinical practice.

Methods: Data consists of 13 semi-structured interviews of 7 people with a diagnosis of FTD.  Participants were recruited via third sector services across central and western Scotland. An interpretative phenomenological analysis (IPA) approach was adopted.

Preliminary results: Four themes emerged in preliminary analysis: (1) Coping with the physical symptoms of FTD; (2) The ability to reflect deeply about their judgement and behaviours after they happen, as opposed to a lack of ability and control over decision-making ‘in the moment’; (3) Being insightful and aware of changes to their sense of self and their societal roles; (4) The importance of family support in dealing with challenges as they arise.

Conclusion: People with FTD often experience challenges different to those with other sub-types of dementia.  Currently support and services offered to people with FTD are predominately developed with other sub-types of dementia in mind. In order to better support people with FTD, it is paramount to involve people with FTD in support and service provision. Developing support and services which places the views and experiences of people with FTD at the centre is of fundamental importance in improving standards of care, developing effective interventions and raising awareness of the condition

QOP1.5. Care burden, loneliness and dementia friendly environment: Results of the 2018 Dutch Dementia Carers Monitor


Alzheimer Nederland, Amersfoort, Netherlands

Every two years the Dementia Carers Monitor (“Dementiemonitor Mantelzorg”) is conducted by Alzheimer Nederland and Nivel, the Netherlands institute for health services research. The monitor consists of a survey for carers of people with dementia about their well-being and needs for care and support. In the monitor of 2018 a total of 4,459 carers filled out the survey (both online and on paper). The results show that 1 out of 8 carers of people with dementia feel heavily burdened or overburdened because of the care they provide to their relative with dementia. In accordance with the European Carers' Report 2018 of Alzheimer Europe, carers often reported loneliness: they are twice as lonely as the average Dutch person. Fortunately, the dementia friendliness of their social environment seems to increase. In this presentation we focus on these 3 themes of results: care burden, loneliness of carers and the dementia friendliness of their social environment. We also focus on which care and support carers indicate they need most. Here, the case manager takes a central role. Together with home care and day care, this professional belongs to the top-3 of care and support carers say they need most to be able to sustain.

QOP1.6. Understanding personhood in formal care: The perspectives and experiences of people with dementia, family carers and health care professionals


Centre for Economic and Social Research on Dementia, NUI Galway, Galway, Ireland

Background: Personhood in dementia is the cornerstone of person-centred care, while supporting personhood and achieving person-centred care are frequently cited as key policy objectives. However, there is uncertainty around the meaning of personhood and how it is realised in formal care provision. This study examines the experiences of personhood in formal care relationships, from the perspectives of three directly related groups: people with dementia, family carers and health care professionals.

Methods: Using a multiperspectival design, this study involves semi-structured interviews with 31 participants to explore the meaning and application of personhood in dementia care: eight people with dementia, eight family carers and 15 health care professionals. Using interpretive phenomenological analysis, each individual group was analysed separately, then the three groups were examined collectively for consensus, conflict or reciprocity of concepts (Larkin, Shaw & Flowers, 2018).

Results: The study found some consensus on the importance of trust and respect in dementia care. Personhood within care relationships is enhanced through: listening, inclusivity, warmth and humour. Respondents also referenced the importance of getting out and about, normalised living and social interaction for maintaining and enhancing personhood for people with dementia. However, there was conflict in how the groups conceptualised the person with dementia, particularly in relation to autonomy. While choice and flexibility were identified as important to personhood, family carers and health care providers were often narrow in their interpretation of autonomy in decision-making for people with dementia.

Conclusions: This study raises important questions about how people with dementia are conceptualised within formal care provision, both as individuals and at a system level. The findings provide a guide to policy makers interested in ensuring that dementia care focuses on supporting personhood and guaranteeing that what matters most to the person with dementia is embedded into formal care provision and formal care relationships.

QOP1.7. Including informal caregivers in decision making regarding the treatment of neuropsychiatric symptoms in dementia


1University Medical Centre Groningen, Groningen, Netherlands, 2University of Twente, Enschede Netherlands, 3Leiden University Medical Center, Leiden, Netherlands

Background:In the Netherlands, physicians are legally obliged to ask informal consent for medical decisions in patients with insufficient decisional capacity. The informal caregiver’s knowledge may be important in preventing occurrence or escalation of neuropsychiatric symptoms in nursing home residents. However, it is not clear how informal caregivers are involved in decision making regarding treatment of neuropsychiatric symptoms. This study aims to get an overview on the current involvement.

Methods:Participants were selected by applying purposive sampling.In-depth interviews with 10 quadruplets - informal caregiver, nurse, physician and psychologist of one resident – were conducted regarding either a start, stop or change in dose of a psychotropic drug for the treatment of neuropsychiatric symptoms. Interviews took place between February 2018 and April 2019. The data was thematically analyzed

Results: The informal caregiver was contacted in most cases, however, they were not present during the phase of discussing treatment options. During the interviews, professionals indicated to take the perspectives of the informal caregiver into account either explicitly (by asking) or implicitly. However, informal caregivers were only informed about a decision or presented with a treatment option and were asked for consent. Professionals were more likely to involve informal caregivers during the decision process that were more assertive. Children were more likely to insist on getting involved in comparison to spouses who more often expressed their trust in professionals and were satisfied with leaving the decision to the professional.

Conclusion: More structural contact moments might be needed with the informal caregiver linked to behavioral consultations to explore possible treatment options together. This is likely to result in better treatment decisions. Discussing treatment options with the informal caregiver early on might stimulate spouses to take part in the decision making.

QOP1.8. ADDITION: Patient-relevant endpoints in the progression of Alzheimer’s disease


VUMC Alzheimercentrum, Amsterdam UMC, Amsterdam, Netherlands

Background:Alzheimer’s disease is a progressive disorder, characterized by a long predementia stage and a high variability in disease course between patients. Prediction of disease progression is important in clinical decision making and care planning. Research mainly focused on development of dementia as the endpoint. However, we do not know the endpoints of relevance to patients and their care partners.

Objective:The aim of this study is to identify endpoints of relevance to patients and their care partners in the progression of Alzheimer’s disease.

Methods:This study uses a two-step approach with focus groups followed by a survey. As a first step, we will conduct focus groups with patients and their care partners between May 2019 and July 2019. Patients who visit a memory clinic for diagnostic testing will be recruited. We will compose heterogeneous groups in terms of gender, age, education, ethnicity and disease stage (subjective cognitive decline (SCD), mild cognitive impairment (MCI) or Alzheimer’s disease dementia). Transcripts of the audiotaped focus groups will be analyzed using thematic content analysis, inductively identifying endpoints emerging from the data. The resulting list of endpoints will serve as input for the second step; an online survey to be completed by a group of patients (N=50) and care partners (N=50). We will ask them to select endpoints of most importance, and rank them in order of relevance.

Results:This study will result in a comprehensive list of endpoints relevant to patients and care partners, ranked in order of importance.

Discussion:Integration of these patient-relevant endpoints into a disease progression model will help to provide patients and their care partners with personalized information on the disease course. Additionally, such models are important to evaluate the (costs)effectiveness of new diagnostic and therapeutic strategies that aim to influence the disease progression of Alzheimer’s disease.

QOP1.9. Dementia Experience Toolkit: Measuring experience of people with dementia


Alzheimer's Society, London, United Kingdom

The issues: Alzheimer’s Society’s ‘Fix Dementia Care Report, 2018 and Care Quality Commission have found that people with dementia often receive disproportionately poor or variable care. Health and care services need to enable people live better with dementia. Small changes can make big impacts. Measuring experience using only quantitative methods may exclude people with dementia from being able to express themselves meaningfully.

Dementia-friendly qualitative methods, involving people with dementia, can identify how and why to improve services. Round-table discussions with Department of Health and Social Care in 2017 recommended creating a resource to help organisations ‘measure’ experience of people with dementia. 

Identifying solutions

Surveys to learn beyond desktop research

  • Commissioners, regulators, health and care services
  • People affected by dementia.

Key themes: 37 commissioners, regulators and providers 

  • 1 in 2: staff lack skills/knowledge to engage people with dementia about their care
  • 1 in 4: lack confidence working with qualitative data
  • 1 in 8: concern - people with dementia not capable of being involved.

Key themes: 30 people affected by dementia:

  • Missed opportunities to learn how and why to improve services
  • Professionals not valuing the dementia voice
  • Poor approaches to qualitative feedback. 

Developing our solution

Prototype web resource: co-produced with around 100 people with dementia, carers, commissioners, researchers and people in health and social care.

  • (through to advanced stages of dementia).  
  • co-production, involvement, unobtrusive and digital methods.
  • organisations, research studies, initiatives, handbooks and standards.

Feedback about resource: 

  • Quick and easy to use.
  • Helpful to improve services, support integration, and living in communities.
  • Great it includes work from many organisations including with diverse communities and people with learning disabilities


  • Resource for Alzheimer’s Society’s website.

QOP1.10. Carer Resilience

REID Laura

The Dementia Carers Campaign Network facilitated by the Alzheimer Society of Ireland, Dublin, Ireland

Background: The Dementia Carers Campaign Network (DCCN) was set up in 2013 by the Alzheimer Society of Ireland. The DCCN is a group of people who have experience caring for a loved one with dementia. It aims to be a voice of and for carers of loved ones with dementia in Ireland.

For the Alzheimer Europe Conference, the DCCN would like to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the later stages of caring for a loved one with dementia.

Content: The factors found to be of most importance to carer resilience is ‘being informed’ and ‘being supported’. The piece of qualitative research recently conducted by the DCCN with its members sought to ascertain how informed and supported carers felt as their loved transitioned to long term residential care and the stage thereafter.

This research did not discuss the level of professional care given to their loved one but what supports and services were offered to the carer at that time and how this affected their resilience. Questions posed to members included: How well prepared were you for the transition of your loved one into long term residential care? Looking back, what specific supports/services do you feel would have helped you?  The feedback from members gave insight into how ill-informed and badly supported carers feel at this critical and highly emotional stage.

The topic of caring for a loved one availing of hospice care naturally emerged during the research process.  The research indicated that carers felt more informed and supported as their loved one availed of hospice care than long term residential care.

A member of the DCCN would like to present these findings and speak of their own experience of carer resilience at the Alzheimer Europe Conference.



Last Updated: Wednesday 11 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche