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P19. Young onset dementia

Detailed programme, abstracts and presentations

P19.1. ‘You look well’ ………. Living life with the invisible disability of early onset dementia


1 The Alzheimer Society of Ireland, Dublin, Ireland, 2 The Irish Dementia Working Group, Sligo, Ireland, 3 The Irish Dementia Working Group, Cashel, Ireland, 4The Irish Dementia Working Group, Cork, Ireland

Background: Members of the Irish Dementia Working Group (IDWG) advocate for change, raise awareness, confront stigma and engage in research. Throughout this work, there is another challenge they face as a result of speaking publicly about living with dementia – they do not look unwell.

As a result, professionals and members of the public view these advocates as an anomaly, an exception. There is a lack of understanding about life with early onset dementia and how, despite their ability to participate in advocacy work, the members of the IDWG face daily challenges. ‘I am on the Board of Alzheimer Europe but I burn my hands making the dinner’ : Helen Rochford Brennan

Content: Three members of the IDWG (Kathy Ryan, Kevin Quaid and Helen Rochford Brennan who is also Chair of the European Working Group of People with Dementia) wish to discuss the reality of living with an invisible disability.

The issue of not looking unwell is something which many people living with younger onset dementia face. The discussion will be facilitated by Clodagh Whelan, The Alzheimer Society of Ireland. Through their advocacy work, members of the IDWG face criticism that they are not ‘typical’ people living with dementia. Their lived experience can be devalued because statistically the numbers of people living with early on set dementia is lower than those over 65.

The IDWG wish to discuss the impact of that devaluation and examine both the similarities and differences in their dementia journey.

P19.2. Living with frontotemporal dementia: “You can’t stop the waves, but you can learn to surf”

BRUINSMA Jeroen1, PEETOOM Kirsten2, BAKKER Christian3, DE VUGT Marjolein3

1Maastricht University, Maastricht, Netherlands, 2Maastricht, Netherlands, 3Den Haag, Netherlands

Together with a family member of a person with frontotemporal dementia (FTD), we present the results of our focus group interviews at the Alzheimer Europe conference. By inviting a family member of a person with FTD to the stage, we would like to exemplify our findings. 

Introduction: Family members of people with FTD experience high levels of burden and distress due to the young age at onset, a prolonged time to diagnosis and the high prevalence of neuropsychiatric symptoms. Despite the need for a more family-oriented support approach, most interventions in the area of FTD focus on spousal caregiving. 

Aim: This study aims to explore caregiver experiences and tailor an online support program (Partner in Balance) to the needs of spouses and other family members of people with FTD.

Methods: In this qualitative study, three focus group interviews were organized across The Netherlands. A heterogeneous sample of 24 spouses, children, siblings and other family members of people with FTD were included using maximum variation sampling. Prior to the interview participants completed a booklet containing questions about everyday life. To develop practical advice, participants were also asked to write a letter with tips to a family member of someone who recently received a FTD diagnosis. During the focus group, participants selected topics for the online support programme. Inductive content analysis was used to analyse the focus group data.

Results/Discussion: Preliminary results show that family members experience specific problems and needs in the pre- and post-diagnostic period. They also report a lack of appropriate support. However, by trial and error most of them developed a strategy to cope with the situation. 

Taking good care of yourself, gaining access to professional care and support and keeping in touch with family and friends were some of the most important topics for online support. 

P19.3. The ANGELA Project: Evidence-based guidelines for diagnosis & post-diagnostic support in young onset dementia

STAMOU Vasileios1, O'MALLEY Mary2, OYEBODE Jan1, LA FONTAINE Jenny1, PARKES Jackie2, GAGE Heather3, JONES Bridget3, CARTER Janet4

1University of Bradford, Bradford, United Kingdom, 2University of Northampton, Northampton, United Kingdom, 3University of Surrey, Surrey, United Kingdom, 4University College London, London, United Kingdom

Background: There are approximately 42,500 younger people with dementia (YPD) in the UK today. Research evidence indicates significant delays in diagnosis and a lack of appropriate post-diagnostic support.

Objectives: The aim of the Angela Project is to improve services offered to YPD and their families, by developing guidelines on best practice in diagnosis and post-diagnostic support.

Improving diagnosis

Methods: Weconducted two Delphi studies to (i) establish gold standards for clinically accurate diagnosis, and (ii) identify the optimum diagnostic experience. A national case note audit has compared current UK practice to the gold standards.

Results: Consensus was reached on 45 statements by clinical experts -formulated as a Minimum Standard - the top 15 statements voted by ALL experts as being absolutely essential or very important and a Gold Standard - all 45 statements, voted as being absolutely essential or very important. A digital research platform was used to assess compliance with the standards in UK services.

Improving post-diagnostic support

Methods: We conducted a national survey, focus groups and follow up interviews with 255 younger people with dementia (YPD) and supporters across the UK. 856 positive experiences with services were described.  Inductive thematic analysis informed by social constructionism explored service objectives and delivery, and the needs met.

Results:Analysis resulted in seven themes: Three related to how positive services were delivered: ‘Sensitive Engagement’, ‘Continuity and Consistency’, and ‘Accessible and Responsive’, and four related to major needs met by positively experienced services: ‘being held and supported’, ‘empowerment’, ‘togetherness’, and ‘living well’.

Conclusions: We have developed evidence-based guidelines on best practice in diagnosis and post-diagnostic support. Our guidelines highlight fundamental needs of YPD and standards of best practice in diagnosis and post-diagnostic support. They provide a basis from which efficient and effective needs-led person-centred practice can be provided.   

P19.4. Differences in advance care planning in young-onset dementia: A qualitative study with Belgian and American family caregivers


End-of-Life Care Research Group, Brussels, Belgium

Background:Advance care planning (ACP) is a process of communication between patients, family and professionals for exploring preferences for future care, including end-of-life care. ACP in young-onset dementia (YOD) largely remains a blind spot within literature, despite the hypothesis that younger persons with dementia and their caregivers have distinct needs in terms of ACP. Additionally, it has been suggested that the content and process of ACP might be influenced by the legal context in which persons live. Therefore, our study inquires, from the perspective of family carers of people with YOD: “What are differences between American and Belgian persons with YOD and their family caregivers regarding their engagement in and ideal conceptualisation of ACP?”.

Methods:We conducted semi-structured interviews with 15 Belgian and 13 American family caregivers of persons with YOD. Verbatim transcripts were analysed through the method of constant comparative analysis. 

Results:Three themes emerged in terms of differences between Belgian and American caregivers. First, respondents spontaneously paid attention to those end-of-life decisions that are found in the law of their respective countries. Second, Belgian caregivers emphasized financial planning less than American respondents. Third, if professionals were consulted for advance directives, Belgian respondents relied on physicians, while American caregivers relied on lawyers.

Discussion:We found that a country’s legal framework for end-of-life decisions is reflected in people’s framework for thinking about these decisions. Caregivers’ concerns for costs of care appear lower in Belgium than in the USA. In the USA, continuity of care between legal and medical professionals in terms of ACP is lacking. Conclusively, some challenges faced by family carers of persons with YOD in terms of (planning for) care can be linked to sensitivities within their respective societal and legal climate. Professionals should be aware of nuances and specific challenges within a certain country in terms of ACP.

P19.5. Focussing in people with behavioural variant of frontotemporal dementia: An innovative approach

KOOPMANS Raymond1, PRINS Elly2, BAKKER Christian1, GERRITSEN Debby1, HENDRIKS Alwies2

1Radboudumc Alzheimer Center, Nijmegen, Netherlands, 2Joachim en Anna, Nijmegen, Netherlands

Frontotemporal dementia (FTD) is a neurodegenerative brain disease with the behavioural variant FTD (bvFTD) as the most common variant. Besides apathy, disinhibition is one of the main neuropsychiatric symptoms in bvFTD with a prevalence of 76%. Disinhibition is linked to the degeneration of the orbitofrontal and dorsolateral prefrontal lobe. In patients with bvFTD, the ability to inhibit is impaired. Therefore, the process of suppressing internal stimuli like activated information, selecting external stimuli, focusing on the relevant information and inhibiting irrelevant information is reduced. Consequently, patients with the bvFTD cannot decide which incentives are important and which incentives are not. This can result in for instance socially inappropriate behaviour, repetitive or stereotypic behaviour and loss of basic emotions.

To date there is hardly any psychosocial intervention available that is effective in caring for people with bvFTD with disinhibited behaviour. However, a psychologist and psychomotor therapist of ‘Joachim en Anna’, centre for specialized geriatric care, developed a psychosocial intervention named “Focussing”. This approach consists of 5 distinct ways to guide the disinhibited behaviour: (1) structuring the day and create a safe environment; (2) focussing on a single activity; (3) focussing on a single sensory organ; (4) supress external stimuli; and (5) focussing on team agreements.

In this oral presentation, the principles of Focussingwill be presented using video of a resident with bvFTD with extreme disinhibited and repetitive behaviours. Also, the 5 ways of this intervention and the effect of the resident will be shown.

P19.6. Differences of palliative care in patients with advanced young and late onset dementia - A focus on psychotropic drug therapy


1Technical University of Munich, School of Medicine, Department of Psychiatry, Munich, Germany, 2Technical University of Munich, Medical School, Institut für Medizinische Informatik, Statistik und Epidemiologie and Münchner Studienzentrum, Munich, Germany, 3Technical University of Munich, Medical School, Münchner Studienzentrum, Munich, Germany, 4German Alzheimer Association, Berlin, Germany, 5Technical University of Munich, Medical School, Department of Psychosomatic Medicine, Munich, Germany, 6Geriatric Palliative Care, Department of Medicine, Lausanne University Hospital, Lausanne, Switzerland, Lausanne, Switzerland

Background: The study EPYLOGE (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) is one of the first studies worldwide that investigates patients with advanced neurodegenerative young onset dementia (YOD) and how they are cared for. At the end of the study, 100 patients with YOD will be compared with 100 late onset dementia (LOD) patients.

Methods: As of Dec 31st 2018, 122 of the 200 patients were included: 62 with YOD and 60 with LOD in advanced stages. 43% were cared for in long term care, 47% at home.

Results: Comparison between advanced LOD and YOD revealed only minor differences regarding cognition, psychological symptoms of dementia (BPSD), activities of daily living, quality of life, pain, suffering, and care. Point-prevalence of psychotropic drug therapy did not differ. 42% of the patients were treated with antipsychotics (AP). Not in the LOD group but in the YOD group and particularly in the young onset AD patients (as compared to FTD) there were statistically highly significant differences between patients with and without AP treatment: YOD patients with AP showed much more BPSD and had less quality of life than YOD patients without AP. A closer look into the medication revealed that many patients with high NPI scores seemed to be undertreated with surprisingly low AP dosages. Conversely, 30% of all patients with AP had almost no behavioral disturbances (defined as NPI sum score < 15) during the 4 weeks before the study visit - which might indicate overtreatment.

Conclusion: Psychiatric expertise is necessary to treat BPSD, particularly in YOD, with appropriate drugs and dosages. AP-deprescribing should be initiated, whenever possible.



Last Updated: Tuesday 10 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