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P17. Early-onset dementia

Detailed Programme, abstracts and presentations

P17. Early-onset dementia (Wednesday, 22 October, 8.30-10.00)

P17.1. A shifting sense of being: A secondary analysis and comparison of two qualitative studies on young-onset dementia

JOHANNESSEN Aud, MÖLLER Anders, HAUGEN Per Kristian, BIONG Stian

The aim of the present study was to investigate and interpret metaphorical expressions of the lived experiences of everyday life in people with young-onset dementia (YOD), and to compare these findings with findings from an analysis via grounded theory in order to see if the second analysis adds more knowledge to the topic. In this secondary analysis of data, metaphors from 20 Norwegian men and women living with YOD were investigated. Using Steger’s anthropological 3-step method, three categories were identified:Leaving traces,Sliding away, andAll alone in the world. Comprehensively, we understood the metaphors as representing the participants’shifting sense of being. Acknowledging metaphorical expressions as a source of knowledge, this study reflects on how metaphors can be used in therapeutic dialogue. We conclude that metaphors add to the understanding descriptions of daily life in a more existential way, beyond the results gained from the grounded theory analysis. However, the findings from the analysis via grounded theory included aspects that we did not find when analysing the metaphors.

P17.2. Cogs Clubs – A Popular Model of Support in Early Dementia

TUPPEN Jackie, BURTON-JONES Julia

Cogs Clubs are based on the clinically proven benefits of cognitive stimulation therapy and provide a structured 5-hour weekly session for people in early to moderate dementia.  Their aim is to help maintain skills while offering a context for peer support.  Membership is small – between 6 and 12 people with dementia plus facilitators and volunteers – and drawn from a limited geographical area so that community engagement is sustained.  The clubs also provide a reliable break for close relatives and friends of the person with a diagnosis at a stage of the dementia when formal services are not needed but relationships benefit from support.  Clubs are hosted by a range of local organisations and can also be run by motivated individuals with support from their community.

In late 2013 an evaluation of 12 Cogs Clubs drew a high level of positive response from members, their relatives and facilitators.  This has provided a rich source of data on the perceptions of all the stakeholders and enabled us to understand the reasons each person is pleased to be associated with their club. 

In our presentation to the Alzheimer’s Europe Conference we would like to share what we have learned about the motivations of each group of stakeholders (facilitators, members with dementia, and relatives). We will talk about the key ingredients of this innovative model of support in early dementia and explain why it is a low-cost and achievable approach that can be replicated in many community settings.  We will emphasise the importance of maintaining resilience in early dementia; this benefits the person with dementia, their friends and family and the relationships that sustain caring networks. Through harnessing the informal resources within local communities, independence and quality of life in dementia can be strengthened.

P17.3. The Forget-me-nots: Developing a social group for people with young onset dementia and their carers.

PARKES Jacqueline Dr, WARD Alison

Based on the findings of some work undertaken by the Dementia Research network (DRN) at the University of Northampton (UK), it has been identified that individuals with young onset dementia and their carers wish to be actively supported in re-building normal social networks following initial diagnosis, while receiving timely and appropriate access to formal integrated care pathways. This presentation will present the development of The Forget-me-nots Social group, a specific tailor-made community-based social intervention, which is designed to promote normalisation and social connectedness.

Led by Dr Jacqueline Parkes, an experienced mental health nurse, the members of the DRN, together with the Alzheimer’s Society Northamptonshire, jointly identified the apparent need for a community-based social support group for people with young onset dementia (aged < 65) and their primary carers in the region, and agreed to undertake a survey to investigate the viability of such a group. There was overwhelming acknowledgement and support for the development of such a unique group within the region. Based on the findings of the survey, and some supportive individual qualitative interviews, and the willingness of both the Alzheimer’s Society and the School of Health at the University to support the proposal with both staff resources and some initial financial assistance, the social group began in July 2013.

The aim of ‘The Forget-me-nots’ is to provide a safe and non-judgmental environment where younger people with dementia and their carers can meet, talk, have fun, arrange events and if they wish to, share ideas and discuss issues which are currently affecting them. This is a new group which will be developed by its members for its members. This presentation will summarise the findings of the initial survey and supportive qualitative interviews, the development of the social group and the outcomes of an evaluation to ascertain the group’s effectiveness.

P17.4. An insight into the Lifeworlds of people with early dementia-development of a qualitative participatory research model

THOFT Diana Schack

Limited knowledge exists about how dementia affects a person´s life seen from the perspective of people living with the disease. The aim of this Ph.D. study is to develop a participatory research model drawing from qualitative participatory research about the lifeworlds of people with early stages of dementia. Knowledge about how to involve people with early dementia as research partners and knowledge about their lifeworlds is important because people with dementia often are excluded from research activities. Thus has dementia 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 become active research partners.

The methods used in the study are a combination of participatory and ethnographic research methods; participant observation, interview, Ecological Momentary Assessment and focus groups. In the study ten people with early dementia from an adult school in Denmark will be trained in research skills inspired from two patient and public involvement models to qualify them to conduct a participatory research project. In the study the participants’ own suggestions and steps in the research process will inform both the research project and the development of a participatory research model. All data will be analyzed from an interpretive phenomenological perspective inspired from Max Van Manen.

It is anticipated that the study will develop a model for how people with early dementia can be trained and involved as active research partners and knowledge about how dementia affects a person´s daily life; which is important to provide a greater holistic understanding about the disease. The study will raise the profile of the voice of the person with dementia, so that future treatments, cares and services can be offered according to what people with early dementia experience as relevant.

P17.5. Retaining a sense of usefulness in Young Onset dementia: A qualitative study.

VAN VLIET Deliane, VERNOOIJ-DASSEN Myrra, DE VUGT Marjolein, BAKKER Christian, PERSOON Anke, KOOPMANS Raymond, GERRITSEN Debby

Background:This study intends to explore the aspects of daily life that give people with young onset dementia (YOD) a sense of usefulness and can preserve their self-esteem. Knowledge on these potential empowerment opportunities can facilitate healthcare to better connect to strengths and reciprocation in the daily life of YOD patients and caregivers.

Methods:Eight focus groups were conducted; 4 with people with YOD and 4 with informal caregivers. The YOD groups consisted of 12 males and 8 females in total, with a mean age of 63.50 (SD=6.51). Educational level was low (33.3%), middle (41.6%) or high (25.0%). The mean age of caregivers was 61.38 (SD 9.29) and the groups consisted of 12 males and 20 females in total. The transcriptions were entered into Atlas.ti, a software program used to support the analysis of qualitative data. Inductive qualitative content analysis was carried out to derive codes, categories and themes from the data.

Results:Preliminary findings show that the following themes emerged: ‘loss’, ‘retaining a sense of usefulness’, ‘the need for pleasant activities’, ‘coping’, ‘the role of the caregiver’ and ‘the role of the environment’. Feeling useful was partly associated with loss as a consequence of dementia, e.g. losing the ability to work or the parenting role. Retaining a sense of usefulness was considered important and possible by having social roles and/or doing functional activities, such as housekeeping, doing chores or watching the grandchildren. However, the need for pleasant activities seemed just as important and increased over time, while the need to be useful diminished over time. Active coping styles, the support of the primary caregiver and support services may play a facilitating role in feeling useful, whereas passive and avoidant coping styles, a lack of understanding of the environment and losing social contacts may play a negative role.

Conclusion:Preliminary findings show that it is important for people with YOD to have the opportunity to feel useful; especially in the early stages of dementia. Caregivers should be informed about opportunities to feel useful for people with YOD and ways to stimulate and involve them in activities.

P17.6. Younger people witH dementia forum

LORENTI Rikki, Dr HUSSEY Jacqui

Age should be no barrier to accessing services has always been the view of those determined that people with dementia 65 years and over get good quality diagnosis, immediate and fast treatment and appropriate after care. But there are over 13,000 people in England alone who are predicted to have a diagnoses of early onset dementia…but could this be a conservative estimate.

This is an epidemic within an epidemic, and anecdotally we know that the population struggle with hearing that people in their 40’s are being diagnosed with a dementia. Services are fragmented and the perception is that early onset patients can be managed within the older adult health and social care system. Is that true? We are looking on a population who are fit, were 60’s and 70’s children, have their own children at school, and are still working, as well as the spouse who may also be working and finding themselves juggling parenthood and their new role as carer.

YPWD Berkshire West (a registered charity) was born out of the Younger People with Dementia Forum. The forum demanded age appropriate services for early onset clients, and skilled support for carers. Patients are now receiving services that are age appropriate, with a specialized team that understands the factors that cause stress and uncertainty for a group of patients and their families. It is not rocket science to possibly consider that patients will respond in a positive way, if they are interacting with younger staff, and fellow patients of their own age, who understand each other’s lives, whilst the carer is demanding an ear, a voice and experience to see them through the journey. We can show you model of quality day respite/specialised workshops and the development of Admiral Nursing, the first nurse supporting young onset carers in the UK.

 

 
 

Last Updated: Monday 08 December 2014

 

 
  • Acknowledgements

    The 24th Alzheimer Europe Conference in Glasgow, Scotland, UK received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and Alzheimer Scotland gratefully acknowledge the additional support provided by foundations and companies.
  • European Union
  • Big Lottery Fund
  • Glasgow City Marketing Bureau
  • Institute for the Scientific Information on Coffee
  • Life Changes Trust
  • Roche
  • SCA Global Hygiene
 
 

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