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QOP3. Care and services II

Detailed programme, abstracts and presentations

QOP3.1. Using Appreciative Inquiry with people with dementia to discover positivity and influence the future


Bangor University, Bangor, United Kingdom

Positioning theory aims to understand how narratives inform action. People with dementia often feel positioned by others as lesser members of society and can be denied the power to influence this, due to the original position. Appreciative Inquiry (AI) is a collaborative methodology that views all social systems as amenable to effective and positive change. The AI methodology was introduced to a group of people with dementia to explore their own views regarding how they felt positioned by other members of society, how they would envision a preferred future and to demand action, in this case the creation of a film, to influence the behaviour of others. Using the AI 4D cycle (Discovery, Dream, Design, Delivery) allowed the participants to address their concerns with a lens of positivity. Storytelling is aligned to the poetic principle of AI and the positive stories shared by the participants allowed for the identification of contributory factors that needed to occur if this group of people was to feel respectfully positioned within society. The generative potential of the AI Dream stage liberated the imaginations of the participants to propose their ideal world, acknowledging that whilst 'words matter' it is the context, positions and actions created by words that have the greater impact. Using what they had 'Discovered' and their 'Dream', the participants 'Designed' and created a film to share with other members of society as a mechanism to influence and 'Deliver' a positive societal change. AI has the potential to acknowledge negative realities whilst positively guiding others to understand how people with dementia want to be positioned or treated rather than focussing on the limited ideas of how they shouldn’t. AI provides a collaborative process to understand the needs and experiences of people with dementia and their caregivers to inform policy and service design.

QOP3.2. The Irish Actifcare Cohort at 42 months: Evidence for continued unmet need and transition to long-term care

HOPPER Louise, BLAKE Cathal

School of Psychology, Dublin City University, Dublin, Ireland

The Access to Timely Care (Actifcare) JPND-funded project examined the (un)met needs of Irish people with dementia living at home from three perspectives: the person with dementia, a family caregiver and an independent researcher. Forty-three people with dementia (22 female mean age 74.05, mean MMSE 20.34) and caregiver (33 female mean age 58.12) dyads participated. Quality of life (QoL), physical and psychological health, social networks, needs and service use were measured. Dyadic relationship quality reduced significantly between each time point. Carers of people with moderate dementia (CDR 2) had worst outcomes at each time point. Fewer unmet needs were significantly associated with better dyadic QoL, yet high levels of unmet need were found, especially regarding psychological and social needs (regularly rated as ‘not the right type of care’). Self-care was the only domain in which more help was received from local services than from friends and family. High levels of met physical need demonstrated a continued primary emphasis within the Irish health service on solely supporting these needs. A new 36-month follow up study, funded by DCU, was carried out to examine changes in (un)met needs and subsequent care trajectories for Actifcare dyads (n = 34). Twenty people with dementia were community-dwelling (alone=6, with spouse=7, with other=7), 12 had moved to long-term care (LTC) and 2 had died since the conclusion of the Actifcare project. Total need significantly increased at 36-months primarily driven by higher numbers of met needs. QoL ratings show significantly higher need for self-care support and significantly reduced ability to carry out usual activities. Neither home- nor day-care use changed significantly. We explore the differences in care trajectories for those who remained living in the community and those who transitioned to LTC and the implications of not supporting a holistic range of needs in the community.  

QOP3.3. Home based memory rehabilitation in dementia – Update on occupational therapy improvement project in Scotland

MCKEAN Alison, HUNTER Elaine

Alzheimer Scotland, Edinburgh, United Kingdom

Background: Scotland’s AHP Dementia Policy Connecting People, Connecting Support (Alzheimer Scotland, 2017) includes a key ambition around enhanced access for people living with dementia (plwd) to AHP led specialist interventions. 

The home based memory rehabilitation (HBMR) programme (McGrath, 2006) is an evidence based occupational therapy (OT) intervention in post diagnostic support (PDS).  Building on the initial work and utilising an improvement approach, HBMR was piloted in 12 Board Areas across Scotland.  The aim was to improve the care and experience of plwd and their carers by March 2019 by improving access to a specialist OT post diagnostic intervention.

Outcomes: Quantitative data continued to reflect an increase in use of memory strategies and decrease in reported everyday memory problems for plwd.  Reinforcing that plwd can learn and utilise new skills.

Qualitative data captured via emotional touchpoints from plwd reflected an improvement in confidence, sense of control and hope for the future.  Anecdotal evidence from clinicians reflected that plwd were now being referred to OT earlier in their diagnosis.

Next steps based on learning: feedback from clinicians and plwd highlighted that it was necessary to review and update the resources, which are currently undergoing a rapid cycle of testing. An electronic system has been created for additional resources with the aim of improving individual tailoring and person centredness. Learning from clinicians and plwd has resulted in updates to the suite outcome measures.  The project is now also informing the International Consortium of Health Outcome Measures (ICHOM) dementia standard set.

Learning from national spread and scale is being applied to roll out of other AHP interventions in dementia. Regular communication and strong relationships have enabled success so far. This will be continued in order to further improve access to OT in the PDS period for plwd.

QOP3.4. ABC Model: A tiered, integrated pathway approach to peri and post diagnostic support for families living with dementia


Dementia UK, London, United Kingdom

Peri and post diagnostic services for people with dementia and their families in England are commissioned with a lack of integration and inconsistency which creates gaps in service provision. Service providers are often commissioned to provide components of service provision unaware of the resources that are available outside of their organisation to support those affected by dementia. Therefore, families are not receiving the appropriate care in a timely manner, often accessing support at a point of crisis as opposed to accessing services in a more preventative model of care and support. This reactive model of care is costly financially to the health and social care system and often has a negative impact on the quality of life of those affected.

The ABC model was developed following an evaluation of a pilot Admiral Nurse service in Norfolk which identified the varying needs of families affected by dementia and the gaps and lack of resources to meet these needs that existed. The ABC model provides a simple and adaptable framework that was developed to support providers and commissioners to consider the resources required to meet the varying needs of families inclusive of both the person with dementia and their families and carers.

A - Tier 1 Advice and information provided in generalist information and advice services. 

B- Tier 2 Bespoke information and support relating to aspects of dementia care.  

C-Tier 3 Complex clinical care needs in relation to dementia and co-morbidities provided by Admiral Nurses. 

The model has informed commissioning of services with multiple stakeholders working collaboratively to deliver peri and post diagnostic services for people with dementia and their families in various formats, reducing gaps in service provision and improving outcomes for families affected by dementia.

QOP3.5. Living with Alzheimer's or a related disease


France Alzheimer's and related diseases, Paris, France

On the early spring of 2018, France Alzheimer launched a program dedicated only to people with dementia. With this program, the French organization wishes to provide new answers to those recently diagnosed.

One of the main objectives of this program is to improve the quality of life for people with dementia and their caregivers and specially to enable the newly diagnosed person to be proactive in dealing with what they are going through by helping them to process the situation. 

France Alzheimer’s and related diseases identified 3 main admission criteria to the program for the future beneficiaries: the diagnosis must have been made and announced and the person concerned is interested in the program and wishes to participate.

This program, in which the caregiver may not participate, is threefold:

  • a personalized group information sessionto identify the needs and define priorities for people with dementia.
  • several group workshopslasting 2 hours each: (1): Share my experience and knowledge of the disease; (2): Emphasize my skills and share my solutions; (3): Identify my available tools to help in my daily life; (4): My family and social environmment, and me; (5) Managing my stress; (6): What are my wishes?
  • a final individual overviewled bythe workshop moderator whowill be able to assess the impact of the program on the quality of life of the person concerned.

The evaluations carried out after the first experienced programs have shown a high level of satisfaction among the beneficiaries. They mention in particular a less frequent feeling of isolation and a higher self-esteem, benefits from supporting each other and sharing strategies and a resumption of activities along with a feeling of success.

QOP3.6. Home-based Occupational Therapy services in France: Findings of a national survey

TALBI Benjamin, VILLET Hervé, CASTEL-TALLET Marie-Antoinette

Fondation Médéric Alzheimer, Paris, France

Introduction: Improving home-based care is part of many countries’ dementia strategies. France is no exception: in 2008, care services were implemented nationwide to provide personalised occupational therapy (OT) interventions to people living at home with mild-to-moderate dementia. The main goals of these 3-month interventions are to cover better the care needs of people with dementia (PwD) and to delay functional decline. Between 2017 and 2018, the Fondation Médéric Alzheimer conducted a national survey on these services in order to gather better knowledge on their work organisation, on the methods used to tailor interventions to PwD’s individual needs, as well as on the issues faced in routine care.

Method: The questionnaire was sent by post and e-mail to all active home-based OT services (N = 390; 78% response rate). It contained both open and closed-ended questions, which allowed to combine quantitative and qualitative methods of analysis.

Results: To personalise interventions, French home-based OT services make use of a wide range of needs assessment tools, covering cognitive, physical as well as environmental aspects of frailty. The multidisciplinary composition of these services largely accounts for their versatility in needs assessment. Furthermore, our results suggest that in some parts of the territory, interventions are hindered by the lack of integration of OT services in the healthcare system. Indeed, on one hand, referring practitioners still have a fragmented knowledge of these services and of referral recommendations. On the other hand, at the end of interventions, therapists often face difficulties in finding professionals and services able to ensure the continuity of care. Finally, as compared to international settings, French OT interventions for PwD living at home differ in terms of care settings (ambulatory vs. home-based), carers’ professions, duration and pace.

QOP3.7. Clinical decision making in additional CSF testing for diagnosis in neurodegenerative diseases; which patient to test?


1Amsterdam UMC Alzheimercentrum, Amsterdam, Netherlands, 2VTT Tecnnical Research Centre of Finland and Combinostics, Tampere, Finland, 3Combinostics, Tampere, Finland

Aim: Although relevant for diagnosing Alzheimer’s disease (AD), beta amyloid 1-42 (AB42) is not measured for all patients in clinical practice due to economic reasons, availability and invasiveness of measurement. Therefore, we evaluated whether a stepwise approach can identify patients who benefit most from having CSF biomarkers assessed

Methods: We included 535 subjects (65±8 years, 49% female, 24±5 MMSE) from three memory clinic based cohorts, consisting of 139 controls, 286 AD, 82 frontotemporal lobe dementia (FTD) and 28 vascular dementia (VaD). Each subject had CSF biomarkers, MRI images and neuropsychology test results. MRI images were quantified using the cNeuro® cMRI quantification tool. Disease state index technology was used to classify patients to different diagnostic groups. In addition, the technology enables defining probability of correct class (PCC) for each subject estimating the probability that the suggested diagnosis is correct.

Results: When the stepwise approach is applied, only neuropsychology and MRI are used first. A diagnosis could be made in 228(42%) patients (PCC>0.85). For the remaining 308 patients, adding AB42 was simulated. In 102(33%) patients the cutoff of PCC 0.85 was reached. When we added the actual CSF results of these patients to calculate DSI and PCC, 50(49%) patients could be diagnosed. In total, 52% of the patients ((227+50)/535) could be diagnosed with an accuracy of 94%, but CSF was measured only in 20% of the patients (102/535). For comparison, when CSF was measured for all patients, accuracy was 96% and a diagnosis was made in 48% (n=256) of the patients.

Conclusions: This study demonstrates that a stepwise approach enables decreasing the number of CSF measurements by >70 % without compromising accuracy.

QOP3.8. Division of household labour: Couples living with dementia


Linköping University, NORRKÖPING, Sweden

The majority of people diagnosed with dementia live in their own homes, many of them together with their spouse, for an extended period. Most couples living with dementia have a longstanding relationship that continues to evolve as the condition progresses. This implies that many couples will face many re-definitions of their relationship regarding for example performing household work such as washing, dishes, shopping, cleaning, laundry, gardening and financial management. Little consideration has been paid to if and how these tasks and social roles are negotiated when the one spouse has received a dementia diagnosis. The presentation aims to explore the social process of everyday work in couples living with dementia. This presentation is based on an interview study with nine couples. The interviews were audio recorded and thematically analysed. All the participants with dementia had mild to moderate dementia. All spouses ranged in age between 68-81 years. The analysis shows that the participating couples use different ways to collaborate in everyday life, for example handing or taking over different household tasks, or maintain the division of housework within the couple. It is a common pattern that the old division of work is re-negotiated and that the spouses are open to take on the tasks of other as the condition progress. It is obvious that the need to change and re-negotiate household chores is an important part of the new tasks the couples encounter after diagnosis.

QOP3.9. Living with dementia at home: A private or public matter?


1University of Iceland, Reykjavik, Iceland, 2professor, Reykjavik, Iceland

Caring for a person at home has become a common reality for families worldwide. Numerous studies have described burden of families of persons living with dementia. Challenges like anger towards the disease, grieving the loss of the relative’s personality and mental exhaustion related to 24-hour care burden. Despite efforts devoted to studying this situation, findings repeatedly show that families feel forgotten and alone. Although some progress has been made, there is still considerable lack of knowledge and understanding of how these families might be best assisted by formal health and social services.

Using an ethnographic method, we have followed 8 families undergoing a challenging period of the dementia trajectory, developing detailed case stories. Interpretive Description was used in analyzing data, field-notes, semi-structured interviews and written communication. The findings reflect how families find their own pathway toward what is of most support and ease in every-day living, how the formal system supports them and what is lacking in support to be able to live longer at home.

Families are heterogeneous and the illness has various pathways. But in common, participants all needed to come to terms with the impact that dementia had on their daily life and relations. They felt alone and helpless. Longing for someone to be interested in their situation, listening and willing to follow them as they tried to re-establish their life and find a new purpose. The results emphasize the importance of a personalized support from early on with flexibility and diversity in service, integrated with the care provided by family members. Such a support is lacking. It is important to increase the healthcare system´s initiatives for an ongoing and early person centred support for families in their local community.

QOP3.10. Interdisciplinary guidelines for communication, assessment and interventions to prevention and diminish caregiver burden


Radboud UMC, Nijmegen, Netherlands

Background: The Dutch Association for Nurses, Nurse-assistants and Nurse-specialists in collaboration with the Dutch Healthcare Research Fund proposed and financed the development of interdisciplinary guidelines for the prevention and decrease of caregiver burden. The guidelines should focus on three groups of caregivers: young, adult and and older caregivers. Aim of the study was to get insight in most eligble communication styles, assessments and interventions that fit to the needs of these caregivers and are eligble for use in interdisciplinary and nursing practice.

Methods: first the needs and experienced barriers of these three groups of caregivers and other relevant stakeholders were obtained, by use of discussion rounds, focus group interviews, and additional individual interviews. After this, main research questions were formulated. Accordingly, a literature review of scientific and grey literature, and additional focus groups were performed based on these main questions. Based on this, practical recommendations for communication, assessment and intervention were described.

Results: Although there were differences in needs and experienced barriers of these three groups of caregivers, there was also lots of overlap. Both general and specific communication styles, assessments and interventions on the prevention and decrease of caregiver burden for these three groups of caregivers were found.

Discussion: The most eligible communication styles, assessments and interventions, will be presented and recommendations for implementation in interdisciplinary practice will be discussed.



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