The Imagine Series: what’s next for research in dementia with Lewy bodies? The carer perspective

Session: 

Oral session: Priority setting (1)

Date: 

Sunday 16 September 2018 - 11:20 to 11:30

Location: 

Carrick 2

All authors in correct order:

Garcia Gonzalez-Moral S1, Weissenbacher V1, Mitchell A2
1 NIHR Innovation Observatory, UK
2 NIHR Innovation Observatory/VOICE, UK
Presenting author and contact person

Presenting author:

Sonia Garcia Gonzalez-Moral

Contact person:

Sonia Garcia Gonzalez-Moral
Verena Weissenbacher
Alex Mitchell
Abstract text
Background: Many people suffering from dementia with Lewy bodies (DLB) are cared for by family members. Like other hard to reach populations, their voices are often not heard and research may not align with their needs.

Objectives: The Imagine Series – a patient and public involvement programme devised and co-ordinated by VOICE, a citizen involvement network, at the National Institute for Health Research (NIHR) Innovation Observatory – aims to inform research agendas by providing an overview of research literature in different clinical areas, highlighting gaps, and conducting informed discussions with carers.

Methods: We undertook a systematic mapping review of the evidence base along the current NICE dementia pathway. We used horizon-scanning methods to identify areas of current development. We used an evaluation of systematic review evidence relating to carers to inform workshops with carers, and designed a priority setting exercise around carer outcomes and patient symptoms.

Results: Mapping 400 studies and 18 results from horizon scanning revealed a heavy focus on diagnosis and treatment, but only sparse evidence about patient and carer experience. From the workshop, carers’ top priority was 'meeting the demands of being a care-giver' followed by the challenges presented by hallucinations, thinking and concentration problems, lack of motivation and anxiety.

Conclusions: A minority of DLB research considers the impact of symptoms on carers and the associated carer burden. Workshop findings demonstrate that carers feel challenged by DLB symptoms and their ability to meet the demands of their role. Future research should focus on supportive interventions for carers, further education efforts and solutions to problems of daily caregiver life. Better integration, co-ordination and availability of health and social-care services would benefit this population.

Patient or healthcare consumer involvement: Twelve carers of DLB patients attended the workshop and participated in priority setting exercises. A digital workshop will be hosted on the VOICE platform in March 2018. This will be delivered in partnership with the Lewy Body Society, and will provide carers nationwide the opportunity to contribute valuable insights. All findings will be incorporated into the DLB Imagine Series report and disseminated to UK and international stakeholders.

Attachments: 

PDF icon File 1.pdf
PDF icon File 2.pdf
PDF icon File 3.pdf

Relevance to patients and consumers: 

The Imagine series aim to give a voice to those more affected by a health condition. On this first series our goal was to gain an insight of dementia with Lewy bodies carer and patient challenges and needs, to study how current research trends map to those, where gaps are identified and how our current health care pathway reflects those met or unmet needs. The outcome of this Imagine series workshop and mapping review aims to influence future research agendas for the benefit of those at the center of the matter.