Prader-Willi Syndrome

Prader-Willi Syndrome is a genetic disorder that occurs in approximately 1 in 15,000 live births. It can affect both genders, and all races and ethnic groups. It is characterized by excessive hunger, known as hyperphagia, mental retardation, as well as several other physical symptoms. The disorder occurs when 7 genes on chromosome 15 are missing on the paternal chromosome.

Prader-Willi Syndrome is currently diagnosed using genetic testing, especially in newborns with hypotonia, or very low muscle tone (also know as “floppy baby”). There is no cure for Prader-Willi Syndrome, but if it is caught early on in a child’s life, there are treatments available that can offset some of the effects of the disorder.

Those who are afflicted with Prader-Willi Syndrome are at an increased risk for learning difficulties and attention problems. But the biggest problem for patients is an insatiable appetite and preoccupation with food, which often leads to extreme obesity.

Those with Prader-Willi Syndrome often exhibit the following physical indicators:

• Short stature
• Small hands and feet
• Low muscle tone (hypotonia)
• Excessive fat deposit, especially in the trunk area of the body
• Narrow forehead
• Fair skin and light hair, compared to other family members
• Thin lips and narrow eyes

There are numerous health issues that can affect the patient that are related to Prader-Willi Syndrome. Because of the likelihood of morbid obesity, there is an increased risk for high blood pressure and sleep apnea, as well as all other long-term health problems associated with being overweight. In addition, a person with Prader-Willi Syndrome might suffer from:

• Crossed eyes (strabismus)
• Scoliosis
• Bedwetting
• Osteoporosis

This is why treatment for the disorder is so important. Many problems can be counteracted with available therapies. Growth hormones can be used to increase height and muscle mass. Other treatments available address the patient’s obsession with food and voracious appetite. Sometimes, cabinets and refrigerators must be locked to keep patients from overeating.

In fact, weight management is the most important treatment for those afflicted with Prader-Willi Syndrome. By making children with the disorder follow a balanced diet that is low in calories, take vitamin and calcium supplements, and get a lot of exercise, many of the problems associated with the disorder will diminish, and many of the long-term health issues will not be such a concern.

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Parkinsons Disease

Do your nursing assistants know that Parkinson’s Disease affects nearly 5 million individuals worldwide and that 1 of every 100 senior citizens has PD? At some point, your CNAs are bound to care for clients with this common disease. By sharing the following information at your next CNA inservice meeting, you’ll give your aides an increased understanding of what it’s like to live with Parkinson’s Disease.

Driving with Your Foot on the Brake

Imagine trying to drive a car with your foot jammed on the brake pedal. Will the car move? Maybe a little depending on how new the brakes are! But movement will be sluggish, and jerky. The car will be hard to handle in turns and on hills. Starts and stops will seem odd, not smooth like the other cars on the road. This is kind of what it’s like to have Parkinson’s Disease.

People who have Parkinson’s Disease (also called PD) don’t have enough of a chemical called dopamine in the brain. Dopamine is the chemical that tells the brain how to control and coordinate body movements.

When dopamine is low, the brain pulls the brakes on the body’s ability to move and control movement. This leaves the person less able to control the body. Like driving with your foot on the brake… movement is sluggish and jerky, difficult to control, and starting and stopping a movement is not smooth.

PD is a chronic condition which means that it continues over a long period of time. It’s also a progressive condition which means that it gets worse as time goes on. Parkinson’s Disease affects about one in every 100 people over age 60. The average age at onset is 60, but about 10 percent of sufferers have symptoms as early as 30 years old.

No one really knows the exact cause of PD. There is no test to actually diagnose it, and right now, there is still no cure.

What’s Happening in the PD Brain?

There is a small area in the brain stem, just above the spinal cord called the substantia nigra (SN). Cells in the SN produce dopamine. Dopamine is a neurotransmitter that is responsible for regulating movement and balance.

Over time, in people with PD, the cells of the substantia nigra degenerate or die, and therefore no longer produce the dopamine needed for movement and balance. This is why we see loss of control, slowed movements, and tremors.

Symptoms of PD are not present until nearly 80 percent of the SN cells have died. The symptoms may appear minor at first. Then, as more and more SN cells die… less and less dopamine is available to control movement.

Doctors don’t know why SN cells die in the first place, and they don’t know how to stop it. But, they can replace dopamine with medications and temporarily improve movement and coordination.

The Five Stages of Parkinson’s Disease

One of the most common evaluation scales for Parkinson’s Disease clients is the Hoehn-Yahr scale. According to this scale there are five stages of Parkinson’s Disease. They are:

Stage 1-Symptoms are very mild and annoying. They are usually on one side of the body. The client’s family and friends have started to notice some changes in posture, walking and facial expression.

Stage 2-Symptoms begin to affect both sides of the body and they are more obvious. The client’s posture and walking are affected. Minor signs of disability are starting to show.

Stage 3-Symptoms are very obvious. The client’s balance and walking are affected a lot. Standing is a problem, too. The general coordination of the client begins to fail.

Stage 4-Symptoms are more severe. The client can still walk, but not very well. Stiffness and slowness are a big problem. Many clients become unable to live alone.

Stage 5-Symptoms are disabling. The client is unable to walk or stand. They become completely dependent on others and require constant care.

Each stage of Parkinson’s can last for many, many, many years!

The Main Symptoms of Parkinson’s Disease

There are four main symptoms of Parkinson’s Disease. They are:

1. TREMOR (SHAKING) Tremor is also called Resting Tremor because it’s most noticeable when the client is at rest. It usually begins with the hands and feet, but can affect the head, neck, face, tongue, lips, and jaw.

The shaking or trembling is at a regular beat of around four to six beats every second. It may happen only on one side of the body or it could be worse on just one side depending on the time of day. Stress can make it worse.

2. RIGIDITY (STIFFNESS)

Rigidity is a stiffness or an ache in the muscles. The muscles are always tense and it gets worse with movement. This happens to all the voluntary muscles. So, it’s hard for a PD client to move their arms, and legs. Their arms don’t swing when they walk.

Parkinson’s clients can have trouble with breathing, eating, swallowing, and speech, too. The face loses expression and becomes “mask-like”. The eyes don’t blink as often, and it’s hard to smile.

3. BRADYKINESIA (SLOWNESS)

This symptom is about slow movement. It’s very frustrating for people with PD because it takes them a very long time to do routine things like walking, bathing, eating, and dressing.

They move in slow motion. And to make it worse, they never know when it will happen. One minute they seem to be moving fine and the next minute they aren’t.

4. POSTURAL INSTABILITY (UNSTEADINESS)

This term means loss of balance or unsteadiness. People with Parkinson’s Disease lose their coordination and fall down easily.

They tend to lean forward or backward especially when they walk. They tend to have poor posture and can have droopy shoulders and a lowered head.

5 Key Points to Remember

1. Parkinson’s eventually effects every part of the body and mind.
2. There is no cure for PD but medication or surgery can ease the symptoms.
3. When caring for a client with PD, your goal should be to encourage independence for as long as possible… even when it seems to take forever for your client to perform simple tasks!
4. It can be very frustrating for clients with PD to suddenly lose the ability to care for themselves. Never take an anxious or angry outburst personally.
5. Clients with a chronic disease like Parkinson’s, for which there is no cure, may become depressed, withdrawn, and even suicidal. Be sure to report any signs that your client is becoming depressed or suicidal immediately so intervention can be initiated.

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Palliative Care

The question “What is Palliative Care?” needs to be answered and understood by those who want to age in place. Quality of life means something different to every individual. With advanced medical technologies people are living longer, many with multiple chronic conditions. Palliative care addresses life prolonging measures, end of life issues and quality of life as we age in place.

There is a point in our lives when the medical treatment we are receiving is no longer a benefit to our body or our condition. This is a time when each person must choose the path that is right for them based on their values and wishes.

Knowing the answer to what is palliative care addresses the point where medical treatment is no longer a benefit from three different perspectives.

1. Life prolonging measures, there is a point when our bodies are no longer able to tolerate or respond well to a recommended treatment. Some doctors recommend more aggressive therapies. In order to assist the body and make the individual more comfortable, doctors may recommend certain measures to assist the individual to continue to prolong treatment. An example may be a gastrostomy (feeding) tube placed in the stomach with a drainage bag for decompression. This means a person can drink for pleasure and everything drains into a bag to prevent nausea and vomiting.

2. Quality of life medical conditions get to a certain level where the medical intervention cannot cure the condition, but can maintain the condition at a certain level that provides a level of quality of life that is acceptable to the aging adult.

3. End of life issues, this is the level of palliative care where the individual makes the determination that their quality of life is not where they want it to be and is no longer tolerable for them. This is a time where hospice may be introduced and the process of comfort care is started.

Addressing life prolonging measures, end of life issues, and quality of life are topics that many avoid discussing. It is uncomfortable, emotional and painful for many to address. It is also difficult for many to realize and accept that the medical interventions are not only failing, but robbing them of their quality of life. Many individuals are truly frustrated and angry at their physicians. The issues of side effects and the affect the medical interventions would have on their quality of life were never addressed at length or in detail. Many would not have had the treatment if they had known before hand that they would be robbed of their quality of life.

Planning ahead with advanced directives and health care power of attorney should be the first step to opening the lines of communication to age in place. Consider discussing goals of quality of life and end of life issues. Be aware, even with these discussions, emotions will get in the way and decisions will never come easy.

Palliative care, in addressing life prolonging measures, end of life issues and quality of life can support, educate and assist you and your loved ones in making the right decisions. An individualized plan of care based on the physical, emotional, spiritual needs and the values of your loved one is developed. Knowing what is palliative care can assist you and your loved one to successfully age in place if that is their wish.

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Multiple Sclerosis

After a diagnosis of Multiple Sclerosis for you or a loved one there can often be a feeling of being overwhelmed with information regarding the disease and you can be left with a sense of confusion. The following is a brief description of the disease and some related information that could be of service to a sufferer or their family and friends. For more detailed information please contact your medical professional, physician, counselor or local support group.

What is Multiple Sclerosis?

Multiple Sclerosis, commonly called MS, is chronic disease of the central nervous system. The name multiple sclerosis refers to multiple areas of scarring (sclerosis) that the disease causes to the Central Nervous System when the body’s own immune system attacks and damages the nerves. The cause of MS is still unknown but it usually affects people aged 20-40 years old and is more commonly found in women and people of European descent. In most cases MS does not affect life expectancy though sadly there is yet to be a cure for this serious illness.

What happens to an MS sufferer?

In some cases sufferers only experience mild symptoms while others will have relapses causing more damage to the nerve fibers in the body and the disability to worsen. MS can cause;

· hypoesthesia (changes in sensation)

· muscle weakness

· abnormal muscle spasms causing difficulty with coordination, balance and movement

· dysarthria (problems with speech)

· dysphagia (problems with swallowing)

· visual problems

· fatigue

· acute or chronic pain syndromes

· bladder and bowel difficulties

· cognitive impairment or depression.

What are the treatments available to MS sufferers?

Currently there is no cure for MS but there are many treatment options which can help to slow the progression of the disease and to control some symptoms, including muscle spasms, urinary problems, mood and behavior symptoms and fatigue.

Approximately 25% of MS sufferers will require a wheelchair and have other mobility issues. The daily life of someone who has Multiple Sclerosis can be made much easier by utilizing bed lifts, shower chairs, transfer systems, walkers and wall bars. A well planned exercise program started early in the course of the disorder as well as a living a healthy lifestyle, good nutrition and enough rest and relaxation can greatly benefit sufferers. Avoiding fatigue, stress, temperature extremes, and illness will also assist.

Some MS sufferers will also benefit from therapy and talking to other people with MS in the form of support groups or internet forums.

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Motor Neurone Disease

About Amyotrophic Lateral Sclerosis And It’s Symptoms

Amyotrophic Lateral Sclerosis, ALS or Lou Gehrig’s disease is a type of motor neuron disease (MND). This means that it attacks and contributes to the death of those nerve cells that are responsible for the body’s voluntary movements. You may wonder why it’s also called Lou Gehrig’s disease. It was one of ALS’ famous victims – a New York Yankees’ baseball player. Mr. Lou Gehrig was found to have gotten the amyotrophic lateral sclerosis disease way back in 1939. ALS is a pretty rare condition. Recent studies and statistics show that more men have acquired and are more likely to acquire this Lou Gehrig’s disease than women. When it comes to age, amyotrophic lateral sclerosis symptoms are known to threaten individuals between the age of 40 and 70.

Researchers and experts supported by the National Institute of Neurological Disorders and Stroke, which is part of the National Institutes of Health, have been trying to unlock the mystery that is ALS. They are trying to understand several things about the Lou Gehrig’s disease. What triggers the body’s motor neurons to degenerate in amyotrophic lateral sclerosis? If that is the case, what are the ways or solutions to prevent that degeneration or cell death? Those and other important questions are being considered as the research continues on. So far, researchers aren’t able to find a better treatment or a permanent cure for the amyotrophic lateral sclerosis disease.

Bodily Functions Being Affected By ALS

Mobility

Early symptoms for the Lou Gehrig’s disease include trouble walking and running and also trouble writing. Since amyotrophic lateral sclerosis initiates the death of the motor neurons, it won’t be surprising that the patient will have severe mobility problems as the sickness progresses. s/he won’t be able to move his/her legs, arms and some other parts of the body

Speech

Another early symptom is disordered articulation or some minor speech problems at the start. You can expect the speech defect to worsen throughout the progression of ALS. If you noticed that someone in your family who is perfectly normal has this symptom, you should consult the family physician right away.

Eating

The patient’s eating ability will be affected as well because s/he will have difficulty in swallowing water or food. This is where utmost care for the patient involved is much needed. With the help of the attending physician, you and the rest of the family will learn effective approaches on how to deal with the situation.

Breathing

As if not being able to move, speak or chew wasn’t enough, the amyotrophic lateral sclerosis disease also affects the chest muscles on its latter stages. There are initial symptoms recorded of having shortness of breath. In most cases, patients suffering from the Lou Gehrig’s disease die from respiratory failure.

Huntingtons Disease

Huntington’s disease, also known as Huntington’s chorea, is a degenerative neurological disease in which cells in the brain slowly deteriorate until they cease to function. Huntington’s is classified as an autosomal dominant disease which means that a child can inherit the disease if only one parent carries the abnormal gene. It is estimated that one in ten thousand people are afflicted with this disease, of which sixteen percent of those cases are juvenile onset. Although there is currently no cure for this terminal disease, there are many treatments to relieve symptoms and much research being done to hopefully one day find an end to the suffering of its captives.

There are many physical and mental symptoms that characterize this deadly disease. Early mental symptoms include: anger, depression, sudden mood swings, and difficulty making decisions and learning new information. Patients may often develop bi-polar like symptoms with manic and depressive phases. Physical symptoms include: balancing problems, involuntary facial movements, jaw clenching, and sudden changes in handwriting. Later symptoms can include: severe coordination problems, rapid eye movements, slurred speech, swallowing problems, and dementia. Symptoms of Huntington’s disease typically will not appear until around or after the age of forty.

There are many tests in which doctors can use to diagnose Huntington’s disease. First, there is a physical exam where the physician will test motor skills and functions. Also the doctor will take down and medical history of the patient and the family. They may perform a CT or MRI scan to check areas of the brain for neurological problems. Doctors may also request the patient have a blood test to screen for the Huntington’s gene. Based on these tests a physician may refer the patient to other specialists that can further help the patient through the difficult process of treating this disease.

Although Huntington’s is incurable, research and technology are bringing doctors and scientists closer to better treatments and possibly a cure for this disease. Physicians often recommend that patients stay on regular schedule medications to treat many of the symptoms that may hinder the normal functions of everyday life. The first drug approved by the FDA to directly treat many of Huntington’s symptoms was Tetrabenazine. Doctors may also prescribe tranquilizers such as Klonopin and antipsychotics such as Halopendol to control movement, hallucinations, and violent outbursts. Scientists are also researching into treatments involving stem cells and combination’s of other drugs used to treat other terminal diseases.

Although medication is very effective in treating symptoms of this disease, there are many things a patient can be doing at home to keep healthier longer. Because this disease causes motor degeneration, patients should be exercising everyday to help keep their muscles and motor function strong. Patients should also maintain a healthy diet which should also involve extra vitamin supplements. People with Huntington’s often burn over 4,000 calories a day so they need extra nutrients to maintain a healthy weight. Those affected also may experience dehydration and should make sure they consume extra fluids to avoid this. Physical and speech therapy are also recommended to help combat the strong effects of this disease.

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Dementia

This article will help explaining about the dementia and general information pertaining to it. I will provide some useful tips for people helping their seniors with this disease. You will find some real practical and realistic solutions to issues you face while taking care of people suffering from dementia. While many of you will be inspired to assist such people, there are many of us who are here to get help so that in turn you can help person who recently got diagnosed with Alzheimer’s which is another form of dementia. And you are going to prepare yourself to help such a family member for whom you were never ready. You know the person is losing his memory gradually and you need to be around that person all the time to help him living respectfully.

The first thing you need to seek is information on this disease like what the nature of this disease is and how it is going to exist or even grow with the person.

The disease when found from the time of diagnose will live for 10 years with the affected person. This indicates either it’s going to be 10 difficult years or you would change those difficult years into well manageable time where you learnt the right way to take care of them thus making a quality life for both of you. As I mentioned, there are lot many practical ways you can follow to relieve stress on you and your loved ones. I would simply ask you to follow these three rules:

• Always keep in mind quality of your life is still better than person with such disease.
• If you are stressed, angry, helpless, then this mental state is going to affect the person you are taking care of.
• Well there are lots of situations you must have heard with people suffering from dementia. Don’t assume you are going to face the same times and anticipate issues before.

Alzheimer’s and dementia always evolves with the time. If you are facing some situation at any moment, keep in mind, its one of the stages of evolvement of this disease. Problems you might face in the beginning would never be the same at the later stage. Each situation arising may be unique to that instance only and you will have to adapt to it quickly. You might be thinking of a technique to help them today which would be impossible by tomorrow looking at the condition which will be worse.

As you know very well that it’s going to be evolving with time, teach your attitude with same evolvement, your care and temperament should also evolve and go parallel with it. There may be a situation where you find a solution to a problem but it’s normal if it is not going to be a success for same kind of problems in future. No solution is static with such disease. And then you will feel so helpless and alone facing problems of this kind. Any easy solution to such loneliness feelings is Dementia or Alzheimer’s Societies which have been setup to ease such feelings. Such associations will give you a chance to meet similar families facing same problems as yours. You can easily search for such associations on Internet. You can find the address and contact information of members of these institutions and meet them. You will be able to share your challenges and even methods that helped you with dementia’s people with such member’s and families which will give you a lot of relief.

While finding such people online, try locating people who are closer to your place so that you can reach them easily. And then you will surely see a change that now you can handle person with such disease more effectively than ever before. And I would feel I have accomplished what I wanted if this piece of information have helped finding you a meaning of life again for them and yourself. I know its true that there is still no remedy to this problem, but believe me there are some methods and techniques you will learn gradually with experience that you can impart to overcome problems confidently.

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Autism

Autism is a brain disorder which causes developmental disabilities that restrict an individual’s ability to communicate as well as socialize with others. The National Autistic Society reports that almost half of all adults with autism in the UK live with their parents. Since autism is a condition which persists throughout an individual’s life, learning how to handle the challenges of caring for adults with autism can help not only the autistic family member but also help minimize the stresses and pressures felt by every other member of the family.

Low functioning autistic adults need constant care at home or in a residential facility because they truly cannot function in the real world of work, duty and responsibility. Because of the expense of residential care, most low functioning austistic adults are cared for at home by their families. High functioning autistic adults present less of a challenge because this group is able to train to undertake minimal responsibilities and even in some cases simple jobs in the workforce outside the home.

Because caring for an adult with autism is a challenge that lasts throughout the individual’s life, it is essential that the primary caretaker or family members dealing with the autistic person find support networking with other individuals in the same situation. The National Autistic Society is one of the best resources in the UK for getting support in dealing with a family member who has autism and is now an adult. Round the clock caretaking can cause emotional as well as physical burnout, so care should be taken for regularly scheduled respite breaks by enlisting other family members for help or hiring outside help on an occasional basis in order to catch one’s breathe.

To ease the financial strain that many families encounter when caring for an adult with autism, application should be made to the proper government sources recommended by the NAS in order to receive disability benefits as well as financial stipends to ease any monetary stress caused by caring for a family member with autism.

Getting to know as much as possible about therapies that can help adults with autism is another step in the right direction while dealing with the challenge of caring for an autistic adult. Many adults with autism can benefit from having menus with special dietary considerations, as well as participating in a program of specific vitamins, minerals and nutritional supplements. Specific programs like autism assistance dogs are just one of many therapies which can prove helpful when caring for adults with autism.

Asking for help and support, learning as much as possible about autism and the treatments that help the autistic adult, as well as taking a one day at a time positive attitude all form the cornerstone of a healthy program for dealing with the care of adults with autism.

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Aspergers Syndrome

What’s the difference between autism and Asperger’s syndrome? What do they have in common? That’s a question that concerns many people.

Asperger’s syndrome and autism are both on the spectrum of Autism Disorder which also includes Rett’s Disorder, Childhood Disintegrative Disorder, Pervasive Developmental Disorder Not Otherwise Specified, etc. All these types of autism disorder present at least some of those symptoms: echolalia (repeating words said by others), abnormal social behavior, restricted range of interest, poor motor coordination and self-stimulating behavior.

Asperger’s syndrome is a mild form of autism. People suffer asperger’s don’t have communication delays as people with other forms of autism have, they function relatively well in terms of intelligence and social functions, and they often manage to go to school, graduate from colleges and live independently. Asperger’s syndrome is a specific type of “high-functioning autism”(HFA), which is characterized by poor social skills, advanced and overly formal language, and extensive, pervasive interest in a specific subject. It’s said that geniuses and people with asperger’s share same characteristics, because they both have narrow interests and are more focused and persistent on what they are doing than normal people. Many geniuses showed asperger’s traits, for example, Isaac Newton, Albert Einstein, George Orwell and H G Wells. It is widely said that the president of United States, George W. Bush, suffered from asperger’s syndrome too.

Both Asperger’s and Autism are subgroups of a larger diagnostic category called Autistic Spectrum Disorders(ASD), people can be affected by the disorder very differently form others.

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Alzheimer’s

In Home Care

Providing home care for senior citizens with Alzheimer’s disease can be difficult. Symptoms progressively worsen, and predicting how quickly that progression will be or which behavioral changes will occur each day is impossible. Both the person with Alzheimer’s and the caregiver may have a hard time carrying out activities of daily life, such as eating, talking, sleeping, and coming up with activities to do. The following is a set of ideas that may help you deal with issues related to elder home care for people with Alzheimer’s.

Daily Activities

It may be challenging to think of activities that will be possible and interesting for a person with Alzheimer’s to do. Trying activities that build on present strengths and abilities is usually more successful than attempting to teach a new skill.

• Try not to set your expectations too high. It may be best to do simple activities that employ current abilities.
• Assist the person in starting the activity. Take the activity one step at a time, and praise the person each time he or she completes a step.
• Take note of agitation or frustration with each activity. If you notice a negative change in mood, gently try to help him or her with the activity or subtly change to a new activity.
• If you notice that the person enjoys a particular activity, try to make that activity a part of your schedule at a similar time each day.
• Make use of adult day care centers, which provide activities and support for the person with Alzheimer’s along with relief from caregiver tasks. Often, meals and transportation are provided in the cost of using these centers.
• Communicating with the person may be difficult-both understanding and being understood may become an issue. Try to use simple words and short sentences in a calm tone of voice.
• Refrain from talking to the person as if he or she were a child or talking as if the person were not there. To help the person focus, minimize background noise by turning off the radio and TV.
• Before talking, call the person by name to get his or her attention. Allow ample time for a response, and try not to interrupt.
• When the person with Alzheimer’s struggles to communicate a thought or idea, try to gently suggest a word or idea he or she seems to be thinking of.
• When asking questions or giving directions, frame them in a positive way.
• Meals and eating can be a challenge-some people with Alzheimer’s want to eat too often, whereas others may forget that they should eat. Provide a calm, quiet atmosphere during meals; this can allow the person to focus on eating.
• Offer limited choices for meals and serve small portions. Several small meals throughout the day may be a better option than three larger meals.
• Using straws or lidded cups may make drinking easier. Finger foods may be easier to handle than utensils, and bowls may be easier to use than plates.
• Keeping healthy snacks in a visible place will encourage healthy eating.
• See a dentist regularly to keep the person’s mouth and teeth clean and healthy.
• Many people with Alzheimer’s become restless, agitated, and irritable at night, usually around dinnertime. This is called “sundowning syndrome,” and some planning might be necessary to ensure that the person goes to bed early and stays in bed through the night.
• Encourage physical activity and discourage naps during the day, but allow time for ample rest-fatigue can increase the likelihood of restlessness during the late afternoon and night.
• Schedule more physically demanding activities early in the day. Try giving a bath in the morning and having large family meals earlier than normal.
• It is important to set a quiet, calm atmosphere in the evening to encourage sleep. Dim the lights, turn off loud sources of noise, and play soothing music if it helps the person.
• Encourage sleep at about the same time each night-routine may be helpful.
• Refrain from offering the person caffeine during the late afternoon or evening.
• Set up nightlights in the person’s room, hall, and bathroom if darkness scares or disorients the person.

Tips for Providing Personal Care

Providing personal care for people with Alzheimer’s, such as bathing, brushing teeth, or dressing, can be difficult. Below are some helpful tips to make personal care easier.

• Planning in advance for baths can help if the person with Alzheimer’s finds bathing frightening or confusing.
• Schedule baths during the time in which the person seems to be the calmest during the day. Developing a routine may help.
• Consider the fact that bathing might be scary or confusing for the person, and respect his or her feelings. Remain calm, gentle, respectful, and patient.
• Let the person know which step is coming next, and let him or her perform steps he or she is capable of doing.
• Prepare beforehand. Have everything you need in the bathroom and draw the bath before he or she enters.
• Consider the temperature. Test the water temperature beforehand, make sure the bathroom is a comfortable temperature, and keep extra towels and robes nearby.
• Limit safety risks by using a handheld showerhead, shower bench, grab bars, and non-skid bath mats. Do not leave the person alone in the shower or tub.
• A sponge bath may be a good alternative between bathing instead of bathing every day.
• Getting dressed may pose a challenge; deciding what to wear, getting certain articles of clothing on and off, and fumbling with zippers and buttons might be difficult. Plan ahead to minimize the confusion and difficulty in this task.
• Schedule dressing for the same time each day so the person can get used to having it in his or her routine. Encourage the person to perform as many steps as possible, and plan enough time to allow for difficulty.
• Present a few choices of clothing each day, and if the person has a favorite outfit, you may want to consider purchasing multiple sets.
• Lay out the clothes in the order they should be put on to help the person move through the process more easily.
• Provide clear, step-by-step instructions if the person is having difficulty.
• Pick out clothing that is comfortable, easy to get on and off, and easy to care for. Clothes with elastic waists and Velcro will eliminate problems with buttons, zippers, and tying. Take note of discomfort from tight clothes or pricking from a safety pin. The person may become irritable for seemingly no reason, but painful clothing might be the cause.
• With the progression of Alzheimer’s, many people may become incontinent (lose control over their bowels or bladder). This can be upsetting for the person with Alzheimer’s and is sometimes a sign of physical illness. Be sure to discuss this with a doctor.
• Develop a routine for taking the person to the bathroom and follow it as closely as possible. You may want to guide the person to the bathroom every few hours, for example. Do not wait for the person to ask or tell you.
• Notice signs of the person having to go to the bathroom, like restlessness or tugging on clothing. Respond to these signs quickly.
• Try to be understanding and considerate when accidents occur. Remain calm and reassure the person if he or she is upset or frustrated by it. Keep track of when accidents occur, and try to plan ways to avoid them.
• Preventing nighttime wetting may include limiting certain types of drinks later in the day, such as drinks with caffeine. If you plan on taking the person out, be aware of where bathrooms are located and have the person dress in clothing that is easily removable. Bring along an extra change of clothes in case of an accident.

Residential Care

Many caregivers eventually find that it is too difficult to continue providing in home care. When this happens, the person with Alzheimer’s will have to live in a place where care is provided at all hours of the day and night. Two types of residential care are available: assisted living and skilled nursing facilities.

Assisted living homes are set up in large apartment or hotel-like buildings or as a “board and care” home for a small group of residents. Each offers a different level of care, but most include meals, recreation, security, and help with bathing, dressing, medication, and housekeeping.

Conversely, skilled nursing facilities (also referred to as nursing homes) include 24-hour services and monitoring. They are able to provide medical care and rehabilitation for people who are very frail or are going through the later stages of dementia.

Health care providers sometimes provide different levels of care at a single site. This is called a “continuing care community,” and it is set up as two buildings, usually next to each other, to allow for ease of movement between assisted living and skilled nursing facilities. Some of these communities have programs for couples when one spouse is fairly healthy and the other is disabled.

Choosing a facility can be a difficult decision to make. Collecting information about services and options in anticipation of the need to relocate can be helpful in giving you time to weigh the options and choose the facility that best meets your needs.

Doctors, friends, relatives, social workers, and religious organizations may be able to help you locate nearby facilities. If you are looking for a facility farther away, it may be useful to hire a professional care manager to help you figure out specific care needs and identify community resources.

Compose a list of questions for the staff of each facility. This might include questions about what is offered at the facilities, such as activities, transportation, or units specifically for people with Alzheimer’s. Contact the residences you are interested in, and make an appointment to visit. Talk to as many people as possible while you are there, including administration, nursing staff, and residents. Take note of how the facility is run and how the residents are treated. Dropping by unannounced might also be a good idea to ensure that your first impressions were correct.

Do some research to determine whether each facility has Alzheimer’s-specific programs and services. You may want to ask whether the staff is trained in dementia care and if the facility allows family participation in planning personal care.

Other things you may want to consider are room availability, cost and payment method, and participation in Medicare or Medicaid. If there is a waiting list, you may want to put your name on it even if you are not completely ready to make a decision about long-term care. When you do make a decision, be sure to understand all of the terms of the contract, including the financial agreement. Looking over the documents with a lawyer before you sign may be helpful.

Relocating will cause a substantial change for the person with Alzheimer’s as well as the caregiver. Working with a caregiver can help you plan for and adjust to the move. Having a support system is important during this time.

Making visits to people with Alzheimer’s is very important, even though they may not remember who the visitors are. The value lies in human connection and social activity. Some ideas for people who are planning a visit to a person with Alzheimer’s disease are the following:

• Visit at a time of the day when the person is at his or her best. You may want to bring an activity to do, such as a familiar book to read or a family photo album to browse, but be prepared to give up the activity if necessary.
• Remain calm and quiet. Try not to use a loud tone of voice, and refrain from talking to the person as if he or she were a child. Be considerate of the person’s personal space, and try not to get too close if he or she seems uncomfortable.
• Make eye contact and call the person by name to get his or her attention. Remind the person of who you are if he or she does not remember you.
• Do not argue with the person if he or she is confused. Respond to the feelings being communicated, and subtly distract the person by bringing up a different topic if necessary.
• Try not to take it personally if the person does not recognize you, acts unkindly, or responds angrily. The disease causes confusion that the person is responding to; it is not your fault.

Safety Issues

It is very important to consider safety when caring for a person with Alzheimer’s disease. Accidents are possible even if plans are made and adhered to. A couple ways to minimize dangerous situations are making sure your home is safe and preventing the person from wandering or driving when skills decline.

Home Safety

People who are providing home care for senior citizens with Alzheimer’s must examine their homes thoroughly to identify and change possibly dangerous objects or setups. The creation of a safe environment can minimize dangerous, stressful situations. Here are some things to do when preparing to provide in home care:

• Put in secure locks on outside doors and windows, especially if the person tends to wander. Install a keyed deadbolt or additional lock higher or lower on the door. A new latch or lock might help if the person can open the door due to its familiarity to him or her. Conversely, removing locks on bathroom doors will ensure that the person does not accidentally lock him or herself into the bathroom.
• Install childproof latches on kitchen cabinets and cupboards as well as places where you keep cleaning supplies and other chemicals.
• Make sure medications are labeled and locked away. Keep dangerous objects like knives, lighters, matches, and guns out of reach. Put away and secure anything that poses a threat to safety, both inside and out.
• Maintain a tidy, well-lit environment. Remove scatter rugs or other objects that might cause the person to slip and fall.
• Think about installing an automatic shut-off switch for your stove to minimize the risk of burns or fire.
• If the person goes out, make sure he or she is carrying identification and is wearing a medical bracelet. If he or she becomes lost and cannot effectively communicate, this will let people know the person’s identity and alert them as to his or her medical condition. Make sure to have a recent picture or video of the person in case he or she gets lost.
• Ensuring safety is one of the most important tasks of caregiving. People with Alzheimer’s sometimes wander away from their homes and caregivers, so knowing what to do to prevent wandering is of utmost importance.

Driving

After making the difficult decision that someone with Alzheimer’s is no longer capable of driving, sharing the decision with that person should be done carefully and sensitively. The person may become upset, but it is extremely important to consider his or her safety as well as the safety of others on the road. Here are some ideas to help you decide whether someone with Alzheimer’s should no longer drive and to guide your communication with that person:

• Look out for signs that the person can no longer drive safely, such as becoming disoriented in familiar places, driving too fast or slow, not heeding traffic signs, or becoming angry or confused.
• When you tell the person about your decision, try to be sensitive to the person’s feelings, but remain firm in your request that he or she not drive. It is also important to be consistent when you have made a decision-even on a “good day,” do not let the person drive.
• Ask for help from a doctor. The doctor may be seen as more of an authority figure, and the person may be more willing to stop driving. The doctor may be willing to write a “prescription” to stop driving as well as to call the Department of Motor Vehicles to request a reevaluation of the person’s driving ability.
• If it becomes necessary, take away the car keys. If holding onto keys is important to the person, substitute a different set of keys.
• If nothing else seems to be working, you may want to disable the car or move it to a place where the person can no longer see it or access it.

Caregiver Support

When learning that a loved one has been diagnosed with Alzheimer’s disease, you may become stressed, frightened, and overwhelmed. Some helpful tips for dealing with the new diagnosis are listed below.

• Ask the doctor questions you have about Alzheimer’s, including which treatments might be the most useful in alleviating the symptoms or controlling behavioral problems.
• Certain community groups offer classes to teach caregiving problem solving and management techniques.
• Locate a support group where you can talk about your concerns and emotions. Fellow members might have ideas and resources to share based on their own experiences. If you would like to find a support group but would rather stay at home, there are many support groups online.
• Map out your schedule in order to identify times in which you can create a normal routine to make activities run more smoothly. If certain times of the day are better for the person with Alzheimer’s in terms of behavior and emotions, try to plan your schedule to make the most of those times with the person. The person’s behavior may change from day to day, so be prepared to be flexible and change your schedule as needed.
• Think about using adult day care or in home health care services to allow time for your own relaxation. By using these services, you can have a break from the demands of caregiving while knowing that the person is safe and cared for.
• Try to plan ahead. This may mean collecting financial and legal documents, exploring long-term care options, and figuring out which services are covered by health insurance and Medicare.

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