Pseudobulbar Affect

Pseudobulbar Affect
Pseudobulbar Affect – 1
Pseudobulbar Affect – 2

Pseudobulbar Affect (PBA) is a neurological disorder that causes uncontrollablebouts of emotion such as laughing and crying. PBA can affect people at any age, but generally accompanies another neurological disease such as Multiple Sclerosisor Alzheimer’s, according to PBAinfo.org. This website is dedicated to raisingawareness about this little-known and misunderstood disorder.

In people with Alzheimer’s disease (AD) and dementia such a diagnosis can be particularly difficult. PBA is common, affecting between 10–40 % of people with AD but is frequently not detected or is misdiagnosed. According to figures from The National Stroke Association, 20% of stroke survivors will experience PBA inthe year following their stroke.

Differentiating PBA from depression and other behavioral disturbances in AD and dementia is helpful to identify a specific cause of their symptoms and assist with appropriate management. A person can have both PBA and depression, but they are two separate diagnoses.

SYMPTOMS

  • Emotional outbursts that are sudden and uncontrollable.
  • Outbursts can include laughing, crying, and can last as long as a few minutes, or be as short as a few seconds. According to the American Stroke Association, these episodes can strike a person up to 100 times a day.
  • Besides being out of the control of the person experiencing them, the emotional spells caused by PBA may not reflect the actual feelings of that individual. A person may cry in response to a joke or have a laughing fit during a sad time.
  • Outbursts may also be overly exaggerated, for example a person may displays bout of boisterous laughter in response to a neutral or mildly humorous situation.

CAUSES

PBA is thought to be triggered by a traumatic injury, or a neurological disease that affects the parts of the brain that deal with the processing and expression of emotions. People with PBA suffer from an injury-induced, “short-circuiting” of the signals that govern their emotions.

SOME HEALTH PROBLEMS THAT CAN GIVE RISE TO PBA INCLUDE:

  • A stroke
  • Multiple Sclerosis
  • Alzheimer’s disease
  • Parkinson’s disease
  • Brain trauma
  • Lou Gehrig’s disease (ALS)

DIAGNOSIS

PBA is a separate neurological disorder that can be diagnosed and treated independently of other health related diagnoses. Diagnosing PBA can often be challenging as the symptoms of this disease closely mirror those of depression and other mood disorders.

Current diagnostic methods for PBA are relatively sparse. There are essentially the two tests a physician may utilize to identify if person has PBA:

  • The Pathological Laughter and Crying Scale
  • The Center for Neurologic Study-Lability Scale.

These tests are designed to help a physician determine how often and severe PBA outbursts are in a person and what their primary triggers are.

If you feel that you’re caring for someone who may have undiagnosed PBA, discuss the symptoms with their doctor.

SUPPORTING A LOVED ONE WITH PBA

PBA can have an enormous impact on a person’s social life. Emotional occurrences caused by the disease can be distressing and can interfere with interpersonal relationships.

For caregivers of people with PBA, it can be difficult trying to deal with a person who feels isolated and alone because of their disease.

PBAinfo.org offers a tips for caregivers to help them interact positively with their loved ones:

  • Let them know that you support them and they are not alone. Reassure them that many people suffer from the symptoms of PBA.
  • Remind them that their outbursts are caused by a physical disease, not a mental condition.
  • Indicate your willingness to listen to their frustrations and concerns.
  • Keep an “episode diary.” By recording PBA episodes, you can ensure better communication with your doctor and help him or her make an accurate diagnosis.

Lewy Body Dementia

Senior Citizen
Family

WHAT IS LEWY BODY DEMENTIA?

Lewy body dementia is a progressive brain disorder in older adults. LBD is not a rare disease. It accounts for up to 20% of dementia cases and affects an estimated 1.3 million families in the U.S. alone.

LBD is challenging to diagnose, because symptom onset and combinations vary. Early and accurate diagnosis is important, because people with LBD often have extreme sensitivity to certain prescription and over-the-counter medications.

If someone you know is experiencing these changes, they might have LBD:

THINKING & BEHAVIOR

  • Dementia is the primary symptom and includes problems with memory, problem solving, planning, and abstract or analytical thinking.
  • Cognitive fluctuations involve unpredictable changes in concentration andattention from day to day.
  • Hallucinations are seeing or hearing things that are not really present.
  • Other mood disorders and psychiatric symptoms such as depression, delusions (false beliefs), or hallucinations in other senses, like touch or smell.

MOVEMENT

  • Parkinson’s-like symptoms include rigidity or stiffness, shuffling gait, tremor and slowness of movement.
  • Repeated falls attributed to dizziness, fainting, or the effects of parkinsonism on posture & balance.
  • Previous diagnosis of Parkinson’s disease, followed a year or more later by decline in cognitive abilities that interfere with every day living. (Parkinson’sdisease dementia is one clinical presentation of Lewy body dementia.)

SLEEP & OTHER SYSTEMS

  • Acting out dreams, sometimes violently. May appear years before any changes in cognition.
  • Severe sensitivity to neuroleptics (also known as antipsychotics), which are medications used to treat hallucinations or other serious mental disorders.
  • Excessive daytime sleepiness or transient loss of consciousness.
  • Significant changes in the autonomic nervous system, such as dizziness, fainting, sensitivity to heat & cold, sexual dysfunction, early urinary incontinence, or constipation.

Help is available! Visit lbda.org to learn more!

Memory Support Links & Readings

ALZHEIMER’S ASSOCIATION

The Alzheimer’s Association provides detailed information about research, caregiver resources and chapter information that services your area. They have a 24/7 care line for individuals to call who need immediate assistance. Registration is also available for e-newsletters and fund raising information.

24/7 Helpline: 1.800.272.3900

ALZHEIMER’S DISEASE RESOURCES

Check out informative publications from Alzheimer’s Disease Research, newsletters with research updates, organizations that can provide assistance in many areas, from financial aid to senior housing, medical illustrations and videos, a list of helpful books, and memory games and exercises.

ALZHEIMER’S FOUNDATION OF AMERICA

The mission of the Alzheimer’s Foundation of America (AFA) is “to provide optimal care and services to individuals confronting dementia, and to their caregivers and families – through member organizations dedicated to improving quality of life.

AMERICAN PARKINSON’S DISEASE ASSOCIATION

As the country’s largest grassroots Parkinson’s disease organization, the American Parkinson Disease Association (APDA) improves the lives people with Parkinson’s disease and their families from coast to coast with patient/caregiver support; education and positive lifestyle programs; awareness, social and fund raisingevents; and scientific research funding at all levels.

LEWY BODY DEMENTIA ASSOCIATION

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances. The Association’s purposes are charitable, educational, and scientific.

LBD Caregiver Link – 800.539.9767

THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION (FTD)

Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. FTD is also commonly referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Picks disease.

CARE CROSSROADS

Care Crossroads is an innovative, interactive “community of care” Web site that helps family caregivers meet other caregivers, learn about the brain disorder and connect “live” with experts. Among the site’s highly-versatile and unique features, AFA’s social workers are standing by 9 a.m. to 5 p.m. (Eastern) Monday to Friday to respond to questions and concerns on caregivers’ own communication terms: online via Skype and live chat, as well as e-mail and phone calls to the organization’s toll-free hot line at 866-232-8484. Caregivers can meet other caregivers via a discussion board, “I Care” video stories and creative contributions.

GENERAL:

National Institute of Health – Free Publications
John’s Hopkins News Alerts

MAGAZINES/JOURNALS:

Take Care: National Family Caregivers Association (NFCA)

Take Care is a quarterly newsletter of the National Family Care giver’s Association with evidence based research and practical caregiver advice. A “question and answer” column and resource information is included. Sign up or read past issues

Today’s Caregiver Magazine / Caregiver Media Group

Today’s Caregiver is a national magazine for caregivers that contains feature articles, interviews, book reviews, letters, poetry, advertisements and advertiser index. Specific articles are search able from the search function.
Download issues in PDF or subscribe

Doctor’s Visit & Appointment Prep Sheet

Doctor Visit

MAKING THE MOST OF A DOCTOR VISIT FOR YOU AND YOUR LOVED ONE

Effective communication is important for you and your family when someone you love has Alzheimer’s or related dementia. Always include your loved one in conver-sation with the doctor during the examination so they are a part of conversation. They should always have someone to accompany them to ensure the doctor is receiving accurate information. It is natural for anyone to get nervous at a doctor appointment and having someone at the visit will offer comfort. If you have topics you wish to cover in private with the doctor, set up a separate appointment. Below are recommendations to prepare you to get the most from the appointment.

WHEN VISITING THE DOCTOR:

  • Call ahead- if there is a pressing concern notify the doctor before arrival
  • Always bring current medication bottles including vitamins and supplements
  • Take notes so you can review information later
  • Bring a current physician list including phone numbers of who is treating your loved one
  • Discuss any mood or behavior changes-provide specifics. The more information you provide the more suggestion the doctor can offer.
  • Be prepared should there be a wait-bring snacks/bottled water and distractions to keep your loved one occupied
  • Ask if there is any literature you can review and take home
  • Ask questions-it is always okay to ask for clarification

Print out our form to help you prepare your loved one for a doctor’s visit.

Maintaining A Daily Routine

Daily Routine

Daily routines can be very beneficial for the person with Alzheimer’s as well as the caregiver. Organizing the day allows more time to enjoy activities and assists with avoiding stressful situations. Planned activities can enhance a person’s self-esteem by giving purpose to their day. Focus activities around what the resident is able to do to avoid frustrations. People with Alzheimer’s and other forms of dementia thrive on familiarity, the more you can incorporate that resonates with your loved one’s pre-dementia life, the better.

BELOW IS A LIST OF QUESTIONS TO DETERMINE PRIOR TO SETTING UP YOUR DAILY ROUTINES:

  • What is typical “wake-up” time?
  • What are night time routines?
  • What time of day is the person more lucid and cooperative?
  • Which activities or interests does the person enjoy doing?
  • Are there times of the day where too little is going on? Too much?
  • Allow time for activities to be completed.
  • Include Personal Care in the daily plan.
  • Be flexible and follow through with plans.
  • Keep usual habits for consistency.

DAILY PLAN MAY INCLUDE THE FOLLOWING:

  • Personal Care Tasks-brushing teeth/bathing/getting dressed
  • Preparing meals
  • Taking walks-exercise
  • Gardening
  • Reading the mail
  • Household chores
  • Looking at family photos
  • Spiritual Activities
  • Creative Arts and Music
  • Social-visiting with friends and family

We invite you to read our Dining Out with Success link to make your visits more pleasurable.

Communication Tips

Alzheimer’s and Dementia Residents
Alzheimer’s and Dementia Residents – 1

One of the biggest challenges those connected to Alzheimer’s and dementia residents face is communication. Families want to stay connected to their love done but as cognitive abilities change, communication skills also change. Finding communication techniques that work best for your loved one will make conversations flow more easier and will make the most of your visits. Reviewing the tips below, will assist in communicating with the one you love.

  • When you arrive at the resident’s home, do not ask the resident what they have been doing. This creates anxiety for the resident which creates anxiety for you. The resident may have difficulty remembering what they have done for the day. Make your greeting about the present moment. For example, “Rose, look at that beautiful sweater you are wearing. It goes so well with your hair.”
  • Make sure the individual hears you. Many seniors are hard of hearing. Try to maintain eye contact so they know you are still engaged in conversation.
  • Lower the pitch of your voice. A lower pitch is easier to hear.
  • Eliminate distracting noises like television and radio.
  • Use short words and short sentences.
  • Ask only one simple question at a time. Complex choices may overload the person’s ability.
  • Speak slowly and wait for the person to respond.
  • People with Alzheimer’s and Mild Cognitive Dementia respond very well to emotional cues. If you are tired, stressed, or angry they will pick up on it. Before visiting someone with dementia, get in a good space. Approach the resident in a happy mood because they will always pick up on it.
  • Always remain pleasant, calm, and supportive.
  • Express affection.
  • Look directly into the person’s eyes.
  • Point, touch, hand the person things.
  • Some people have difficulty finding words. It’s okay to supply words. If you’re not sure it’s the right word, just go with the flow.
  • If you cannot understand what the person is communicating, pick up on a phrase or word and run with it. Don’t worry about not understanding.
  • Focus on connecting. Communicating moment by moment creates lasting connections for your and your loved one.

Dining Out

Dining Out
Dining Out - 1

TIPS FOR DINING OUT – STAYING FOR DESSERT

With the right preparation, it is possible to enjoy a nice meal out with a loved one with dementia. Choose a restaurant that your loved one is familiar with. You can provide a special card to the wait staff to discretely inform them that you are dining with someone with Alzheimer’s or dementia. Take the following into consideration to make the most of your dining experience.

EVALUATE THE RESTAURANT ENVIRONMENT:

  • Noise levels
  • Waiting times-make reservations when possible
  • Review the menu online and decide what to eat before visiting
  • Is the service quick-is the staff helpful
  • Do the restrooms accommodate your loved ones needs
  • Are restrooms easily accessible
  • Ask what the busiest times are-schedule your visit during slower times of the day
  • Check out the seating-make sure your loved one will be comfortable throughout the meal

WHILE AT THE RESTAURANT:

  • Ask to be seated in a quiet area to avoid over-stimulation.
  • Discuss the menu and provide 2-3 choices they like. You can also show pictures of the entrée if available.
  • Order a finger food appetizer to keep engaged
  • Maintain an engaging conversation with your loved one
  • Pack a “Just in Case” bag including utensils, personal care items, extra change of clothing, engagement items – photo book, puzzles, and magazines. This may also include items your loved one enjoys that offer comfort.

10 Signs of Alzheimer’s

Alzheimer
Alzheimer – 1
Alzheimer – 2

ALZHEIMER’S DISEASE:

Alzheimer’s is a brain disease that causes a slow decline in memory, thinking, reasoning and behavior. Each person may experience one or more of these signs and at different degrees. Alzheimer’s accounts for 60-80% of dementia cases for people over 65 years. Read below about The Alzheimer’s Association 10 Warning Signs of Alzheimer’s:

  • Memory loss that disrupts daily life One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking the same information over and over; increasingly need to rely on memory aides (reminder notes or electronic devices) or family members for things they used to handle on their own.
  • Challenges in planning or solving problems Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
  • Difficulty completing familiar tasks at home, at work or at leisure People with Alzheimer’s and other forms of memory loss often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.
  • Confusion with time or place People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
  • Trouble understanding visual images and spatial relationships For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.
  • New problems with words in speaking or writing People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may have to repeat themselves. Memory loss often affects vocabulary; your loved one may have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”)
  • Misplacing things and losing the ability to retrace steps A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing when memory loss prevents them from locating a mislaid item. This may occur more frequently over time.
  • Decreased or poor judgment People with Alzheimer’s may experience changes in judgment or decision making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.
  • Withdrawal from work or social activities A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.
  • Changes in mood or personality The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

It is always recommended to consult your physician to discuss signs further.