Normal Pressure Hydrocephalus (NPH) is a condition that occurs when cerebrospinal fluid (CSF) builds up inside the skull and presses on the brain. This can lead to various impairments in brain functions, such as thinking, memory, movement, and bladder control. NPH can also affect the quality of life, mood, and behavior of the person with NPH and their caregivers. The cause of NPH is often unknown, but it may be due to injury, bleeding, infection, brain tumor, or surgery on the brain. This article aims to provide a guide for families to understand NPH, its symptoms, diagnosis, treatment, and management, as well as how to cope with the challenges and uncertainties of living with NPH.
What is Normal Pressure Hydrocephalus?
NPH occurs when cerebrospinal fluid (CSF) builds up inside your skull and presses on your brain. CSF provides nutrients and removes waste products from your brain. Usually, your body makes just enough CSF each day and absorbs that same amount. However, too much fluid can sometimes build up in the ventricles, the chambers that contain CSF in your brain. This can lead to NPH.
NPH affects the brain by enlarging the ventricles and causing pressure and damage to nearby brain tissue. This can disrupt and impair various brain functions, such as thinking, memory, movement, and bladder control. NPH can also affect the quality of life, mood, and behavior of the person with NPH and their caregivers.
The cause of NPH is often not known, but it may be due to injury, bleeding, infection, brain tumor, or surgery on the brain. These factors can interfere with CSF’s average circulation or absorption, accumulating fluid in the ventricles.
The three main symptoms of NPH are gait disturbance, urinary incontinence, and cognitive impairment. Gait disturbance means trouble walking, poor balance, falling, or changes in how you walk. Urinary incontinence means losing bladder control or frequent or urgent urination. Cognitive impairment means problems with thinking, memory, concentration, or reasoning. These symptoms can vary from person to person and may worsen over time.
A physical exam diagnoses NPH, a review of your symptoms and medical history, and some tests, such as CT or MRI scans of your brain and a spinal tap to remove a sample of your CSF. These tests can help measure the size of your ventricles, the pressure of your CSF, and the effect of eliminating some CSF on your symptoms.
NPH is treated by surgery to place a tube, called a shunt, into the brain to drain the excess fluid. The shunt is usually inserted into a ventricle in the brain and then passed under your skin from your head through your neck and chest to your abdomen. The extra fluid in your brain flows through the shunt into your abdomen, where your body absorbs it. The ventricles in your brain may then go back to their normal size. The shunt stays in place as long as there is too much CSF in the brain.
The risks of surgery include infection, bleeding, shunt malfunction, over drainage or underdrainage of CSF, and brain damage. The benefits of surgery include improvement or stabilization of symptoms, increased quality of life, and reduced need for care. However, not everyone responds well to surgery, and some people may not see any change or may even get worse. Getting prompt diagnosis and treatment helps improve your chances of a good outcome.
What to Expect Throughout the Disease
The progression of NPH and how it varies from person to person depends on several factors, such as the condition’s cause, severity, duration, response to treatment, and other health problems. NPH is a chronic condition that usually develops slowly over time, but it can also occur suddenly or worsen rapidly. Some people may have mild or stable symptoms, while others may experience severe or progressive impairment. The symptoms of NPH may also fluctuate or change over time, depending on the pressure of the CSF and the brain’s ability to adapt. The average age of onset of NPH is around 70 years, but it can affect people of any age.
NPH can affect the quality of life, mood, and behavior of the person with NPH and their caregivers in numerous ways. NPH can impair the person’s cognitive, physical, and emotional functioning, leading to difficulties in daily activities, social interactions, and self-care. NPH can also cause mood changes, such as depression, anxiety, apathy, irritability, or aggression. These changes can affect a person’s personality, relationships, and identity. NPH can also harm the caregivers, who may experience stress, burden, frustration, guilt, or isolation. Caregivers may also have to cope with the uncertainty and complexity of the condition, the challenges of finding and accessing appropriate care, and the emotional and financial costs of caring for a loved one with NPH.
There are some tips on how to cope with the challenges and uncertainties of living with NPH, such as:
Seek professional help and guidance from a neurologist, neurosurgeon, or neuropsychologist specializing in NPH. They can provide accurate diagnosis, treatment, follow-up care, and advice on managing symptoms and complications.
If recommended by your doctor, consider surgery to place a shunt in the brain to drain the excess fluid. Surgery is the main treatment for NPH and can improve or stabilize symptoms in many cases. However, surgery also has risks and may not work for everyone. Discuss the benefits and risks of surgery with your doctor and make an informed decision.
Participate in rehabilitation programs, such as physical therapy, occupational therapy, speech therapy, or cognitive training, to help you or your loved one regain or maintain functionality, independence, and quality of life. Rehabilitation can also help you or your loved one cope with the emotional and behavioral changes caused by NPH.
Join a support group or a community organization for people with NPH and their caregivers. Support groups can provide emotional support, practical advice, and social connections. They can also help you or your loved one learn from the experiences of others going through similar challenges.
Take care of yourself as a caregiver. Caring for a person with NPH can be demanding and exhausting. It is essential to prioritize your health and well-being, as well as the needs of your loved one. Seek help from family, friends, or professionals when you need it. Take breaks and do activities that you enjoy. Find ways to cope with stress, such as meditation, exercise, or hobbies. Remember that you are not alone and that you are doing your best.
NPH Observable Changes
Gait Impairment: Watch for changes in walking patterns, such as shuffling or difficulty lifting the feet.
Cognitive Deficits: Notice any decline in memory, attention, or problem-solving abilities.
Urinary Urgency: Be aware of increased urgency or frequency of urination.
NPH Stages
NPH tends to progress slowly, and the symptoms may wax and wane. Understanding the phases can help you anticipate and manage changes effectively.
Early Stage: Mild symptoms, often mistaken for normal aging.
Intermediate Stage: Noticeable gait and cognitive changes become more apparent.
Advanced Stage: Severe impairment in mobility and cognitive functions.
How to Care for Your Loved One with NPH
To help your loved one with NPH manage their daily activities, such as walking, toileting, dressing, and eating, you can provide some practical advice, such as:
Encourage them to use assistive devices, such as a walker, a cane, or a wheelchair, to improve their mobility and prevent falls. Ensure their home is safe and accessible, with adequate lighting, handrails, and nonslip mats.
Help them toile, especially at night, to avoid accidents and infections. Use absorbent pads, diapers, or catheters if needed. Monitor their fluid intake and output and consult their doctor if they have signs of dehydration or urinary retention.
Assist them with dressing, grooming, and bathing, and allow them to choose their clothes and personal items. Use Velcro, zippers, or buttons instead of laces or hooks. Use a shower chair, a handheld showerhead, and a nonslip mat in the bathroom.
Help them eat and drink and ensure a balanced and nutritious diet. Cut their food into small pieces and use a straw or a cup with a lid for liquids. Monitor their weight and hydration status and consult their doctor if they have signs of malnutrition or swallowing problems.
To communicate effectively and respectfully with your loved one with NPH, especially if they have memory loss or confusion, you can suggest some strategies, such as:
Speak slowly and calmly, using simple and direct words and sentences. Avoid shouting, arguing, or criticizing. Repeat or rephrase your message if needed. Use gestures, pictures, or objects to help them understand.
Listen attentively and patiently, giving them time to respond. Don’t interrupt or finish their sentences. Acknowledge their feelings and opinions and show empathy and respect. Avoid correcting or contradicting them unless it is necessary for their safety.
Maintain eye contact and positive body language, using their name and other familiar terms. Remind them of the date, time, and place, and provide cues and reminders for major events or tasks. Use a calendar, a clock, a notebook, or a phone to help them keep track of information.
Taking care of yourself as a caregiver is especially important, as caring for a person with NPH can be demanding and exhausting. You can find support and resources to help you cope with the stress and challenges of caregiving, such as:
Seek help from family, friends, or professionals when you need it. Don’t hesitate to ask for household chores, errands, or respite care assistance. Consider hiring a home health aide, a nurse, or a therapist to provide additional care for your loved one.
Take breaks and do activities that you enjoy. Find ways to relax, such as meditation, exercise, or hobbies. Maintain your physical and mental health and see your doctor regularly. Eat well, sleep well, and avoid alcohol and drugs.
Join a support group or a community organization for people with NPH and their caregivers. Support groups can provide emotional support, practical advice, and social connections. They can also help you learn from the experiences of others going through similar challenges. You can find online and local support groups through the Hydrocephalus Association or the National Hydrocephalus Foundation.
Signs and Symptoms that Indicate Hospice Care May Be Appropriate for Someone with NPH
Normal Pressure Hydrocephalus (NPH) is a condition that affects the brain and the spinal cord. It happens when too much fluid builds up inside the brain, causing pressure and damage. NPH can affect a person’s ability to walk, think, remember, and control their bladder. NPH can sometimes be treated with surgery, but not everyone can benefit from it. Some people may have NPH along with other health problems, such as heart disease, diabetes, or stroke.
Hospice care focuses on comfort and quality of life for people with serious illnesses that cannot be cured. It can help people with NPH and their families cope with the physical, emotional, and spiritual challenges of living with this condition. Hospice care can also provide support and guidance for making decisions about end-of-life care.
Some signs and symptoms that may indicate that hospice care is appropriate for someone with NPH are:
The person has trouble walking, even with assistance, and is at risk of falling or injuring themselves.
The person has difficulty communicating, understanding, or following instructions and needs constant supervision and assistance with daily activities.
The person has frequent or severe urinary infections, cannot control their bladder or bowel movements, and needs catheterization or diapers.
The person has changes in their mood or behavior, such as depression, anxiety, agitation, or hallucinations, and does not respond well to medication or other treatments.
The person has other serious medical conditions that affect their heart, lungs, kidneys, or liver, and their health is declining rapidly.
The person or their family desires comfort care rather than aggressive treatment.
The Importance of Hospice Care for People with NPH and Their Families
Living with NPH can be very challenging and stressful for both the person who has it and their family members. NPH can affect a person’s personality, memory, and emotions, making it hard to recognize or relate to them. NPH can also cause physical pain and discomfort and limit a person’s independence and dignity. NPH can also affect a person’s life expectancy and make them face difficult decisions about their future care.
Hospice care can help people with NPH and their families by providing:
Medical care that relieves pain and other symptoms and improves comfort and quality of life.
Nursing care monitors and manages the person’s condition and provides education and guidance on caring for them at home.
Personal care that assists with bathing, dressing, feeding, and other daily needs.
Social work and counseling services that address the emotional and spiritual needs of the person and their family and help them cope with grief and loss.
Volunteer services that offer companionship, respite, and practical support, such as running errands or doing household chores.
Bereavement services follow up with the family after the person’s death and provide ongoing support and resources.
Hospice care can be provided at home, in a hospice facility, or a nursing home, depending on the person’s preferences and needs. Hospice care can be started at any time, as long as the person’s doctor certifies they have a life expectancy of six months or less. Hospice care can also be stopped or resumed at any time if the person’s condition changes or they change their mind.
Hospice care is a compassionate and holistic approach to end-of-life care that respects the dignity and wishes of the person with NPH and their family. Hospice care can make a positive difference in the person’s physical, emotional, and spiritual well-being and help them live their final days with peace and comfort.
How to Prepare for the End of Life
NPH can affect the life expectancy and the end-of-life care of the person with NPH depending on the severity of the symptoms, the response to treatment, and the presence of other medical conditions. Some studies have suggested that NPH can reduce life expectancy by about 5 to 10 years. However, some people with NPH may live longer or shorter than the average, depending on their circumstances. The end-of-life care of a person with NPH may involve managing the condition’s complications, such as infections, falls, pressure ulcers, and shunt malfunction, as well as providing comfort and support for the physical, emotional, and spiritual needs of the person and their family.
Palliative care, hospice care, and advance directives are essential options and preferences to discuss with your loved one and their healthcare team when facing a life-limiting illness such as NPH. Palliative care focuses on relieving the symptoms and improving the quality of life of people with serious illnesses, regardless of the prognosis or stage of the disease. Hospice care is a specific type of palliative care that provides compassionate care for people who are terminally ill and have a life expectancy of six months or less. Advance directives are legal documents that allow you to express your wishes for your medical care and end-of-life decisions, such as whether you want to receive life-sustaining treatments, resuscitation, or organ donation. These documents can help you and your loved one to plan and communicate your values and preferences to your healthcare team and family members.
Coping with grief and loss is a natural and personal process that can be challenging and painful for anyone who has lost a loved one. There is no right or wrong way to grieve; everyone may experience different emotions and reactions. Some of the common ways to cope with grief and loss include:
Seeking support from family, friends, or professionals who can listen and empathize with you.
Expressing your feelings through writing, art, music, or other creative outlets.
Take care of yourself by eating well, sleeping well, exercising, and avoiding alcohol and drugs.
Engaging in activities that bring joy, satisfaction, and connection can help you find meaning and purpose.
Honoring the memory and legacy of your loved one by celebrating their life, sharing their stories, and keeping their spirit alive in your heart.
Conclusion
NPH is a chronic condition that can affect the cognitive, physical, and emotional functioning of a person with NPH and their caregivers. However, with prompt diagnosis and treatment, as well as appropriate care and support, many people with NPH can improve or stabilize their symptoms and maintain their quality of life. It is vital to seek professional help and guidance, participate in rehabilitation programs, join support groups, and care for yourself as a caregiver. Planning and discussing your preferences for end-of-life care with your loved ones and the healthcare team is also essential. Coping with grief and loss is a personal and ongoing process that requires patience, compassion, and resilience. By learning about NPH and its management, families can empower themselves and their loved ones to live with dignity, respect, and hope.
