SCI Forum Report & Video
Aging with a Spinal Cord Injury
Presented on June 9, 2009, by Rina Reyes, MD, Medical Director, UW Medicine SCI Rehabilitation Program and Assistant Professor, UW Department of Rehabilitation Medicine, and Ivan Molton, PhD, Clinical Psychologist and Acting Assistant Professor, UW Department of Rehabilitation Medicine. Read the report or watch the video from this page.
Don't miss this additional content on our site about aging with SCI:
In the video "Everybody's Doing It! Aging with SCI," five individuals with SCI—who, taken together, have been living with SCI for 189 years— discuss their experiences and share their methods for coping with changes and staying healthy and positive as they age.
Presentation time 81 minutes. After watching the video, please complete our two-minute survey.
You can also watch this video on YouTube.
For a complete list of our videos, click here.
Aging with a Spinal Cord Injury
- Understanding and Managing Physical Changes, by Rina Reyes, MD.
- Life Expectancy
- Aging with Disability
- Health Risks and Aging in SCI
- Cardiovascular System
- Musculoskeletal System
- Respiratory System
- Gastrointestinal System
- Urinary System
- Nervous System
- Changing Equipment Needs
- Women Aging with SCI
- Your Health Care Team
- Social and Psychological Factors Associated with Aging with SCI, by Ivan Molton, PhD
By Rina Reyes, MD
Over the past few decades, life expectancy in the general population has increased significantly. In the SCI population, this increase has been even more dramatic. In 1940, average life expectancy after SCI was only 18 months. By 1998, persons with SCI had an estimated life expectancy that showed greater resemblance to that of the general population: for those with complete tetraplegia (quadriplegia); life expectancy was 70 percent of the life expectancy of the general population; for those with complete paraplegia it was 86 percent; and for anyone with significant motor preservation it was about 92 percent. This increased life expectancy is not only due to better survival from initial injuries, but also due to improved ability to recognize and treat secondary complications such as bladder infections and pneumonia.
As people with SCI are living longer, they are likely to experience many of the chronic health problems that arise in the general population with aging. The goals for aging with SCI are the same as for everyone else: to minimize the impact of aging and to maintain overall health, independence and life satisfaction.
There is ongoing debate about the effect of disability on aging, and vice versa. Pentland (2002) coined the phrase “double jeopardy” or “doubly disadvantaged” to describe how those with existing disabilities may age prematurely. On the other hand, age has been called a “leveler” in the sense that persons with disabilities have learned how to adapt to major physical changes, whereas people without disabilities have not and therefore may struggle more when confronting the physical decline and functional changes associated with aging. Conversely, coping strategies may have been stretched to the limit after a lifetime of disability so that the increased demands of aging tip the balance toward greater functional decline (Trieschmann). Researchers have also theorized that there are accelerated aging affects among those who have spinal cord injuries.
The primary causes of death in the SCI population are respiratory disease, diseases of the urinary system and heart disease, in that order. (By comparison, the top causes of death in the general population are heart disease, followed by cancer and stroke.) The SCI population has a higher incidence of the following conditions (Weaver and LaVela):
- high blood pressure
- cholesterol disorders
- infections, primarily pneumonia, urinary tract infections and complications from pressure sores
- bladder cancer
It is important to focus preventive care on the high risk conditions specific to the SCI population.
Certain studies have revealed that coronary artery disease (CAD) is a contributing factor in 22.4% of deaths in SCI (DeVivo, 1989) and that individuals with SCI are twice as likely to die if they have a cardiovascular event (Kocina).
Several risk factors for CAD occur more frequently in individuals with SCI: lipid disorders, diabetes, obesity, lack of physical activity, early changes in body composition that result in a higher percentage of body fat, and occasionally high blood pressure. Furthermore, CAD may be harder to diagnose in the SCI population due to lack of sensory symptoms.
- Lipid Disorders: HDL (the “good” cholesterol) is lower and LDL (the “bad” cholesterol) higher in people with SCI, particularly in persons with higher injury levels.
- Diabetes/glucose intolerance is more common in the SCI population (Bauman 1994). Studies in the VA found that among those with SCI and diabetes, 25% already had eye problems from their diabetes, and 41% had foot ulcers requiring more than four weeks of healing time (Weaver and LaVela). This suggests that people with SCI who have diabetes should be monitored more closely by their physicians than someone without SCI.
- Obesity or overweight syndrome. About two-thirds of persons with SCI are overweight. This results primarily from atrophy of metabolically active skeletal muscle and an inability to exercise to capacity. They have a higher percentage of fat than lean muscle, so that the body doesn’t consume as much energy at rest as it would if the limbs were not paralyzed. Weight gain affects the fit of equipment, general mobility and the ability to perform safe transfers. In addition, it is more difficult to lose weight once it's been gained.
There are many well-documented benefits to exercising, including improving lipid profile, reducing the incidence of diabetes, increasing lean muscle mass (which in turn enhances fat metabolism) and improving depression and quality of life.
The American College of Sports Medicine (ACSM) recommends that people with SCI exercise three to five times per week for 20 to 60 minutes of moderate-intensity exercise per session. Moderate intensity is defined as 50 to 80 percent of the peak heart rate. Unfortunately, we don't know what the peak heart rate should be for individuals with SCI. For those with high level injuries, where they may not have as good regulation of their heart function, the peak heart rate might be artificially lower. In the general population peak heart rate is estimated at 220 minus your age. Exercise intensity can be determined in the SCI population from assessments using arm ergometry, or can be estimated using the Borg Rate of Perceived Exertion Scale (learn about this at http://www.cdc.gov/physicalactivity/everyone/measuring/exertion.html).
Different ways to achieve cardiopulmonary exercise includes arm crank ergometry, wheelchair propulsion, swimming, wheelchair sports, walking with devices, seated aerobics and electrical stimulation.
More information about exercise and disability can be found on the National Center on Physical Activity and Disability (NCPAD) website at http://www.ncpad.org/.
The goal of any exercise activity is to improve fitness and strength without resulting in injury.
- Cushion surfaces to make sure that you don't get skin breakdown from transferring to an exercise bench or an incline.
- Avoid overuse injuries by varying which muscle groups you exercise in a session, limiting the amount of repetitions of each muscle group, and working with your medical provider or a trainer to determine the safe amount of resistance for strength exercises.
- Use correct positioning to avoid falls or fractures, particularly if you're using gym equipment that is intended for the general population. Get assistance as necessary for positioning and set up.
- If possible, work with fitness professionals who are trained in designing and implementing fitness regimens for individuals with disabilities, such as a ACSM/NCPAD-certified inclusive fitness trainer (CIFT).
Strategies to reduce cardiovascular risk
- Your health care provider should consider at least yearly monitoring for modifiable risk factors associated with heart disease. These include blood pressure; cholesterol profiles; glucose tolerance or serum blood sugars; diet and weight; tobacco use; activity level; alcohol use; and medications that might contribute to cardiovascular risk.
- Treatments and plans must be individualized for you.
Spinal cord injury increases your risk for shoulder dysfunction, early degenerative arthritis and osteoporosis.
Pain from overuse syndrome, especially the upper limb (shoulder, arm, wrist, hand)
- At least 50 percent of the SCI population have upper limb pain of some kind. It is more common and severe in older individuals and increases with time since injury.
- Activities that commonly contribute to overuse: transfers; wheelchair pushing; pressure releases; activities that require sustained arm positions above-shoulder level; and crutch walking in individuals with incomplete SCI.
- Often, by the time shoulder pain is severe enough to cause dysfunction, it may be too late to reverse the underlying process leading to the problem, and the functional losses associated with it may become permanent. It is critical, therefore, to consider joint and limb preservation strategies even in the initial phases of rehabilitation training. For information, see Preservation of Upper Limb Function Following Spinal Cord Injury: A Clinical Practice Guideline for Health-care Professionals, Consortium on Spinal Cord Medicine (PVA, 2005). For a copy, contact the PVA: 800-555-9140; email@example.com; http://www.pva.org.
Bone loss and osteoporosis
- Bone loss starts immediately following the onset of SCI and continues for at least 12 to 16 months, then it plateaus.
- Bone loss increases the risk for fractures, and this risk continues to increase over time.
- Modifiable risk factors include caffeine intake, tobacco use, alcohol use, and nutritional factors such as calcium intake and vitamin D levels.
- Women with SCI are at increased risk as they age because of post-menopause hormonal changes.
- We still do not have any treatment strategies that have been clearly proven to be effective for osteoporosis in the SCI population. Treatment for osteoporosis is controversial in the general population and even more so for those with SCI. Seek consultation from someone who specializes in osteoporosis after SCI.
- See the SCI Forum report and video on Osteoporosis in SCI.
Preserving musculoskeletal health
- Avoid overuse: we need to balance the idea of “use it or lose it” with the idea of conservation and preservation.
- Be aware of your particular risk for fractures and what symptoms can present that may not seem like fractures. Even routine activities that are not associated with trauma, such as range of motion, can result in fractures in someone whose bone density is very low or who is many years past injury. Fracture symptoms may include swelling, bruising and warmth of the fractured extremity, but not necessarily a visible bony deformity. It is important to have a high level of suspicion for fracture, and get it evaluated and treated appropriately. This includes consultation with a rehab physician who may provide considerations and advice to the orthopedic surgeon regarding management of fractures after SCI.
- Use proper positioning and body mechanics to minimize damage to the upper limb.
- Get an individualized exercise program from your rehab physician to balance the shoulder and maximize your ability to use that shoulder safely for the long-term.
- The role or potential risk/benefit ratio of shoulder surgery for certain shoulder conditions following longstanding SCI may be controversial. Consultation with your rehab provider and an orthopedic surgeon experienced in the treatment of individuals with SCI is advised. Be aware that there could be a very long period of rehabilitation after surgery that lasts months and may require additional help and a change in mobility equipment. Careful planning for any type of surgical intervention is crucial.
- While resting an upper limb is the usual treatment for shoulder problems in the non-SCI population, it is not realistic for a manual wheelchair user. If feasible, we recommend activity modification rather than complete rest.
Respiratory disorders are the leading cause of death after SCI.
Everyone loses a little respiratory function over time. There's a gradual age-related decline in our pulmonary capacity due to loss of lung elasticity, decreased number of alveoli (the smallest unit of our respiratory tree), and reduced vital capacity (the ability to take a deep breath voluntarily).
Individuals with all levels of SCI are at risk for respiratory dysfunction. While the diaphragm and chest muscles receive their nerve supply from the cervical area of the spine, injury to the thoracic area impairs the abdominal muscles, which help with forceful expiration and cough to effectively expel secretions.
Types of SCI-related respiratory dysfunction.
- Ventilatory failure from reduced ability to take deep breaths. This is worsened by tobacco use.
- Pneumonia, due to poor secretion management or atelectasis (lungs can’t inflate fully). The death rate from pneumonia is much higher in the SCI population (15%) than in the general population (2.7%). A pneumococcal vaccination is recommended for all people with SCI every 5 to 10 years, or at the discretion of their primary care provider or pulmonologist.
- Sleep disordered breathing or sleep apnea. More common in SCI than the general population, sleep apnea can have dangerous consequences: daytime sleepiness, which can increase the rate of motor vehicle crashes; cardiovascular complications, such as high blood pressure and arrhythmias; problems with wound healing; and even cardiac death.
Managing the respiratory system
- Learn a variety of different strategies to manage your secretions. Some individuals use equipment or manually assisted cough techniques.
- Get influenza and pneumococcal vaccines.
- Quit smoking!
- Learn the warning signs of poor ventilation: unexplained shortness of breath, rapid breathing, daytime drowsiness or fatigability, fluctuating alertness, more dramatic changes in breathing with sitting versus laying (for some, it may be easier to take deep breaths when laying than upright), and declining vital capacity. These may be signs of impending respiratory failure and warrant evaluation by a pulmonary specialist to see if you need additional assisted ventilation or supplemental oxygen.
- For more information, read the SCI Forum report "Common Respiratory Problems in SCI."
Normal consequences of aging on the gastrointestinal system that lead to increased constipation and hard stools:
- Decline in gut motility (especially colon and rectum).
- Decreased acid secretion.
- Increased water absorption from colon.
This means the problems with constipation—already common in SCI—may worsen. If constipation, distention or incontinence start to increase as you age, follow these guidelines:
- Implement and maintain a daily or every-other-day program.
- Avoid chronic laxative use.
- Make sure diet and fluid intake are adequate.
- Keep as active as possible.
- Consider colostomy if incontinence or constipation becomes excessive.
- Treat hemorrhoids.
While people with SCI do not have a higher rate of colorectal cancers than the general population, some of the early warning symptoms may go undetected due to lack of sensation. Therefore, it is advisable to strictly adhere to the recommended screening exams, even though the preparation for and logistics of the exam may be challenging.
For more information about bowel management, see our Staying Healthy after a Spinal Cord Injury pamphlets.
Changes to the urinary system that occur as part of the normal aging process include:
- Less storage capacity, so the bladder doesn’t hold as much urine, requiring more frequent trips to the bathroom.
- In women, reduced storage ability due to weakening of the urethral opening (called "urethral incompetence"), which can cause incontinence.
- Increase in involuntary bladder contractions—that "urge to go."
- Increased residual bladder volumes, even after voiding. This is particularly true in men as with the onset of prostate disease.
- Progressive decline in kidney function after the age of 40 or 50. This may be exacerbated in someone who already has pre-existing kidney dysfunction due to urinary tract issues.
- Increased risk for urinary tract infections after age 60.
Since the risk for urinary tract infections and stones is already higher for the SCI population, the risk for kidney dysfunction increases with age. This is why we recommend upper urinary tract surveillance every year. Although previously the leading cause of death after SCI, genitourinary complications now represent only 2.3% of the deaths in this population because of active surveillance and appropriate treatment of urinary disease such as infections.
For those who have been using chronic indwelling or Foley catheters for many years, there is a slightly increased risk for bladder cancer, particularly among smokers. Preliminary studies suggest that there is no increased risk for developing prostate cancer among men with SCI.
- Signs and symptoms of urinary tract infection may be different as one ages. For example, your primary symptom may be confusion and lethargy rather than the typical urinary changes.
- Regular cystoscopy to screen for bladder cancer is recommended for people who have used a chronic indwelling Foley catheter for more than eight to 10 years. In this procedure, a urologist puts a small tube with a camera through the urethra into the bladder to inspect the surface of the bladder for any suspicious lesions.
- Evaluate bladder program annually to minimize the frequency of urinary tract infections. Too many or an increase in the frequency of UTIs may signal a need to change your method of catheterization. Only rarely should antibiotics be used prophylactically to prevent the onset of infections, since it may contribute to the creation of more resistant bacterial organisms.
- Be vigilant about avoiding overfilling of a leg bag that might cause distention of the bladder and transmit urine back up to the kidneys.
- Women should use the smallest possible catheter size and try to avoid increasing the size of the catheter to prevent more and more urethral incompetence.
- Stop or avoid smoking!
- Yearly upper urinary tract screening for stones and upper tract deterioration. This involves ultrasound or a CT scan of the kidney and lab tests to assess kidney function.
- For more information about bladder management and preventing, recognizing and treating urinary tract infections, see our Staying Healthy after a Spinal Cord Injury pamphlets.
Usual aging is associated with a decrease in strength, reaction time, vibratory sensation, fine motor function, agility, reflexes, and balance. Individuals with SCI may experience the same changes, but are additionally at higher risk for certain nerve entrapment problems, such as carpal tunnel syndrome or compression of the ulnar nerve either at the wrist or elbow. As many as 63 percent of individuals with paraplegia have entrapment neuropathies.
Rehab providers also watch for neurological changes such as any loss of feeling or change in motor strength in areas where you typically have normal strength and sensation, new-onset of autonomic dysreflexia, or changes in blood pressure and spasticity control, as these may signal formation of a cyst at the site of your injury (syringomyelia or syrinx). If you notice any evidence of neurologic deterioration, notify your medical provider. If he or she suspects a syrinx, imaging studies such as an MRI may be requested. Surgery for the cyst may not always be recommended immediately, because the surgical procedure itself can result in certain complications and the long-term effectiveness of procedures such as shunt or drain placement may be questionable. Surgeons may be reluctant to intervene in the formation of the cyst unless there is clear or progressive evidence for motor or other modality loss that negatively impacts your function.
Nerve entrapment such as carpal tunnel syndrome can be treated with relative rest, since it's usually impossible to completely stop using your limb. Splinting, or in some cases proceeding to surgery, may be recommended in an attempt to spare as many of the nerve fibers as possible. Any surgery will require post-surgical activity restrictions, equipment alterations or additional care during the recovery period. For instance, a surgeon may advise a manual wheelchair user who undergoes carpal tunnel release to avoid wheelchair pushing and other heavy hand use for several weeks, which may require temporary use of power mobility or arranging additional help with self-care and transfers.
Several changes that happen to the skin as part of the usual aging process increase the risk for pressure sores in people with SCI:
- Skin becomes thinner and loses elasticity, making it more vulnerable to shear forces that lead to blisters and skin breakdown.
- Decreased circulation reduces blood flow to skin.
- Decreased mobility reduces the opportunity to redistribute blood flow to the weight-bearing areas of the body.
For those who have had chronic pressure sores, there is a risk of developing cellular changes in the wound bed or infections that heal poorly with usual treatment.
Pressure sore prevention:
- Adequate nutrition is key. With adequate nutrition you are not likely to develop pressure sores in the absence of pressure. If you do have a pressure sore, good nutrition is absolutely critical to healing the wound. See the SCI Forum report and video on Nutrition Guidelines for Individuals with SCI.
- Prevent excessive moisture of the skin areas at risk, and follow good hygiene.
- Don’t smoke! Smoking reduces blood flow. Without adequate circulation, pressure sores cannot heal.
- For more information about preventing, recognizing and caring for pressure sores, see the three-part SCI Consumer Information Factsheet on Skin Care and Pressure Sores.
Modification in equipment or new therapies may be required because of changes associated with aging, such as:
- Increased risk for falls, even for those using a wheelchair.
- Loss of strength and endurance.
- Changes in weight.
- Skin changes.
- Upper limb problems that might affect your ability to perform pressure releases or transfers safely.
Manual wheelchair users may at some point need to progress to using power mobility or power assist wheels to preserve upper extremity function. Those who are ambulatory may choose to use a wheelchair as their primary means of mobility if this helps preserve upper limb function.
All equipment should be assessed, including bathroom ADL equipment, seating systems, cushions and mattresses. Therapy interventions may be necessary for shoulder protection and conservation strategies. Energy conservation or work simplification strategies may also be helpful for those who have considerable fatigue.
Women have special health care needs related to reproductive health and hormonal changes. But we also know that women experience pain differently than men do. And this is certainly true after SCI as well. Women are at greater risk for osteoporosis and approach fracture threshold in their bone mineral density faster than men do after SCI. The risk for osteoporosis and bone loss increases as they approach and reach menopause.
For more information, see our SCI Forum report on Women and SCI.
If you have an SCI, your health care team should ideally include a rehab provider who is familiar with SCI. Because rehab physicians cannot possibly keep up with the volume of primary care literature being published for other general medical conditions, regularly seeing a primary care provider is strongly advised as well. You may also need a urologist or a neurological or orthopedic surgeon, depending on what problems arise. For individuals with higher injury levels affecting their respiratory function, a pulmonary physician may be required. The rehab provider is usually in the best position to coordinate all this care, and to provide the team with recommendations or discuss unique considerations related to your injury to optimize your chances of living and aging well with SCI.
Geropsychology is the field of aging and psychological health. When clinicians and researchers talk about older adults, they group them into stages according to the psychological challenges typical of those ages.
- Middle-age (45–60) is a time when people struggle with work productivity. This is a career peak period, when planning for retirement really begins in earnest. Challenges of this period often include raising teenagers, caretaking for parents, divorce and early health problems. This is a really stressful period and is associated with more depression than much older adulthood.
- Young old (60–70) is often the time of empty nest syndrome, retirement (which research tells us is harder on men), financial pressures and some chronic health conditions.
- Middle old (70–80), the demographic shifts because men are dying off and women have longer life expectancy. This leads to a lot of bereavement. For those left behind there is a more serious threat of mortality, decline in physical functioning and threat of cognitive decline, such as dementia and Alzheimer's.
- Oldest old (80 and over): Social isolation can be a big problem; your peers are dying, and your independence may be seriously limited due to mobility impairments, health issues and inability to drive or get about. Cognitive decline is pretty universal at this age. Even if you don't have dementia, your memory and concentration are not what they used to be. You are probably dealing with some chronic health problems, and your own mortality may feel uncomfortably close.
Given the problems and decline associated with aging, we might expect older adults to be more depressed than younger people. The research suggests otherwise, however: only between 1% and 3% of people over age 65 meet the criteria for major depression, compared to about 8% of the general population.
In the nondisabled population, significant depression peaks during adolescence and the early 20s, with another slight spike around middle age. But older adults, those over 65, report better psychological adjustment than any other age group. This also is true for people with physical disabilities like SCI. Most older adults are not depressed.
Aging with SCI generally means more physical limitations and requires more caregiving generally, greater use of adaptive technologies, equipment changes (as from a manual to a power wheelchair), and learning new skills such as new transfer techniques and positioning. In spite of this, older adults with SCI do not tend to become more depressed.
For more information about depression, see our pamphlet Depression and Spinal Cord Injury .
A major study of aging with SCI done by Krause & Broderick (2005) demonstrated that psychological adjustment actually improved over time in people aging with SCI. So even though the older adults with SCI reported more physical limitations, fewer weekly visitors and less satisfaction with health, their emotional well-being was as high or higher than younger people with SCI. Why? Here are some theories:
- Older adults in general make better use of certain coping strategies for managing pain and disability than do younger people.
- Older adults with SCI have developed coping skills from a long experience with disability.
- Older adults appear to have more “acceptance” of disability. This does not mean they give up on making things better, but they develop more realistic expectations.
The biggest predictors of quality-of-life among older adults are the things we would expect: family and friends, activities you enjoy, and feeling productive.
Other factors that impact psychological health for people aging with SCI:
- Age at injury. Acquiring a disability at an early age—16,18, 20—is actually associated with a pretty good adjustment to disability over the life span. Likewise, acquiring a disability later in life—65 or 70— is associated with pretty good adjustment. The toughest time to get hit with a disability seems to be around age 40, when you have a firm identity as a nondisabled person and you are struggling with raising kids, financial stressors, career peak, etc.
- Number of years since injury. This seems to be a proxy for coping experiences, so the longer you have the injury, typically the better your psychological adaptation is to the injury, up to about 30 years. After that, psychological adaptation reaches a plateau.
What are the biggest psychological problems for older adults with SCI?
As physical independence decreases, one's social support network is also getting older. This is the biggest issue that older people with SCI report to us: my body is becoming more challenging and harder to manage, but at the same time my friends who used to be able to give me a hand are getting older and declining.
Unless one is very lucky, finances tend to get tighter in later adulthood. These are basically the same problems as for older adults without a SCI, but the implications are more severe, as when one has to make a shift from using one's friends as a network of support to having to pay professional caregivers to be the network of support. That's a tricky psychological transition for a lot of people.
When we ask older people with SCI to describe their concerns, here's what they talk about,
- Uncertainty about the future, primarily physical and medical uncertainty, including concern about one’s doctor getting older and having to transfer one’s care to someone new.
- Uncertainty about the degree of physical decline and how fast it's going to happen.
- Uncertainty about the cost associated with the physical decline.
- Fear of losing one's independence. And this is really a very big source of anxiety for older adults in general. Whereas most of the older population says “I'm really scared I'll get dementia and lose my independence,” the older SCI population says “I worry my symptoms will become worse and I won't be able to be functionally independent.”
- Pain and fatigue are two symptoms that often increase in older adults with SCI, which can lead to depression and anxiety.
- Social isolation and loneliness. This isn't as big a factor as people think. According to surveys, most older adults are not socially isolated and desperate for conversation. Nevertheless, older adults with SCI are at greater risk for social isolation as they become less able to get out of the house and their friends become sicker and older and can't visit as much.
- Stay socially connected. This can be very challenging, and it requires effort, especially as one's peer network is aging, dying or moving away.
- Stay physically active. This is a big predictor of depression. The level of activity will of course depend on individual abilities and limitations.
- Getting out into the community is an important way to increase well-being.
- Stay engaged in pleasurable activities. Put these activities into your schedule so you don't stop doing the things you like as you age.
- Know when and whom to ask for help. This can be a very difficult thing for people to do in general, but it is important to figure out who can give you emotional support, who can give you tangible support, and how you can ask in a way that makes you still feel empowered.
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