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QOP2. Societal perspectives I

Detailed programme, abstracts and presentations

QOP2.1. The development of a dementia education workshop specifically for the prison setting


Birmingham City University, Birmingham, United Kingdom

Background: The world’s prison population is aging, and their needs are complex as they develop long-term conditions, such as dementia, at an earlier age than expected (Sharupski et al. 2018). Prisoners with dementia present unique challenges and prison staff and healthcare professionals report a lack of education and training to identify and support these prisoners (Dillon et al. 2018).

The aim of this paper is to describe the development of a dementia education workshop specifically for the prison setting.

Methods: A three phase prospective development of a dementia education workshop in a category C male prison in England. Phase 1 and 2 involved understanding staff and prisoners’ knowledge of dementia, barriers and current initiatives. Phase 3 involved the development and implementation of a dementia education workshop.

Results: Phase 1: The Dementia Knowledge Assessment Scale was completed by: healthcare professionals (n=13), counsellors (n=5), offenders’ management officers (n=7) and senior managers (n=8).

Phase 2: Open-ended questions regarding dementia, including barriers and initiatives were completed by: healthcare professionals (n=20), prisoners (n=76), and prison officers (n=15).

Phase 3: A two-hour dementia education workshop was developed. Barriers and initiatives were included and comprehensively addressed. The workshop is interactive with the inclusion of videos, handouts and group activities, and has been delivered to groups of healthcare professions (n=3), prisoners (n=5), senior managers (n=1), and offenders management officers (n=1).

Conclusion: The dementia education workshop was well received by all staff and prisoners who fully engaged in the process and discussions. The workshop has been adapted from the feedback from attendees. A limitation of the workshop is the development and implementation in only one prison in the UK, this is to be addressed and the workshop to be implemented and evaluated in a further two prisons.

QOP2.2. A realistic evaluation of Irish National Dementia Strategy Implementation Programme

HARTIGAN Irene1, CORNALLY Nicola1, DRENNAN Jonathan1, O'PHILBIN Laura1, O'CONNOR Kieran2, O’CAOIMH Rónán2, VAN DER STEEN Jenny3, BRAZIL Kevin4, BUCKLEY Catherine5, NAUGHTON Corina1, O'REGAN Niamh6, COFFEY Alice7

1University College Cork, Cork, Ireland, 2Mercy University Hospital, Cork, Ireland, 3Leiden University, Leiden, Netherlands, 4Queens University Belfast, Belfast, United Kingdom, 5Education and Research Centre, St. Lukes Home, Cork, Ireland, 6Western University, Ontario, Canada, 7University of Limerick, Limerick, Ireland

Background:Ireland’s first National Dementia Strategy (NDS) was launched in 2014, aiming to meet the needs of people living with dementia in Ireland, now and in the future. This was followed by the €27.5m National Dementia Strategy Implementation Programme (NDSIP), a joint initiative between the Irish Department of Health, Health Service Executive, and Atlantic Philanthropies to implement significant elements of the Irish NDS between 2014 and 2017.

Aim:To evaluate the multi-level impact and progress-to-date of Ireland’s first NDS.

Methods:A realist evaluation framework was used to examine broadly what works, for whom, under what circumstances and why for each of the NDS priority action areas.3 cycles of data collection were conducted which involved a qualitative cycle of stakeholder engagement, a quantitative cycle of surveys and a spotlight case study cycle.

Results/conclusions:The significant investment in the NDSIPgave the development of dementia care increased priority and impetus. There has been momentous progress since the launch of the NDS. The awareness raising campaign UnderstandTogether has been successfully implemented. Timely diagnosis and early management of dementia was regarded as crucial, by all participants across the 3 cycles, to support people living with dementia (PLwD) and their families. However, evidence suggests that early diagnosis and onward referral to supports and services is inconsistent across Ireland. The lack of a national dementia specific pathway for the diagnosis and early management of dementia to support PLwD and their families was evident. Plus, the lack of purposively designed or adapted dementia friendly healthcare environments caused difficulties for PLwD and their carers. The full impact of the NDS will not be known for some time however, this evaluation provides key recommendations which will enable future dementia care in Ireland.

QOP2.3. Citizen Science - The Irish Dementia Working Group investigate travel

WHELAN Clodagh1, RYAN Kathy2

1The Alzheimer Society of Ireland, Dublin, Ireland, 2The Irish Dementia Working Group, Cashel, Ireland

Background: At the Irish Dementia Working Group in February members raised the issue of public transport for people living with dementia. The group expressed their concerns regarding lack of public transport, fear around independence and in particular their worry about what happens when a person can no longer drive.

Following a discussion with the IDWG Steering Group it was decided to research this topic. The Working Group want to answer the following question:

  • Can people with dementia go about their daily lives using public transport?
  • What are the experiences of people with dementia on public transport?
  • What difference, if any is their between rural and urban access to public transport for people living with dementia?

The study aims to capture member experience regarding accessing public transport and also inform the campaign strategy for the IDWG

Content: This oral presentation will outline the process involved to support members of the Irish Dementia Working Group to commission their first piece of research and become Citizen Scientists;

  • How were members consulted
  • Who had oversight
  • What did we learn on the journey?

QOP2.4. Terminology and prevalence of young people with dementia: Results from the PRECODE-study

VAN DE VEEN Dennis1, HENDRIKS Stevie2, PEETOOM Kirsten2, DE VUGT Marjolein2, VERHEY Frans2, KOOPMANS Raymond3, BAKKER Christian1

1Radboudumc, Department of Primary and Community Care, Nijmegen/ Radboudumc Alzheimer Center/ Florence Caregroup, The Hague, Nijmegen, Netherlands, 2Alzheimer Centrum Limburg/ Maastricht University, Maastricht, Netherlands, 3Radboudumc, Department of Primary and Community Care, Nijmegen/ Radboudumc Alzheimer Center/ De Waalboog Caregroup, Nijmegen, Netherlands

Background: People with young-onset dementia (YOD), with a symptom onset at a relatively young age, have specific care needs directly linked to the younger active life phase. Healthcare services should be equipped to meet these needs. However, there is no consensus regarding the terminology and operational definition of YOD, and data on the prevalence and incidence of YOD is scarce. The Prevalence, REcognition and Care pathways in young-Onset DEmentia (PRECODE)-study aims to provide a univocal understanding of YOD. A common terminology and adequate estimate of the prevalence are prerequisite to plan appropriate care and support in YOD.

Methods: An integrative review was conducted in four databases (PubMed, Embase, PsychInfo, Cinahl) and in Google, resulting in 58 peer-reviewed publications addressing terminology and operational definitions. Based on these publications, statements were formulated to achieve consensus in a Delphi-study. Eighty-six international experts gave their opinion on these statements in three rounds. Statements without consensus were included in the next round. Further, a systematic literature search was conducted (same databases) on the prevalence and incidence of YOD. Two researchers screened the literature in two phases, first screening titles and abstracts, next screening the full-texts and extracting data. Authors were contacted in case of missing data. Meta-analyses were used to pool estimates and assess sources of between-study differences.

Results: Preliminary results of the Delphi-study show that consensus was reached for ‘young-onset dementia’ as preferred term and the use of 65 years at symptom onset as cut-off criterion. There is consensus on most categories of potential causes of YOD. For prevalence and incidence estimates, the literature search yielded 10,370 articles. Of the first 5000 articles screened, over 50 full-texts were directly suitable. Additional data from other articles was requested. Analyses are currently ongoing, and results will be presented.

QOP2.5. A qualitative investigation into family care givers experiences of living with/caring for a person with young onset dementia

BLAKE Cathal, HOPPER Dr. Louise

School of Psychology, Dublin City University, Dublin, Ireland

The neurodegenerative condition known as dementia appears to be most prevalent in older adults, but some people develop symptoms before the age 65. Although less common, it is typically referred to as Young Onset Dementia (YOD). Estimating the number of people with YOD in Ireland is difficult, as there are few studies of this population. Trying to determine what it is like to live with and care for people with YOD and to understand their specific care needs is also poorly understood. This study examined the experiences of primary caregivers of people diagnosed with YOD in order to understand the lived experience of caring. Primary caregivers (n= 9) were recruited through the Alzheimer’s Society of Ireland and the Dementia Carers Campaign Network. Participation involved audio-recorded semi-structured one-to-one interviews. Interview data were analysed using inductive thematic analysis. Five themes emerged from the data including (i) sense of loss; (ii) diagnostic issues; (iii) lack of services for younger adults; (iv) stigma; and (v) caregiver burden. Findings demonstrate the challenges faced by primary caregivers and health and social care providers in Ireland. People with YOD and their families need specific health and social care supports (particularly community based supports), care pathways, and interventions in order to live well with the condition. The needs of caregivers of people with YOD should not be considered the same as those who care for people with late onset dementia (LOD), given the difference in life stage at onset. Difficulties with the diagnostic process suggests a need for education and awareness regarding YOD and specialised multidisciplinary assessment separate from those available for people with LOD. It is hoped that the findings from this research will expand our current understanding of living with YOD, inform policy and service provision, and underpin further research in the area.

QOP2.6. MCI@work: Is there a role for technology in MCI or dementia in the workplace?

SWAMINATHAN Swathi1, ASTELL Arlene1, PERSAUD Deanna2, MARTINS Felicia3, FLORA Parminder2, NYGÅRD Louise4, BOGER Jennifer5, SHASHTRI Karan5, MÄKI PETÄJÄ Anna6, NEDLUND Anne-Charlotte7

1University of Toronto, Toronto, Canada, 2Ontario Shores Centre for Mental Health Sciences, Whitby, Canada, 3University Health Network, Toronto, Canada, 4Karolinska Institutet, Stockholm, Sweden, 5University of Waterloo, Waterloo, Canada, 6University of Eastern Finland, Jeonsuu, Finland, 7Linköping University, Linköping, Sweden

Mild Cognitive Impairment (MCI) and dementia are increasingly being diagnosed among people in the workforce. MCI@work is an international project examining the situation of people in Sweden, Finland and Canada, looking in part at their use of technology. In Canada seven individuals aged between 46-65 years (mean age 55) participated in interviews regarding their experiences in relation to technology use. The interviews were video-recorded, transcribed and analysed through inductive thematic analysis. Four themes emerged relating to use of technology in the workplace: (1) Technology/tools used; (2) Function of tools; (3) Challenges of technology use; and (4) Suggestions for future technology development.

Whilst it was a small sample, the participants had different educational backgrounds, came from different employment types and had different post-diagnostic experiences in the workplace. The results provide important insights into current use of technology by people with MCI and dementia in the workplace, plus future directions for innovation to provide greater support to maintain paid employment or transition to other meaningful occupation.

QOP2.7. An empowerment intervention for people with young-onset dementia: The SPANkracht study

BIELDERMAN Annemiek1, BAKKER Christian1, KOOPMANS Raymond1, DE VUGT Marjolein2, GERRITSEN Debby1

1Radboud University Medical Center Nijmegen, Radboud Alzheimer Centre Nijmegen, Nijmegen, Netherlands, 2Maastricht University, Alzheimer Center Limburg, Maastricht, Netherlands

Background: The SPANkracht empowerment intervention for people with young-onset dementia (YOD) aims to focus on current capacities, to increase opportunities to engage in meaningful activities, and to feel useful. It contains methods for structured conversation about current and desired activities, particularizing activities, and making and executing weekschedules. The process evaluation indicated that both people with YOD and their carers appreciated the SPANkracht intervention. 

Methods: This pragmatic cluster randomized controlled trial aimed to examine the 5-months effects of the SPANkracht intervention in community-dwelling people with YOD and their family carers. Questionnaires were used to evaluate the effects of the intervention. Primary outcome was self-management abilities of the person with dementia (SMAS-30). Secondary outcomes were quality of life, daily functioning, apathy, and neuropsychiatric symptoms of the person with dementia (resp. QOL-AD, IDDD, AES-10, NPI-Q), and perceived sense of competence and distress of the family carer (resp. SSCQ and NPI-Q emotional stress scale). The control group received care as usual. Linear mixed model analysis, taking into account clustering of data, was used to analyze the data.

Results: In total, 61 people with YOD and their family carers participated (n=35 intervention; n=27 control; mean age 64±6 years; 71% male) with support from a familiar professional carer (n=28). The analyses showed no significant effect of the intervention on the main outcome self-management abilities (estimate=-1.1; p=0.485). Furthermore, no significant effects on the secondary outcomes for people with YOD and their family carers were found. In both the intervention and control group, the daily functioning of people with YOD declined during the 5-month intervention period.

Conclusion: Although participants appreciated the SPANkracht intervention, the analyses showed no effects of the intervention on self-management abilities, quality of life or behavioral outcomes of the person with dementia, or on the perceived sense of competence and distress of the family carer.

QOP2.8. The prevalence and incidence of young onset dementia: A systematic review and meta-analysis


Alzheimer Centrum Limburg, Maastricht, Netherlands

Background: When the onset of dementia occurs before the age of 65, it is usually referred to as young onset dementia (YOD). Differences between YOD and late onset dementia (LOD) include more heterogeneity in the etiology and differences in initial symptoms. This frequently leads to a misdiagnosis, and therefore a prolonged time to diagnosis. Since people with YOD are usually still in an active life phase, their healthcare needs differ from people with LOD.

Of the total prevalence of dementia, it is estimated that 6-9% are accounted for by people under the age of 65, but data to build robust estimates on is very limited in this specific dementia subgroup. However, valid epidemiological data on the prevalence of people with YOD is needed to adequately provide specific services and care. Therefore, with this systematic review we aim to collate data from published literature and estimate the prevalence and incidence rates of YOD.

Methods: A comprehensive literature search in PubMed, Embase, CINAHL and PsychINFO was conducted to identify population-based studies on the prevalence and/or incidence of dementia in a population aged under 65. Articles published between 1990 and 30 November 2018 were screened in two phases, first screening titles and abstracts, next screening full texts and extracting data, according to the PRISMA-guidelines. Authors were contacted in case of missing data. Meta-analyses were performed to pool estimates and assess sources of between-study differences. The study is registered with PROSPERO, number CRD42019119288.

Results: The systematic search yielded a total of 10,370 articles. Of the first 5000 articles screened, over 50 full-texts were directly suitable. Additional data from other articles was requested. Analyses are currently ongoing, and results on the prevalence and incidence of YOD will be presented.

QOP2.9. Care Circles surrounding the patient with Young-Onset Dementia: A multisectoral, holistic approach in order to improve the patient’s quality of life


1Student University of Leuven, Leuven, Belgium, 2Harvard Kennedy School, Boston, United States, 3Zorgcirkels Jongdementie & WZC De Wingerd, Leuven, Belgium

Efficient and cooperative dementia care is needed to further improve the patient’s quality of life meanwhile keeping our health-care system affordable. This abstract describes the concept of eight care circles as part of the local young-onset dementia (YOD) policy implemented by the cooperation “Zorgcirkels Jongdementie” in the province of Flemish Brabant, Belgium (Zorgcirkels Jongdementie, 2019). Unique about this cooperation is the fact that patients together with professionals are part of the executive committee and both work out the local policy. The implementation of care circles, based on the patients input, aims for a more person centred approach, guiding from diagnosis until end-of-life.

The development of a “strong-first line care” and appointment of a mentor, supporting the patient throughout the care process are part of the first two circles.  The third and fourth circles exist out of activities in local “meeting houses” and day-care centres promoting social interaction, cognitive and physical functioning. Through the fifth circle named “cohousing”, people in a homogenous phase of disease live together in adapted accommodations and act as each other’s informal carers, reducing social isolation. The sixth circle consists out of the appointment of a volunteering ‘buddy” who engages to perform activities based on the patient’s specific interests. Part of the remaining two circles are educational programmes informing family, patients and the broad public about dementia or meetings where patients in the same stage of YOD can meet and share experiences with each other. In conclusion, this concept existing out of several multisectoral initiatives between professional and volunteering co-operators tries to optimise dementia care meanwhile further improving quality of life after being diagnosed with YOD.

QOP2.10. Specificities of early onset Alzheimer’s disease

ROLLIN Adeline1, PASQUIER Florence1, BOMBOIS Stéphanie2, CHEN Yaohua3, DERAMECOURT Vincent3, LEBOUVIER Thibaud3, MACKOWIAK Marie-Anne3, MAUREILLE Aurélien3, DELBEUCK Xavier3, POLLET Marianne3

1CHU Lille, Lille, France, 2Institute of Memory and Alzheimer's disease, Paris, France, 3Memory clinic, CHU Lille, Lille, France

Background: Early onset Alzheimer’s disease (EOAD), with onset before 65 years, is the most frequent dementia in young people. The objective of this study was to describe clinical presentation of patients with EOAD at inclusion in the COMAJ cohort (COhorte de Malades Alzheimer Jeunes).

Methods: All patients included in the COMAJ cohort (EOAD cohort with disease onset before 60) at Lille memory clinic (North of France) between June 2009 and December 2017 with possible to certain AD criteria based on the NIA and the IWG were selected.  Clinical, neuropsychological, social, biological (CSF biomarkers of AD), genetics, imaging (MRI and FDG-PET scan) and neuropathological data were collected using a standardized medical work-up until death or withdrawal.

Results: We included 205 patients (women: 61.5%) with a mean age of 59.3 years at inclusion; 167 had a probable AD, 20 a possible AD and 18 a certain AD. Time interval between first symptoms and inclusion in the cohort was 5.4 ±2.9 years (mean MMSE score: 14.4±7.2); 61% of patients had a typical clinical amnestic presentation; 7.8% had a pathogenic genetic mutation (PS1, APP mutations and APP duplications); so far 58 patients are deceased (post mortem brain donation was obtained in 31% of them). Time between first symptoms and death was 10.7 years ± 3.7 (range 2-19.1).

Discussion: EOAD with onset before 60 years represents 6.3% of all AD followed in the memory clinics of the North of France (Nord-Pas-de-Calais area) including 20% at Lille memory center. EOAD differs from late onset AD (LOAD) by longer diagnostic delay, more frequent atypical clinical presentation, and higher risk of family autosomal dominant disease. Survival is longer in EOAD than in LOAD.    

Conclusion: This cohort will permit to better characterize the natural course of AD in young patients and to explore prognostic factors of progression.  



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