Caregiver Resources

Wandering Prevention

As every caregiver knows, each person with dementia has different needs and exhibits different behaviors. For this very reason, be prepared for your family member to wander. Just because someone has never wandered before is no reason to assume they won’t start. Wandering is one of the most dangerous behaviors exhibited in dementia, because the person can be lost or injured. Of course, if your loved one is a regular wanderer, you already know that you have to be vigilant in protecting their safety.

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Encourage movement, exercise, and activity.

Encourage movement, exercise, and activity. Make the person’s walking behavior a shared activity, or allow the person to wander in a safe, controlled area. Any physical activity, like walking, is beneficial to the dementia patient, and indulging this behavior safely may prevent more dangerous episodes.

Be aware of hazards.

Be aware of hazards. Take a look around your home and immediate surroundings for dangerous elements, such as fences, gates, swimming pools or other bodies of water, bus stops, heavy traffic areas, steep stairways, and high balconies. Make any necessary adjustments to your environment.

Communicate with your loved one.

Communicate with your loved one. Remind the impaired person of who they are, who you are, and that they are in a safe place. Constantly reassure the person, who may feel lost, homesick, and abandoned. Try to determine if any particular event triggers the wandering episodes; become a detective.

Involve your neighbors.

Involve your neighbors. Inform your neighbors of your family member’s condition and keep a list of their names and phone numbers handy. Teach them how to approach your loved one in a non-threatening way, such as using their name, identifying themselves, approaching from the front, and using gentle touch to guide and orient them.

Keep a current photo.

Keep a current photo. Remember to keep a current, clear snapshot of your loved one, along with a written physical description. This will be useful for involving your neighbors, if they don’t already know your family member, and is absolutely essential for any police involvement.

Utilize available agencies.

Utilize available agencies. Call the Alzheimer’s Association at 1-800-660-1993 to inquire about their Safe Return program. Consider getting an identification bracelet engraved with the person’s diagnosis or “memory impaired” through Medic Alert at 1-800-432-5378.

Adapted from materials produced by the Alzheimer’s Association.

Overcoming Resistance

Sometimes even the simplest request (getting dressed or going to a doctor’s appointment) can turn into a battle if your loved one resists. The most important thing to remember in this situation is that there are different underlying reasons for the resistance. The following are common causes of resistance and suggestions for how to handle them.

Denial

Denial is a defense mechanism that everyone uses, and your loved one is no exception. Some dementia patients deny that there is any problem. When confronted with resistance based on denial, try to rephrase your demand. “I agree that you feel great and don’t need to go to the doctor. But isn’t Dr. X such a good doctor? Last time you went he was so nice! I would feel so good if we could go see him, just to make sure that your blood pressure is okay. I would feel good knowing that your health is perfect.”

Fear

Fear is often the cause of resistance, but may often look like anger or frustration. When dealing with someone who is resisting out of anxiety or fear, try first of all to empathize with their feelings and then express your own. “Are you worried the doctor might find something wrong? You must be afraid she’ll say something you don’t want to hear. I love you and just want you to go in and get checked out, so we can be sure that everything is okay.”

Pride

Pride is very important to your impaired loved one, and you must be sensitive to the fact that dementia leads to an incredible loss of control for your family member. Try to find small ways to let the person have control. “I know you don’t enjoy going to the doctor’s, but let’s go out to lunch afterwards. Would you like to go to Restaurant A or Restaurant B after your appointment?”

Timing

Sometimes certain changes can just be too much too soon for your loved one, even if it’s something as simple as having an in-home worker come each day. If your loved one is simply not ready, consider waiting on, but not giving up on, your idea. “I can see you’re not ready to have someone come every day to visit. But let’s just have Sandy over today for coffee and we can get to know her a bit. You and I will talk about having her come over more regularly next week.”

Disagreement

Like everybody else, a person with dementia will sometimes simply disagree with your idea. It is important to address their refusal, whether they express it with body language, behavior, or an emphatic “no!” As most caregivers have already discovered, trying to change an impaired person’s mind by arguing, reasoning, or citing evidence is a lost cause. All you will accomplish is to upset the person, escalate the conflict, and cause stress for yourself. An important first step in dealing with simple disagreement is for you as caregiver to take a moment to stop and reflect on how you’re going to proceed. Stay calm and respond to the person’s refusal by acknowledging and validating their feelings. “Oh, you don’t like that idea at all, do you?” Next, agree on something—anything! The goal is not to have the person agree with your initial suggestion, but to establish common ground to build upon.

Loss

A person with Alzheimer’s has experienced many losses, and continues to do so throughout the course of their disease. One of the most major losses is the ability to clearly communicate about their feelings. Any event may trigger overwhelming feelings of loss and grief. Unable to deal with these feelings, the impaired person may respond by resistance. The best way to handle this is validate the person’s emotions and show caring with love, a soft voice, warm feelings, and a gentle touch. After giving the person some emotional comfort, offer them some control over the situation they were resisting. “I know it’s hard for you to give up driving, but I’ll drive you to your appointment today. Afterwards, we’ll go out for a snack. Do you want an ice cream cone or a piece of pie?”

Stubborn Personality

It is common for family members and other caregivers to dismiss an impaired person’s refusal as a result of “stubbornness.” This may be perfectly true, but it is not productive to focus on it. If there is a pattern of family dynamics or other behavior patterns which might come between you and your loved one, consider having a third person intervene in the situation, such as another family member, a paid caregiver, or a physician. And don’t blame yourself! You are doing a great job and should be proud of yourself.

Isn’t Alzheimer’s disease just losing your memory?

No. Although memory loss is the most widely known symptom of Alzheimer’s, dementia is the decline of all intellectual functioning, which can include learning, judgment, language skills, and eventually physical decline.

What’s the difference between Alzheimer’s disease and dementia?

Dementia is the medical term for the loss of intellectual functioning, characterized by loss of memory, cognitive functions, and judgment. Alzheimer’s disease is the number one cause of dementia. Other dementing illnesses include Huntington’s, Parkinson’s, and AIDS-related dementia, and Pick’s disease, among others “Senility” is an outdated term to describe what we now know to be dementia. Senility is not a normal or healthy part of aging.

Isn't Alzheimer’s disease just another way of saying that someone’s crazy?

No. Alzheimer’s disease is a cognitive disease that results in memory loss, deterioration of intellectual function, and loss of judgment. Although people with Alzheimer’s disease can sometimes exhibit behavior that seems strange, it is due to the brain damage from the disease, and is not a symptom of mental or emotional illness.

Not that many people get Alzheimer’s Disease, right?

Wrong. Approximately five million people in the United States alone have Alzheimer’s disease. Alzheimer’s disease is the fourth leading cause of death for adults.

What is someone with Alzheimer’s disease like? How do they behave?

Behavior depends on the individual and the stage of the disease. Contrary to popular stereotypes, people with dementia are not usually crazy or violent. In fact, keeping a person with Alzheimer’s active and stimulated is one of the biggest tasks for a caregiver. Without a caregiver’s intervention, an Alzheimer’s patient can get depressed or isolated easily. Some of this is the function of the disease process itself, but some of it stems from a deep sense of loss. As you might imagine, people with dementia get confused very easily and often mistake one person for another. Here at Alzheimer’s Services of the East Bay, we find it best to respond to odd questions or statements by trying to discern the emotion underneath. For example, if someone is at home but keeps saying they want to go home, they are probably feeling lost or scared. Telling them “I’m here with you, you’re going to be okay,” is much more productive than saying, “But you are home!” over and over. People with Alzheimer’s often repeat the same stories or ask the same questions over and over, a function of their memory loss. It is best to remain patient and answer the question in a low-pitched, gentle voice. Respond to the emotion underneath the question or story. You can also try to redirect the person’s attention. Here at ASEB, our trained staff are very gentle, patient, and creative in helping our participants, yet they also know that a technique that worked in the morning may not work at night. Working with Alzheimer’s means always looking for clues and constantly adjusting your approach. The patient can’t change, so the staff member has to.

Isn’t getting senile just a part of getting old?

Absolutely not. Senility is an outdated term to describe what is now known as dementia. Occasionally, the term senility will still turn up, even in medical circles. Dementia is not a normal or healthy part of aging, and is caused by a number of syndromes, including Alzheimer’s, Parkinson’s, AIDS, and strokes.

I’ve heard Alzheimer’s disease describes as a “walking funeral.” Is that what it’s really like?

Of course, no one is happy to hear a diagnosis of Alzheimer’s for themselves or a loved one. Losing cognitive functioning and memory progressively is very painful. However, here at ASEB, we strongly believe that there is life after diagnosis. When a caregiver learns to take each moment as it come, and accept who their loved one is now, there can be moments full of love, laughter, and fun. People with Alzheimer’s disease may not be exactly the people they were before the disease, but they are indeed people—with emotions, interests, and personality.

Do people really die from Alzheimer’s disease, or do other things kill them first?

Yes, people do die from Alzheimer’s—it is a progressive, debilitating, and terminal disease. Because the victims of Alzheimer’s are usually elderly, some do die from unrelated conditions, such as diabetes, hypertension, or stroke. But Alzheimer’s disease is the fourth leading cause of death in adults. There is no cure or treatment yet.

What causes Alzheimer’s disease?

No one knows at this point. There have been many well-publicized research breakthroughs lately, but the answer (and the cure) is still some time away. Despite recent discoveries, researchers still don’t know what causes Alzheimer’s. There is no treatment or cure yet. If you know someone who you think might have Alzheimer’s, it is important to have a clinical diagnosis. Some forms of dementia are, unlike Alzheimer’s, reversible and treatable.

Is there a cure for Alzheimer’s disease? When will there be?

Yes. There is treatment and We as ASEB specializes in this treatment.  There have been many well-publicized research breakthroughs lately. However, despite recent discoveries, researchers still do not know what causes Alzheimer’s.

How long does someone live after getting Alzheimer’s disease?

Individuals can live from five to twenty years after a diagnosis of Alzheimer’s. That’s why careful financial and legal planning is so crucial for families.

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