Welcome to my introductory blog about my part in the research programme The Science of Ageing and the Culture or Youth, 1880 to the present day (SAACY). Our first blog by Martina Zimmermann covered the wider SAACY research programme, including where the idea originated from, and what we are aiming to achieve through this exciting research. Martina also touched upon the different parts of SAACY that I and our other SAACY researcher Joe Wood will be working on. She also highlighted some of the questions that SAACY is attempting to address. These include: what role does dementia play in anticipations and anxieties about old age? How do such preconceptions relate to concerns or experiences related to care? In what way do fears about dying and the end of life contribute to pessimism about ageing?
I have always had an interest in ageing and dementia. This stems from my occupational background, prior to my research career, where I worked with older adults in the adult social care sector. I loved my job as a carer, but I wanted to do more. I wanted to make more of a difference to the lives of older people, I also wanted to help change the view of caring as an ‘unskilled’ job that ‘anyone can do’ and help people to recognise it for the highly skilled occupation that it is. Overall, I wanted to fight the stigma associated with old age and care. This desire to do more is why I now have a career in research focusing on older adults, people with dementia, and social care. Broadly, my previous work has largely looked at quality of life in older adults, with and without dementia, who live in care settings. I have researched the possibility of improving care through the routine measurement of quality of life, and I have also had forays into understanding adolescents’ attitudes towards dementia and dementia education.
The project I am working on as part of SAACY is a social scientific inquiry using qualitative research. The qualitative SAACY study will collect qualitative data from older adults with the aim to understand their perceptions, experiences, and expectations about ageing. In individual interviews I will explore what ageing and ageing well means to people, what people fear and anticipate about ageing, and what aspects of ageing and what fears or anticipations about ageing lead to people to perceive or experience ageing as positive or negative. I will explore the differences in the experiences and expectations of ageing between people from diverse groups and with distinct characteristics such as, sex, ethnicity, and geographic location (e.g., urban, rural, suburban). We are recruiting older adults who are healthy, who have a physical health condition, and who care for someone with dementia. And we will also soon be recruiting people who have dementia also. I will also follow-up a sub-set of participants over the lifetime of the project to understand how their perceptions change and what might be the cause of such changes. Initially I am recruiting adults aged 50 to 80 years old, with a plan to expand this over time to include older adults, and younger adults as well. This will allow us to understand wider views of ageing and where positive and negative perceptions of ageing come from in different groups and at different ages. Since stereotypes about dementia are formed over a lifetime, and we can acknowledge that widely held negative perceptions of dementia are closely aligned with negative and stigmatising views of ageing and older people, this could be a particularly exciting aspect of the research which could provide interesting insights into where negative views of ageing originate in younger age groups.
Data collection is currently underway, and we are starting to get some exciting preliminary results. Stay tuned for study updates on our blog and our website.
Aside from the data collection, one of the important components of the study that I am extremely proud of is that I am working closely with a lived experience advisory panel (LEAP). The LEAP consists of a small group of older adults who are providing valuable insights and advice from their lived experience to ensure that the research is effective, useful, and impactful. As a 38-year-old academic researcher I have no experience of what it means to be aged 50 to 80 years old, or beyond, it would therefore be disingenuous of me to even suggest that I could run this research without input from people who actually are of the target age. I cannot guess or make assumptions about their experiences and what it is like to be their age. This so-called Patient and Public Involvement (PPI) is defined as research which is carried out ‘with’ or ‘by’ members of the public rather than research which is carried out ‘to’, ‘about’ or ‘for’ them. The use of PPI is meant to enhance the research that is carried out and to improve its effectiveness, its impact, and ensure that it is patient- or person-centred. In this SAACY study, we are working closely with a small group of people; there are currently 4 people, but there will soon be 6. They are all adults aged 50 to 80 years old, they come from different geographic locations including London, East Sussex, and York. And they all bring different perspectives and experiences from their lives. I meet with the group regularly to discuss different aspects of the research. This could be broad discussions about wider aspects of the research and its dissemination, or it could be specific discussions about the appropriate wording of documents or questions that we will ask participants. I will have another blog coming soon where I delve into PPI groups a bit more and talk about their history, the goal of PPI, and how to work with PPI groups to create better research.
To take part in the study or to get more information you can email us or fill in a contact form and we will get back to you.
Stay up to date about SAACY through our website where we will post announcements, give updates on our progress, and provide information about our activities and events. We have an exciting event coming up at the Brighton and Hove Ageing Well Festival at the end of September where we will be hosting a discussion session about ageing research and giving an overview of our findings so far.