Objective
With this study we aim to understand the cognitive (e.g., memory, planning, attention) and psychological (e.g., depression, anxiety, worries about T1D treatment) barriers to optimal self-care and well-being in older persons with T1D. Additionally, we want to understand what aspects of cognition, psychological functioning, and behavior facilitate self-care and well-being, called “facilitators”. By collecting data in three large T1D centers in the US, The Netherlands, and Brazil, we will be able to also incorporate cultural aspects and access to health care. To achieve these objectives, we want to 1) characterize cognitive functioning and psychological symptoms, and the survey the burden of T1D-related complications, 2) determine the impact distress related to T1D, knowledge about T1D, declining cognition and psychological symptoms have on T1D-related self-care in older adults, and 3) identify the role that income inequality, access to health care and diabetes technology, and knowledge about T1D have on cognitive and psychological functioning and T1D self-care across countries.
We will also directly ask older people with T1D about the specific barriers and facilitators of T1D self-care and well-being they experience by conducting 90-minute interviews with participants. We will ask, for example, about how T1D impacts emotional well-being and psychological functioning, how it impacts cognitive functioning, and how cognitive functioning and psychological symptoms impact T1D self-care. We want to know about the impact of complications on life and about the fears about hypoglycemia or hyperglycemia and what other worries may be present. Additionally, we will ask significant others to share their thoughts about barriers and facilitators of T1D self-care and well-being as well, to be able to also understand these from the perspective of their significant others. In addition to these interviews, we will also collect data on cognitive and psychological functioning by using short cognitive tests for memory, attention, planning, reasoning, and questionnaires that ask about feelings of anxiety, depression, fatigue, diabetes-related stress, but also knowledge about T1D, confidence in T1D self-care and emotional well-being. In doing so, we will be able to construct from the person’s own perspective the needs related to self-care and how they interact with cognition, well-being, and psychology. Ultimately, the goal is to improve T1D-related health care for older persons and stimulate more research into ways of improving T1D self-care.
Background Rationale
The life expectancy of people with T1D has been steadily increasing worldwide, due to improving medical care and glucose control. Older age (i.e., age 65), however, is a period when functioning in many areas naturally slowly declines, most notably in physical and cognitive functions. Aging is, for example, associated with cognitive decline, as well as increased risk of more serious cognitive impairment – including dementia, a gradual loss of autonomy, and more social isolation. Together these factors can pose unique challenges for diabetes self-care and well-being in older persons with T1D. Unfortunately, research has largely overlooked the aging T1D population, and, consequently, there is very limited literature available on how T1D self-care is affected in older persons and what barriers and facilitators of self-care they experience. This is an increasingly important topic because we know that poorer self-care (in particular extreme glucose fluctuations and hypoglycemia unawareness) is related to increased risk in older people with T1D. For example, although the American Diabetes Association has incorporated routine cognitive and psychological screening in their standards of care for older people with T1D, there is no specification of when self-care regimens should be adjusted in a way that ensures that the cognitive demands are matched with cognitive capacity. Therefore, with this study we aim to understand what cognitive (e.g., memory, planning, attention) and psychological (e.g., depression, anxiety, worries about T1D treatment) barriers exist for self-care and well-being in older persons with T1D. Additionally, we aim to understand what aspects of cognition, psychological functioning, and behavior help with self-care and well-being, so called facilitators, and see how they differ across countries in the developed and developing world.
Description of Project
The life expectancy of people with T1D has been steadily increasing worldwide due to improving medical care and glucose control. Older age (i.e., age 65), however, is a period when functioning in many areas naturally declines, most notably in physical and cognitive functions. Aging is, for example, associated with cognitive decline and an increased risk of more serious cognitive impairment – including dementia, a gradual loss of autonomy, and increased social isolation. Together, these factors can pose unique challenges for diabetes self-care and well-being in older persons with T1D. Unfortunately, research has largely overlooked the aging T1D population, and, consequently, there is very limited knowledge available on how T1D self-care is affected in older persons. While we do know that living with and self-managing T1D can cause serious psychological and cognitive burden in younger people, there is limited knowledge about how this is manifested in older adults with T1D. This is an increasingly important topic as poorer self-care (in particular extreme glucose events and hypoglycemia unawareness) is related to increased risk of poorer metabolic control in older people with T1D. Therefore, with this study we aim to understand what cognitive (e.g., memory, planning, attention) and psychological (e.g., depression, anxiety, worries about T1D treatment) barriers exist for self-care and well-being in older persons with T1D. Additionally, we aim to understand what aspects of cognition, psychological functioning, and behavior help with self-care and well-being, so called “facilitators,” and determine how they differ across countries in the developed and developing world. We will obtain data about the specific barriers and facilitators of T1D self-care and well-being in older persons with T1D by conducting 90-minute interviews with participants where we ask, for example, about how T1D impacts emotional well-being and psychological functioning, how it affects cognitive functioning, and the other way around -- how cognitive functioning and psychological symptoms influence T1D self-care. We also want to learn about the effects of complications on life and about the fears about hypoglycemia or hyperglycemia and what other worries may be present. Additionally, we will ask significant others to share their thoughts about barriers and facilitators of T1D self-care and well-being. We will also collect data on cognitive and psychological functioning by using short cognitive tests for memory, attention, planning, reasoning, and questionnaires that ask about feelings of anxiety, depression, diabetes-related stress, but also knowledge about T1D, confidence in T1D self-care and emotional well-being. In doing so, we will be able to construct, from the person’s own perspective, their needs related to self-care and how these interact with cognition, well-being, and psychology. We expect that the results of this study will help improve the autonomy and glycemic control of older persons with T1D by our subsequent dissemination of study results to health care professionals and research scientists. This study will provide the foundational knowledge to guide larger studies and interventions directed at taking down barriers and improving facilitators of T1D self-care in older people with T1D and their significant others, aimed at improving glycemic control, avoiding hypo- and hyperglycemia and associated complications, and maintaining autonomy over one’s self-care with advancing age.
Anticipated Outcome
This study will provide the first data on the barriers and facilitators of T1D self-care in older persons from the perspective of the person themselves. We will also have detailed information about participants’ cognitive functioning and psychological status, general and diabetes-related well-being, and glycemic control/complications. By studying residents on three continents, we will be able to explore how cultural differences, the effects of income inequality, access to health care and modern diabetes technologies impact on barriers and facilitators of T1D self-care, on cognition, well-being and psychological functioning, which will help people with T1D globally. Additionally, we anticipate that the results of this study will help define new and improving already existing guidelines regarding when and how cognition or psychological well-being should be evaluated in older adults, about how and when treatment regimens should be adapted to cognitive capabilities, and about how and when more involvement of third parties (caregivers/spouses/significant others) in self-care is warranted. We expect that the results, through guidelines, will help improve the autonomy and glycemic control of older persons with T1D. Our findings may also improve health care professionals’ awareness of the importance of cognition and psychological functioning on self-care in this age group, which may improve their understanding and ultimately their care provided. From a research perspective, this study will provide the foundational knowledge to guide larger studies and interventions directed at reducing barriers and improving facilitators of T1D self-care in older people with T1D and their significant others, which may lead to better glycemic control, and to the avoidance of hypo- and hyperglycemia and their associated complications, while at the same time help these individuals maintain autonomy over their self-care with advancing age. Formal assessment of cognitive performance and psychological functioning in older people with T1D can also help ensure we have effective screening tools that can be used clinically to help identify people with T1D who are at risk of cognitive decline or psychological problems, again aimed at retaining one’s autonomy with respect to self-care as long as possible. Data from this study will also help shape new hypotheses to address questions about the relationship between quality of life and brain health, and the effects on older adults with T1D, particularly in the setting of faster brain aging.
Relevance to T1D
This study is highly relevant in advancing the science of diabetes, as this is the first international study to examine the barriers and facilitators of T1D self-care from the older adults’ perspective, with an explicit focus on the role of cognitive functioning and diabetes-related psychological functioning. From a clinical perspective, understanding the specific barriers and facilitators of T1D self-care in older people will help improve health care professionals’ and significant others’ understanding of problem areas and ways to mitigate them while examining cognitive functioning and psychological burden. Such a focus on the older person’s perspective in studies has so far not been adequately done, as most research has been conducted in youth with T1D. Furthermore, the addition of cognitive functioning and diabetes-related psychological functioning allows for a deeper understanding of how these factors interact with self-care, something that has not been previously done. This will help define and improve clinical guidelines regarding when and how cognition should be evaluated and when treatment regimens should be adapted to cognitive capabilities. With the inclusion of a diverse, international sample, this study may also help understand cultural differences in self-care perceptions between older adults from different regions, which will benefit older adults with T1D globally. From a research perspective, this study will provide the foundational knowledge to guide larger studies and interventions directed at taking down barriers and improving facilitators of T1D self-care in older people with T1D and their significant others. As a result, this may help with improving glycemic control, avoiding hypo- and hyperglycemia, and associated complications, and maintaining autonomy over one’s self-care with advancing age. Formal assessment of cognitive performance and psychological functioning in older people with T1D will help identify feasible and effective screening tools that could be used to help identify people with T1D at risk of cognitive decline or psychological problems. Data from this study will also help shape new hypotheses to address questions about the relationship between quality of life and brain health, and the effects on older adults with T1D, particularly in the setting of faster brain aging.