Stroke is the leading cause of long-term disability and the risk of stroke more than doubles every decade with every decade of life after the age of 55. Given its prominence, understanding the complexities of long-term care for those who suffered a stroke can be overwhelming. The effects of stroke on older adults and their families often result in the individual requiring significant ongoing help with activities of daily living (ADLs) resulting in the need for long-term care. Some of the major causes of stroke are uncontrolled high blood pressure, blood clots, and heart disease. Strokes are one of the leading causes of neurological disorders.
Keep reading to learn more about stroke, the rehabilitation process, long-term care options, and answers to frequently asked questions.
Types of stroke
A stroke is also referred to as a cerebrovascular accident (CVA). A stroke occurs when blood flow to the tissues of the brain is cut off because blood flow is blocked (blood clot) in one or more blood vessels (ischemic stroke) or when a blood vessel ruptures and bleeding occurs in the brain (hemorrhagic stroke). Ischemic strokes is the most prevalent stroke type. When either of these occurs, brain tissue is injured or destroyed which results in various body systems being impaired.
Other types of strokes and conditions associated with strokes include:
- Transient ischemic attack: A temporary blockage of blood flow to the brain. Considered a mini-stroke, a transient ischemic attack is relatively benign in terms of immediate consequences, according to the American Stroke Association.
- Acute ischemic stroke: An acute ischemic stroke is caused when too little blood is getting to part of the brain .
- Nonvalvular atrial fibrillation: Atrial fibrillation is an irregular heart rhythm, and can have many causes.
- Subarachnoid hemorrhage: When a blood vessel ruptures just outside the brain.
- Embolic stroke: An embolic stroke is a type of ischemic stroke, that occurs when blood clots form, break loose, and travel to the brain.
- Intracerebral hemorrhage: A life-threatening type of stroke, the intracerebral hemorrhage (ICH) is caused by brain tissue bleeding.
Signs and symptoms
Knowing the signs, stroke-like symptoms, and type of stroke is important for several reasons.
First of all, being able to recognize the signs and stroke-like symptoms of a stroke will alert one to the fact that a stroke may be occurring and prompt one to contact emergency services immediately. Because there is a narrow timeframe in which medical interventions are effective for reducing permanent damage from a stroke, it is essential that the person who has had a stroke be treated as soon as possible to reduce both the short and long-term disability that may result.
Secondly, research shows that 24% of women and 42% of men who have had a stroke will have a recurrent stroke within 5 years. Being able to recognize the following signs and stroke symptoms can help ensure that an individual receives prompt medical treatment at the first sign of a stroke:
- Difficulty speaking and understanding. An individual may be confused, slur their words, or have difficulty understanding speech.
- Paralysis or numbness of the face, arm or leg. This may include sudden numbness, weakness, or paralysis of an arm, leg, or part of their face, especially on one side of the body.
- Difficulty seeing in one or both eyes. This may include sudden blackened vision, blurred vision, or double vision in one or both eyes.
- High blood pressure. Uncontrolled high blood pressure is a common risk factor associated with strokes among adults.
- A headache. A sudden severe headache may develop that may or may not be accompanied by dizziness, nausea, vomiting, or decreased consciousness.
- Difficulty walking. An individual may suddenly become dizzy and stumble or lose their balance and coordination.
An easy way to remember these signs and stroke symptoms is to remember to “think FAST” and do the following:
- Face. Ask the person to smile. Does one side of the face droop?
- Arms. Ask the person to raise both arms. Does one arm drift downward? Or are they unable to lift one arm?
- Speech. Ask the person to repeat a simple phrase. Is his or her speech slurred or strange?
- Time. If you observe any of these signs, call 9-1-1 or your local emergency number immediately. Do not wait to see if symptoms go away. Every minute counts.
Risk factors and prevention
80% of all strokes are preventable. Several risk factors have been identified that contribute to stroke risk. Some of these risk factors are modifiable such as smoking, diabetes, high blood pressure, and obesity while others cannot be controlled including one’s age, gender, and race. Identifying and understanding one’s personal risk of stroke and taking action to reduce stroke risk by changing or treating modifiable risk factors is important in preventing recurrent strokes.
Effects of stroke
A stroke can affect a person in many ways. Several different body systems are often altered following a stroke resulting in a range of complications for the affected individual. These may range from mild impairment from which the individual may fully recover to total and complete disability requiring 24-hour skilled nursing care. Some of the more common complications that may occur after a stroke include:
- Paralysis and loss of muscle movement
- Difficulty swallowing
- Blood clot
- Difficulty with speech and language
- Memory loss and difficulty thinking
- Behavioral and emotional changes
- Difficulty performing self-care tasks
Paralysis and loss of muscle movement
Paralysis is the lack of ability to move a muscle or group of muscles. It is one of the most common complications that occur after a stroke. It is estimated that as many as 9 out of 10 individuals who suffer a stroke will have some degree of paralysis resulting in the loss of ability to move one’s muscles and/or limbs.
If a person suffers paralysis, it usually occurs on one side of the body and is called hemiplegia. If paralysis does not occur, a person may experience muscle weakness when trying to move limbs or parts of their body which is called hemiparesis.
Rehabilitation following a stroke commonly includes physical therapy, occupational therapy, and speech-language therapy in order to help the affected individual regain some muscle control and strength as well as the ability to communicate again. The effectiveness of rehabilitation depends on a number of factors particularly the severity of the brain injury resulting from the stroke. Other pre-existing health conditions that an individual has prior to a stroke may also play a significant role in one’s ability to recover from a stroke.
Another common problem that occurs after a stroke is difficulty swallowing which is also known as dysphasia. This may include difficulties swallowing food or liquid, taking medications, swallowing saliva in the mouth, or even difficulties breathing. Swallowing difficulties are most common right after a stroke occurs and often require rehabilitation to overcome these difficulties and regain as much function as possible.
Difficulty with speech and language
Another common complication experienced by individuals after a stroke is difficulty speaking and using language. The medical term for this is aphasia. This may occur if the stroke occurred in areas of the brain which control the formation of thoughts, the understanding of spoken language, or the muscles in the mouth and throat that help form words when speaking.
These difficulties with speech and language can cause a great deal of frustration, anxiety, and fear for the person who is used to clearly and easily communicating with very little thought or effort. Family members and friends may also experience frustration, anxiety, and fear when the affected individual is no longer able to communicate with them the way they used to. Rehabilitation includes speech therapy and physical therapy. An individual may regain all of their speech and communication abilities over time or some residual and/or significant impairments may remain.
Memory loss and difficulty thinking
A person who has suffered a stroke may also have various cognitive problems that interfere with their ability to communicate and process information from their environment. These cognitive problems may include difficulties with:
- Making decisions
- Social cognition
Many individuals have some memory impairment following a stroke and short-term memory is most commonly affected. It can also be difficult for people with a stroke to learn new information.
Memory refers to your ability to take in information from your environment, store it, and then retrieve it again in the future when needed. Memory is a complex brain function that does not involve only one area of the brain. Consequently, the effects of a stroke on memory will depend on which areas of the brain were injured by the stroke and if those areas correspond with memory storage and retrieval.
The American Heart Association/American Stroke Association (AHA/ASA) has identified the following simple techniques to help improve one’s memory after a stroke:
- Repetition and rehearsal
Attention refers to one’s ability to focus and concentrate on specific things while ignoring or blocking out other things in one’s environment. For example, one’s attention may be drawn to a bird flying by outside the window or one may choose to focus their attention on a friend who is speaking to them.
People who have had a stroke can find it very tiring to try and direct their attention after a stroke and they may have difficulty concentrating and retaining information resulting in memory problems. They may also find rehabilitation mentally tiring because of the concentration required. Difficulties concentrating and focusing are most common within the first few weeks after a stroke and are more common in people who had a stroke on the right side of their brain.
Perception refers to the ability to interpret and understand the environment around us. This is done primarily through our five senses. By interacting with objects and experiences in our environment, our brains make some interpretations about what we are experiencing and interacting with and this information is stored in our brains as memories.
The next time we encounter a similar experience, we have references in our “memory bank” from which to draw to compare new information to. For example, as a healthy child grows, they learn to recognize what a “car” is as opposed to a “truck”. However, after a stroke, it may be difficult for a person to identify a “car” because they are unable to access information deep within their brains that define exactly what a car is or even the idea that the word “car” exists. Difficulty identifying what objects are or what they are called is known as agnosia.
The medical term for difficulty planning is apraxia. After a stroke, patients may find it difficult to complete tasks that require any degree of planning or organized steps to execute. For example, getting dressed may be difficult because there is a specific order in which one needs to put on underclothes followed by pants, socks, a shirt, and then footwear. Tasks like these that were once easily completed with very little to no thought may now be very difficult or even impossible to perform for the person who has had a stroke.
There is an area near the front of the brain that is thought to help us make decisions based on distinctions we make between the various options available to us. After a stroke, people often find it difficult to make decisions because they are unable to sort through these options, weigh the information related to each option, and then come to a rational conclusion. As a result, decision making may be very difficult for people after a stroke with complex decisions being impossible to make. This relates closely at times to difficulties with social cognition discussed below.
Social cognition refers to the ability to read and interpret one’s social context including the behaviors and feelings of others and make appropriate choices and decisions based on one’s social surroundings. For people who have had a stroke, it can be difficult to understand how to conduct oneself appropriately in social situations. Others may now find these individuals to be impulsive and lacking regard for the thoughts and feelings of others.
It is important for family members and friends of a person who has had a stroke to understand that this behavior is the result of an injury to the brain rendering the person incapable of appropriate social behavior at least until some healing of the brain has occurred. These changes are also related to personality and emotional changes that happen to the person who has had a stroke and are dependent on the severity of the stroke and which areas of the brain were affected.
Behavioral and emotional changes
Some behavioral changes such as impulsivity and lack of social skills were discussed above, however, there are other behavioral changes that family and friends may notice in a person after a stroke as well. These behaviors may last long term but often they improve gradually over time. Family and friends may observe that an individual after a stroke:
- Becomes angry or irritated very quickly
- Appears stressed, angry, or aggressive
- Withdraws from conversation
- No longer shows interest in the things that they used to enjoy
- Makes decisions without considering what will happen afterward
- Is less inhibited, more outspoken, or suddenly self-centered.
- Displays a change in sexual behavior.
Post-stroke pain is common in more than half of all patients following a stroke. It may occur soon after a stroke or even weeks or months later. The pain may be constant or intermittent (e.g. it may come and go) and is often described as a “burning” or “pins-and-needles” kind of pain. While there are different types of pain that a person may experience, post-stroke pain is often categorized as one of two types: local pain or central pain:
Local pain (also referred to as mechanical pain) is most commonly felt in the joints with the shoulder joint being the most common site.
Central pain (also referred to as central post-stroke pain) is usually constant, moderate to severe pain resulting from damage to the brain. With this type of pain, it is thought that the brain is receiving normal sensory information such as touch, temperature, and other common sensations but registers this information as painful stimuli. As a result, even a gentle touch of one’s hand may elicit a pain response.
Post-stroke pain symptoms may include pain that:
- Is constant (chronic)
- Comes and go (intermittent)
- Is felt on part of or the entire side of the body affected by the stroke
- Is felt on the face, arm, leg or trunk of the body
- Is aching, burning, sharp, stabbing or itching
People with central pain may:
- Feel nothing when a sharp pin or warmth or cold is applied to their skin
- Experience normal touching as unpleasant and painful
- Feel more pain with emotional stress, cold, or movement
- Stop using parts of their body that constantly feel pain
- Allow their muscles to weaken to avoid pain in those areas
- Misuse drugs
- Suffer from depression
- Increase their dependency on family members or friends
Difficulty with activities of daily living
As one might expect, the person who has had a stroke often requires assistance performing daily self-care tasks or ADLs. The degree of assistance required depends on the extent of the brain injury resulting from the stroke and which side of the brain was affected. Common ADLs that people require assistance with after a stroke include dressing, bathing, eating, mobilizing, toileting, taking medications, and communicating.
Long-term care after stroke
Once a person is medically stabilized, rehabilitation may start within 24 hours. Depending on the severity of a stroke and its resulting effects on the individual, various medical professionals are involved in the rehabilitation process. These professionals may include physical therapists, occupational therapists, speech-language pathologists, psychologists, and social workers. Rehabilitation begins in the hospital and then continues in a clinic, the patient’s home, or a long-term care facility where the person is transferred.
As noted earlier, the effects of a stroke can be widespread and affect almost every part of one’s daily life. The degree to which someone is able to live independently and safely after a stroke will depend on the severity of the stroke and the areas of the brain affected.
For those who have suffered a mild stroke, returning to one’s daily life at home may require some small adaptations and ongoing rehabilitation. For those who have suffered a more severe stroke, the ability to return home will depend on four factors:
- Ability to care for oneself. Rehabilitation prior to discharge from the hospital is usually focused on helping an individual regain the ability to perform ADLs such as bathing, dressing, and eating.
- Ability to follow medical advice. This is a critical step in recovery and preventing a recurrent stroke or post-stroke complications. It is important for an individual to take medications as prescribed and follow medical advice.
- Ability to move around and communicate.
- Presence of a caregiver. Someone should be available in the home who is willing and able to help when needed.
If the person who has suffered a stroke is able to return home, some modifications to the home environment are often required in order to make it functional and safe. These modifications may range from simple like installing handrails in the bathroom to more complex such as installing a wheelchair ramp. More complex modifications can be quite expensive, however, some programs exist which offer older adults with health needs financial assistance to make home improvements.
It is also important to consider whether or not one’s home is capable of being modified to meet one’s daily living and care requirements after a stroke. For example, if the bedrooms of one’s home are located on the second floor and are only accessible by a flight of stairs, are there any bedrooms on the main floor that an individual could use instead after a stroke? If not, this may make it difficult to return home.
The AHA/ASA recommends making the following changes at home before an individual is discharged from hospital:
- Safety. Remove anything that might cause accidents or be dangerous. Remove loose throw rugs and ensure the individual wears securely fitting rubber-soled shoes. Be sure to test water temperature before washing or bathing and install handrails in the bathroom and other areas as needed.
- Accessibility. Move or rearrange furniture to make it easier to navigate inside the house. A ramp may need to be built leading up to the house if the person mobilizes with a wheelchair or if they are unable to use stairs safely. After a stroke, an individual needs to be able to move through the house freely and safely.
- Independence. Modify the home so that seniors recovering from a stroke can remain independent. Other special equipment such as transfer benches or shower chairs may also be required.
Once it has been determined that it is safe for an individual to return home after a stroke and the home environment has been modified to meet their new daily needs, there are some important things for the caregiver at home to know as they prepare to take care of a person after a stroke.
- Ensure medications are taken as scheduled & monitor side effects. Keep a notebook of suspected side effects and medication questions and share these with the individual’s physician or healthcare provider as soon as possible.
- Learn as many post-stroke side effects as possible. This will enable the caregiver to understand the individual and their needs better and will result in less frustration for both the caregiver and the person who is recovering from a stroke.
- Be aware supplements can cause recurrent strokes. Some supplements may interact with medications increasing chances of another stroke. Always triple check the safety of any supplements the individual is taking with their physician or a pharmacist.
- Understand that recovery normally speeds up and slows down. A plateau commonly occurs approximately 3 months after a stroke but this is normal and is not a sign that no further healing is possible. Recovery may continue for decades after a stroke.
- Modify the home to prevent falls. Keep the home free of objects that may cause falls. Make the home as easy to navigate as possible.
- Take falls very seriously. If a serious fall occurs, call 9-1-1. Otherwise contact the physician or therapist as soon as possible about the fall. They may want to assess the individual or make suggestions for further modifications at home to prevent subsequent falls.
- Understand the emotional impact of stroke. Depression, anxiety, grief, mood swings, and post-traumatic stress disorder (PTSD) are all possible emotional reactions experienced by an individual after a stroke. Help the individual find the appropriate supports to deal with their emotions.
- Help find support for the stroke survivor. Helping the stroke survivor connect with other stroke survivors through face-to-face support groups or online support groups can help stroke survivors feel understood and cared for by individuals going through similar challenges.
- Find caregiver support. Caregiver burnout can occur. It is important for the caregiver to ensure their needs are also being met and to maintain connections and relationships with others.
- Organize medical documents. Keep all paperwork related to insurance, medications, side effects, and behavioral changes in a folder and take it with you when taking the individual to see their physician or therapist.
- Stay on top of insurance. Be sure to speak with the insurance provider to determine which products and services are covered. As the individual continues to recover, they may be eligible for additional products or services, therefore, it is important to discuss ongoing care needs with the insurance provider.
- Help manage stroke risks. Some risk factors for stroke can be managed and modified to help prevent recurrent strokes. Be sure to help the individual identify and modify any stroke risk factors to help prevent subsequent strokes.
- Encourage repetition & consistency to maintain progress. Repetition and consistency are important in recovery because they literally help “rewire the brain” and re-establish connections for skills that were lost. Repetition and consistency will help the individual regain independence and more function sooner.
Caring for a person at home after a stroke can be challenging and time-consuming. It may be necessary to look for some in-home help and consider respite services and adult day care, particularly if the caregiver is working and cannot be home much of the time.
Although an individual may be able to return home after a stroke, their physical care needs may be difficult for a caregiver to meet, particularly if the caregiver is working outside the home, is an aging spouse, or is a spouse who has health challenges themselves. For these reasons, employing the services of a home health aide may be a good option.
These professionals are able to assist with dressing, eating, bathing, toileting, and mobility as well as housekeeping tasks such as preparing meals and laundry. These services also tend to be quite affordable compared to the services of other healthcare professionals and Medicare may pay for some of these services if an individual qualifies.
Home health care services vs. home care services
When considering what in-home assistance may require, the Administration on Aging (AoA) points out that an important difference to be aware of is the difference between home health care services and home care services.
Home health care services are essentially medical services although they may provide some home care services. Home health care services are provided by home health care professionals such as nurses, therapists, and home health aides. However, home care services include common daily tasks such as running errands and house cleaning and does not include medical services. Medicare covers up to 60 days of home health care services for individuals that qualify.
Home and community-based services (HCBS)
The National Association of Area Agencies on Aging (AAA) and Title VI Native American aging programs also offer a wide variety of supports and services for people who have had a stroke. These services are referred to as home and community-based services (HCBS) and they enable people to return home and live as independently as possible. Some HCBS include:
- Home health care
- Home-delivered meals
- Homemaking services
- Caregiver support services
For a more comprehensive list of HCBS supports and services available, click here.
Respite care is another service that caregivers may need or want to access when caring for a family member at home after a stroke. To identify the various respite programs (including respite voucher programs) available in your area and the costs associated with each, go to the Eldercare Locator website and search for a contact in your local area agency. In addition, the American Association of Retired Persons (AARP) has identified some other ways to find and pay for respite services.
Adult day care
Adult day care also provides services to families and people returning home after a stroke. Like respite care, this service allows a caregiver to go to work, run errands, or just have a caretaking break while knowing that the needs of their family member are being met. There are two types of adult day care services:
- Adult social daycare. This service provides activities and recreation and limited health-related services.
- Adult day health care. This service offers focused health, therapeutic, and social services for individuals with complex medical conditions and those at risk of requiring nursing home care.
Despite one’s desire to return home after a stroke, many post-stroke patients require significant rehabilitation following a stroke and therefore must be transferred to an inpatient rehabilitation facility (IRF), skilled nursing facility (SNF), or long-term acute care hospital (LTAC) also called long-term care hospitals (LTCH).
When deciding which of the three types of facilities would be most appropriate for an individual after a stroke, it is important to check with one’s insurance provider to determine which types of post-acute care are covered and the limits of each. Information provided here by the AoA is also helpful for identifying different ways long-term care may be paid for.
Inpatient rehabilitation facilities (IRFs)
The rehabilitation professionals who work in IRFs work very closely as a team and often have daily team meetings about the progress and plan of patient care. Individuals seeking this type of rehabilitation care should be able to participate in at least three hours of rehabilitation work daily. Medicare will cover up to 90 days of this type of care, sometimes longer — Though the cost sharing of this type of stroke care is often very high.
Skilled nursing facilities (SNFs)
If a person is not able to participate in three hours of rehabilitation daily but still requires significant rehabilitation assistance, an SNF with a coordinated rehabilitation program would be a better choice of facility for an individual after a stroke. Medicare usually covers up to 100 days of SNF care.
Long-term care hospitals (LTCHs)
Long-term care hospitals are licensed acute care hospitals that provide treatment for patients who need an extended period of time to recover such as patients recovering from a stroke. Medicare coverage of LTCHs is also available for individuals who qualify.
Knowing what in-home and long-term care options are available can help ease some of the stress and anxiety for both families and individuals learning to adapt and heal following a stroke.
1. Is it possible for my wife to recover enough from her stroke with rehab to come home again? She seems to be improving every time I see her.
It is important to remember that almost anything is possible when it comes to healing and the human body is given enough time and the appropriate therapies and treatments. The extent to which a person is able to recover from a stroke is also dependent on other factors including the severity of the stroke, the severity/type/number of pre-existing health conditions, a person’s overall health prior to the stroke, as well as their will and determination to get better.
Some people do improve to the point that they are able to return home after rehab and others improve but do not return home for a variety of reasons. Each situation is completely unique both in terms of the person who had the stroke and their family situation.
2. Why does my uncle let his left arm hang limp off the side of his wheelchair since his stroke? It’s like he’s not even aware that it’s there. He’s gotten his fingers caught in the wheel a number of times and bruised them pretty badly but he doesn’t seem to even realize he’s hurt his hand. Why is he doing this?
Your uncle appears to be exhibiting something known as one-side neglect which is a common phenomenon after a stroke. It occurs on the side of the body that is experiencing paralysis or muscle weakness. It is as if the individual is not even aware that they have a “left side” to their body because they do not seem aware that it exists. This may be due to loss of vision as well the loss of sensation to the left side of his body, particularly his left arm.
This phenomenon usually improves over time through rehabilitation in which the person is “taught” that they have two sides to their body and that they need to take care of the paralyzed or weaker side as well.
3. My daughter and her husband are really health conscious and just gave birth to our first granddaughter. My husband has had 2 strokes now. My daughter and her husband want to know if genetics is a risk factor for having a stroke?
Research shows that genetics may increase one’s risk of a stroke by as much as much as 50%. However, experts believe that through preventive measures in reducing known risk factors for stroke including diet modifications, smoking cessation, and exercise, an individual is able to reduce their likelihood of having a stroke even if there is a genetic predisposition for stroke within one’s family.
4. Can a stroke also cause Alzheimer’s or dementia? My mom seems like a different person now since her stroke. Her memory is so bad. She use to remember everything and now she can’t even remember my name.
Memory impairment is actually quite common in individuals after a stroke, especially short-term memory loss. The extent or severity of memory loss depends on the severity of the stroke and the areas of the brain that were affected. A stroke, however, does not “cause” Alzheimer’s or dementia to occur.
Although memory loss is a common factor occurring in both people who have had a stroke and people who have Alzheimer’s, the impairments in the brain causing the memory loss in each health condition are very different. The good news is that one’s memory often improves as the brain heals from the injury over time.
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.