Caregiver’s Guide to Understanding Dementia Behaviors

understanding

Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer’s and related diseases have a progressive brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, or take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior. This Fact Sheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia. Ten Tips for Communicating with a Person with Dementia We aren’t born knowing how to communicate with a person with dementia—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.

  • Set a positive mood for interaction.

Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.

  • Get the person’s attention.

Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.

  • State your message clearly.

Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.

  • Ask simple, answerable questions.

Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.

  • Listen with your ears, eyes and heart.

Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.

  • Break down activities into a series of steps.

This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.

  • When the going gets tough, distract and redirect.

When your loved one becomes upset, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”

  • Respond with affection and reassurance.

People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.

  • Remember the good old days.

Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.

  • Maintain your sense of humor.

Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

What kind of Assistive Technology is right for your loved one?

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The area of assistive technology has grown tremendously in recent years, and many manufacturers now provide a wide range of products and devices. It can be confusing, however, to determine which products might be right for your loved one. Here are a few basic tips to help you in this task:
 
Focus on the actual tasks your loved one wants or needs to do when choosing devices. While this might seem obvious, it’s easy to get drawn into buying a product that looks good but doesn’t really address your loved one’s needs. 
 
Generally, it is best to pick the simplest product available to meet the need. Simpler devices are often easier to use, less expensive, and easier to repair and maintain than more complex devices. For example, if someone does not have difficulty remembering to take their medications, but gets confused about which pills to take at which times, a weekly pill organizer that can be filled by a caregiver would solve the problem. Purchasing an automated pill dispenser with alarms to remind the person to take medications would be more complicated than necessary and would certainly be more expensive than the simpler pill organizer.
Ask experts that provide care to your loved one, like rehabilitation specialists or physical and occupational therapists, about which type of technology might be best.
 
Ask other people with disabilities what products they have found to be helpful.
 
Ask to use the device on a trial basis to see if it is truly going to meet your loved one’s needs.
 
Ultimately, your loved one’s opinion about a certain piece of assistive technology is the most important. The device needs to be comfortable, attractive, and simple to use.
 
The following website provides comparisons of  assistive devices and is a good resource for consumers trying to decide which equipment and devices  to purchase:
 
Technology for Long-Term Care
(213) 371-2354, www.techforltc.org
 
Where can you buy Assistive Technology?
With so many vendors and manufacturers producing assistive technology, it can be confusing to decide which products to buy. There are a few public agencies which keep a complete list of assistive technology products and manufacturers and can help you find the right products for your loved one. Because these agencies do not sell equipment, they are a more trustworthy source of information than contacting manufacturers directly. The following national agencies can be contacted by phone or you can browse online for products:
 
Center for Assistive Technology
& Environmental Access
(800) 726-9119, www.assistivetech.net
 
ABLEDATA
(800) 227-0216, www.abledata.com
 
Project LINK, Department of Occupational
Therapy, University of Florida
 
In addition to the national programs above, every state and territory has a State Technology Assistance Project that has information about assistive technology, financial assistance to buy equipment and assistive technology loan programs. ABLEDATA (see contact information above) can connect you with someone in your state, or you can contact the following agency which oversees the State Technology Assistance projects:
 
Rehabilitation Engineering and Assistive Technology Society of North America, (RESNA)
 

Remaining at Home

Remaining at Home 

 

Studies show that older Americans prefer to stay in their own homes if they possibly can. It is no surprise, then, that most care of older persons is provided at home, whether by family or by hired help. While many consider in-home care preferable to institutional care, there are public benefits and legal considerations, some of which may be quite unexpected.

To begin with, family members shoulder most of the burden of caring for the elderly at home. Being the primary caretaker for someone who requires assistance with activities of daily living, such as walking, eating and toileting, can be a consuming and sometimes exhausting task. One important consideration when one family member has the sole responsibility of caring for a parent or other older relative is the question of equity with other family members. For example, is the family member being fairly compensated for her work? If the older person is living with a child, does the elder help pay for the house? If the care is taking place in the elder’s home, does the child have an ownership interest in the house?

For parents with only one child, such arrangements may not be so complicated, but if the parent has more than one child, it can be difficult to know what’s fair. An arrangement that seems equitable today may not seem that way after a child has devoted, say, five years to the care of the parent. And if a plan is set up that is fair for five years of care, what happens if the parent suddenly moves into a nursing home during the first year? With no planning for such eventualities, the care of an older person can foster resentment and guilt among family members. Fortunately, most elder law attorneys are skilled in helping families devise creative solutions to such problems.

At the same time, state and federal government officials are slowly recognizing that home care can be more cost-effective than institutional care. This means that, depending on the state, financial or other assistance may be available for those who choose to remain in their homes despite declining capabilities.

Getting Outside Help

Public and private agencies offer a variety of home care services that may be available to you:

  • Home health care, either part-time or 24-hour care
  • Personal care and homemaking services, such as shopping, cooking and cleaning
  • Services delivered to the home, such as meals programs, transportation and home repair
  • Adult day care centers that offer more intensive services than senior centers. There are more than 2,000 such centers around the nation and they are usually affiliated with churches or non-profit community agencies. (See below for more information).
  • Money management
  • Respite services. These programs provide caretakers a periodic break. A home care professional or aide substitutes for the caretaker for a specified period of time. (See below for more information).

Medicare and Medicaid provide some coverage of the medical portion of home health care. Although the coverage is often inadequate, when combined with other resources available to the client and his family, it may be enough to keep a fragile older person at home for a longer period of time. For an explanation of the coverage of home health care available under Medicare, click here. Medicaid offers very little in the way of home care except in New York State, which provides home care to all Medicaid recipients who need it. Recognizing that home care can cost far less than nursing home care, a few other states—notably Hawaii, Oregon and Wisconsin–are pioneering efforts to provide services to those who remain in their homes.

There are thousands of private home care agencies around the nation. About half of these are Medicare or Medicaid Certified Home Care Agencies, meaning that these two federal programs will reimburse for services provided by the agency if the services are covered. Such certification also means that the agency has met certain minimum federal standards regarding patient care and finances. Home care agencies can also gain accreditation from private accrediting organizations. The three major accrediting groups for home care agencies are the Community Health Accreditation Program http://www.chapinc.org; the Joint Commission on Accreditation of Healthcare Organizations http://www.jcaho.org; and the National Association for Home Care http://www.nahc.org

Non-medical services are also available to help older persons remain independent. The Older Americans Act funds more than 10,000 senior centers and makes grants to State and Area Agencies on Aging to provide services to seniors that include Meals-on-Wheels, transportation, respite care, housekeeping and personal care, money management, and shopping. Services are usually free but staffing may be limited. To find Area Agencies on Aging programs across the country, visit the Eldercare Locator Web site at http://www.eldercare.gov or call the nationwide, toll-free Eldercare Locator at 1-800-677-1116. In many cases, these agencies may offer case management and coordination services.

The new profession of “private geriatric care manager” has evolved to help coordinate services for seniors. Private geriatric care managers usually have a background in either social work, nursing, or psychology and they are experts in helping older persons and their families make arrangements for various kinds of long-term health care. These care managers evaluate an older person’s needs, review the options available, and monitor care once it is being delivered. To find a geriatric care manager in your area, visit the Web site of the National Association of Professional Geriatric Care Managers at http://www.findacaremanager.org.

 

 

 

   
Frequently Asked Questions About Retirement Living

 

 

Memory Loss With Aging: What’s Normal, What’s Not

Image result for memory loss with aging

How does the brain store information?

Information is stored in different parts of your memory. Information stored in the short-term memory may include the name of a person you met moments ago. Information stored in the recent memory may include what you ate for breakfast. Information stored in the remote memory includes things that you stored in your memory years ago, such as memories of childhood.

How does aging change the brain?

Beginning when you’re in your 20s, you begin to lose brain cells a few at a time. Your body also starts to make less of the chemicals your brain cells need to work. The older you are, the more these changes can affect your memory.  Aging may affect memory by changing the way your brain stores information and by making it harder to recall stored information.

Your short-term and remote memories aren’t usually affected by aging. But your recent memory may be affected. You may forget names of people you’ve met recently. These are normal changes.

Things to help you remember

  • Keep lists.
  • Follow a routine.
  • Make associations (connect things in your mind), such as using landmarks to help you find places.
  • Keep a detailed calendar.
  • Put important items, such as your keys, in the same place every time.
  • Repeat names when you meet new people.
  • Do things that keep your mind and body busy.
  • Run through the ABC’s in your head to help you think of words you’re having trouble remembering. “Hearing” the first letter of a word may jog your memory.

How can I tell if my memory problems are serious?

A memory problem is serious when it affects your daily living. If you sometimes forget names, you’re probably okay. But you may have a more serious problem if you have trouble remembering how to do things you’ve done many times before, getting to a place you’ve been to often, or doing things that use steps, like following a recipe.

Another difference between normal memory problems and dementia is that normal memory loss doesn’t get much worse over time. Dementia gets much worse over several months to several years.

It may be hard to figure out on your own if you have a serious problem. Talk to your family doctor about any concerns you have. Your doctor may be able to help you if your memory problems are caused by a medicine you’re taking or by depression.

Other Organizations

National Institute on Aging Information Center
http://www.nia.nih.gov/
800-438-4380

HEALTH CARE DECISIONS

making better healthcare decisions is more than flipping a coin

How will health care decisions be made if you no longer have the ability to make such decisions for yourself?

This is typically accomplished through the execution of an advance directive. An advance directive is a written or oral instruction relating to the provision of health care when an adult becomes incapacitated.

 

The Patient’s Right

New York has long recognized that an adult of sound mind has the right to consent to or refuse a recommended treatment. In several cases decided during the 1980s, the New York Court of Appeals established that the right of competent adults to refuse medical treatment, including life sustaining treatment, is protected under both the Due Process Clause of the State Constitution and the common law right of informed consent.

Where the patient is unable to make decisions, such treatment may be withheld only if there is clear and convincing evidence of the patient’s wishes. No one, not even a family member, may authorize the withdrawal or withholding of medical treatment for an incompetent patient in the absence of such clear and convincing evidence.

The clear and convincing evidence standard is an extremely difficult one to meet, however. In part because of the difficulty of this standard and in part to address a range of issues arising from advances in medical technology, New York adopted the Health Care Proxy Law. The law became effective on January 18, 1991 and grants competent adults the right to appoint someone they trust to make decisions about medical treatment on their behalf. The appointment is made on a health care proxy form, sometimes referred to as a health care power of attorney. The person appointed to make health care decisions is known as a health care agent.

Legal Requirements for Designating a Health Care Agent

The health care proxy form must:

  • Identify the principal (person making the appointment);
  • Identify the person being appointed as health care agent;
  • State that the principal intends the agent to have authority to make health care decisions on the principal’s behalf; and,
  • Be signed and dated by the principal in the presence of two adult witnesses who also must sign the proxy.

Another person may sign on behalf of the principal if the principal is unable to do so provided the signing is at the principal’s direction, in the principal’s presence, and in the presence of two adult witnesses.

 

Frequently Asked Question

  1. How do I revoke a health care proxy?
    •  A health care proxy can be revoked by:
      • Notifying the agent or a health care provider, orally or in writing or by some other act evidencing an intent to revoke the proxy; or,
      • Executing a subsequent health care proxy; or,
      • Where the health care agent is the principal’s spouse, upon divorce or legal separation from the spouse.

Memorial for Carol Kamine-Brown

COHME, Inc. honors the memory of our Director Emeritis Carol Kamine-Brown who was able to further build on  the vision of our founder Lucy Rosengarten to ensure that COHME and the clients and home health aides can flourish and thrive. As Executive Manager for COHME for over 14 years , Carol brought her social work skills and business sense to her role and helped to ensure COHME’s success . Carol had extensive experience with the elderly and cognitively impaired population within the homecare as well as the hospital setting and brought a wealth of skills and caring to the agency.  As we continue to provide rewarding opportunities to the home health aides, a scholarship in Carol Kamine-Brown’s name has been set-up by COHME’s Board of Directors to provide our home health aides with financial assistance towards completing  degrees in nursing school, training for being a  Certified Nursing Aide, and  support towards traveling expenses.

Carol was a dedicated and caring person who to the end was very focused on COHME’s mission of providing home care with the highest  standards. She tirelessly promoted the provision of excellent home care to the frail and elderly in New York City, while providing excellent jobs for our employees.

To conclude I leave you with something Carol would tell me from time to time… “You can always give the love, the care, and the support that you may not have received and you will always be better in the end because life is full of adventure.” And she encouraged the staff to embrace it.

If you would like to donate to COHME and to the Carol Kamine Brown scholarship please see the donation link posted on the website.

Nicole Mazyck-Sellers

 

Awards and Testimonials

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COHME’s dedication to the support of its home health aides has received special mention in the prestigious ElderCareGiving website.

sample Ms. Joanna Leefer writes, “An unencumbered aide is a better aide and more loyal to an agency that takes her welfare into consideration. Agencies like COHME are developing programs to remedy the aide’s problems. COHME has gone so far as to hire a social worker devoted to working with the aides. They have found suitable housing, gotten them on food stamps, and found proper health care for them and their families.”

ElderCareGiving is a web site that helps seniors and their families find the best possible senior care alternatives.