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December 2012
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                                                  December 2012

Couple ImageTravel Safely this Season

Having dementia does not mean that it’s necessary to stop participating in meaningful activities such as travel; it just requires planning to ensure safety, comfort and enjoyment for everyone.

Whether taking a short trip to see friends and family or traveling a far distance for vacation, it’s important to weigh the costs and benefits of travel for a person with dementia, based on needs, abilities and preferences. If travel is not appropriate, talk to family and friends about scheduling another time for them to visit the person.

General travel guidelines

Stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible. Try to visit places that were familiar before the onset of dementia

  • Changes in environment can trigger wandering. Be sure to enroll in MedicAlert® + Alzheimer’s Association Safe Return®, a 24-hour nationwide emergency response service for individuals with dementia that wander or who have a medical emergency. The enrollment phone number is 1.888.572.8566. Those already enrolled should notify MedicAlert + Safe Return of travel plans.
  • Evaluate options for the best mode of travel. Based on needs, abilities, safety and preferences, decide what would provide the most comfort and the least anxiety.
  • Avoid planning a trip where emergency health services and pharmacies to refill prescriptions are not easily accessible.
  • Keep travel simple and manageable: Plan a short trip and avoid multiple stops.
  • Avoid elaborate sightseeing trips or complicated tours, which may cause anxiety and confusion.
  • If you will be staying in a hotel, inform the staff ahead of time of your specific needs so they can be prepared to assist you.
  • Have a backup plan in case your trip needs to change unexpectedly. This may mean purchasing traveler’s insurance if you have booked flights or hotels.
  • Create an itinerary that includes details about each destination. Give copies to family members or friends you will be visiting, or to emergency contacts at home. Keep a copy of your itinerary with you at all times.
  • Travel during the time of day that is best. For example, if the late afternoon increases agitation, avoid traveling at this time.
  • Have a bag of essentials with you at all times that includes medications, your travel itinerary, a comfortable change of clothes, water, snacks and activities.
  • Remember to pack necessary medications, up-to-date medical information, a list of emergency contacts and photocopies of important legal documents.
  • Allow plenty of time for rest. Don’t over-schedule.
  • Learn if there are services available at your destination by contacting your local Alzheimer’s Association.
  • If traveling involves too many risks for the person with dementia, call the Alzheimer’s Association to help you find an alternative plan that allows the person to remain at home

Let us be your direct link to help

When you have a question about Alzheimer’s disease or what to do in caring for a loved one with the disease, please call or email us:

800.272.3900
cleveland-helpline@alz.org

Upcoming educational classes for caregivers

In This Issue

Travel Safety

Kids & Alzheimer's

Featured Recipe

Activities with Kids

Find a Clinical Trial

What is FTD?

 

Featured Recipe

Instant Creamy Chicken Soup

Ingredients:

  • 1 package instant creamy chicken soup (ex. Lipton)
  • 1/4 cup water
  • 1/2 cup nutritional supplement (ex. Boost or Ensure)
  • 1/8 tsp salt
  • Pepper to taste

Directions:

  1. Place instant soup in large microwavable mug or bowl
  2. Blend in water, supplement, salt and pepper
  3. Microwave for 2 minutes or until hot
  4. Stir and serve

10 activities children can share with a person with dementia

  1. Bake cookies.
  2. Take a walk.
  3. Put a puzzle together.
  4. Weed a garden or plant flowers.
  5. Color or draw pictures.
  6. Make a scrapbook of family photographs.
  7. Read a favorite book or story.
  8. Eat a picnic lunch outside.
  9. Watch your favorite TV show together.
  10. Listen to or sing old songs.

Encourage your child to come up with ideas.

Make sure the activity is a good match for the abilities of both individuals.

 

Helping kids understand Alzheimer’s and changes in behavior

Alzheimer’s disease can have a big impact on every member of the family, including children. Each child will react differently to someone who has Alzheimer’s and will likely have questions about what is happening. It’s important to answer these questions openly and honestly. It will also help to share with them the changes the disease might bring, now and in the future.

Keep open lines of communication
Good communication is the best way to help your child deal with the changes that are happening.  Let your child know their feelings are normal and create opportunities for your child to express themselves and talk it through.

Answer questions honestly
Respond simply to questions in an age-appropriate way. Try not to sugar coat the message. Children are excellent observers and often aware if an answer doesn’t sound right. Prepare the child for changes as time progresses. A person with dementia may look healthy on the outside, but on the inside, the brain is not working properly. Also, make sure your child understands why you might have less time to spend together.

Let your child know it’s not his or her fault
Dementia can cause a person to direct confusion, fear or anger at the child. If this happens, be sure the child knows the person did not mean to act that way. People with dementia have good days and bad days. Make sure your child does not feel responsible for the kind of day it is. Those who care for the person with dementia might sometimes seem tired, frustrated, sad or short-tempered.

Teach your child about the disease
Begin sharing information about the disease and its symptoms as soon as you can. Encourage your child to ask questions. Be patient and use words that are easy to understand. Reassure your child that just because a person in the family has Alzheimer’s, it does not necessarily mean that he or she or other family members will get the disease, too.

Help your child learn more about Alzheimer’s
Great progress has been made in scientific research. Let your child know that better treatments and even a cure could be discovered by the time he or she is grown. Your child might find comfort in learning more about the disease and how the brain works.

The Alzheimer’s Association website features a kids and teens section (alz.org/kids) offering information and support, as well as videos of other children and teens facing the disease in their families. You can also contact the Association for more information and recommendations for books and other resources geared toward children and teens.

If your child expresses feelings of helplessness, work together to find a way to get involved. For ideas, contact the Alzheimer’s Association 24/7 Helpline at 800.272.3900.

How to find clinical trials

Step one: Check out TrialMatch®!

TrialMatch is a free service that makes it easy for people with Alzheimer's, caregivers, families and physicians to locate clinical trials based on personal criteria (diagnosis, stage of disease) and location.

Right now, we are in the midst of an exciting time. More than 100 research studies pertaining to Alzheimer's disease and related dementias are underway and recruiting volunteers. Alzheimer's Association TrialMatch lets you search these trials quickly and easily. It also narrows results to those trials where there is a reasonable chance to be accepted for enrollment. This saves time for both you and the researcher. Enrolling the right participants helps researchers accurately measure the effect of a treatment.

Importance of clinical trials

Clinical trials are the engine that powers medical progress. Through clinical trials, researchers test new ways to detect, treat and prevent Alzheimer's disease and related dementias. Without clinical trials, there can be no new treatments or cures.
Over the last 15 years, scientists have made enormous strides in understanding how Alzheimer's disease affects the brain. Currently, the drugs available for the treatment of Alzheimer's only temporarily improve the symptoms of the disease; they do not stop the damage to brain cells that causes Alzheimer's to progress. But scientists believe that in the near future, therapies and treatments that slow or stop the progression of the disease will be available

Ground-breaking research is going on that could have a measurable impact on the lives of current and future Alzheimer's patients. But a lack of volunteers for Alzheimer's clinical trials is significantly slowing down this research and the development of new Alzheimer's treatments. Recruiting and retaining trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer's treatments.
Participation in clinical studies provides an opportunity to advance and accelerate medical research and to contribute to the better health of future generations. Use the Alzheimer's Association TrialMatch service to find a clinical trial now.

What is FTD (Frontotemporal Disorder)?

Frontotemporal dementia (FTD) is a group of disorders caused by progressive cell degeneration in the brain's frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears).

The cell damage caused by frontotemporal dementia leads to tissue shrinkage and reduced function in the brain's frontal and temporal lobes, which control planning and judgment; emotions, speaking and understanding speech; and certain types of movement.

FTD includes a range of specific disorders with different core symptoms. But there's significant symptom overlap, especially as these disorders progress. The disorders grouped under FTD fall into three broad categories (discussed below). Scientists have identified a range of microscopic brain abnormalities implicated in FTD. The overall term for the brain cell damage and tissue shrinkage associated with FTD is frontotemporal lobar degeneration.

FTD used to be called Pick's disease after Arnold Pick, a physician who in 1892 first described a patient with distinct symptoms affecting language. Some doctors still use the term "Pick's disease." Other terms you may see used to describe FTD include frontotemporal disorders, frontotemporal degeneration and frontal lobe disorders.

FTD was once considered rare, but it's now thought to account for up to 10 to 15 percent of all dementia cases. It's still believed to be less common than Alzheimer's disease, vascular dementia and Lewy body dementia.

In those younger than age 65, FTD may account for up to 20 to 50 percent of dementia cases. People usually develop FTD in their 50s or early 60s, making the disorder relatively more common in this younger age group. Sign up for our enews to receive updates about Alzheimer’s and dementia care and research.

Key Differences Between FTD and Alzheimer's

  • Age at diagnosis may be an important clue. Most people with FTD are diagnosed in their 50s and early 60s. Only about 10 percent are diagnosed after age 70. Alzheimer's, on the other hand, grows more common with increasing age.
  • Memory loss tends to be a more prominent symptom in early Alzheimer's than in early FTD, although advanced FTD often causes memory loss in addition to its more characteristic effects on behavior and language.
  • Behavior changes are often the first noticeable symptoms in bvFTD, the most common form of FTD. Behavior changes are also common as Alzheimer's progresses, but they tend to occur later in the disease.
  • Problems with spatial orientation — for example, getting lost in familiar places — are more common in Alzheimer's than in FTD.
  • Problems with speech. Although people with Alzheimer's may have trouble thinking of the right word or remembering names, they tend to have less difficulty making sense when they speak, understanding the speech of others, or reading than those with FTD.
  • Hallucinations and delusions are relatively common as Alzheimer's progresses, but relatively uncommon in FTD.

Learn more: http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp


 

Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.