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If you would like to contribute to our blog, please email your article, curriculum vitae, resume, or professional summary containing your credentials and experience with Alzheimer’s disease, and your photograph to blog@lightbridgehealthcare.com. LightBridge encourages family caregivers, as well as professional caregivers, healthcare professionals, researchers, teachers and community leaders, to submit their voices to our conversation.
Communicating with Persons with Alzheimer’s Disease
by Maria C. Appelzoller, PhD
read about Dr. Appelzoller
Edited by Mindy Kim-Miller, MD, PhD
Posted on March 18, 2006
RECENT POSTINGS:Communicating with Persons with Alzheimer’s DiseaseBrain Circulation in Alzheimer DiseaseAchieving a Balance
Can You Take Care of Yourself and Them Too?
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One of the most tragic symptoms of Alzheimer’s disease (AD) is the worsening ability to communicate. Deterioration of verbal communication is evident as pauses in conversation increase, word substitutions become more prominent, and “empty” communication is the norm. Poor memory, poor judgment, poor comprehension of spoken and written material, and general disorientation or confusion are all well documented in persons with AD. Given the progressive nature of the illness, the individual experiences a gradual decline in both expressive (ability to speak) and receptive (understanding other’s speech) vocabulary. As this decline becomes evident to the individual he/she may react by showing frustration, embarrassment, anxiety, and/or withdrawal. Thus, communication becomes challenging both to the individual and the caregiver.The key to communicating with a person with AD is to communicate at the person’s level of understanding. Communicating requires the use of verbal, nonverbal, and emotional techniques. It also requires both a giver and a receiver.When conversing with someone who has AD, patience becomes an important element for successful communication. When it is difficult to understand the person’s expressions, the caregiver may stop trying to understand and simply take over the decision-making for the person rather than attend to the person’s cues. Often times, caregivers are so preoccupied with doing the right thing that they misinterpret what the person really wants. In many cases a hug, a kiss, or a gentle touch may be what is needed to communicate effectively.Persons with AD show significant deficits in emotional processing ability. It may not always be easy to know how or why they are feeling the way they do. It is important that we are aware of this emotional deficit factor.

Nonverbal and/or emotional communication can sometimes muddle the verbal message. An individual may be saying something verbally that contradicts the emotional or nonverbal message. It is important to be sensitive to your own body language as well as the other person’s. Posture (closed arms or open and relaxed arms), facial expressions (frown or big friendly smile), how we approach someone (stomping hurriedly into their room or offering a gentle hand in assistance), quality of touch (soft, gentle, slow, sudden, controlling, or harsh), the pace of your conversation, tone of voice (anger or happiness, harshness or softness), and the pace in which we walk into their room (fast, quickly, and determined, or slow, carefully and caringly) are all determinants of how a conversation will progress.

The caregiver’s level of stress affects the person with AD and will often solicit a negative reaction. Persons with AD may become agitated and aggressive in response to our stress. It is imperative that we contain/control our stress level in front of a person with AD.

Be creative and flexible; find ways to maximize the communication abilities of the person with AD. One way of communicating with them is to ask him/her about their past. Persons with AD appreciate someone who acknowledges their reality, and their past is usually a very large part of their present. If the individual is anxious or frightened, you may want to respond with calm reassurance. Maintain a friendly facial expression and move carefully and deliberately so as not to startle them.

Table 1: Strategies for Communicating with Persons with Alzheimer’s Disease

  • Gain the listeners attention before beginning to talk. Approach the person from the front, identify yourself and address him/her by name.
  • Be a creative listener. Listen with all you have to hear what the person is saying. Pay attention to both verbal and nonverbal cues, and try to maintain eye contact when speaking. Remember that a person with AD may compensate for their language-based difficulties by becoming very sensitive to and adept at nonverbal communication, including gestures, tone of voice, facial expressions, and touch.
  • Knowing when a person is (or is not) open to nonverbal communication (touch for example) is of utmost importance. Incorrectly gauging a person’s reception may cause agitation and other difficult behaviors.
  • Don’t give quizzes to persons with AD. Questions such as “Who am I?” or “Do you remember me?” cause nothing but frustration and anxiety to a person with limited cognitive abilities. Instead, you can say, “Good morning Linda. It’s Mary, your daughter.”
  • Keep things simple. Many persons with AD can process only one thought at a time. Use short and simple sentences, and break tasks down into clear and simple steps. Speak slowly, a bit more loudly and distinctly, but do not shout.
  • Avoid open-ended questions. Rather than asking “What would you like to eat?” questions like, “Would you like some chicken?” allows the person to respond with yes or no. Allow plenty of time for the person to respond.
  • Offer praise and encouragement whenever possible.
  • Keep distractions to a minimum. Stick to a topic for a while. Turn off the radio or television and close the door, if possible.
  • Speak to the person face to face, even if that means kneeling or sitting on the floor for individuals who are in wheelchairs.
  • Remember not to speak about the person in front of them to other people as if they are not there.
  • Avoid harsh words or a critical tone. Make sure to speak in positive terms, without making orders or demands.
  • Stay positive. Avoid a “no” response. “No” makes it more difficult to gain the confidence of the person and will usually solicit a negative response from the person. Communicate in the positive, and redirect the conversation if need be.
  • Try not to contradict or argue with person. Confirm the individual’s reality. Telling him/her otherwise will only upset the person.
  • Do not infantilize the person. Using a childlike intonation pattern is demeaning and may be perceived as such by the person with AD.
  • Use hand gestures but keep your hands away from your face. Avoid rumbling or talking with food in your month. Show the person with your hands what you want them to do.
  • If the individual yells at you, calls you names, or makes outlandish remarks – don’t take it personally. Look for something in the person’s environment that could be bothering them, and work with the person to resolve the issue.

Table 2: Tips for Communicating with Persons with AD

  • Modify question-asking.
  • Avoid open-ended questions (the person’s ability to generate ideas and think of possibilities diminishes).
  • Ask questions that include limited choices (e.g., would you like to go for a ride or stay home?).
  • Break down tasks into simple steps (give only one step at a time).
  • Repeat yourself. Once is not enough. Be redundant and restate critical facts several times to help relay messages.
  • Be explicit and direct. Persons with AD have difficulty processing implied information. Be literal. Say what you mean.
  • Provide additional cues to help the person with communication.
  • Use eye contact.
  • Avoid noisy and busy surroundings.
  • Do not pretend to understand vague and nonsense words.
  • Adapt to your listener. Try to understand their words and gestures. Adapt to their way of communicating don’t force them to try to understand your way of communicating.
  • Be patient. Encourage the person to continue to express his/her thoughts, even if they are having difficulty. Be careful not to interrupt, don’t criticize or try to correct.

Brain Circulation in Alzheimer Disease
By Gustavo C. Román, MD
read about Dr. Román
Adapted by Mindy Kim-Miller, MD, PhD
Posted on March 31, 2008
 
The brain’s blood vessels (or cerebrovascular system) are vital for proper brain function. Recent evidence suggests that endothelial cells (cells that make up the walls of blood vessels) are an important factor in the cause, not only of vascular dementia (VaD), but also of Alzheimer disease (AD). The endothelium is the final common pathway for a number of risk factors that cause oxidative stress and contribute to brain ischemia (i.e., damage due to toxic products or to lack of nutrients delivered in the blood supply); in turn, poor circulation leads cognitive impairment and eventual dementia. Damage to the brain’s endothelial cells occurs in aging, hypertension, diabetes, and smoking.The brain has the largest system of endothelial cells compared to other organs in the body. Endothelial cells have complex functions to regulate the circulation in response to the local metabolic needs of the brain. The endothelium also plays a role in the brain’s immune response, formation of clots and new blood vessels, inflammation, and maintenance of stable conditions (or homeostasis). Aging seems to lower the protective effect of certain hormones (such as estrogen) on the brain’s blood vessels.Unique to the brain is the blood brain barrier (BBB), a barrier formed by special cells along the blood vessel that isolates the brain from the rest of the body. Multiple transport systems of the BBB assure adequate nutrients to the brain and eliminate waste products and abnormal proteins. The brain also has a special type of fluid, cerebrospinal fluid (CSF), which bathes and flows around it. CSF cushions the brain and helps control its environment. Alteration of CSF circulation causes a form of dementia called normal pressure hydrocephalus that may be treatable by a neurosurgical procedure called CSF shunting.The brain requires a regular supply of oxygen and glucose to maintain its metabolic needs. These requirements are assured by a constant flow of blood through the brain. The brain receives about 15% to 20% of the blood pumped from the heart and uses about 25% of the total oxygen used by the entire body. A total lack of blood flow to the brain for 8 to 10 seconds causes loss of consciousness. But little is known about the effects of chronic, low blood flow to the brain, particularly on cognition. Aging results in a progressive decline of heart and blood vessel function that blunts the regulation of blood flow to the brain. In addition to decreased endothelial function, aging causes tortuosity (lengthening, twisting, looping, and coiling) of blood vessels. Interestingly, this tortuosity has not been associated with AD.Aging also results in progressive stiffening and widening of the large blood vessels of the body. This results in weaker and less blood flow to the brain, kidney and heart. One study found significantly less blood flow to the brains of older adults (ave. age ~79 yr) compared to younger adults (ave. age ~26 yr). The decline of brain blood flow in elderly people seems to be a common element in both AD and VaD.

The importance of vascular risk factors in dementia and the interdependent relationship between brain function and brain blood flow have been amply confirmed. It is clear that cerebrovascular disease is an important contributor to the severity of cognitive impairment in people with AD. Aging of the heart, aorta (large blood vessel extending from the heart), and cerebrovascular vessels has an enormous impact on brain function and probably contributes to the increased risk for AD in people with hypertension, diabetes and other diseases associated with blood vessel damage.

These and other relevant topics were discussed during the third congress of the International Society for Vascular Behavioral and Cognitive Disorders (Vas-Cog) held in San Antonio, TX, in 2007. Regrettably, one of the main conclusions of the congress
was the worldwide lack of interest on the cerebrovascular system in elderly patients with dementia. The Declaration of San Antonio, TX, (Vas-Cog Executive Committee on behalf of the General Assembly. Declaration of San Antonio, Texas, July 14, 2007. Neuroepidemiology. 2007;28:191-192) lists the main areas of missing interest, as follows:

  • Prevention and early treatment of vascular disease are possible at reasonable cost, but most countries rather pay the expenses of hospitalization and loss of labor and life resulting from the effects of untreated vascular risk factors.
  • Although cerebrovascular disease and cardiovascular disease are the most common contributors to cognitive decline in the elderly, there is a dearth of studies on the relation of these problems with AD and with other neurodegenerative disorders.
  • Almost no clinical studies on hypertension, diabetes, hyperlipidemia, and other causes of stroke have addressed the effects of these treatments on the prevention of vascular cognitive decline and VaD.
  • Despite the fact that 1 in 3 stroke survivors are left incapacitated with VaD, few stroke trials include cognitive end points in the evaluation of new treatments for stroke.

We hope that governments around the world, scientific funding agencies and the pharmaceutical industry will recognize the importance of cerebrovascular circulation and implement Public Health and research programs to prevent the deleterious consequences of vascular injury on the brain. Advances in the field of aging and cerebrovascular disease can only result in better management of patients with dementia and more effective preventive measures.
This was adapted with permission from the editorial:
Roman GC. Alzheimer disease research: Have we forgotten the cerebrovascular circulation? Alzheimer Dis Assoc Disord. 2008;22:1-3.


Achieving a Balance
Can You Take Care of Yourself and Them Too?

By Mary Guerriero Austrom, PhD
read about Dr. Austrom
Edited by Mindy Kim-Miller, MD, PhD
Posted on April 7, 2008
 
Caring for a loved one with a demanding disorder is stressful at the best of times. When the caregiver is an adult child of the care recipient with a family of his/her own, job, and so on, the caregiving role can become very demanding and burdensome. Can you effectively care for your family member and still take care of yourself and all of your other responsibilities? The answer is yes you can, but not all at the same time. With appropriate planning and allowing time to care of yourself, most family members can provide excellent care to an adult care recipient. The following coping strategies have been found to be very helpful when caring for someone with dementia or any chronic disorder.Be realistic. Consider if you can realistically do everything you are planning, thinking, or willing to do. Think through the ramifications of your decisions before acting. If you are thinking about moving a frail or cognitively impaired parent or family member in with you, first answer the following questions:

  • Does that family member want to move in with you?
  • Do you have enough space in your home for another person?
  • Have you discussed this with your spouse and any children who might still be living at home?
  • Do you have enough time to provide the necessary care and supervision to keep the person safe?
  • Can your budget handle the additional costs of providing care?
  • Have you considered other options or services available in your community that can help provide care and supervision? This might allow the person to remain in his/her own home longer.

Once you have thought through a particular issue, adjust your expectations accordingly. If you decide to move your parent in with your family, do not expect that things will go smoothly from the very beginning. Give everyone time to adjust to the changes in living arrangements and your time.

If you are feeling overwhelmed, ask yourself:

  • In the bigger scheme of things, how important is this?
  • Does this activity (for example, a bath) have to happen now, or can it wait a few hours or a day?

If the issue is bathing or changing clothes, and the older person is resistant, it is usually not life threatening, so let it go. Remember it is easier to change the subject, walk away, take a deep breath, and count to 10, than it is to reason or rationalize with a person who has dementia.

Be good to yourself; reward yourself. Remember that you cannot take care of anyone else if you do not first take care of yourself. Take time for your own needs and interests and try not to feel guilty about it. When caregivers do so, many report feeling better and are actually able to provide care longer. Do not give up everything important to you in order to assume caregiving duties. Eventually these duties will end or change. Therefore keeping yourself connected to others is vital for your own long term well-being. Do not ignore your own physical health. Take time to go to your doctor. Eat right, exercise and get enough sleep.

Plan…plan…plan…then plan some more. You can never be overly prepared! The more contingencies you are prepared for, the fewer stressors and surprises you will encounter. For example, find out about services available in your community, visit day care centers and long-term care facilities, and talk to an elder law attorney before our really need to. You can make better decisions and remain more objective if you are not in a crisis situation. A wise caregiver once said, be prepared for the worst but pray for the best. Once your plans are in place, take one day at a time.

Communicate with everyone! Try to include all family members in planning meetings and discussions. You can avoid or avert potential family conflicts if everyone is kept informed. Remember that everyone has their own history, perspective and expectations. Have everyone share their perspective, but try not to point fingers or lay blame. Try to encourage working together to provide the best care for your family member with dementia.

Maximize the older person’s independence (and everyone else’s too!) Do not try to do everything for your loved ones with dementia; allow them to maintain as much independence for as long as possible. Too often caregivers increase dependence by trying to do too much for the care recipients. Do not worry about their clothes matching or appearance of their makeup if it creates an argument or frustration. Maximize the fact that they can still participate in their own care such as dressing, feeding or toileting. Do not focus on what they can’t do.

Ask other family members to help out with chores and caregiving responsibilities. You may need to adjust your own expectations and standards of housekeeping. Try not to criticize the efforts of others or feel that you could have done a better job yourself. Remember, if it not life threatening, let it go.

Keep your sense of humor. Look for the joy in life and try to laugh a little every day. There is always a bright side to things, even when everything appears to be quite glum. Try to focus on at least one positive, joyful thing every day. It can be as simple as appreciating the sunshine, a child’s giggles, or birds singing. A positive attitude has been shown to have beneficial effects on one’s coping ability and overall quality of life.

Positive self-talk. Focus on all the things you do well, and forgive yourself and others for mistakes. Learn from mistakes and move on. Apologize to your care recipient if you lose your patience or temper. Try telling yourself…I am a good person. I am doing the best I can. Everyone makes mistakes now and then. I’m sorry and I will do better tomorrow.

Ask for help when you need it. Do not be a martyr! Asking for help is not a sign of weakness but a sign of strength. Try to be very specific about what kind of help you need, and you will be more likely to receive it. For example, if someone offers to lend a hand, ask that person to pick up the dry cleaning, the groceries, or to spend a couple of hours with your care recipient while you are busy. A great idea came from one family caregiver, who kept a jar full of chore cards. If someone offered to help, the caregiver simply had that person pick a card with a chore written on it.

Join a support group. Many caregivers report that they get the best caregiving help from support group members who have had similar experiences. Some caregivers report that it is nice to know that they are not alone or going crazy. If you are interested in finding a support group in your area, consider calling the Alzheimer’s Association at 1-800-272-3900 FREE.