Guide to Long-term Care for Asthma
Asthma is a disease that affects people of all ages. According to the National Heart, Lung, and Blood Institute (NHLBI) 25 million Americans have asthma including 7 million children. In addition, The American Academy of Allergy Asthma & Immunology (AAAAI) notes that it is more common for asthmatic children to have an asthma attack (47.5%) than it is for asthmatic adults (46.6%). Given the seriousness of this disease, long-term care options for those suffering with asthma can be overwhelming. Read on to learn more about your options and the implications of this disease for those needing long-term treatment.
The Allergy and Asthma Foundation of America lists asthma as one of the most common and costly diseases in the U.S. In 2008, one-third of adults with an asthma attack missed work or school for this reason. Persistent asthma attacks were also the reason cited for 59% of children missing school in the same year.
What Is Asthma?
Asthma is a disease that affects the lungs causing the airways to narrow, swell and produce mucus. This can restrict air flow in and out of the lungs and make breathing difficult. The severity of asthma may vary greatly from being a minor annoyance to life threatening. Common asthma symptoms include:
- Shortness of breath
- Tightness or pain in the chest
- Wheezing or whistling when exhaling
- Problems sleeping caused by the symptoms above
- Coughing or wheezing that is made worse when the patient has a cold or flu
- Allergens including dust, pollen, fur, mold
- Irritants including second-hand smoke, air pollution, chemicals, strong odors
- Respiratory illness
- Sulfites in food
- Strong emotion
- Weather and hormonal changes
- Some medications (including aspirin, non-steroidal anti-inflammatory drugs, beta blockers)
When there is a sudden worsening of symptoms, asthma attacks are also referred to as an asthma flare-up or exacerbations. Asthma attacks require prompt treatment to prevent symptoms from worsening which can require hospital visits and become life threatening.
Although there is no cure for asthma, what makes this disease so difficult to treat and understand is that it may disappear on its own or with minimal treatment. Other times, the condition progressively worsens resulting in more frequent symptoms, more difficulty breathing, and the need for more frequent use of inhalers and other medicines.
The University of Maryland Medical Center notes that in approximately 10% of severe asthma cases that are persistent, irreversible damage may occur to the walls of the airways leading to permanent problems with lung function, even in patients who are treated aggressively with medications.
Asthma Long-Term Care Needs
Caring for asthma is a multi-step process that may require medication management, medical visits, and other lifestyle changes.
One of the primary ways asthma is controlled is through medication. Examples include nebulizer medicines (delivered by an electronic device that helps with inhalation of the medication), injectable medications to help prevent reactions to asthma triggers, and hand-held inhalers that can help open the airways as well as different medications taken by mouth.
Some commonly prescribed medications include long-acting inhaled corticosteroids which help reduce general inflammation and swelling in the airways. Fast-acting or quick-relief inhalers are also prescribed for asthma symptoms as needed.
Asthma Long-Term Care Action Plans
It is highly recommended that all people with asthma have a written asthma action plan. An asthma action plan is a document that an individual makes with their healthcare provider which outlines a plan for controlling and managing long-term conditions.
The asthma action plan outlines which medications will be used and when to take them. It also outlines when an individual should contact their health care provider and when they should seek emergency care. An individual and their family may also want to create an emergency action plan for extreme allergic reactions that trigger a severe asthma attack.
Care providers who may be caring for your family member with asthma should know about the asthma action plan including all healthcare professionals and babysitters for children.
Some resources for developing an asthma action plan are available here. These resources include PDF documents of action plans which an individual may download and fill out with their healthcare provider as well as information cards to hand out to primary care providers.
Keeping track of symptoms and triggers is an important way to help with asthma control. It is recommended that individuals with asthma record their symptoms and triggers in a journal. This will in help identifying what triggers aggravate the disease and what medications are working. An ongoing journal will also help identify if symptoms are worsening, staying the same, or improving.
Using a peak flow meter may be part of an individual’s persistent asthma action plan. A peak flow meter is a device that can help record lung function. It shows how well air is moving through the lungs. It is easy to use and requires an individual to simply to blow or exhale on the device in order to obtain a reading.
The readings from a peak flow meter may then help an individual to know which medications to take or when to seek emergency care. A healthcare provider will teach your family member how to use a peak flow meter and understand its readings if this is required to manage their asthma.
Medical Visits And Emergency Care
The asthma journal discussed above will provide valuable information to your family member’s healthcare provider during medical visits to review their asthma. It will also help remind your family member to discuss any questions they may have about their symptoms or medications with their healthcare provider.
The Mayo Clinic states that individuals with asthma should seek medical attention immediately if they experience any of the following signs and symptoms of a serious asthma attack including:
- Severe wheezing or breathlessness (particularly at night or early in the morning)
- Inability to speak more than short phrases due to shortness of breath
- Straining one’s chest muscles to breathe
- Low peak flow meter readings
- No improvement after using a fast-acting (“rescue”) inhaler
Physicians do not fully understand what causes asthma, however, the current theory is that asthma is caused by a combination of genetic factors and environmental asthma triggers. As a result, healthcare providers have identified a number of ways that individuals may reduce the occurrence and severity of asthma symptoms including:
- Avoid known allergens such as dust mites, animal dander, molds, pollen and rodent dust.
- Clean household surfaces and air purifiers regularly.
- Avoid lung irritants such as cigarette smoke, harsh chemicals, and polluted air.
- Get flu shots since respiratory illnesses can make symptoms worse.
- Wash your hands frequently when touching potentially contaminated surfaces.
Effects Of Asthma On Lifestyle
Depending on its severity, asthma may either affect very little of one’s daily activity or it may affect many areas of one’s life,
In individuals with more severe asthma, one major lifestyle change may be the need to closely manage and monitor the effectiveness of medications. It is common for individuals with asthma to have medications that they take daily to help prevent asthma symptoms as well as inhalers for acute attacks.
If your family member is an older adult, a child, or simply someone who forgets to take their medications as prescribed, they may need someone to remind them to take their medications. They may also need to be reminded to carry their medication for acute asthma attacks with them at all times.
Since asthma is a disease that may be made worse by certain triggers as noted earlier, it is also important to avoid things that are known to cause asthma symptoms for your family member.
Perhaps the most stressful part of the condition is the ever-present threat of an exacerbation or asthma flare-up which may require emergency treatment. If your family member has more severe asthma that has required emergency medical treatment in the past, it is important to ensure that they have quick access to medical help if necessary.
It is also recommended that individuals with asthma carry medication information and emergency contact information with them at all times. Individuals with moderate to severe asthma are also strongly encouraged to consider wearing a medical alert wristband or piece of jewelry which may alert emergency personnel to their long-term conditions should they not be able to communicate.
Asthma Support And Resources
Asthma is a disease that requires ongoing education and discipline to manage it well. Regular monitoring of symptoms, identification, and avoidance of triggers, faithful medication administration, and sometimes lifestyle changes are required. Knowing how to access information and support for asthma can help both the individual with asthma and their family feel more in control of this disease.
Below are some resources for individuals and families living with asthma:
Allergy & Asthma Network: This group offers education, outreach, advocacy, and research.
American Academy of Allergy, Asthma & Immunology: This is an educational resource that includes a database of allergists and immunologists. It also provides a live allergy forecast for different U.S. regions.
American Academy of Pediatrics: This site focuses on asthma in children. It offers educational resources and focuses on advocacy and policy development.
American College of Allergy, Asthma & Immunology: This is an educational resource that also helps locate allergists.
American Lung Association: This is the “go-to” site for all lung-related conditions. It also offers community support and support groups.
Asthma and Allergy Foundation of America: This is another online resource that spearheads awareness campaigns and partners with government agencies.
Centers for Disease Control and Prevention: This is government source for information about asthma.
Environmental Protection Agency: This site provides educational resources and can help one manage triggers.
National Heart, Lung, and Blood Institute: This is another asthma education resource.
National Asthma Education and Prevention Program: This is an awareness and advocacy program run by the National Heart, Lung and Blood Institute.
Asthma is a condition that does not usually require constant medical care. With proper medication and asthma management, most individuals with asthma are able to lead very independent lives.
As noted earlier, however, approximately 10% of individuals with severe asthma will go on to develop permanent, irreversible lung damage which may also result in chronic obstructive pulmonary disease (COPD). It is also possible for the two diseases to co-exist independent of one another.
While there are similarities between the two diseases, there are also significant differences. In addition, these diseases are usually treated with different medications. COPD is complex lung disease that may require constant medical care in a long-term treatment setting, particularly as the disease progresses.
If an individual requires long-term medical care as a result of severe lung damage caused by asthma and/or COPD, this can be costly. Fortunately, the programs listed below provide some financial assistance for those with asthma and their families.
Financial Assistance For Children
For families who have a child with asthma, the Social Security Administration (SSA) offers childhood disability benefits through the Supplemental Security Income (SSI) program for those that qualify.
The site states, “the SSI program can provide valuable monthly cash payments to children who are disabled under SSA rules and whose families have little income or resources.”
The SSA takes into account a child’s functioning from disease impairments and impairments from associated treatments and lists asthma medications as a specific example of medications that may have physical effects that limit activities.
You can find contact information for your local SSA office here.
Financial Assistance For Adults
The SSA also assesses adults for eligibility for financial assistance as a result of impaired functioning caused by various respiratory disorders including asthma.
If an adult is significantly affected by asthma in a way that restricts what activities they may be involved in and what jobs they may perform, they may be eligible for financial assistance through the Social Security Disability program. For more details about this program and how to qualify for assistance, please see the information provided here.
Your state may also offer support for individuals living with asthma. For example, some states offer free asthma care programs which help people with self-management and environmental control in the home.
Check with your state’s department of health services to see if these types of programs are available.
Medicare/Medicaid/Children’s Health Insurance Program (CHIP)
You can also look into these government resources to help cover medications for individuals with asthma. For example, Medicare covers nebulizers under Part B.
In addition, Medicaid and the Children’s Health Insurance Program (CHIP), offer low-cost health coverage to help those suffering from respiratory problems.
Asthma is a condition with a fairly good prognosis. However, sometimes life-threatening attacks may occur or the disease may worsen and cause irreversible lung damage.
If an individual’s asthma is moderate to severe, they may want to consider preparing a will as well as establishing a durable power of attorney for finances and/or a durable power of attorney for healthcare. Ensuring these legal matters have been taken care of may provide some peace of mind knowing that one’s choices regarding their finances and health care decisions will be carried out in the event that they cannot make these decisions in the future.
Asthma And Long-Term Care Needs
Having asthma on its own does not usually result in an individual needing to move to long-term care facilities. If your family member with asthma has other chronic conditions such as COPD and/or they are getting older and are struggling to manage their asthma on their own, it may be time to consider long-term care options.
When researching long-term care providers for a family member with asthma, some important questions to ask include:
- What experience do you have caring for residents with asthma?
- How would staff respond if my family member had an asthma attack?
- Are staff able to administer breathing treatments and if so, how is this done?
- Does the facility allow residents to keep short-acting (rescue) inhalers with them at all times?
It would also be important to discuss your family member’s asthma action plan with facility staff to ensure they would be comfortable following it as needed.
Healthcare Providers Of An Asthma Care Team
The care team for an individual with asthma usually consists of several healthcare professionals including the following:
Primary Healthcare Provider
Your family member’s primary healthcare provider will most likely be managing their symptoms and prescribing medications for asthma. This may be a family practice physician, an internist, a nurse practitioner, or a physician’s assistant.
These physicians specialize in treating lungs specifically. If an individual has moderate to severe asthma or other chronic diseases, the primary healthcare provider may refer them to a pulmonologist to assist with better asthma control and lung function.
If an individual’s asthma is caused or made worse by various allergens, they may be referred to an allergist or immunologist for further assessment and asthma management.
Exercise Physiologist/Pulmonary Rehabilitation Specialist
These professionals can help design an exercise program to assist an individual to maintain as active a lifestyle as possible while living with asthma. They can help your family member exercise in a way that is safest for them. They may also be able to help with management of asthma symptoms.
Mental Health Provider
In some individuals, asthma attacks may occur due to emotional stress. Not surprisingly, living with asthma itself may also cause increased stress if it becomes too disruptive to one’s daily life. If your family member is feeling overwhelmed, a mental health provider may be able to help.
Choosing A Healthcare Provider
When looking for a healthcare provider, you will want to be sure they are licensed and certified by the proper licensing boards.
Since asthma may result in sudden trips to the emergency room, check to see which hospitals the healthcare provider admits asthma patients to. Some may have restrictions.
You may also want to ask what experience a healthcare provider has in treating patients with asthma and how many asthma patients they have cared for with asthma. Ask how they prefer to monitor patients with asthma. Also, be sure to ask if they have experience drawing up action plans to control asthma.
Finally, be sure to note how well the healthcare provider answers your questions and how well they convey information since this will be very important to you and your family member when seeking treatment.
Asthma And Long-Term Care FAQs
1. I’m afraid my family member will have an attack if they exercise. Should they limit what type of exercise they do or should they exercise at all?
Encourage regular physical activity and as much of a normal life as possible. Your family member may want to consider consulting with an exercise physiologist or pulmonary rehabilitation specialist to find exercises that are safe for them to perform with asthma.
2. My family member’s attacks have been worse recently. Are their symptoms going to continue getting worse?
Asthma may have periods of worsening symptoms and then get better again for a while. According to the University of Maryland Medical Center, mild to moderate cases of asthma may improve over time and many adults can be free of symptoms. And in some severe cases, symptoms may improve the timing and effectiveness of treatment.
3. I’ve heard asthma is more common than it used to be? Is that true, and if so, what’s causing it?
The number of cases of reported asthma is increasing. In 2009, 1 in 12 people (7% of the population) had asthma in the U.S. whereas 1 in 14 people had asthma in 2001 (8% of the population).
Regarding what causes asthma, one of the leading theories at the moment is that we are just too clean. With all the time that individuals spend indoors and the use of air purifiers, it is thought that children are not being exposed to allergens soon enough which would prompt the immune system early in life to recognize what is harmless and what should trigger a reaction.
Other theories for the increased prevalence of asthma include the increased use of antibiotics, vitamin D deficiency, and increasing levels of obesity. From 2011 to 2014, 8.8% of all adults in the U.S. had asthma, however, that number rose to 11.1% for obese adults. Only 7.1% of adults within an accepted normal weight range had asthma.
4. I’ve seen people get winded after exercise and I’ve felt that way myself. Is that the same as asthma?
There is actually a type of asthma called exercise-induced asthma. This is a limited type of asthma that causes wheezing, coughing and shortness of breath after heavy workouts, usually in cold, dry air. It is most common in children and young adults. Symptoms last about 10 minutes post-workout and then gradually resolve. Exercise-induced asthma does not cause the same longer-term airway irritation that the more traditional form of asthma causes nor does this type of asthma usually require long-term treatment.
5. My family member keeps having attacks at night and it’s getting in the way of their sleep. What can we do?
Asthma attacks that occur at night is called nocturnal asthma. It occurs in up to 75% of people with asthma and is common between 2 and 4 a.m. It is recommended that your family member speaks to their healthcare provider about how to control these attacks with medication.
6. We’re going to the doctor so my family member can get tested for asthma. What can we expect?
The healthcare provider will conduct a physical exam to look for signs such as wheezing or a runny nose. They may do a test called spirometry which tests for lung function. It requires a patient to put a tube into their mouth which they breathe into. The machine attached to this tube measures how much air is passed through the tube when one breathes as well as how quickly one can inhale and exhale. Your family member may also have an allergy test, a chest x-ray, an EKG and other tests to look for other conditions that may mimic asthma.
7. How do we know if asthma symptoms are getting worse and when should we see the doctor?
An individual should seek medical treatment when symptoms begin to occur more often and attacks become more frequent. In addition, if symptoms are troublesome at night and getting in the way of sleep, this is another time when an individual should see their healthcare provider.
If you find your family member is feeling limited in what they can do in terms of activities and/or they are missing work or school because of symptoms, these would also be important reasons to see your healthcare provider. Your family member’s peak flow rate may either be lower during these times or it may be very erratic from day to day. It is also possible that their medications may not be working as well as they used to.
More frequent visits to the emergency room for asthma symptoms are another sign that your family member should be assessed by their healthcare provider.
8. How can we prevent an asthma attack?
It is important to work closely with your doctor to come up with an appropriate treatment plan as well as an asthma action plan. This plan will likely include a variety of medications which your family member may need assistance or reminders to take. One of the best ways to prevent an asthma attack is to take all asthma medications faithfully as prescribed.
Your family member may also need to identify and avoid triggers that cause their asthma attacks such as second-hand smoke or pollen. It is also important to stay up-to-date on all allergy injections and to take allergy medications as prescribed.
Most importantly, your family member should have their fast-acting (rescue) inhaler with them at all times (if prescribed) and they should not hesitate to use this medication as they have been taught by their healthcare provider.
9. Can work make my family member’s asthma worse? Is it possible they got asthma because of where they work?
In 2015, approximately 1.9 million cases of asthma in adults (15.7%) were work-related. Work-related asthma refers to asthma that is associated with a substance or condition in the workplace that triggers the disease. Work-related asthma tends to be highest among individuals between 45-64 years of age.
Work-related asthma falls into 2 different categories: occupational asthma (asthma caused by specific agents in the workplace) and work-exacerbated asthma (asthma symptoms are worse when an individual is at work).
If you suspect your family member’s asthma is work-related, you can find Occupational Safety and Health Administration (OSHA) resources here.
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
Leona J. Werezak RN, BSN, MN is a registered nurse and adjunct nursing professor. She has 24 years experience working in a variety of healthcare settings including such remote locations as the Arctic Circle. Her research in early stage dementia was published in the Canadian Journal of Nursing Research and re-published in their 40th anniversary issue which showcased exceptional research published since the journal began. Her work in dementia care has also been published in the Journal of Gerontological Nursing. She currently teaches surgical nursing care on a thoracic/vascular unit to baccalaureate nursing students. Her clinical work with nursing students involves extensive work with older adults who have multiple chronic health conditions.