Category: Resources


We Have MOVED!

we have moved

 

Dear blog readers,

Caregiver 2.0 is merging with the Alzheimer’s Association – Greater Michigan Chapter’s sister blog “Alzheimer’s Activities”. The blog will contain helpful tips and ideas for engaging a person with dementia in activities, as well as caregiving strategies and news. Come visit us at the new website (http://alzheimersactivities.wordpress.com/).

Thanks and hope to see you there!

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clinical trials

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.

What is an Adult Day Program?

adult day program dancing

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.

Getting Started

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:

Center clients

  • 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?

Assessment

  • 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.

Activities

  • 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?

adult day program puzzle

Personal care

  • Will the center’s staff help with grooming, toileting, eating, showering and other personal care tasks?

Nutrition

  • 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?

Health Services

  • 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?

Therapy

  • Will the center help arrange physical, occupational, or speech therapy?
  • Are there therapists onsite or on call?

Counseling

  • 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?

Special Needs

  • Is the center equipped to deal with someone who uses a wheelchair, is hearing or visually impaired or is handicapped in another way?

Operations

  • 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?

Cost

  • 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?

Facility

  • 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?

Staff

  • 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!

 

 

 

 

Asian grandparents and grandchild

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.

ALZConnected

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.

Alzheimer’s Navigator

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.

 

 

The Memories Project

It has been just over a month since “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” was released. So far, the demand has been overwhelming, the reviews extremely positive, and a second printing has been ordered!

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

Since I was fortunate enough to be selected as a contributor, I have a few extra copies available. Starting today at noon ET, through Friday noon ET, you can enter a raffle for a chance to receive a complimentary copy of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.”

Note: You must click on the Rafflecopter link below to be registered for the contest. Rafflecopter is a popular, safe contest platform. You can login through Facebook or with an email address. Follow the prompts on the form to enter the raffle.

Enter the book giveaway

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sad senior man

As the population ages, the issue of elder abuse becomes more and more prevalent. Elder mistreatment (i.e. abuse and neglect) is defined as intentional actions that cause harm or create a serious risk of harm (whether or not harm is intended) to a vulnerable elder by a caregiver or other person who stands in a trust relationship to the elder. This includes failure by a caregiver to satisfy the elder’s basic needs or to protect the elder from harm.

Unfortunately, we simply do not know for certain how many people are suffering from elder abuse and neglect. It appears that female elders are abused at a higher rate than males and that the older one is, the more likely one is to be abused.

Signs of elder abuse may be missed by professionals working with older Americans because of lack of training on detecting abuse. The elderly may be reluctant to report abuse themselves because of fear of retaliation, lack of physical and/or cognitive ability to report, or because they don’t want to get the abuser (90% of whom are family members) in trouble.

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WARNING SIGNS OF ELDER ABUSE

• Bruises, pressure marks, broken bones, abrasions, and burns may be an indication of physical abuse, neglect or mistreatment.

• Unexplained withdrawal from normal activities, a sudden change in alertness, and unusual depression may be indicators of emotional abuse.

• Bruises around the breasts or genital area can occur from sexual abuse.

• Sudden changes in financial situations may be the result of exploitation.

• Bedsores, unattended medical needs, poor hygiene and unusual weight loss are indicators of possible neglect.

• Behavior such as belittling, threats and other uses of power and control by spouses are indicators of verbal or emotional abuse.

• Strained or tense relationships, frequent arguments between the caregiver and elderly person are also signs.

• It’s important to remain alert. The suffering is often in silence. If you notice changes in personality, behavior or physical condition, you should start to question what is going on.

PREVENTING ELDER ABUSE

• Learn when and how to report abuse.

• Get help for commonly seen “tricky situations” involving possible abuse of elders and adults with disabilities.

• Learn about the agencies and organizations that respond to reports of abuse.

•Learn what some communities and multidisciplinary teams are doing to prevent abuse from occurring.

• Explore how the many fields and organizations that serve elders and adults with disabilities may play a role in abuse intervention and prevention.

What to learn more about elder abuse? Visit the National Center on Elder Abuse website by clicking here.

As the Alzheimer’s Association, we advocate and give voice for those who can no longer speak for themselves. Your voice is the most powerful tool to fight this disease on Capital Hill.

In 2014, the National Institutes of Health (NIH) will spend about $5.4 billion on cancer research, nearly $3 billion on HIV/AIDS research; about $2 billion on cardiovascular disease research; and about $1 billion on diabetes research. Meanwhile, the NIH will spend just $566 million on Alzheimer’s research. We have made great strides in developing effective treatments for other chronic illnesses. Experts say Alzheimer’s disease will require a similar level of investment in order to help us find compelling interventions, and ultimately, a cure for this devastating disease.

 

 

NIH Research Funding 2014

What can you do?

  • Educate yourself about the issues at http://www.alz.org.
  • Find and contact your local chapter at http://www.alz.org. The Greater Michigan Chapter’s website is http://www.alz.org/gmc. The Greater Michigan Chapter serves more than 60 counties in Michigan, including Wayne, Oakland, Macomb, St. Clair, Sanilac, and Huron.
  • Meet with your members of Congress locally to discuss legislative issues.

 

 

Be the catalyst that helps to propel us into a future without Alzheimer’s disease! Sign-up to become an advocate today!!

 

 

24/7 Harry L. Nelson Helpline

The Alzheimer’s Association is available for you any time, day or night, for reliable information and support.

Our 24/7 Harry L. Nelson Helpline allows people with Alzheimer’s disease or dementia, caregivers, families and the public to:

  • Speak confidentially with our master’s-level care consultants for decision-making support, crisis assistance and education on issues families face every day.
  • Learn about the signs of Alzheimer’s and other dementia.
  • Find out about local programs and services for individuals with dementia, caregivers, family and friends.
  • Get general information about medications and other treatment options, and legal, financial, and care decisions.
  • Receive help in their preferred language through our translation service, which accommodates more than 170 languages and dialects.

To learn more about how the Alzheimer’s Association 24/7 Helpline can assist you, call us at

1-800-272-3900

Prefer to check us out online? Click here.

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