Living with young onset dementia and actively shaping dementia research – The Angela Project

Oliver, Keith; O’Malley, Mary; Parkes, Jacqueline; Stamou, Vasileios; Fontaine, Jenny La; Oyebode, Jan R.; Carter, Janet

doi:10.1177/1471301219876414

Cited by 13 publications

(13 citation statements)

References 7 publications

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“…In line with the CO-researcher INvolvement and Engagement in Dementia Model ( Swarbrick et al, 2016 ), the Patient and Public Involvement (PPI) group for our study was an integral part of the project. The Angela Project’s PPI group was involved from the beginning through to the dissemination phase of the project ( Oliver et al, 2020 ).…”

Section: Methodsmentioning

confidence: 99%

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

O’Malley¹,

Parkes

Campbell

et al. 2020

Dementia

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Introduction Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. Methods A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O’Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements. Results Twenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process. Conclusion Understanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient’s values and experiences should be used to support and guide clinical decision-making.

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Section: Methodsmentioning

confidence: 99%

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

O’Malley¹,

Parkes

Campbell

et al. 2020

Dementia

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“…There is an emerging qualitative research base involving people with dementia as social citizens with the capacity and confidence to actively campaign and contribute to debates about their future care and support needs (Birt et al, 2017). For example, Oliver et al (2020) describe the role of dementia-diagnosed individuals in a public and patient involvement forum, giving direction to dementia care within the United Kingdom, especially for those with young onset dementia. Both Rai et al (2020) and Hassan et al (2017) consulted with people with dementia regarding the use and appropriateness of user-friendly technologies and electronic devices.…”

Section: Hearing the Voicementioning

confidence: 99%

Doing their damnedest to seek change: How group identity helps people with dementia confront public stigma and maintain purpose

Hagan

Campbell

2021

Dementia

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Dominant messages about the capabilities of those with dementia post-diagnosis are often dehumanising and focused on mental declines. Additionally, carers for those with dementia are more likely to be involved in consultations and enquiries about the condition. This study helps to challenge stigmatising cultural messages by reporting upon the experiences of 13 adults diagnosed with early-stage dementia and how their involvement with empowerment groups in Northern Ireland has led to their involvement in consultations with policy makers and educational opportunities with the wider public. The study finds that this not only helps in challenging stereotypical ideas about dementia, as well as informing others, but also gives a sense of purpose to adults in their post-diagnosis lives. It is further noted that group identity helps give confidence and amplifies the voice of those who take part, allowing members to adopt a shared narrative and learn from each other.

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“…For the three participants who took part in the discussion group, their contribution was not a great deal different from those who took part at the University. The one‐to‐one narrative approach adopted with the fourth reflected her own preferred communication style; it demonstrated appropriate flexibility on the day and a willingness to adapt PPIE activities to individual preferences 20,22 …”

Section: Discussionmentioning

confidence: 99%

“…In recent years, direct involvement of people living with early‐stage dementia in research processes such as data analysis workshops 11 and coauthored accounts of the research process 20 have become more frequent, showing that it is possible to hear the voices of people who are actually living with the condition being researched. This is not just a matter of inclusive principle, however, since without the perspectives of those living with the condition, research lacks validity and important insights may be missed 21 …”

Section: Introductionmentioning

confidence: 99%

“…While the involvement of people with dementia does present practical and methodological complexities, 26 the onus is on researchers to adapt their methods and processes accordingly. This has already been achieved with some of the more creative approaches to research participation for people living with dementia, 27 and coresearch involving people with young‐onset dementia (YOD) 20 . Below, we outline a PPIE project in which older people with more advanced dementia also took part, in addition to people living with YOD and family members.…”

Section: Introductionmentioning

confidence: 99%

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Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

Capstick

Dennison

Oyebode

et al. 2021

Health Expectations

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Background The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over‐reliance on family members as proxies and lack of representation of seldom‐heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. Objective This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Participants Nine people living with dementia and five family members participated in this study. Results Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. Patient or Public Contribution People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.

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Living with young onset dementia and actively shaping dementia research – The Angela Project

Cited by 13 publications

References 7 publications

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

Doing their damnedest to seek change: How group identity helps people with dementia confront public stigma and maintain purpose

Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

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