Experiences and expectations of older adults with type 1 diabetes
Research type
Research Study
Full title
An investigation into the experiences of, and attitudes towards, diabetes self-management in older adults with Type 1 Diabetes.
IRAS ID
325331
Contact name
Jonathan Golding
Contact email
Sponsor organisation
University Hospitals Sussex
Duration of Study in the UK
1 years, 2 months, 2 days
Research summary
Summary of Research
Controlling type 1 diabetes (T1DM) may become harder with age as people see changes in weight, appetite, physical activity and memory. Some people will develop frailty as they get older. Frailty refers to a person’s ability to bounce back and recover from illness or injury. Experience tells us that many people with T1DM worry about how ageing may affect them, though research into the exact nature of these concerns is lacking. New technology may assist with some of the challenges of ageing, but little is known about how people feel about its use.
We aim to investigate experiences and attitudes towards ageing with T1DM. Participants will be selected from those who have been part of a separate study and consented to be approached about future studies. Interviews with 20 older adults with T1DM, and 10 people caring for older people with T1DM will be performed. Care will be taken to include those with varying ages, frailty level, gender and experience of technology. Interview transcripts will be analysed to assess key themes.
Understanding the issues that matter to older adults with T1DM and those that support them will help care services develop to better meet their needs as they age.
Summary of Results
Who carried out the research?
The authors carried out the research with the support of the sponsor, University Hospitals Sussex NHS Foundation Trust and with generous funding from Novo Nordisk UK Research Foundation.Public and Participant Involvement (PPI) A group of three older adults with type 1 diabetes (T1D) was involved in developing the research idea.
Introduction – why was the study needed?
Improved care means people with Type 1 diabetes (T1D) are living longer. Up until recently it was rare for someone with T1D to live to old age. More people living with T1D are expected to reach older ages in the coming years. T1D treatment in older age can be complex, and the thought of ageing can cause anxiety. People can experience physical and mental changes associated with ageing, like frailty or dementia.
The experiences and challenges of people ageing with T1D have not been explored in research. Sometimes older people will require care from others. There has also been very little research into the experiences of those that care for older adults living with T1D. This study aimed to increase our understanding of the experiences of older adults living with T1D, and those that are involved in caring for them, including how they feel about the future.What were the main questions of the study?
• What are the experiences and expectations of older adults with T1D towards self-management of diabetes as they age?
• What are the experiences and expectations of carers towards management of diabetes as people age with T1D?The study
The study took place at between March 2024 and January 2025. 16 adults over 65 years old with T1D, and 14 people involved in caring for an older adult with T1D took part in the study. Those taking part were chosen to make sure there was a good mix across genders, ages (although all were over the age of 65), frailty level, and experience of diabetes technology. Carer participants were chosen to ensure we heard from different carer types including: informal carer (friend of family member); formal carer (paid carer, but not a registered nurse); and registered nurse. All participants were interviewed to explore their experiences. Semi-structured interviews, which lasted roughly 1-hour, were audio recorded and typed out to give a transcript of what was said. These transcripts were shared with each interviewee to ensure they were accurate. A process called Thematic analysis looked for common themes that arise from the interviews.Results - Older adults living with T1D
Five themes were identified from interviews with people living with T1D:
1) T1D care is specialist (and I am the expert of my own diabetes)
Participants explained how they had become experts in their own T1D over time. Most had lived with T1D for several decades. Some had experienced using glass syringes, drawing up insulin from vials, and sterilising equipment on the stove. They had developed bespoke skills from these experiences. Added to this, was the feeling that some healthcare professionals (HCPs) are not knowledgeable about T1D. All could point to stories of bad experiences in healthcare settings that led to a strong sense of wanting to retain control of their own T1D.
2) My diabetes has changed through ageing
Most participants felt that T1D had become easier to manage with age. They pointed to: the greater access to technology such as continuous glucose monitors (CGM), these are devices worn on the skin that continuously measure glucose levels just beneath the skin; having more time to dedicate to their diabetes; increased experience to manage diabetes over many years; and reduced worry about the impact of diabetes.
3) Ageing is challenging, but unrelated to diabetes
Participants did consider ageing to be challenging, although most did not feel diabetes caused this. Instead, challenges included loneliness, caring responsibilities, reduced ability to carry out tasks (including mobility), and low mood.
4) Cognition/Memory
All participants were concerned about coping with memory impairment, aware that T1D self-management relies on memory and reasoning skills. There was also worry over the severe impacts of giving too little, or too much insulin if their memory declined.
5) Handing over diabetes care
Participants were keen to remain in control of their T1D for as long as possible. Many felt that diabetes technology could help to achieve this. Participants generally felt more comfortable trusting a person that they knew, rather than an HCP, even though this might be difficult for the person caring for them. There was concern over T1D care in long-term care settings like nursing homes.Results – Carer participants
Carer participants included 6 informal carers; and 8 HCPs made up of 3 formal (employed) carers and five registered nurses. Of the HCPs, one was a live-in-carer, two worked in a nursing home, and the other five worked in community nursing teams. Five themes were identified:
1) Knowledge
All participants recognised the importance of knowledge in treating T1D. Among informal carers there was a strong desire for diabetes training. This does not currently exist for carers. The formal carers had different levels of training, but none had completed training specific to T1D. The nurses all wanted further training in diabetes.
HCP participants were asked to explain the difference between T1D and type 2 diabetes. All the nurses and two formal carers knew that people with T1D are managed with insulin. Two of the nurses and one of the formal carers believed that all individuals on insulin are classed as T1D.
2) The ability to adapt to changing circumstances
Participants could see that T1D cannot always be treated the same way, with management having to change when circumstances change. This can be difficult for a carer, who may have other duties. Examples of this included: remaining constantly alert to sudden changes in glucose levels; adjusting insulin dose to food intake; timing insulin with meals; and anticipating future events such as activity, ill health, or appetite.
3) The mental load
Participants spoke of the impact that caring for an older person with T1D can have. Some felt intensely responsible for the person they care for and can feel guilt when things go wrong. Carers are often not respected in society for their role and often experience financial impacts too.
4) Practical barriers to successful management
Some participants were aware of what could improve diabetes control for the person they were caring for, but experienced practical barriers in achieving this. Often this was due to other responsibilities like work, family, ill-health, or other patients under their care. This often made it difficult to time insulin with meals or be permanently present to treat a hypo. For the HCPs, policies sometimes prevented certain staff from administering insulin or required staff members to rely on fixed insulin doses.
5) The role of diabetes technology
All carers that had used CGM were supportive of its use. The nursing home staff were unsure about CGM, with concerns over cost, and the training required. There was excitement about the potential diabetes technology, although some felt this might not be appropriate for people living with T1D and dementia. Remote monitoring of glucose levels for nursing teams was also discussed but this was generally considered not feasible within community nursing teams.How has the study helped?
This study looked at the experiences and future expectations of both older adults living with T1D, and their carers. Older adults with T1D can successfully self-manage their T1D throughout the ageing process. They have used the knowledge learned from a lifetime with T1D, supported by technology like CGM. Concern about the impact of memory impairment alongside T1D was shared by some participants, including how this might affect self-management, and require them to hand over their own T1D care. This concern is worsened by a feeling that some HCPs do not understand the core concepts of T1D care.The carer interviews also showed that many carers, including HCPs, do not feel they have the required training to successfully manage T1D. Many carers are unable to care for T1D as they would like due to other responsibilities, and use of fixed insulin doses. More needs to be done to upskill staff in T1D management, particularly in long-term care facilities, where staff may not be familiar with T1D. Greater use of technology may help to relieve some of the pressure that carers can face. More research is needed to ensure that training in the use of technology does not increase the workload of HCPs.
This research has been submitted for presentation at Diabetes UK, a conference for healthcare professionals involved in the care of diabetes. We will prepare a manuscript for presentation in a medical journal. The researchers intend to look more into the issue of T1D and dementia, with increased use of technology a proposed solution. How to apply currently available technology into settings such as care homes or community teams will be a challenge that warrants further exploration.
Conclusion
As treatment for T1D has improved, people are able to live longer, and this will mean more people will be reaching older ages with T1D in the coming decades. Understanding more about the experiences of older adults living with T1D, and those that care for them, including the challenges they face, will help in creating services that more closely meet these needs.REC name
HSC REC B
REC reference
23/NI/0121
Date of REC Opinion
23 Aug 2023
REC opinion
Further Information Favourable Opinion