Journal of Gerontological Nursing

Feature Article 

The Lived Experience of Older Adults With Type 2 Diabetes Mellitus and Diabetes-Related Distress

Lenore Hernandez, PhD, RN, CNS; Heather Leutwyler, PhD, RN, NP, CNS; Janine Cataldo, PhD, RN; Alka Kanaya, MD; Arthur Swislocki, MD; Catherine Chesla, PhD, RN

Abstract

An older, more diverse population and longer lifespans are major contributors to the anticipated tripling of diabetes prevalence by 2050. Diabetes-related distress affects up to 40% of people with diabetes and may be a higher risk for older adults due to greater prevalence of comorbidities. The objective of the current phenomenological study was to describe how diabetes-related distress might be uniquely experienced by older adults (age ≥65) with type 2 diabetes mellitus (T2DM). Interpretive phenomenology guided the research design and analysis. Everyday life experiences of living with T2DM and elevated diabetes distress were investigated with interpretive interviews. The most prevalent lived experiences were strained relationships with health care providers, guilt, fear, loneliness, and forgetfulness. These experiences created challenges in managing diabetes and increased diabetes-related distress. Improving knowledge regarding the lived experience of older adults with diabetes-related distress may allow health care providers to tailor treatment to this population, thus improving outcomes. [Journal of Gerontological Nursing, 46(3), 37–44.]

Abstract

An older, more diverse population and longer lifespans are major contributors to the anticipated tripling of diabetes prevalence by 2050. Diabetes-related distress affects up to 40% of people with diabetes and may be a higher risk for older adults due to greater prevalence of comorbidities. The objective of the current phenomenological study was to describe how diabetes-related distress might be uniquely experienced by older adults (age ≥65) with type 2 diabetes mellitus (T2DM). Interpretive phenomenology guided the research design and analysis. Everyday life experiences of living with T2DM and elevated diabetes distress were investigated with interpretive interviews. The most prevalent lived experiences were strained relationships with health care providers, guilt, fear, loneliness, and forgetfulness. These experiences created challenges in managing diabetes and increased diabetes-related distress. Improving knowledge regarding the lived experience of older adults with diabetes-related distress may allow health care providers to tailor treatment to this population, thus improving outcomes. [Journal of Gerontological Nursing, 46(3), 37–44.]

Diabetes is a growing epidemic. By 2050, the current proportion of Americans with diabetes, one of eight individuals, is projected to double or even triple (American Diabetes Association [ADA], 2018). Two contributors to the diabetes epidemic are an older, more diverse population and longer lifespans (ADA, 2018). According to the Centers for Disease Control and Prevention, in 2018, the percentage of older adults (age ≥65) with diabetes was 25.2% or 12 million individuals. Diabetes in older adults is linked to higher mortality, reduced functional status, and an increased risk of institutionalization (Lekan & McCoy, 2018; Sinclair & Rodriguez-Mañas, 2016). Older adults with type 2 diabetes mellitus (T2DM) have a greater prevalence of comorbidities than younger adults, and this older age group may be at greater risk for developing diabetes-related distress. Researchers have hypothesized that diabetes-related distress is a barrier to effective blood sugar control and increases the likelihood of diabetes-related complications (Berry, Lockhart, Davies, Lindsay, & Dempster, 2015; Martinez, Lockhart, Davies, Lindsay, & Dempster, 2018).

Diabetes-related distress is defined as the unique emotional burdens and worries associated with managing a severe, demanding chronic disease such as diabetes (Berry et al., 2015; Browne, Ventura, Mosely, & Speight, 2013; Fisher et al., 2013; Kirk et al., 2014; Manderson & Kokanovic, 2009; McMahon, Fonda, Gomes, Alexis, & Conlin, 2012; Nicolucci et al., 2015; Park & Reynolds, 2015; Stuckey et al., 2014). The concerns of receiving proper diabetes-related treatments and communicating with health care providers can increase the emotions associated with diabetes-related distress (Gebel, 2013). Diabetes-related distress is common and impacts as many as 40% of people with diabetes (Berry et al., 2015; Snoek et al., 2011). Diabetes-related distress has been associated with poor glycemic control, poor self-care, low diabetes self-efficacy, depression, and poor quality of life (Bangen et al., 2015; Snoek et al., 2011). The likelihood of developing and intensifying diabetes-related distress increases over time (Snoek et al., 2011). Therefore, older adults may be at greater risk for developing and experiencing a higher intensity of diabetes-related distress.

Research on older adults with T2DM and diabetes-related distress has recently gained greater interest but information on this topic is sparse (Chew, Vos, Metzendorf, Sholten, & Rulten, 2017). Research on adults with T2DM has shown that neuropathy, strokes, respiratory issues, arthritis, and cardiac issues increased hemoglobin A1c (A1c) and the risk of diabetes-related distress (Jones, Clay, Ovalle, Cherrington, & Crowe, 2015). In addition, insulin use, difficulty following dietary guidelines, anxiety, and negative life-changing events have been shown to increase diabetes-related distress in adults (Nanayakkara et al., 2016; Westley, August, Alger, & Markey, 2018). Research that provides greater insight on how diabetes-related distress impacts the everyday existence of older adults with T2DM is greatly needed. Information gained from the current study will likely provide guidance to health care professionals on how best to provide care to this growing population.

The current study aims were to (a) explore the lived experience of older adults with T2DM and diabetes-related distress; and (b) interpret dimensions of morale that are unique to diabetes management behaviors and glucose regulation in older adults with T2DM and diabetes-related distress. Increasing the understanding of this complex group of older adults will likely provide insight on successful clinical approaches and improve the collaboration between health professionals and older adults with T2DM.

Method

The current phenomenological study used interpretive comparative interviews to investigate the experiences of being an older adult with T2DM and diabetes-related distress (Table 1). In study interviews, participants (N = 16) described their everyday challenges with diabetes management. Theses narratives were analyzed to identify themes related to diabetes self-management.

Interview Guide

Table 1:

Interview Guide

Sample inclusion criteria were T2DM, age ≥65, and a Diabetes Distress Scale (DDS; Behavioral Diabetes Institute, n.d.) score of at least 3 (a moderate score for diabetes-related distress). Age ≥65 was chosen as an inclusion criterion because this is when Medicare benefits can be initiated (Social Security Administration, 2018), and from a chronological viewpoint, geriatric medical treatment begins at this age (Sieber, 2007).

Exclusion criteria were conditions that precluded participation in open-ended interviews, such as severe cognitive decline and inability to hear. Twenty-four older adults with T2DM were screened for the study and 16 met inclusion criteria. A convenience sample was recruited from local senior communities and centers in Contra Costa County, California by flyers (n = 8), from the Veteran's Affairs Northern California Health Care System (VANCHCS) in Martinez, California by invitation from the diabetes educator nurse (n = 5), and by snowball sampling (word of mouth) (n = 3).

The study was approved by the University of California, San Francisco and the VANCHCS. All participants completed a written consent. Participants received $25 in cash or as a gift card after each interview. Community participants were interviewed in their homes or other private locations nearby their homes; participants from the VANCHCS were interviewed in a private location in the clinic. The semi-structured interviews focused on the perceived sequelae of diabetes and the influence of T2DM care on daily activities. At the end of the first interview, participants completed the Patient Health Questionnaire-9 (PHQ-9) (Cronbach's alpha = 0.89) (Kroenke, Spitzer, & Williams, 2001) (r = 0.790) (Zhang et al., 2013) to determine whether, in addition to diabetes-related distress, participants also had depressive symptoms. Each participant was interviewed twice. The second interview was a follow up to clarify and deepen understanding gained from the initial interview.

After narrative analyses were conducted, codes specific to the descriptions of distressing emotional experiences and challenging aspects of diabetes self-management were selected for review. The review examined complete text from five frequently occurring codes: (a) relationships with health care providers; and emotional dimensions of (b) guilt, (c) fear, (d) loss and loneliness, and (e) forgetfulness. Further analysis of the reflective discussions and narratives of the experiences, challenges, physical and emotional sensations, and meaningful aspects of the lived experience of being an older adult with T2DM and diabetes-related distress resulted in the identification of recurring patterns or themes across the dataset. This analysis also evaluated participants' positive and negative experiences, challenges, difficulties, individual backgrounds, and living situations. A detailed data review and analysis of >300 pages of text enabled the reporting of meaningful experiences that were representative of the 16 participants.

Results

Participants with T2DM and diabetes-related distress reported: (a) difficulties in relationships with their health care providers; (b) guilt associated with food intake and lifestyle choices; (c) fear associated with their previous experiences of having a parent with diabetes; (d) a pervasive sense of loss and loneliness; and (e) an overall sense of forgetfulness. Female participants had been diagnosed with diabetes for a longer period of time (mean = 17 years [SD = 18 years] vs. mean = 11 years [SD = 16.11 years]) and were older (mean age = 81.5 years [SD = 3.5 years] vs. mean age = 68.9 years [SD = 3.09 years]) than male participants (p < 0.001). Participants who had lost their spouses to death were all female and all expressed loss and loneliness. Eight of 16 participants were off spring of one or more parents with T2DM, and some of those participants noted that their adult children also had T2DM. Male participants from the VANCHCS sample had high scores on the PHQ-9 (mean score = 13.6 [SD = 7.2]), whereas male participants in the community were not depressed at all. The groups did not differ in their DDS scores. Sample demographics are represented in Table 2.

Demographic and Clinical Characteristics of Participants (N = 16)

Table 2:

Demographic and Clinical Characteristics of Participants (N = 16)

Relationship With Health Care Provider

Participants reported that health care providers were preoccupied with looking at laboratory (lab) values during clinical visits. Important elements of the patient–provider relationship that focus on the interpersonal aspects of care and rapport building were not fostered.

Conversations between patients and health care providers centered on A1c results, and there was little engagement in the patient's experience or concerns regarding diabetes such as hypoglycemia.

One Veteran complained of what he perceived to be his provider's authoritarian communication style in “commanding” him to take his medications. This participant indicated he would prefer “more communication and discussing things.”

Most participants did not have meaningful dialogue with their health care provider. There was little discussion about meaningful issues related to their diabetes and virtually no diabetes education. This lack of support and engagement led to diabetes-related distress for many participants.

Many participants characterized their health care as being inconsistent. Some participants had been required to switch health care providers because of changes in insurance coverage and physicians leaving their practice. Some participants experienced different messages from specialists versus generalists who were managing their care. For these participants, inconsistent care led to confusion, lack of direction in their self-management, and further exacerbation of their diabetes-related distress.

Providers who spoke too fast or with an accent also posed communication challenges for these participants. Some participants attested to not understanding instructions from the health care provider because of communication barriers.

Many participants believed that providing education and support during the pre-diabetes period may have prevented the progression to T2DM. Participants remarked that they received diabetes education after receiving their T2DM diagnosis; hence, the focus on prevention was limited.

There were positive aspects of interpersonal relationships experienced by participants. Participants felt supported by health care professionals who were described as “wellness coaches.” Participants described three primary types of support: reminders to take their medications, encouragement to exercise, and advice about how to manage diet. This type of support was often referred to as “coaching” and considered a positive experience for participants.

Guilt

Thoughts of food were often accompanied by feelings of guilt related to the cause of T2DM. One participant stated, “Diabetes is something you get if you don't take care of yourself, if you don't eat properly.” Many participants felt remorse and regret for past food choices, feelings that intensified and perpetuated their diabetes-related distress.

Failure to abstain from foods that contributed to blood sugar elevations (e.g., pastries, ice cream), not eating meals at routine times, and not participating in regular exercise perpetuated participants' feelings of guilt long after their diagnosis of T2DM. Eating certain concentrated carbohydrate foods often led to remorse.

Participants also described being intensely aware of food and exercise, stating they were preoccupied with such thoughts. A preoccupation with food and exercise contributed to participants' frustration and burnout. Participants commented that every time they eat sugary food, they experience guilt. Similarly, they said that each day they did not participate in some form of exercise, they felt guilty.

Fear

One half of participants reported that one or both of their parents had T2DM. Many participants shared their memories (e.g., amputation, drawn out death) of their parents as people with T2DM.

The diagnosis of T2DM in families with a history of disease was troubling for participants. Reasons for the frequency of diabetes in families are complicated and multifactorial. Participants projected the experiences of their parents and grandparents onto their own disease and experience. Reflecting on their parents' experiences induced dread and fear that they would eventually experience the same complications. For some, there was a sense of inevitability of T2DM. Other participants struggled with their ability to control the course of disease and were concerned about their capability in preventing diabetes-related complications. The emotional burden and worry associated with the possibility of diabetes-related complications resulted in an exacerbation of diabetes-related distress.

Feelings of Loss and Loneliness

Some participants, in the course of describing their diabetes experience, reported intense and sustained feelings of loss and loneliness. The primary causes of these feelings were the death of their spouse and missing the life that they had shared with their spouse.

For those who lived alone, there was a greater sense of personal responsibility, for example, regarding medication management and meal planning and preparation. For some, loneliness was a barrier to performing diabetes self-care and engaging in physical activity—the latter due to excessive television viewing. For participants who experienced loneliness, the loneliness exacerbated their experience of diabetes as challenging.

For some older adults, living alone engendered feelings of fear. One participant said, “I am afraid of not waking up in the morning. I don't have anyone to check on me.” Another participant reported that as she grew older, her panic attacks became more frequent.

Forgetfulness

Several participants disclosed that they had problems with recall and memory (e.g., remembering the names of objects, medications, meals, health care provider instructions). Participants also noted that their forgetfulness interfered with their medication management and adherence.

Missing medication doses can contribute to blood sugar elevation. In addition, taking an excessive number of medication doses or not timing certain medications with meals can lead to hypoglycemia. Older adults who reported forgetfulness found their memory failures distressing. Memory gaps likely impaired safety, independence, and blood sugar control.

Discussion

Data from the current study showed that being an older adult with T2DM and diabetes-related distress was complex and compounded by past experiences, relationships, emotions, nutritional intake, and memory loss. Relationships with health care providers often lacked rapport and had a negative impact on the emotional well-being of participants.

Lack of rapport between health care providers and patients can lead to relationships that are not productive or therapeutic and cause or exacerbate diabetes-related distress. Previous research has shown that patients who are distressed about living with T2DM, and who are dissatisfied and disengaged with their health care providers, showed poor adherence to their medication regimen and poor glycemic control (Linetzky, Dingfeng, Funnell, Curtins, & Polonsky, 2017). Inadequate or unsatisfactory engagement with a provider was most frequently described by Veterans in characterizing their relationships with health care providers. Most Veterans believed their clinical visits were discouraging and authoritarian in nature. In contrast, community participants found health care visits unsatisfactory because their providers focused primarily on lab results and lacked attention to their individual lifestyle concerns. In the current study, the clinical encounters with providers who focused on lab test values in lieu of learning about the patient's efforts to manage a chronic condition led to dissatisfaction. In such superficial, topic-restricted clinical conversations, providers and patients lose a valuable opportunity to cooperatively develop a comprehensive perspective.

Most participants viewed food and lifestyle behaviors as contributors to their disease. There was a great deal of participant reflection on these contributors, which led to self-blame and guilt. Guilt was compounded when participants ate carbohydrate-rich foods and did not participate in physical activity. The associated rise in blood sugar was immediately followed by emotional responses of guilt, regret, and self-blame. These emotional responses add to the burden of diabetes and complicate the experience of patients already distressed by their condition.

Food preparation and eating by oneself were difficult for those who lived alone and appeared to perpetuate loneliness and loss. Participants who were widows missed the sense of partnership and camaraderie that they had while they were married; these women expressed a great deal of loneliness. They were left to figure things out on their own regarding medication management and food preparation and they missed the companionship they experienced when their spouses were alive.

One half of participants were second-generation family members with T2DM; this distinction may make treatment for these individuals more complicated. Most participants whose parents had diabetes experienced negative, sometimes traumatic, memories of their parents' struggles and complications. The reasons for this family tendency (e.g., culture, genetic predisposition) may make diabetes self-care and providing health care to this group of older adults more challenging. Family history and experiences of these participants likely influence perceptions of diabetes and create anxiety and fear when talking about topics related to diabetes. Anxiety has been known to create a barrier to being open to medications (including insulin), suggesting dietary modifications, and encouraging finger sticks (Li et al, 2008). Anxiety and fear promote worry, which potentiates diabetes-related distress.

Forgetfulness was another challenge faced by older adult participants. Diabetes and pre-diabetic states are risk factors for cognitive decline, mild cognitive impairment, and dementia (Hopkins et al., 2016; Ravona-Springer & Schnaider-Beri, 2011). Diabetes has been shown to lower performance in all cognitive domains (Bangen et al., 2015; Demakakos, Muniz-Terrera, & Nouwen, 2017), which may explain how memory challenges consistently complicate self-care routines in older adults with diabetes. Researchers have reported a strong correlation between Alzheimer's disease and high blood sugar levels (Alzheimer's Association, 2015). Individuals with high blood sugar levels have been shown to have an increase in beta-amyloid protein, a protein that is toxic to brain cells (Alzheimer's Association, 2015).

Forgetfulness is a stressor, especially for older adults who live alone and lack social support; forgetfulness poses problems with safety and medications, adding to the experience of fear and diabetes-related distress. Evaluating for forgetfulness is integral in providing care to older adults with diabetes, and the presence of forgetfulness may explain otherwise inexplicable incidents of hyperglycemia and hypoglycemia. Trouble-shooting techniques and methods for maintaining medication adherence, including the use of wellness coaches, may improve blood sugar control and decrease the frequency of hypoglycemia and worsening complications.

Implications for Nurses and Other Health Care Professionals

Participants experienced the interpersonal relationship with their health care provider as personally disengaged and singularly focused on biological outcomes. Gerontological nurses are in unique positions that allow for interventions on building rapport and demonstrating concern for the whole person, which could increase satisfaction with care and help older adults with diabetes feel safe and valued. Gerontological nurses offer broad sources of care to their patients, which include attention to social support and living situations. Quality relationships with gerontological nurses and other health care professionals, particularly for patients who live alone, carries potential benefit for improving psychosocial outcomes.

Frequent changes of health care providers and the resulting inconsistencies in care were particularly difficult for older adults with T2DM. Gerontological nurses and other health care professionals should be particularly sensitive to transitions in care from one provider to another. Interventions that warrant careful explanations of changes in medications or monitoring regimens would likely decrease diabetes-related distress experienced by many older adults. Accommodating particular difficulties experienced by older adults, such as slower information processing, less acute hearing, and visual limitations, is also important (Lipska et al., 2016; Munshi, 2017).

Older adults are at greater risk for hypoglycemic events due to comorbidities, unpredictable eating patterns, and polypharmacy (Freeman, 2019). Hypoglycemia increases fear, decreases psychological well-being, and increases diabetes-related distress (Nicolucci et al., 2015). It is particularly important for gerontological nurses and other health care professionals to address hypoglycemia with older adults who are prescribed sulfonylureas or insulin. Interventions that include developing an action plan during clinical encounters for avoiding or responding to episodes of hypoglycemia may prevent further episodes and decrease emergency department visits and hospitalizations. Adequate planning for the prevention of hypoglycemia can dramatically reduce fears in older adults and contribute to their overall quality of life.

Some participants were angry that they did not receive adequate attention during the pre-diabetic period. Based on this experience, nurses and other health care professionals have an opportunity to improve communication and avoid illness progression by providing education and support when pre-diabetes is first identified. Because nurses focus on holistic approaches, communication, and education, they are also well-suited to take on the role of wellness coach. Wellness coaches were positive and provided helpful experiences for participants in the current study.

Lack of sensitivity and compassion during health care visits was most notable within the VANCHCS population. Limited encouragement and support offered during these visits left participants feeling hopeless and despondent. Nontherapeutic health care visits were particularly troubling because Veterans as a group were more depressed than community participants. Veterans in the current study served in the Vietnam War and also had posttraumatic stress disorder, which increased their risk for depression (Bullman, Schneiderman, & Gradus, 2019; Gould, Rideaux, Spiria, & Beaudreau, 2015; Stellman, Stellman, & Sommer, 1988). The VANCHCS, and other health agencies that serve Vietnam War Veterans, must be especially sensitive to complex comorbidities when treating diabetes in this population.

Limitations and Implications for Future Research

The current study's primary limitation was the small number of participants, although varying the sites from which participants were recruited likely strengthened the findings about the experiences of older adults with T2DM. The cultural background of participants lacked diversity, but the focus of this study was on age and not ethnicity. Future studies should include the perspectives of health care professionals of older adults with T2DM as well as partners and caregivers. Such studies may provide further illumination and a deeper understanding of the experience of being an older adult with T2DM and diabetes-related distress.

Conclusion

Older adults with T2DM and diabetes-related distress have complex lives and require unique support for disease management. Positive, engaged, therapeutic, and supportive partnerships with nurses and other health care professionals can address the most intense discontent expressed by these individuals. Particular attention to communication limitations of older adults also contributes to satisfaction. Health care professionals who are patient and understanding of the challenges that impact the daily lives of these older adults, especially Veterans, may improve diabetes-related outcomes and psychological well-being and decrease diabetes-related distress in this population.

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Interview Guide

Broad opening question: You have had diabetes for some time now. Could you please tell me what it has been like for you?
Can you tell me about a time recently when your diabetes interfered in your ability to take care of things that are important to you?
Please tell me a story about what happened.
How did that make you feel?
What might you like to happen in that situation?
Looking back at that situation, is there something you might have done differently?
Did you learn something new because of the situation?
Please tell me a time recently when your diabetes altered your capacity to interact with family and friends. Please tell me a story about what happened.
Repeat probes.
Please tell me about a time recently when you had difficulty managing your diabetes in partnership with your health care provider.
Please tell me a story about what happened.
Repeat probes.
Could you describe any feelings in your body that may be due to your diabetes?
  Pain in feet
  Thirst
  Frequent urination
  Numbness
  Excessive sweating
  Blurry vision
  Loose stools
  Shakiness
  Difficulty thinking
  Light-headedness
PHQ-9 will be administered after check-list
Is there anything that you would like to add before we conclude the interview?

Demographic and Clinical Characteristics of Participants (N = 16)

CharacteristicMean (SD) (Range)p Value
Men (n = 7)Women (n = 9)t test
Age (years)68.9 (3.09) (65 to 83)81.5 (3.5) (77 to 88)<0.001
Pill burden12 (6.3) (6 to 25)12 (6.1) (3 to 18)1.000
Years since diagnosis11 (16.1) (2 to 32)17 (18) (1 to 50)0.501
DDS scorea3.8 (0.9) (3 to 5)3.5 (0.6) (3 to 4.58)0.320
PHQ-9 scoreb9.5 (2.1) (0 to 21)4.8 (1.2) (2 to 11)<0.001
n (%)χ2
Marital status0.401
  Married3 (42.9)3 (33.3)
  Divorced4 (57.1)3 (33.3)
  Widowed2 (22.2)
  Single1 (11.1)
Insulin3 (42.9)0.063
Complications
  Cardiovascular2 (28.6)1 (11.1)0.550
  Nephropathy1 (14.3)1 (11.1)1.000
  Neuropathy5 (71.4)2 (22.2)0.126
Ethnicity
  Caucasian58
  Pacific Islander2
  Vietnamese1
Authors

Dr. Hernandez is Graduate, and Dr. Chesla is Professor, Department of Family Health Care Nursing, Dr. Leutwyler is Professor, Dr. Cataldo is Professor and Department Chair, Department of Physiological Nursing, and Dr. Kanaya is Professor, School of Medicine, University of California San Francisco, San Francisco; Dr. Hernandez is also Clinical Nurse Specialist in Diabetes, and Dr. Swislocki is Endocrinologist, Medical Service, Veteran's Affairs Northern California Health Care System, Martinez, California. Dr. Swislocki is also Professor, Division of Endocrinology, Department of Internal Medicine, University of California Davis School of Medicine, Davis, California.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This work was supported by T32 NR07088 Grant for Nursing Research Training in Symptom Management; University of California San Francisco, Dean's Fellowship Grant; Century Club of the University of California, San Francisco; Research and Development Award #00773 from the U.S. Department of Veteran's Affairs (VA). This material is the result of work supported with resources and the use of facilities at the Veterans Health Care Administration clinic in Martinez, California. The contents of this article do not represent the views of the VA or the U.S. government.

Address correspondence to Lenore Hernandez, PhD, RN, CNS, Clinical Nurse Specialist in Diabetes, Medical Service, Veteran's Affairs Northern California Health Care System, 150 Muir Road - Building 19, Martinez, CA 94553; e-mail: Lenore.Hernandez@va.gov.

Received: July 24, 2019
Accepted: October 30, 2019

10.3928/00989134-20200129-05

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