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PO13. Early onset dementia

Detailed programme, abstracts and presentations

PO13.1. A structured review of post-diagnostic support processes for people living with younger onset dementia

FOX Siobhan1, CAHILL Suzanne2, CAHILL Siobhan3, FOLEY Tony4, ROCK Bernadette5, SWEENEY Brian6, MCGOWAN Rachel1, KILTY Caroline7

1Centre for Gerontology and Rehabilitation, University College Cork, Cork, Ireland, 2Trinity College Dublin, Dublin, Ireland, 3Assessment and Treatment Centre, St Finbarr’s Hospital, Cork, Ireland, 4Department of General Practice, University College Cork, Cork, Ireland, 5Alzheimer Society of Ireland, Dublin, Ireland, 6Cork University Hospital, Cork, Ireland,7School of Nursing and Midwifery, University College Cork, Cork, Ireland

Background: The term younger onset dementia (YOD) describes any form of dementia diagnosed in people under 65 years. Recent prevalence estimates suggest that in Ireland there are 4,066 people with a diagnosis of YOD, with a projected 20% (4,887) increase expected by 2046. Once diagnosed, post-diagnostic care is problematic for this group because many of the typical dementia supports developed may either be inappropriate or not available due to age restrictions. This study, commissioned by the National Dementia Office of the Department of Health, aimed to review post-diagnostic supports for people with YOD (PwYOD) in order to support national decision-making on dementia services and pathways for Ireland.

Method: A structured literature review was conducted to identify optimum post-diagnostic care pathways for PwYOD. A systematic search strategy was devised that identified all relevant peer-reviewed research papers. Databases searched included: Pubmed/Medline, PsychInfo, Cinahl, Embase, The Cochrane library, Lenus and Google Scholar. Grey literature including conference proceedings, national dementia strategies, dissertations were also reviewed.  A narrative synthesis approach was used to assess and summarise the literature identified in the review.

Results: Compared to literature on later onset dementia, the literature on models of post-diagnostic support for PwYOD is sparse. Internationally, there is widespread variation in timely post-diagnostic support and interventions, with pathways remaining ad-hoc and unclear and PwYOD often experiencing great difficulty accessing personalized supports offered in a timely inclusive manner.

Conclusion: Timely post-diagnostic support can help PwYOD and their families adapt well to the multiple changes dementia presents yet, there is an absence of age-appropriate service models available for this vulnerable group of people. New models of service delivery need to be developed that are evidence based, age appropriate, promote quality of life and focus on personalized supports and the citizenship of a group of people hugely neglected in Ireland and internationally.

PO13.2. Giving young-onset dementia a face: Results from the PRECODE-study

VAN DE VEEN Dennis1, KOOPMANS Raymond2, BAKKER Christian1

1Radboud UMC, Department of Primary and Community Care, Nijmegen/ Radboud UMC Alzheimer Center/ Florence Caregroup, The Hague, Nijmegen, Netherlands, 2Radboud UMC, Department of Primary and Community Care, Nijmegen/ Radboud UMC Alzheimer Center/ De Waalboog Caregroup, Nijmegen, Netherlands

Background: In young-onset dementia (YOD), with a symptom onset at a relatively young age, there are specific care needs directly linked to the younger, active life phase. Healthcare services should be equipped to meet these needs. A common nosology and univocal understanding of YOD are a prerequisite to plan appropriate care and support in YOD. In this study a Delphi was performed, as a part of the Prevalence, REcognition and Care pathways in young-Onset DEmentia (PRECODE-) study. Aim was to provide a common terminology and operational definition of YOD.

Methods: First an integrative review was conducted in four databases (i.e. PubMed, Embase, PsychInfo and Cinahl) and in Google, resulting in 58 peer-reviewed publications addressing terminology and operational definitions. In a second step, based on these publications, statements were formulated to achieve consensus in a Delphi-study. Known research groups and health care professionals with an interest in YOD were contacted, as well as experts identified in the literature review. A total of 86 international experts were invited to participate to give their opinion on the statements on a 5-point Likert scale, in three rounds. When no consensus was reached on particular statements, these were included in the next round.

Results: Preliminary results of the Delphi showed a response rate, varying from 51.2% in round one to 44.2% in round three. Consensus was reached for ‘young-onset dementia’ as preferred term and the use of the age of 65 years at symptom onset as cut-off criterion. Also consensus was reached on most categories of potential causes of YOD, but not all. An overview of all the Delphi results will be presented at the conference on a poster, including recommendations and the impact for future research.

PO13.3. Experience with support in workplaces with early onset dementia employees: Advantages of being open about dementia

OMOTE Shizuko1, IKEUCHI Satomi2, OKAMOTO Rie1, MORIKAWA Yuko2, OKUNO Takami3, TAKAHASHI Yutaro4, KOYAMA Yoshiko5

1Kanazawa University, Kanazawa, Japan, 2Kanazawa Medical University, Uchinada, Japan, 3Nippon Express, Takaoka, Japan, 4Tsubata Town, Tsubata, Japan, 5Kinjo University, Hakusan, Japan

Purpose: The purpose of this study was to clarify the support experience in workplaces where employees who have early onset dementia are working.

Method: The subjects were eight workplaces in five prefectures of Japan. Recruitment for research participation was conducted using snowball sampling. Interviews were conducted with personnel or occupational health staff with the consent of the workplace. Data were collected from June 2017 to February 2019. A semi-structured interview method was used. For employees who were diagnosed with early onset dementia, we asked about support at the workplace after them noticing employees with symptoms of dementia. Qualitative descriptive analysis was used. From the verbatim transcript, we examined the similarities and differences in semantic content and extracted subcategories and categories. This study was conducted with the approval of the Kanazawa University Medical Ethics Review Board (749-1)

Results: Ten case interviews from eight workplaces were used and seven categories extracted. The types of workplace were manufacturing health and hygiene, transportation, and temporary staffing. Extracted categories were “unsure of how to relate”, “sensitivity when recommending consultation and diagnosis”, “uneasiness of co-workers in workplace not being open about the disease”, creating a system giving consideration to safety and security”, “devising a way to continue work”, “building consensus among workplace, person with dementia and family” and “supporting the person in daily life”.

Discussion: At the workplace there were adjustments in work content and systems to allow employees to work with ease. On the other hand, some co-workers felt uneasy if there was insufficient openness about the name of the disease; early onset dementia. It is necessary to support all workplace employees using both internal and external systems.

PO13.4. The experiences of people with early onset dementia at work

IKEUCHI Satomi1, OMOTE Shizuko2, TANAKA Kouji1, OKAMOTO Rie2, MORIKAWA Yuko1, IRITANI Osamu1

1Kanazawa Medical University, Ishikawa, Japan, 2Kanazawa University, Ishikawa, Japan

Objective: To reveal the experiences of working Japanese people with early onset dementia, and to explore the beginnings of support for employment and social participation from the perspective of these individuals.

Methods: This study was approved by the medical ethical review board of Kanazawa University, the researchers’ affiliated institution. Subjects were recruited using snowball sampling. Before participation, a researcher explained the research objectives, ethical considerations, and the contents of the interview questions, and obtained written consent from the participants. The interview was conducted in a private room at a facility of the participant’s choosing, and a supporter was present if requested by the participant. All interviews were performed by the principal investigator between September 2018 and February 2019. Each interview lasted between 30 and 90 minutes. Questions were asked freely and included ‘How did you feel when you found out you had dementia?’, ‘What were the circumstances?’, and ‘Tell me about any problems you’ve faced or creative solutions you’ve used to do your work.’ A voice recorder was used during all interviews with participant consent. Recordings were immediately labelled and stored for word-for-word transcription at a later time. This data was analysed using Colaizzi’s qualitative methodology.

Result: Eleven interviews were conducted. Of these, nine subjects were male, and seven worked for companies. All were within 5 years of diagnosis. Participants experienced ‘feeling distress due to cognitive symptoms’, ‘continuing to cope with dementia’, ‘announcing their illness and seeking assistance’, and ‘regain your will to live’.

Discussion: Though they felt distress due to their dementia, participants announced their illness, sought assistance, and attained understanding from their workplace and community. Due to these actions, they themselves were able to continue to search for solutions to manage their dementia and regain the will to live.

PO13.5. Brain network injury in MCI working memory dysfunction: An EEG Study

TIAN Xin, FAN Yiran, ZHENG Xuyuan, TIAN Xin

Tianjin Medical University, Tianjin, China

Objective: Mild cognitive impairment (MCI) is the critical stage of the prevention and treatment of Alzheimer's Disease (AD). Working memory dysfunction (WMD) is the major clinical symptom in MCI. Exploration of WMD mechanism has attracted increasingly widespread attentions. Brain network analysis has become a powerful tool for understanding the cognitive behavior in brain regions. In this study, multi-channel electroencephalographs (EEGs) were recorded from patients with MCI and healthy control and neural oscillation and functional connectivity among the EEGs were analyzed to investigate the potential mechanism of working memory deficits in MCI.

Methods: 34-channel EEGs were recorded from patients with MCI (n=15) and healthy control (n=15) while they performed a visual working memory task. The correct rate and reaction time were statistically compared to study the behavioral disorders of working memory in MCI. Recorded EEGs were preprocessed to remove the baseline drift, power line noise, and the artifacts caused by vertical and horizontal electrooculography from the original EEGs. Based on multi-variable Granger causal connectivity analysis, functional connectivity strengths of the causal network within brain regions were estimated. Furthermore, the topographies of brain network were analyzed.


·         Behavioral disorders of working memory in MCIs: The correct rate of the MCI group is significantly lower and the reaction time is significantly longer than that of control. 

·         Decreased theta power in MCIs: The theta power in the retention period mainly concentrates in frontal midline. The MCIs show obvious decrease in theta power. 

·         Decreased functional connectivity in gamma network in MCIs: The functional connectivity in gamma band strengthens within parietal region in the retention period in control while the MCIs shows the decreased connectivity strength. 

Conclusions: People with MCI show the obvious working memory disorders. Moreover, the behavioral dysfunction in MCI is closely related to the decreased theta oscillation and network connectivity strength.



Last Updated: Monday 07 October 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