Anemia is a deficiency in red blood cells or hemoglobin (an important protein in red blood cells). According to the World Health Organization, it affected 1/4 of the world’s population between 1993 and 2005. Since anemia affects how much oxygen goes around the body, untreated anemia can have serious effects. Too little oxygen in the body can damage organs, particularly the heart.
If your loved one is living with anemia, there are some things you should know about your long-term care options, ways to pay for care, physical and emotional effects of anemia, and additional resources for more information.
Anemia symptoms and treatments
Anemia can manifest as a number of symptoms:
- Shortness of breath
- Pounding or “whooshing” sound in the ears
- Cold hands or feet/feeling cold
- Pale or yellow skin
- Chest pain
- Fast or irregular heartbeat
- Bleeding problems
- Problems concentrating
- Brittle nails
- Pica (craving ice, very cold drinks or non-edible items like dirt or paper)
There are different types of anemia, many of which overlap with other diseases. They are:
- Iron deficiency anemia: This is simply when someone doesn’t have enough iron in the body. It can happen because of blood loss or poor absorption of iron. Pregnancy and childbirth can cause this type of anemia, as these conditions take up a lot of iron.
- Vitamin-deficiency anemia: Here’s where someone has low levels of vitamin B12 or folate, which can come from a poor diet. Pernicious anemia happens when B12 cannot be absorbed in the intestines. Folate and B12 play a pivotal role in the formation of new red blood cells.
- Sickle cell anemia: This inherited disorder is where the hemoglobin protein itself is abnormal. The red blood cells are then too rigid to move about the body, and they clog circulation.
- Hemolytic anemia: Here, the red blood cells are broken down in the spleen or bloodstream. This can happen because of a variety of other health conditions like leaky heart valves, aneurysms, infections or autoimmune diseases, as a few examples.
- Aplastic anemia: This is a bone marrow failure condition in which the bone marrow does not make enough blood cells.
- Anemia from other diseases: Diseases that affect the body’s ability to make red blood cells can also cause anemia. Examples are kidney disease and chemotherapy from cancer treatments.
Treatments vary wildly depending on what type of anemia your loved one has. Since iron-deficiency anemia can come from blood loss, the doctor will check if your loved one is losing blood from the stomach or bowels. Nutritional deficiencies may mean dietary adjustments and supplements. An underlying chronic disease may need treatment. Other conditions may require drugs to suppress the immune system, heart surgery or antibiotics. Aplastic anemia could require medications, a bone marrow transplant or blood transfusions.
Living with anemia
Given that anemia has so many causes and could require so many different treatments, it’s hard to give one overview of what it’s like to live with a loved one who has anemia and is undergoing treatments.
However, the American Society of Hematology does state that eating healthy foods can help your loved one (and yourself) avoid iron and vitamin deficiency anemia. Look for foods that are high in iron, like beef, dark green leafy vegetables, nuts and dried fruit. For folic acid, look for citrus juices, legumes, fortified cereals and dark green leafy vegetables. Meat and dairy have B12. You may also want to look into a daily multivitamin.
You may have to help your loved one with anemia manage certain medications to help underlying causes, as well. For instance, if it turns out that an infection is causing the anemia, that will mean a round of antibiotics.
A common medicine is an erythropoiesis-stimulating agent, most commonly given in the form of injections. These tell the bone marrow to make more red blood cells. However, risks involve blood clots.
Perhaps the most common and invasive treatment is a blood transfusion. New blood is directly pumped into a vein in the arm by a narrow tube. The procedure is typically safe, and complications are usually mild. However, there are rare cases where the body rejects and attacks the new blood cells.
Blood transfusions are performed in a hospital, clinic or doctor’s office and can last for one to four hours. Check-ups and blood testing can tell how the body is responding to the blood transfusion. Recovery time is minimal, but the family may need to make time to take the loved one with anemia to appointments.
For extreme cases of anemia caused by bone marrow problems, a patient may undergo a risky procedure called a bone marrow or stem cell transplant. Treatment and recovery can take several weeks, and patients require a lot of support from family as they manage many medications and possibly the stress of the process.
Since lifestyle changes can run the gamut, based on what type of anemia your loved one has and what type of treatments they need, below are some additional resources that can help you navigate your loved one’s specific condition.
Anemia organizations and resources
The American Society of Hematology: This is the go-to portal for blood disorders. The group handles research, education, and advocacy, and there are meetings to attend.
Aplastic Anemia and MDS International Foundation: This is a resource for people whose anemia comes from bone marrow failure. It has educational resources on diseases and treatments, conferences, courses and support networks.
The Bone Marrow Foundation: This group offers support and financial assistance to those undergoing bone marrow/stem cell transplants.
Diamond Blackfan Anemia Foundation: Diamond Blackfan Anemia is a type of inherited bone disorder where the bone marrow does not produce red blood cells. It’s different from other bone marrow anemias in that it’s a ribosomal protein disease. This group offers support, funding, research, and education for this type of anemia.
Fanconi Anemia Research Fund: If you’d like to support the research side of the cause, check out this research fund. It also offers family support services.
Iron Disorders Institute: This resource covers a range of iron-related issues, including anemia and various disorders that can cause anemia.
The National Heart, Lung and Blood Institute: This is a good resource for education on the topic. There are even ways to participate in clinical trials.
Sickle Cell Disease Association of America: Here’s your portal for all things Sickle Cell Anemia. The group offers advocacy, walks, and awareness.
Thalassaemia International Federation: This group has advocacy, education, and events. Thalassemia is a genetic disorder that affects the hemoglobin protein in the red blood cells. Some cases are transfusion-dependent, and some are not.
The U.S. National Library of Medicine: If you’re looking for the latest in educational resources and studies, you’ll want to check out this site.
Caring for a loved one with anemia
If you’re caring for a loved one with anemia, there are several things you can do to support them in a healthy lifestyle.
The first care point is to watch for the symptoms in our guide to qualified long-term care planning for anemia mentioned above, especially feelings of fatigue, weakness, dizziness, and shortness of breath. Those may mean the anemia condition is not under control and that it’s time to call a doctor.
Even with controlling for symptoms, some may persist. The symptoms of anemia, especially weakness and dizziness, can lead to increased falls, especially if your loved one with anemia is older.
You may want to make sure your loved one has an environment where falls will be less common. Make sure walkways are kept clear, and pick up any rugs; you may want to install handrails, and adjustments may need to be made to the tub to prevent slips like non-slip shower mats.
You can also help your loved one with anemia keep a more healthy diet with strong iron, B12, and folate sources. That may mean fixing meals that are high in these nutrients and/or helping monitor supplements. Anemia has a fairly good prognosis when treated. Untreated anemia can lead to severe problems like intense fatigue, pregnancy complications, and heart problems.
You may also have to keep time open for taking your loved one to doctor’s appointments or treatments and prepare questions for these visits.
Underlying conditions, like sickle cell disease, can cause severe complications like stroke or lung damage. And as mentioned above, treatments like blood transfusions and erythropoiesis-stimulating agents come with their own risks. Depending on your loved one’s case of anemia, you may want to look into financial and legal considerations. Below our guide to long-term care options for anemia will go into those financial and legal issues, as well as finding care for your loved one with anemia.
Financial and legal options
With how serious anemia and the diseases that cause it can be, you and your loved one may need some financial help and legal preparations.
Social Security Disability
If a debilitating disorder like cancer causes your loved one’s anemia, you may want to check with social security to see if your loved one qualifies for social security benefits. Social security is divided into Social Security Disability Insurance, which covers people after they have worked long enough and paid social security taxes, and Supplemental Security Income, which pays based on financial need. You can learn more here, including about social security’s definition of disability.
There are actually groups that can help financially in the event that a bone marrow transplant is needed. One such group is BMTinfonet.org, which gives grants to help pay for living expenses while undergoing bone marrow transplants. Currently, the group can offer $100-300. You can learn more here.
If your loved one is over 65 years of age, they may qualify for federal Medicare benefits. Medicare can cover treatments for anemia. For instance, Medicare Part A covers blood received as a hospital inpatient, and Part B covers blood received as an outpatient.
The state/federal program Medicaid, open to all ages, may be able to cover treatment and doctor’s visits based on financial need.
Seeing that anemia can be caused by life-threatening disorders, such as cancer or blood disorders, you may want to help your loved one with anemia set up a living will. These are sometimes called an advance directive or a patient advocate designation. A living will outlines your loved one’s wishes for medical treatment while still alive. It acts in the case that your loved one is incapacitated and cannot make those decisions for themselves.
The last will and testament outlines how your loved one wants their property distributed after death and names a person or persons who manage the estate until the final distribution (called an executor). You can learn more about them here.
Power of attorney
There are two types of power of attorney you may want to consider. The durable power of attorney for health care puts someone in charge so they can make medical decisions in the case that the loved one is incapacitated. A living will cannot anticipate every circumstance, so that is when the power of attorney for healthcare steps in.
There is also the durable financial power of attorney, a person designated to manage the financial aspects in the case that your loved one is unable to manage it themselves due to incapacitation.
You also may want to look into a variety of trusts. Trusts allow a third party to hold assets on behalf of the beneficiaries (or people receiving the assets). Trusts can help specify when the assets go to the beneficiaries.
One of the benefits is that assets may actually be distributed faster than a will. Or assets can be distributed to future generations when they reach a certain age.
There are several types. There are real estate trusts, living trusts, asset protection trusts and funeral/final expense trusts.
Choosing the right long-term care
Depending on the underlying cause of the anemia, your loved one may need different levels of care, which our guide will cover here. You have several long-term care options: traditional nursing homes and nursing care, assisted living, in-home care, hospice care, continuing care retirement communities, independent living, adult day cares and respite care. Respite care is a short-term care option that may be especially good after more intensive treatments, like bone marrow transplants. If anemia is coupled with other diseases, such as Alzheimer’s disease, then the long-term care facility options are more narrow.
Some key questions to ask when touring a facility are:
- What is your experience caring for someone with anemia (and/or the underlying condition that causes it)?
- What are your meals like? Do you provide enough iron, B12, and folate in the diet?
- What is medication supervision like? Do you monitor vitamins/supplements, as well as medications?
- What is your plan in case of an emergency?
If you’re looking at care for your loved one with anemia, be sure to tour long-term care facilities in depth. Go a few times during evenings and weekends, if you can, to see how the assisted living facility or nursing home runs outside of tour hours. The AARP offers a checklist to fill out when touring long-term care facilities.
Finding the right anemia care provider
As far as your loved one’s care team goes, anemia isn’t as cut and dry as some of the other diseases. Because so many different diseases could be the underlying cause of anemia, care can run the gamut as far as different specialists go.
Your primary care provider will probably test for and prescribe supplements or basic treatments for anemia. For instance, if your anemia is simply a nutrient deficiency, your primary care provider may handle it. If the anemia is more complex, you may also want to look into the main care coordinator or one specialist that oversees your main care across several branches of specialists. They may keep main records on file and help talk with other care providers on your behalf.
A primary care provider could hold the role of care coordinator, or some people with anemia caused by blood disorders choose a hematologist, for instance. Those with anemia caused by cancer may choose their oncologist.
For finding specialists, your care coordinator will most likely refer you. If you need to find the main care provider, do some research on your local doctors. Check where they were educated and make sure they are licensed or certified by the necessary boards.
Ask a potential care provider what their experience is with anemia and/or the underlying condition. How many years have they been treating it, and how many patients have they seen with it? While you talk to them and are in for the first check-up, see how patient they are with questions and how well they explain illnesses and treatments. And remember that you always have the right to a second opinion.
1. What causes anemia? How do I know if I’m at risk?
There are many risk factors for anemia. Some are easily fixable, like having a diet that is low in iron, B12 or folate. Some are short-term, like menstruation (which causes loss of red blood cells) or pregnancy (which takes up a lot of nutrients). People over 65 years of age are at an increased risk for anemia. And then there are the chronic conditions that can cause anemia, like kidney failure. There are also inherited forms of anemia, like sickle cell anemia.
Certain diseases can also put you more at risk of developing anemia. Those include autoimmune diseases, like rheumatoid arthritis or kidney disease. Cancer, thyroid diseases, and inflammatory bowel disease are also risk factors for anemia.
It’s up to you and your doctor to find the causes and see how at risk you are. If you have conditions causing anemia that run in your family, you can talk to a genetic counsellor and they can tell you your risk and the risk of passing it down to children.
2. Can we prevent anemia?
Some types cannot be prevented since underlying conditions cause them. However, the types of anemia that come from a dietary deficiency can. Seek out foods high in iron, B12, and folate.
Foods that are high in iron include:
- Dark green leafy vegetables
- Dried fruit
- Iron-fortified cereals
- Dark chocolate
- Lentils and beans
- Grains fortified with iron
Foods that are high in B12 include meat and dairy.
Foods that are high in folic acid include:
- Dark green leafy vegetables
- Citrus juices
- Fortified cereals
We can’t all eat perfectly, so if you feel like your diet isn’t up to the task on its own, consider a supplement or vitamin that has iron, folic acid, and B12. Talk to your doctor before you begin these.
3. I’m vegan/vegetarian. How can I make sure I get enough iron and B12?
The most popular way to keep up with iron and B12 is by eating beef. The good news is that a lot of foods for preventing anemia are vegetarian or vegan, like dried fruits and legumes.
Heme is iron in animal products, while non-heme is from plant sources. Non-heme is not as easily absorbed as iron from animal products, which is why anemia can be a concern among vegetarians and vegans. So you’ll need to eat foods with non-heme iron, as well as foods that help your body absorb iron.
You can find non-heme iron in a variety of sources, like whole wheat, avocado, spinach, mushrooms, potatoes, legumes, soybeans, tofu, and lentils. Eating foods that are high in vitamin C helps you absorb that iron. So look for foods like citrus fruit, chard, broccoli, tomatoes, kiwi, red and green bell pepper, strawberry, cantaloupe, and papaya.
There are also foods that hinder iron absorption, like tea, coffee, wine, beer, soda, calcium supplements, and food that is very high in dietary fiber and dairy.
But wait, you say, B12 is in dairy! Look for plant-based foods fortified with B12, like cereals, plant milk, and soy products. You may also want to talk to your doctor about supplements.
4. Now I’m worried about anemia. Should I just start taking iron pills to be safe or give them to my loved one?
Be wary: you can get too much iron in your system. A general rule is to not get more than 45 milligrams per day, according to womenshealth.gov, unless a doctor wants you to take more. Too much iron can cause damage to the heart, liver, and pancreas.
Talk to your doctor or nurse first before you just start supplementing. Iron pills, specifically, can carry some nasty side effects. They cause upset stomach, diarrhea, and constipation.
You can reduce these side effects in a few ways. Start with a smaller dose and gradually increase to the full prescribed dose. Try to divide doses, like one pill in the morning and one in the evening. Take it with food. Talk to your doctor about any side effects if you still have them. Aim the liquid at the back of the mouth, avoiding the teeth if you take that form.
5. I’ve heard anemia can be related to birth control. Is that true?
Certain types of birth control can actually help iron-deficiency anemia. Many types, such as the pill, patch or shot, make periods lighter, meaning less blood loss. However, other types, like the non-hormonal copper IUD, can make flow heavier, increasing the risk of iron-deficiency anemia. Talk to your doctor if you feel a heavy period is making you feel weak, dizzy, or out of sorts in any other way.
6. My loved one has anemia from pregnancy. How could that affect the baby?
Pregnant women actually need almost twice the amount of iron as non-pregnant women do. It goes to support the baby. Inadequate iron levels can lead to premature birth or low birth weights, which can threaten the life of the baby.
However, women who are breastfeeding actually need less iron than non-pregnant women. This is because women will not lose iron through the menstrual period, as periods are light to non-existent while breastfeeding.
7. My loved one has been very tired lately. How do we know if it’s anemia?
If you notice your loved one has any symptoms of anemia, schedule a doctor’s appointment. The doctor can test for hemoglobin levels. A physical exam may also reveal other symptoms like trouble concentrating.
8. How serious is anemia, really? Is it linked to any life-or-death attacks?
Anemia is not immediately life-threatening on its own unless it comes from severe blood loss. However, long-term it can cause problems with organs if left untreated. It could also signal a fatal disease as the underlying cause.
9. Does exercise help with anemia?
A study from The American Journal of Clinical Nutrition stated that there’s a higher prevalence of iron deficiency anemia in athletes than in sedentary individuals, particularly in young female athletes. Dietary choices play a large role, but increased rates of red cell iron and whole-body iron turnover played a part. And a study in the British Journal of General Practice detailed three cases of exercise-induced anemia from intensive physical training.
Given the numerous health benefits of exercise, that shouldn’t scare someone with anemia out of exercising altogether. Talk to the doctor about how and when your loved one with anemia can safely exercise.
10. My loved one is going in to be tested for anemia. What can we expect?
The doctor will most likely do a basic physical exam to look for and assess symptoms. You may discuss your loved one’s medical history with the doctor. Blood tests will be completed to check blood counts and nutrient levels. There may be other tests to check for any underlying conditions, which may be other types of blood tests or urine tests. In rare cases, the doctor may remove some bone marrow to test for specific types of anemia.
11. How treatable is anemia?
Anemia is frequently resolved after the underlying condition is treated, especially in cases with iron or vitamin deficiency anemia. However, the mortality risk is higher in older adults with anemia over non-anemic older adults. Anemia also increases the risk of functional decline in older adults, such as mobility and balance.
The prognosis gets a little more complicated when different underlying diseases are taken into account. According to the Aplastic Anemia and MDS International Foundation, about seven in 10 aplastic anemia patients get better with standard treatments. For other disorders, like MDS (a bone marrow disorder), the doctor may use a prognostic scoring card that looks at different aspects of the disease, like cell counts. Other disorders, like PNH (an immune disorder), have new treatments becoming available all the time.