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P18. Younger people with dementia

Detailed programme and abstracts

P18. Younger people with dementia (Wednesday 2 Nov., 8.30 - 10.00)

P18.1. Developing an empowerment intervention for people with young onset dementia


Background: This study intended to develop an empowerment intervention for people with young onset dementia (YOD) through improving activities of daily life.

Methods: Eight focus groups were conducted for identifying empowering activities of daily life, four with people with YOD and four with informal carers. Using inductive qualitative content analysis important themes/goals of activities were derived from the transcripts. Subsequently, a first version of the ‘empowerment-plan’ was developed and tested by people with YOD and their carers.

Results: The focus groups for people with YOD consisted of 12 males and 8 females in total, those of caregivers of 12 males and 20 females. The general theme found was ‘keeping engaged’. Four aims of activities were identified: to be physically active, useful, socially engaged, and to experience pleasure.

Based on this, an empowerment-plan was developed consisting of a workbook and a booklet with background information. The workbook started with asking the person to fill in the current weekly schedule. Subsequently, he/she was asked to fill in several exercises aimed at investigating what is important to him/her in daily life. Then, the person was to compare his/her current weekly schedule with his/her answers to the questions, to choose new activities and fill in an updated schedule, which was to be evaluated and possibly adapted after 4 weeks.

Nine men and two women with dementia tested the empowerment-plan together with an (in)formal carer. They were very enthusiastic. Recommendations were to simplify language and some exercises, use more examples, and add information about the carer’s role and about relevant services.

Revisions led to a definitive empowerment package including a workbook, a guide containing background information on keeping engaged in YOD and a guide displaying information on services.

Conclusion: We developed a promising empowerment intervention for people with YOD. Its effects are currently being tested.

P18.2. Producing an accessible version of clinical psychology in the early stage dementia care pathway

GUSS Reinhard, SLADE Lewis, NORRIS Chris

The Faculty for the Psychology of Older People produced a suite of papers on the role of clinical psychologists in the early stage dementia care pathway, summarizing the roles of psychologists, and the positions of the Faculty, before, during and immediately following diagnosis. Although this guidance was written with input and advice from people with dementia, feedback suggested that it is overly complex and technical, and therefore not suitable for non-psychologists or people living with cognitive impairment. It was therefore decided that an accessible version of the suite be produced.

The accessible version removed technical jargon and simplified the language in order to make it more widely accessible. It summarised evidence, rather than detailing individual studies or meta-analyses. Furthermore, it included definitions of different types of psychologist and their roles when working with people with dementia. It was made briefer while still retaining key messages.

The accessible version was submitted for consultation with people living with a diagnosis of dementia. Multiple revisions were made based on their feedback and support throughout the writing process.

It is hoped that the accessible version will help to empower people with suspected or confirmed dementia, as well as their family members, by providing information on what one might expect during assessment and diagnosis, the post-diagnostic support that is available, and what to ask for in terms of care and service provision. Feedback from people with dementia suggests that it is easier to digest than the original, and that it helps to explain some of the complex roles clinicians undertake in the early stage dementia care pathway.

This presentation will be given jointly with a person living with dementia who was involved in the original consultation and the review process and who will give their perspective on the work and its outcomes.

P18.3. Participatory research with people with early-stage dementia

THOFT Diana Schack

The aim of the Ph.D. study was to develop a participatory research model drawing from qualitative participatory research about how people with early-stage dementia experience their lifeworld. It is important to develop research models that allow people with early-stage dementia to be involved because they often are excluded from research activities. Thus dementia has mostly been described from a medical perspective and persons with dementia have been viewed as unable to contribute to an understanding of the condition and to benefit from training related to being involved in research.

Twelve people with early-stage dementia were recruited from a compensatory adult school in Denmark. They were trained in research skills to qualify them to conduct a participatory research project. In the study the participants informed both the research project and the development of the participatory research model.

A combination of participant observations, qualitative interviews and focus groups were used within the study. The participant observations and interviews were conducted before the training in research skills and data were analysed from an interpretive phenomenological perspective inspired from Max Van Manen.The focus groups were used during the training and the participatory research project. Video data from the focus groups were analyzed by a thematic analysis inspired by Braun and Clarke.

The developed participatory research model illustrates how people with early-stage dementia can be trained and involved as active research participants. To allow them to be involved in research it is important to plan and establish a research project which takes into consideration their challenges. Furthermore, it is essential to train and support them the whole way through the research project. Finally, it is important to invest in the interaction with the participants to establish constructive research collaborations.

This study links with presentations from Kim Sørensen (VUK) and Alison Ward (University of Northampton).

P18.4. The course of cognitive functioning and dementia severity in persons with Young-Onset Alzheimer’s disease (YO-AD).

GERRITSEN Adrie, BAKKER Christian, VERHEY Frans, DE VUGT Marjolein, KOOPMANS Raymond

Objectives: The progression of dementia in people with young-onset dementia (YOD) is relatively unkown. Furthermore, it is uncertain which factors contribute to this decline. Aim of this study was to investigate the course of cognitive functioning and dementia severity in the three largest diagnostic groups in YOD and to investigate which factors are associated with this course. 

Methods: The course of dementia in 198 YOD participants from the Needs in Young-onset Dementia study (van Vliet et al, 2010) with Alzheimer’s dementia (AD), frontotemporal dementia (FTD) and vascular dementia (VaD) was studied. In a mixed models analysis, the relationship between the course of cognitive functioning, assessed with the Mini Mental State Examination (MMSE), as well as dementia severity, assessed with the Global Deterioration rating Scale (GDS), and diagnosis, antipsychotic use, disease duration, education and neuropsychiatric symptoms, was explored.

Results: Preliminary results show that cognitive decline in people with YOD is more progressive in AD compared to VaD or FTD.  Next to lower education also higher scores on the subsyndromes psychosis and hyperactivity of the Neuropsychiatric Inventory (NPI) were associated with higher rates of cognitive decline. In contrast, higher scores on the NPI affect sub-syndrome were associated with lower levels of cognitive decline.  A more advanced age at time of inclusion was associated with a less progressive course of the dementia. Furthermore, antipsychotic use in this study was not associated with higher decline rates.

Conclusion: In YOD, different diagnosis groups show different rates of decline in cognition, and this decline seems less progressive than was found in studies (Han et al., 2000; Schmidt et al., 2011) about decline in late onset AD. Further research is needed to evaluate whether managing neuropsychiatric behaviour can positively influence cognitive decline.

P18.5. The determinants of quality of life in nursing home residents with young-onset dementia

APPELHOF Britt, BAKKER Christian, VERHEY Frans, de VUGT Marjolein, ZWIJSEN Sandra, SMALBRUGGE Martin, ZUIDEMA Sytse, KOOPMANS Raymond

Background: Young-onset dementia (YOD), defined as dementia with symptom onset before the age of 65, causes specific challenges and issues that are likely to adversely affect Quality of Life (QoL). However, little is known about determinants of QoL in nursing home residents with YOD and possible differences in QoL between dementia subtypes. This information is an important prerequisite for developing appropriate services aimed at improving QoL in nursing home residents with YOD.

Objective: This study is part of the Behavior and Evolution of Young-ONset Dementia part 2 (BEYOND-II) study. Aim of this part of the study is (1) to explore the determinants of QoL in nursing home residents with YOD, (2) to investigate whether there are differences between dementia subtypes regarding determinants of QoL in YOD, and (3) to compare QoL profiles of YOD residents with Alzheimer’s disease (AD), Vascular/mixed dementia (Vasc./mixed dementia) and Frontotemporal dementia (FTD).

Methods: In this study 207 nursing home residents with YOD were included. Random intercept linear mixed models were used to determine the relationship between QoL (Qualidem total score) as dependent variable and the following independent variables: neuropsychiatric symptoms (NPS), dementia severity, Psychotropic Drug Use (PDU), dementia subtype, age, and gender. Interaction effects between dementia subtypes and the independent variables mentioned above were calculated. Furthermore, additional random intercept linear mixed models were used to compare the Qualidem mean subscale scores for the dementia subtypes, with the same independent variables as mentioned above included as covariates.

Results: We found that resident’s QoL was negatively associated with more advanced dementia, PDU, agitation, depression and apathy. The relationship between the studied determinants and QoL did not differ for the dementia subtypes, except for psychomotor agitation. Residents with AD showing high levels of psychomotor agitation experienced a higher QoL, while residents with FTD showing high levels of psychomotor agitation experienced a lower QoL. Although dementia subtype was not associated with overall QoL, aspects of QoL differed between the diagnostic groups. Residents with FTD showed less negative emotions, were better in developing an adequate relationship with caregivers, had a more positive self image, felt more comfortable in the nursing home environment, and experience a lesser quality of social relationships.

Conclusion: This study provides important insight into QoL in nursing home residents with YOD. These results highlight the need for specialized services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, the differences in aspects of QoL between dementia subtypes should be taken into account to accomplish the specific needs and therewith improve QoL. P18.6. Impact of a wellness program for people with young onset dementias and their care partners.

P18.6. Impact of a wellness program for people with young onset dementias and their care partners


Background: People with Young Onset Dementia (YOD) and their care partners are in their 40s, 50s and 60s. They may be still in the work force, have young children, and have limited financial means. Changing roles impact relationships within a family and with the larger community. They may experience stigma, in part because of the myth that dementia impacts only the elderly. Existing services are mostly geared towards the elderly. Together, these factors can lead to social isolation.

Methods: The Boomers Club is a weekly, 8­session wellness program blending physical exercise, music, and brain stimulation activities, offered free of charge to people with YOD and their care partners. The program uses a relationship­ centered approach combining structured and flexible programming. The program pilot was open to people with YOD in the early to middle stages. Everyone who expressed interest was accepted into the program and modifications were made to make it inclusive. People with YOD who did not have a care partner were paired with a trained volunteer. The program was facilitated by an Alzheimer Society of Toronto Social Worker and a Program Coordinator, supported by two trained volunteers.

Results: 6 people with YOD and 7 care partners from diverse ethno-­cultural backgrounds attended the pilot. The participants with YOD ranged in age from 41 ­ 66 years. Their care partners were either spouses or adult children. During individual interviews and group feedback sessions, participants reported feeling better about their relationships with family and friends, reduced isolation, an increased sense of belonging and greater self confidence. They also expressed a greater awareness of community resources and their ability to access these. Based on participants’ request for continued programming for YOD, this program will now be offered twice a year through the Alzheimer Society of Toronto.

Conclusions: This program is unique in the Greater Toronto Area and among the few programs in Canada that provide direct and specialized services to people with YOD and their care partners. While the number of people living with YOD is substantially lower than older adults, their needs are distinct and call for more widespread services and research on impact of those services.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche