The Impact of Urinary Incontinence on Older Adults and Their Caregivers*
About the Authors
Kevin R. Emmons, DrNP, CRNP, AGPCNP-BC, CWCN
Clinical Assistant Professor
Joanne P. Robinson, PhD, RN, GCNS-BC, FAAN
Dean and Professor
School of Nursing-Camden
Rutgers, The State University of New Jersey
311 N 5th Street, Armitage Hall
Camden, NJ 08102
Kevin R. Emmons, DrNP, CRNP, AGPCNP-BC, CWCN
Joanne P. Robinson, PhD, RN, GCNS-BC, FAAN
Urinary incontinence is a frequent problem among older adults, yet many never seek treatment. Urinary incontinence can lead to unwarranted physical, psychosocial, and economic burdens on both older adults and their caregivers. This paper will review the impact of urinary incontinence on the quality of life of older adults and caregivers. Assessment and care considerations will be addressed.
The Impact of Urinary Incontinence on Older Adults and Their Caregivers
Urinary incontinence (UI), the complaint of any involuntary loss of urine (Abrams et al., 2010), is a well documented problem in the United States and worldwide. The impact of UI extends from cost of care to quality of life. The prevalence of UI is highest among older adults, with some estimates as high as 60% (DuBeau, Kuchel, Johnson II, Palmer, & Wagg, 2010; Griebling, 2009; Ko, Lin, Salmon, & Bron, 2005). Evidence suggests that UI is more prevalent in women up until 80 years of age; thereafter, rates of UI in men and women are similar (Khandelwal & Kistler, 2013).
Despite efforts over the past 20 years to educate health care providers and the public about bladder health, many still believe that UI is a normal part of the aging process. Thus, considerable numbers of older adults with UI never seek or receive treatment (Ko et al., 2005). Doing nothing about UI can exact unnecessary physical, psychosocial, and economic tolls on affected individuals, their loved ones, and their caregivers. This paper reviews: basic types and causes of UI; consequences associated with underreporting and undertreatment; tips for accessing appropriate treatment; assessment of the severity of UI and its impact on quality of life; and commonsense management strategies.
Types and Causes of UI
There are two basic types of UI: acute (transient) and chronic (persistent). Acute UI is characterized by relatively sudden onset and is usually reversible. Clinicians have long used the mnemonic, DIAPPERS (Resnick & Yalla, 1985),to remember the most common causes of acute UI:
- Infection (e.g., urinary tract infection)
- Atrophic urethritis or vaginitis
- Pharmaceuticals (e.g., diuretics, anticholinergics, calcium channel blockers, narcotics, sedatives, alcohol)
- Psychological disorders (especially depression)
- Endocrine disorders (e.g,, heart failure, uncontrolled diabetes)
- Restricted mobility (e.g., hospitalization, environmental barriers, restraints)
- Stool impaction
The search for one or more of the above causes of acute UI is the first step in treating any new onset of involuntary urine loss. Continence typically returns once underlying causes are identified and addressed.
Chronic UI involves persistent problems associated with the storage and/or evacuation of urine. Table 1 describes types of chronic UI that are commonly seen in older adults, including: urge, stress, mixed, overflow, and functional UI. (Griebling, 2009; Holroyd-Leduc, Tannenbaum, Thorpe, & Straus, 2008).
Consequences of Underreporting and Undertreatment
UI is notorious for its negative effects on physical and psychosocial dimensions of health-related quality of life. (Ko et al., 2005). Those affected by multiple types of UI are at greatest risk. For example, women who experience mixed UI report more than double the impact on quality of life compared to those with stress UI alone (Frick et al., 2009). In older women, however, evidence suggests that quality of life is affected more by symptom severity than by type of UI (Barentsen et al., 2012). In one study, the impact of moderate UI was similar to that of diabetes, hypertension or cancer, and the impact of severe UI was similar to that of a heart attack or stroke (Robertson et al., 2007). Thus, the severity of UI proportionately affects quality of life and the potential for negative physical and psychosocial consequences cannot be underestimated.
Physical Consequences. Physical consequences of UI are both direct and indirect. UI is an early indicator of frailty in older adults (DuBeau et al., 2010). UI is associated with an increase in functional decline and nursing home placement, and a two-fold increase in falls, (Goode, Burgio, Richter, & Markland, 2010). Recurrent exposure of skin to urine increases the risk for developing dermatitis, skin infections, fungus, itching, and pressure ulcers (Farage, Miller, Berardesca, & Maibach, 2007). While UI alone may not cause pain, it can exacerbate and intensify the perception of pain related to other conditions (Ko et al., 2005). Physical consequences of UI often trigger psychosocial distress in the form of anxiety, embarrassment, social withdrawal, and depression. For example, older adults with UI often restrict their participation in social activities due to concerns about odor, failure of absorbent products, or discomfort related to skin issues. As social withdrawal progresses, depression becomes a significant risk.
Psychosocial Consequences. Evidence suggests that older adults with UI have a negative view of their overall health status (Ko et al., 2005). Depression, loss of interest, and social isolation are common (Huang et al., 2006; Ko et al., 2005). One study found that emotional well being, particularly anxiety, frustration, and embarrassment, were common among older adults with UI (Teunissen, Van Den Bosch, Van Weel, & Lagro-Janssen, 2006). For many, fear of accidents becomes a barrier to everyday living. It is common for people with UI to plan for frequent bathroom stops when they go out; if there is uncertainty about the availability of bathroom facilities, trips are often abandoned. UI is also known to impair quality of life related to sexual function (Sen et al., 2006), which affects both the individual with UI and their spouse/partner.
Caregiver Consequences. Although not widely studied, the literature suggests that UI has a substantial negative impact on caregivers. In one study, the time and cost of providing care in the home setting were significantly greater for older adults with UI than for their continent counterparts (Langa, Fultz, Saint, Kabeto, & Herzog, 2002). Another study found that caregivers reported problems with role change, sleeping, finances, intimacy, and social isolation, as well as negative emotions such as embarrassment (Cassels & Watt, 2003). Finally, the burden of caring for older adults with UI may be a risk factor for nursing home placement (DuBeau et al., 2010), generally a dreaded and distressing outcome for all parties and often an intense source of guilt for caregivers.
Improving quality of life for older adults with UI requires working with a qualified healthcare professional to eliminate or mitigate symptoms. Doing less is a missed opportunity for symptom relief, bladder health, and optimum quality of life. Care that is improvised without advice and oversight from a qualified professional can lead to complications.
Overcoming popular misconceptions about UI among older adults, their families, and their caregivers is a crucial initial step in the process of seeking treatment. For example, women often view UI as more of a hygiene issue than a legitimate medical problem and subsequently dismiss the idea of treatment (Huang et al., 2006). Finding the right healthcare provider is the next step. Physicians, advanced practice nurses, or physical therapists that offer conservative treatment for UI (i.e., behavioral and pharmacologic treatments) are good first-line providers. High marks go to the National Association for Continence for their excellent website dedicated to connecting consumers to geographically convenient clinical experts (https://www.nafc.org/home/find-an-expert/).
Assessing UI Severity and Impact on Quality of Life
Assessing the severity of UI and its impact on quality of life is a critical component of the work-up of every new patient with UI. Fortunately, a number of tools are available to help clinicians quantify the symptom and quality of life burdens imposed by UI. The numerical benchmarks provided by these tools are helpful to both clinicians and patients as a way to clarify baseline status and then detect changes over time as treatment progresses. Tools can also help with identification of specific symptoms and quality of life issues that can be targeted for intervention, such as improving participation in social activities or learning problem-oriented coping skills to reduce worry and frustration over accidents.
Most clinicians use tools developed for research purposes since they offer reasonable assurance of dependability and accuracy. Although a variety of tools for measuring UI severity and impact on quality of life are available, all focus on individuals with UI rather than caregivers.
Selected Tools. UI severity can be measured directly through use of a pad test, or indirectly through use of a questionnaire. A pad test involves calculating the quantity of urine lost over a 24-hour period from the weight of absorbent pads worn by the individual over that period. Wearing time is set at two hours and pad weights are recorded before and after wearing. The difference between dry and wet pad weights corresponds to the amount of urine lost in milliliters. While pad tests are a good option for measuring UI when precision is desired or when completion of a questionnaire is challenging, they can be burdensome for both individuals with UI and their caregivers. For this reason, clinicians often substitute self-reported 24-hour pad count for the pad test. In doing so, what is gained in feasibility must be balanced with what is lost in dependability and accuracy since pad use can vary considerably relative to circumstances such as the availability and cost of absorbent products, amount of leakage, caregiver accessibility, and individual preferences.
UI severity can also be measured indirectly through use of a questionnaire. Completion of a questionnaire requires intact cognition since most discourage completion by proxy (e.g., caregiver, spouse, friend). The Urogenital Distress Inventory-6 (UDI-6) (Uebersax, Wyman, Shumaker, & McClish, 1995) is the instrument of choice for measuring the presence and perceived severity of lower urinary tract symptoms, including UI (Dowling-Castronovo, 2013). As shown in Table 2, the tool consists of six items that correspond to common lower urinary tract symptoms. Ratings are requested concerning the presence and associated bother of each symptom on a scale of 0 (no bother) to 3 (greatly bothersome). The UDI-6 is sensitive to change and can assess the efficacy of treatment and management strategies. The questionnaire and scoring directions are readily available online for use in clinical practice at https://consultgerirn.org/uploads/File/trythis/try_this_11_2.pdf.
Quality of life is a subjective notion; as such, it is always measured by self-report. The Incontinence Impact Questionnaire-7 (IIQ-7) (Shumaker, Wyman, Uebersax, McClish, & Fantl, 1994) is the instrument of choice for measuring the specific impact of UI on quality of life (Dowling-Castronovo, 2013). As shown in Table 3, the tool consists of seven items that correspond to activities in four domains of quality of life: physical activity, travel, emotional health, and social activities. Ratings are requested concerning the impact of UI on each activity on a scale of 0 (not at all) to 3 (greatly). Evidence supports the validity, reliability, and sensitivity of the IIQ-7. The IIQ-7 and UDI-6 are frequently administered concurrently. Scoring and access is the same for both, which facilitates seamless implementation.
Commonsense Management Strategies
A variety of behavioral and pharmacologic interventions are available to treat UI in older adults. All are conservative approaches that are best administered by qualified health professionals with expertise in the treatment and management of UI, and all offer an excellent chance of eliminating or significantly mitigating leakage. If desired results are not achieved through behavioral and pharmacologic interventions, a host of minimally invasive treatments are available and accessible through the continence health professional, either directly or by referral.
Meanwhile, prevention of accidents, particularly in public, is an important priority for older adults with UI. Appropriate absorbent products, awareness of bathroom facilities, easy-access clothing, spare clothing, and organization of fluid intake and activities around a planned voiding schedule are all commonsense strategies that can be discussed with the continence health professional and incorporated into a comprehensive plan of care (Teunissen et al., 2006). Caregivers report that practical information, moderate priced supplies, respite, and financial and social support would help to reduce the burden associated with caring for a loved one with UI (Cassels & Watt, 2003).
UI is not a normal part of aging; however older adults are prone to the development of both acute and chronic UI. UI is often underrecognized as a medical problem and undertreated by health care providers. Consequently, UI can have a profound impact on the quality of life of older adults and their caregivers. Physical and psychosocial consequences of untreated UI are common. Recognizing symptoms and seeking appropriate treatment are necessary steps toward improving quality of life.