Research Delivery Psychologist Paula Brown, shares her experience of working on dementia studies with Nottinghamshire Healthcare NHS Foundation Trust's Research Delivery Team.
As a member of the local Research Delivery Team, it is with pleasure that I write this blog, giving me the opportunity to share my experience of supporting people living with dementia to take part in research.
Over the past 7 years, I have met with and come to know many families living with dementia who have given their valuable time and support to two particular studies – IDEAL study and Effective Home Support in Dementia Care | The University of Manchester . Both studies involved asking people who were currently living with dementia about their views, experiences, and ideas for future support. Specifically, the studies asked questions to gain information and insight into what aspects of everyday life were working well, what could be improved, and what people’s preferences were for future support and services.
Visiting people to talk about dementia research, when many of them had only received their diagnosis in recent months, was initially daunting. I had previously worked clinically with people living with dementia, but not asked them about research so soon after being diagnosed.
On a personal level, I experienced a roller coaster of emotions, as during this time I was caring for my grandma who had recently been diagnosed with dementia, as well as witnessing the changes in a friend’s life as they were coping with a diagnosis of young-onset dementia. Friends and family members had reported that in the weeks following their diagnosis, they were still coming to terms with the news, and were finding it hard to distinguish what was working well or what their needs were or might be in the future.
However, despite my early wobbles, I was amazed at just how many people told me that getting involved in research helped them. They felt it enabled them to learn more about dementia, that they benefitted from sharing their initial observations on the immediate effects of dementia on their lives, and that they were more empowered and in control of what the future might hold for them and their loved ones.
For five years I visited participants for lengthy sessions, with interviews and assessments involving some direct and personal questions. This led to some special bonds, as I came to know more about their everyday lives, relationships, and well-being.
I am truly grateful for this experience, and feel it was a tremendous privilege. Every day, whilst working on these studies, I was fascinated by the individual life stories that were shared with me; clearly dementia is only a small part of what is often an incredible personal story. Over the years, hearing about and observing, what for many was a significant deterioration in daily functioning, was immensely upsetting. Yet, alongside this I also witnessed things that were uplifting - the skills and abilities demonstrated, and the innovative adaptations made to life by families was simply inspirational.
The strength and generosity of these participants to share their experiences, especially in challenging times, is why these studies were able to create and develop materials and resources to help others who will live with dementia in the future – or as the IDEAL project states, to ‘live well’ despite the challenges.
An essential part of research is sharing not only the results, but any resources developed by study teams, with participants and staff. For me this makes research open and accessible to all. With that in mind, I would like to share the link to the brilliant dementia toolkits that were created as a result of the IDEAL and the Effect Home Support studies.
The Living with Dementia Toolkit from IDEAL is based on five themes which research shows have an impact on people’s ability to live well and feel good. What it means to feel good is different for everyone, so the toolkit is a way of supporting people with dementia and their carers to find out more about the areas of importance to them. Each area has several parts with short videos, top tips and strategies, links to further resources and (my favourite) good examples of ‘how to’ using real-life positive stories.
The Effective Home Support in Dementia Care | The University of Manchester toolkit provides resources for NHS and Social Care staff who provide support to people living in their own homes. Part of the resource is developing a manual for using memory aids in early-stage dementia, whilst another part provides evidence to inform service specification.
The links provided for both studies also give the details of published outputs from the programmes with links to the journal papers concerned.
If you’d like to find out more, contact
IDEAL: Emma Walter, Projects Administrator
Email:
Phone: 01392 72 2907
Effective Home Support in Dementia Care: Dr Paul Clarkson
Email:
Tel: +44 (0)161 275 5674
Supporting Dementia studies in the Trust: Paula Brown
Email: