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Scientists have made enormous strides in understanding how Alzheimer’s disease affects the brain. Many of these insights point toward new therapies and improved ways to diagnose the disease and monitor its progression.
At any given time, dozens of studies are recruiting participants to help explore these exciting new approaches. Every clinical study contributes valuable knowledge, regardless of whether the experimental strategy works as hoped.
Without study participants, however, progress is stalled, and scientists report growing difficulty finding enough volunteers to complete these studies.
If you or a friend or family member has Alzheimer’s or another dementia — or even if you don’t — you can help advance knowledge about this illness. By participating in a clinical study, you can help new treatments, preventive strategies and diagnostic tools to become a reality.
What is a clinical study?
A clinical study is any medical research project involving human volunteers. Research into improved approaches usually begins with laboratory work or animal studies. Following early success with these methods, new strategies must demonstrate their effectiveness in the final proving ground of human testing.
What is a clinical trial?
A clinical trial is a specific type of study in which one group of volunteers gets an experimental treatment, while a similar group gets a placebo ( a look-alike “sugar pill”). Scientists evaluate the effect of the new treatment by comparing outcomes in the two groups.
Phases of clinical trials
The U.S. Food and Drug Administration (FDA), which regulates medical products and drugs, oversees a rigorous process for testing experimental treatments that is based on sequential phases. The treatments must perform well enough in each phase to progress to the next one. If a treatment performs adequately in all stages through Phase III, the FDA reviews the data and determines whether to approve the drug for use in general medical practice.
- Phase 1 trials, the first stage of human testing, typically enroll fewer than 100 volunteers. These studies are primarily concerned with assessing the safety of a drug and whether it has risks or side effects.
- Phase II trials enroll up to a few hundred volunteers with the condition the drug is designed to treat. These studies provide further information about the safety of the drug and focus on determining the best dosage. Scientists also watch for signs of effectiveness, but Phase II trials are generally too small to provide clear evidence about benefit.
- Phase III trials may enroll several hundred to thousands of volunteers, often at multiple study sites nationwide or internationally. Phase III trials provide the chief evidence for safety and effectiveness that the FDA will consider when deciding whether to approve a new drug.
- Phase IV trials, also called post-marketing studies, are often required by the FDA after a drug is approved. The trial sponsor must monitor the health of individuals taking the drug to gain further insight into its long-term safety effectiveness and the best way to use it.
How to find a study near you
Alzheimer’s Association TrialMatch is a clinical studies matching service. TrialMatch uses information about your diagnosis, location and preferences to match a person with current clinical studies. Finding the right trial can be done over the phone or online. Once a match is found, and with your permission, a TrialMatch specialist will contact you to answer questions.
If you would like to consider participating in a clinical study, call 1-800-272-3900 or visit alz.org/trialmatch. More information about clinical studies can also be found at clinicaltrials.gov.
Do you know what an adult day program is, and are you aware of the plethora of services their patrons can benefit from? Adult day programs are one of the most underutilized community resources, and yet, they provide valuable socialization and intellectual stimulation for the person with dementia. Exercise, meals, or even transportation to and from the program, are among some of the services that may be available. Perhaps most importantly, day programs offer much needed respite for the primary caregiver.
Want to learn more? Read below.
What are Adult Day Programs/Centers?
Adult day centers (a.k.a. adult day programs, adult daycare) offer group respite care that is provided outside the home and designed to meet the individual needs of the participants and to support strengths, abilities, and independence. Throughout the day, participants have the opportunity to interact with others while being part of a secure, structured environment. Daily activities may include music, recreation, discussion, and support groups. Hours of service vary, but centers are often open 7-10 hours per day, 5-6 days per week. Transportation may be available. Adult day centers also give caregivers a break from caregiving. While the person with dementia is at a center, the caregiver will have time to rest, run errands, or finish other tasks. As a result, he or she may return to caregiving responsibilities feeling refreshed and renewed.
Adult day centers can vary. Consult a variety of sources to find a center that is suitable for your individual. Plan a visit to observe and ask questions. While visiting, notice if individuals are engaged in activities and if staff members treat each person as an individual with unique needs. Keep an open mind. You may want to visit without the person with dementia, then visit together for lunch or an activity.
But…what if my person does not want to go?
Know that initial resistance is not uncommon, but these feelings are often overcome through repeated exposure and positive experiences. It is sometimes helpful for caregivers to refer to the day program as going to school, work, a senior center, visiting with friends, etc., in order to encourage participation. Reassure the person if they express anxiety and reinforce the pleasant interactions/activities that await them at the day center. Consider using a center’s services at least twice a week for a month before making a final decision. If the adult day center does not seem to be working out, consider reintroducing it again after some time.
Questions to Ask
When choosing an adult day center, there are a number of factors to consider, including the staff, environment, programs and type of services available. The following list of questions may be helpful when checking out a day center:
- Does the center provide services for people with different types of impairments as well as those in good physical health?
- Does the center provide specific services for individuals with dementia?
- Will the center evaluate the person’s needs, interests and abilities?
- How will this evaluation be accomplished and how often will it be repeated?
- Will medical needs, social and family history, cognitive functioning and social skills be assessed?
Programs and Services
Be sure the center offers the programs and services that you and the person with dementia need. The following are some of the specific services you may want to investigate. Keep in mind that few adult day programs offer all the services described below, and not all of the services are necessary for a program to be of high quality.
- Does the center offer activities that the person can participate in and enjoy?
- Are people with dementia separate from other participants or included in general activities?
- Are participants involved in suggesting activities?
- Is the schedule flexible and based on needs and interests?
- Will the center’s staff help with grooming, toileting, eating, showering and other personal care tasks?
- Does the center provide nutritious meals and snacks? You may want to sample a meal.
- Can the center accommodate special diets or provide a culturally specific menu?
- Will the center provide blood pressure checks and physical, dental, foot, eye and ear examinations?
- Will the center dispense medication and/or offer medication reminders?
- Will the center help arrange physical, occupational, or speech therapy?
- Are there therapists onsite or on call?
- Will the center provide support for clients and families? For example, can they offer guidance on outside resources and arrange for supportive care in the home?
- Is the center equipped to deal with someone who uses a wheelchair, is hearing or visually impaired or is handicapped in another way?
- Who is the owner or sponsoring agency?
- How many years have they been in operation?
- Does the center have a license, certification or accreditation (is appropriate in that state)?
- What are the hours of operation?
- Is there a minimum number of hours required?
- What are the policies regarding lateness or absence?
- What is the daily cost?
- What types of payments (e.g. Medicaid, long-term care insurance, military veteran’s benefits) are accepted?
- Is there financial aid or a sliding scale rate — where caregivers pay according to ability or income?
- Are there any additional charges for specific services?
Location and transportation
- Is the center easy for you to get to?
- Does the center offer its own transportation services?
- Does the center recommend specific transportation providers?
- What is the overall appearance and quality of the facility?
- Is it warm, inviting and free of clutter?
- Is there adequate space to accommodate activities for individuals with different needs?
- Is there space available for outdoor activities?
- Is the furniture clean and comfortable?
- Are there secured areas for outside walking?
- What are the staff qualifications?
- What is the staff to client ratio?
- Do staff members have dementia-specific training?
- Are individuals with dementia treated with respect and dignity?
- Does the center have a physician, nurse, or health care professional on staff or on call?
- If the center uses volunteers, are they adequately trained and supervised?
- Is staff warm and friendly to individuals, family members and caregivers?
It is also important to reevaluate your need for adult day services. At some point the person with dementia may need more care than the center can provide. Center staff and support groups can help evaluate your needs for future care.
Want to learn EVEN MORE and explore adult day programs that are nearby you? Call our 24/7 Harry L. Nelson Helpline at 1-800-272-3900, day or night!
Although the person with Alzheimer’s might have once been able to handle a gun, serious accidents can occur. The use of firearms requires complex mental skills that are usually lost in early dementia.
- One half of all American homes have one or more firearms.
- Studies indicate that physically aggressive behavior has been found to occur in 30 to 50 percent of people with Alzheimer’s disease. The presence of firearms could contribute to the serious consequences of such behavior. Assault by persons with dementia can result in psychiatric hospitalization.
- Studies also found that in more than 60 percent of the homes where guns were present, family members reported that the guns were loaded or that they were unaware of their loaded status. This was despite dementia severity, severity of depression, or perceived incompetence of the person with dementia living in the household.
Suggested gun safety tips
- Although a person with Alzheimer’s might have once been able to handle a gun, serious accidents can occur. The use of firearms requires complex mental skills that are affected by dementia.
- Guns must be put in a safe place. The best course of action is to lock the gun in a cabinet or drawer, or remove the gun from the house. Don’t allow the patient unsupervised access to a gun.
- It is not sufficient just to unload guns and rifles or place a trigger lock on them.
- Even without a gun, ammunition is still dangerous if subjected to the right conditions: a fireplace, stove, furnace, oven, microwave oven, disposal, hammer, etc. Remove weapons and ammunition.
- Ask for outside assistance in talking with your loved one. If necessary, ask your doctor or clergy person to explain to the affected person’s hunting buddies that hunting is now too dangerous for him. Ask local police or sheriff’s department if they can help dispose of a gun or rifle if you do not know how to do so.
- As with all such issues, the person with dementia should be involved as much as possible in the decision to remove or lock-up a gun.
- Your family member accidentally happens upon an unloaded gun. He realizes that he should give it to you immediately. Off he goes looking for you, carrying the gun and walking down the corridor of your condominium or apartment complex. What would the neighbors think? What would the police do, maybe not realizing that your family member has Alzheimer’s disease?
- The same scenario could happen with knives or other weapon collections, even if they are far from the ammunition that would make them operable. Also consider toy guns that look real enough to be convincing, even to the police, or real pistols with locks that can still be picked up and carried.
Bathing is a necessary aspect of life. However, when someone is caring for a loved one affected by a progressive dementia like Alzheimer’s, bathing can seem like an insurmountable challenge. Below are some reasons why difficulties may occur during the bathing task, and also some tips on how to overcome these challenges.
Reasons for resisting bathing:
- May not know what bathing is for
- May feel afraid or cold
- May experience discomfort at the lack of modesty
- May have had a traumatic experience related to water (e.g., drowning, burns from scalding water)
Tips to help with bathing:
- Have toiletries, towels and washcloths available in advance to make the bathing process easier
- Keep the room temperature warm and reduce bright lights
- Make the person feel in-control — involve and coach through each step of the bathing process
- Experiment to determine if the person prefers showers or tub baths and what time of day is best
- Respect the person’s dignity — hold a towel in front of the body, both in and out of the shower
- Use a washcloth to soap and rinse hair in the sink; reduces the amount of water on the person’s face
- If spousal caregiver, you may need to shower together
- If not working, try bathing later or on another day
- Bathing habits and preferences (time of day, bath vs. shower, favorite products)
- Physical limitations that might cause bathing to be uncomfortable (e.g. arthritis)
- Cognitive level and behavioral impairments
- Level of comfort/familiarity with assistant
Making the bathroom safe:
It’s important to make the bathroom as safe and comfortable as possible. Install grab bars, place non-skid mats on floors, watch for puddles and lower thermostat on your hot-water heater to prevent scalding injuries. Also, take care to never leave the person with dementia alone in the bathroom, use products made of non-breakable materials, and keep sharp objects (i.e. tweezers, scissors) out of reach.
The summer season is almost upon us, and for many, this is the time of year to let our hair down and take that vacay! For those that are caring for someone with Alzheimer’s disease or a related dementia, however, the challenges associated with traveling can be daunting. Below are some tips and strategies for making your next excursion as stress and worry-free as possible.
Tips for a calm traveling experience:
- Plan ahead
- Learn to recognize the warning signs of anxiety and agitation and have a plan to address them. Discuss this plan with the person with dementia.
- Try not to overload the person with a lot of directions or too much information.
General travel considerations:
- Environmental changes can trigger wandering or confusion. Enroll in MedicAlert + Alzheimer’s Association Safe Return, a 24-hour nationwide emergency response service for individuals with dementia who wander or have a medical emergency. Call 888.572.8566 or visit alz.org/safety to enroll. Those already enrolled should notify MedicAlert + Safe Return of travel plans.
- It may be helpful to stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible.
- 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.
- When selecting destinations, consider those that have easy access to emergency health services and pharmacies.
- Consider the needs and desires of the person with dementia as you plan your trip; elaborate sightseeing trips or complicated tours may cause anxiety and confusion.
- If you will be staying in a hotel, consider informing 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.
- Travel during the time of day that is best for the person. For example, if he or she is more agitated in the late afternoon, try to avoid traveling at this time.
What to keep in mind for visits to family and friends:
Be sure to prepare friends or family members for the visit by explaining dementia and the changes it may have caused. Go over any special needs and explain that the visit could be short or that you may need to change activities on short notice. Some additional considerations:
- It may be helpful to stay as close to your normal routine as possible. For example, bathing and eating times should be on a similar schedule to that followed at home. Eating in familiar settings, such as at a dining room table, may be less confusing than eating in a crowded restaurant.
- Be realistic about abilities and limitations. Allow for extra time when scheduling activities.
Suggestions for air travel:
Moving through an airport requires focus and attention, as the level of activity can be distracting, overwhelming and difficult to understand. Please consider the following when traveling by air:
- Avoid scheduling flights that require tight connections.
- Even if walking is not difficult, consider requesting a wheelchair so that an airport employee is assigned to help you get from place to place. Most airlines ask for at least 48 hours of notice.
- Contact the Transportation Security Administration (TSA) at least 72 hours prior to travel for information about what to expect during the security screening. While at the airport, remind the person what he or she can expect and inform the TSA agent at the security checkpoint that the person has dementia.
- Do not hesitate to ask for assistance from airport employees and in-flight crew members.
- If the person needs help using the restroom, look for companion care bathrooms so you can more easily assist.
- Stay with the person at all times.
Caring for a person with Alzheimer’s or dementia often involves a team of people. Whether you help provide the daily care (e.g., assisting with meals and bathing), participate in the decision making (e.g., making care arrangements and legal and financial plans) or you simply care about a person with the disease — there’s much to do and plenty to know. But it doesn’t have to be a lot of work to find the resources and support you need. The Alzheimer’s Association and Alzheimer’s and Dementia Caregiver Center — alz.org/care — can help.
Check out any of the online resources below for more information.
A social networking community where people with Alzheimer’s and related dementia, caregivers and others affected by the disease can share questions, experiences and practical tips via message boards or create private groups organized around specific topics.
An interactive online tool for people living with dementia and those who participate in providing care and making care-related decisions. This assessment tool evaluates needs, outlines action steps and links the user to Alzheimer’s Association chapter programs and local services.
Community Resource Finder
A comprehensive database of local programs and services, housing and care options, and legal experts all in one location, allowing users to quickly search and find access and support.
Care Team Calendar
A free, personalized online tool, powered by Lotsa Helping Hands, that makes it easy to organize family and friends who want to help with caregiving and share activities and information among the care team.
Join teams from around the world on June 21, The Longest Day®, to honor the strength, passion and endurance of those facing Alzheimer’s disease with a day of activity. Select an activity you love, from swing dancing to swimming, and make an impact by raising funds and awareness to advance the efforts of the Alzheimer’s Association. Register by June 11 to receive your participant kit in time for The Longest Day.
Alzheimer’s & Brain Awareness Month
The Alzheimer’s Association is moving our awareness month from September to June. This new month will be called Alzheimer’s & Brain Awareness Month (ABAM).— a time to shine a purple light for the millions of individuals world-wide and all the family members and caregivers locally affected by Alzheimer’s disease. We need your help to honor those struggling with this disease every day by mobilizing friends, families, neighbors, co-workers and customers to help bring an end to Alzheimer’s disease. The time is now to commit to going purple during Alzheimer’s & Brain Awareness Month (ABAM). The end of Alzheimer’s starts now. The End of Alzheimer’s Starts with YOU.
- Turn Facebook purple by changing your profile picture to our END ALZicon.
- Turn your office, school or place of worship purple for the month of June.
- Show the power of purple by introducing and/or utilizing a purple product.
|*Here’s how to change your profile picture in three easy steps.1. Right click on the END ALZicon and save to your computer.
2. Log into your Facebook account. Move your cursor over your current profile picture and select “Change Picture.”
3. Use the browse function to locate and upload the END ALZgraphic.
- Announce your commitment to ending Alzheimer’s through social media and internal communications.
- Share these numbers with someone who needs to know about the Alzheimer’s epidemic.
- Join the Alzheimer’s Association Early Detection Alliance (AEDA) to educate your employees about the warning signs of Alzheimer’s, the importance of early detection and resources available to help them.