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We are pleased to offer the third of four installments of the Family Caregiver Guide (FCG), which is made possible by a generous grant from Forest Laboratories, Inc. with additional support from the Rowland & Sylvia Schaefer Family Foundation, Inc. The goals of the FCG are to provide caregivers unable to attend training sessions in our office with an improved understanding of the disease; effective communication strategies that improve interactions between the caregiver and the person with dementia; a deeper awareness of and ability to cope with challenging behaviors demonstrated by persons with dementia; and knowledge about safety measures and engaging activities.
Behaviors Have Meaning
Many people who attend the family caregiver workshops ask me “How do I deal with what’s to come in the future?” I wish I could provide a list of effective strategies for every possible scenario but it‘s not that simple. Dementia is a complex disease that affects each person with dementia (PWD) differently. It often catches caregivers off-guard because they are ill-prepared to cope with the wide range of behaviors. The first thing family members need to understand is if you have met one person with dementia, you have met one person. In other words, each person with dementia is unique. Behaviors vary and come and go. Although in every workshop family members may see some commonalities exhibited by their PWD, care can never be standardized.
Utilizing a person-centered care approach is imperative in order to accurately interpret and respond to behaviors demonstrated by the PWD. Knowing the PWD’s personality, key relationships, history, routines, personal preferences and hobbies provides a window into understanding their behavior. Other factors which will provide clues include:
- What stage of the illness is the PWD in?
- Are they suffering from other medical conditions such as hearing, vision, mobility loss or other chronic illnesses?
- What physical approach is taken with the PWD?
- What is the general mood of the PWD?
- Are people talking down to or quizzing the PWD?
- Is the PWD occupied in any other ways?
- Is the environment stable and structured?
- Are people asking the PWD to do tasks that may be too complex?
Let’s examine a story I was recently told by a family caregiver who was extremely stressed by her husband’s behavior.
“Every morning my husband wakes up before five AM and repeatedly asks me, “Where is the laundry? I need to wash and iron the laundry.” He continues to ask about the laundry and it’s driving me crazy. No matter how many times I tell him the laundry is done and he can relax, he is always angry. He yells, criticizes me, and two hours later will apologize for his rage. We go through this scenario daily. It’s exhausting! What should I do?”
What does her husband’s repetitive behavior mean? I asked her to analyze the situation and consider the following questions: What did your husband do for a living? What was his daily routine? Did he have any hobbies? What is his current emotional status? Can you describe his personality?
After she was able to emotionally remove herself from the situation, she was better able to understand its meaning. Her husband owned a dry cleaning business for 40 years, worked six days a week, and his life revolved around his work. He supervised ten employees and was used to being in control. He sold his business shortly after being diagnosed with dementia. His wife learned that using facts and reasoning did not diminish his anger. She needed to adopt a new approach. One morning she asked her husband to help her with the laundry and “inspect” it as it was folded to make sure it was done correctly. They were able to reminisce about his days at the dry cleaning store and shortly thereafter she noticed his anger diminished. He needed a sense of identity—a purpose. He missed feeling useful and now she helped to fulfill his emotional needs
Tom Kitwood, a psychologist and author of “Dementia Reconsidered: The Person Comes First” (1997) reinforces this idea. He states that the main psychological needs of people with dementia are:
- Love
- Occupation
- Sense of identity
- Inclusion
- Comfort
- Attachmen
If you think about it, these are the psychological needs of all people. If they are met, people generally feel a sense of security and well-being. The PWD experiences so many losses in addition to the inability to perform routine tasks and make complex decisions. Eventually they suffer from a profound loss of self. Wouldn’t just one of these losses change your behavior? It is up to family and professional caregivers to understand what is driving the PWD and what their reactions and responses mean. This is by no means easy and requires a certain way of thinking. It also requires flexibility and creative problem-solving: If Plan A doesn’t work, Plan B or even C might be required. This may seem like a full-time job (and it is) but the payoff is rewarding! Caregivers will experience reduced stress and will be able to establish and sustain a newly defined relationship with the PWD.
Before addressing specific behaviors that can be described as problematic, we must first consider our definition of a problem. Is it OK if a PWD likes to wear the same shirt and pants everyday? What if a PWD eats with his or her hands? Is it problematic if a PWD repeats the same question 30 times a day? Is it wrong if a PWD stays up all night and sleeps all day? Should a PWD bathe everyday if they are not incontinent? Is it a problem if a PWD is constantly trying to leave the house and wander?
Answers to these questions may vary and caregivers must consider if the PWD’s behavior is more a problem for the caregiver or one that might potentially place the PWD at risk? The caregiver should change their expectations of the PWD and consider what really matters. Think of it as conducting a cost-benefit analysis: Is it worth placing more strain on an already fragile relationship to argue about clothing? Perhaps you can purchase several of the same types of shirts or pants the PWD likes to wear. Thinking along the same lines, maybe you can purchase or prepare food that is easy for the PWD to handle with their hands as they may no longer be able to utilize silverware properly. Consider it might be OK if the PWD only wants to bathe twice a week. PWD’s new behaviors, routines, and preferences often surprise the caregiver but it is important to realize the caregiver will need to adapt to this new way of life. People with dementia cannot change.
Let’s explore some specific areas that often bring about behavioral challenges, examine the meaning of these behaviors, and provide some effective coping strategies.
It is a good idea for the caregiver or home care worker to start by keeping a journal noting what happened: where the behavior occurred, when the behavior occurred, what was said prior to the behavior occurring, and who was present at the time. Keeping a log that addresses these points, in addition to keeping in mind the personal history of the PWD, will often enable the caregiver to better understand the PWD’s behaviors and effectively develop coping strategies.
BathingBehavioral Challenges and Considerations
- Is the bathroom too cold? Is the water the right temperature?
- Could the PWD be uncomfortable being undressed in front of a home health aide, child, or even a spouse?
- Is it too difficult for the PWD to get undressed, bathe, or wash their hair?
- Is the PWD afraid of falling while getting into the tub?
- Is the lighting in the bathroom too bright or too dim?
- Is the PWD fatigued at this time?
- Might the water be frightening to them?
- Is the shower nozzle spraying water in the PWD’s face
Coping Strategies
Make the bathroom safe. Install grab bars near the toilet and inside the shower. If you have a tub/shower, use a bathtub transfer bench or shower chair inside the bathtub facing away from the showerhead. Get a handheld showerhead to avoid water spraying in the PWD’s face and place temperature controls on hot water to prevent scalding. Remove locks on bathroom doors, utilize non-skid bath mats, and cover radiators. For additional safety tips, visit www.thiscaringhome.org, which has a wealth of safety tips for all areas of the home.
Make bath time an enjoyable experience. Schedule it when the PWD is relaxed and not fatigued, give the PWD a plush bathrobe, and try aromatherapy (only if the PWD likes it) using scents the PWD enjoys. Buy a shower radio and play music the PWD appreciates
Determine if the PWD is uncomfortable being fully exposed. If this is the case, buy a cape or cut a hole in a shower curtain and place it over the PWD. Wash them under the cape from the bottom up. Distract the PWD with an enjoyable conversation that does not focus on bathing. If the PWD seems afraid, validate their emotions and provide reassurance.
Utilize rinse-free products available from the Alzheimer’s Store, which has a wide range of products and activities 2 Family CareGiver Guide 36434alzD2R1_draft3.indd 2 1/7/11 4:10:31 PMfor people in all phases of dementia. Visit www.alzstore.com or call 1-800-752-3238.
Display only the bath products you need as the PWD may mistake a tube of toothpaste as ointment, which could be upsetting to the PWD.
SleepingBehavioral Challenges and Considerations
- Does the PWD: have a routine? Drink caffeinated beverages? Drink a lot of fluids prior to bedtime and therefore need to use the bathroom throughout the night? Have day-night reversal?
- Is the PWD over-medicated or experiencing pain?
- Is the PWD bored or depressed? Are they involved in any activities during the day? Might sleep issues be related to other medical conditions
Coping Strategies
Establish a daytime routine – try having the PWD wake up at the same time each morning (according to their preference) and eat at the same time.
Eliminate caffeinated beverages and limit fluids around bedtime.
Check with the PWD’s primary physician or neurologist about medications and medication interactions. Could the PWD take a different dosage of medication or take it at a different time?
If a PWD is up for days and unable to sleep, consult with their physician. You need your sleep and so does the PWD. You might also consider an overnight social program that runs from the evening through the morning, such as the Hebrew Home for the Aged in Riverdale, for PWD who have different body clocks.
Also consider traditional social day programs which provide the PWD with social interaction and activities. Caregivers should do their homework and visit programs to determine if they will be a good fit for the PWD. For additional information contact the NYC Chapter’s 24-hour Helpline at 1-800-272-3900.
EatingBehavioral Challenges and Considerations
- Does the PWD have cataracts, which could impact their ability to clearly see what they are eating?
- Does the PWD have a toothache? Are dentures ill-fitting?
- Are prescription drugs making the PWD nauseous?
- Has the PWD’s sense of taste been impacted by dementia?
- Is the task of eating too complex? Is the PWD experiencing difficulty utilizing utensils?
- Is the TV on during mealtime?
- Do meals look unappetizing? Does the PWD like the food being offered?
- Is the dining area cluttered or does it contain busy patterns?
- Are you eating in restaurants during peak dining hours?
Coping Strategies
- Address any other medical conditions with individual specialists.
- Try having dentures readjusted or refitted. Accompany the PWD to the dentist. Ask the dentist to keep all communication with the PWD short and simple.
- Eat out at off-hours when restaurants may be less congested.
- Be aware of your home environment. Place chairs across from each other to encourage eye contact and conversation, turn off the TV and engage in conversation.
- Keep the dining table uncluttered and simple.
- Prepare foods that are easy for the PWD to eat on their own such as chicken fingers. Maximize the existing strengths of the PWD.
- Ask the PWD to help you prepare the meal. (Say “Let’s prepare dinner together. I would love your help.
Incontinence
Behavioral Challenges and Considerations
- Is the bathroom easily recognizable, accessible and easy to use?
- Are medications or other medical conditions such as a urinary tract infection (UTI) resulting in incontinence?
- Is the PWD in denial regarding his or her incontinence and unable to accept that they need undergarments?
Coping Strategies
- Paint the door of the bathroom a contrasting color from the wall color. Place a sign on the bathroom door and include a picture of a toilet. Use a toilet seat that is an opposing color to help differentiate the seat from the toilet.
- If the PWD’s health takes a dramatic downward turn, contact their physician to determine if the PWD has a UTI or other medical issue.
- If the PWD becomes suddenly incontinent, contact their physician to discuss medications and possible medication interactions.
- Place a commode in the bedroom in a place which is easily accessible and not a safety hazard.
- Utilize comfortable undergarments. Some products resemble underwear, not diapers.
- Respectfully suggest the PWD use the bathroom prior to a long car ride or outing
Delusions and Hallucinations
Delusions are false beliefs and hallucinations are distortions in a person’s perception of reality. Hallucinations may be sensory experiences in which a person sees, hears, smells, tastes, or feels something that is not there.
Behavioral Challenges and Considerations
- Understand that delusions and/ or hallucinations can frequently occur in people with dementia.
- Common delusions include delusions about infidelity, stealing, and facial recognition.
- Common hallucinations include a PWD seeing people who are not there or falsely hearing the doorbell ringing, or people talking.
Coping Strategies
Delusions often catch family caregivers off-guard, especially when they are the focus of the delusion (“You took my money, you stole my jewelry.”) Reassure the PWD and validate their emotions. Get into their reality and acknowledge their losses. I heard a story about a woman with dementia who thought, incorrectly, her husband was having an affair. The daughter consoled her mother and acted concerned, rather than telling mom it was nonsense. Her mother felt heard and, in turn, never brought the topic up again.
Hallucinations can be very scary for the PWD as well as the caregiver. First, check the environment. Is the PWD watching TV and did the content of a show transform into their reality? Are there shadows in the room or a glare that could be misinterpreted by the PWD? Are there paintings hanging on the wall that might seem scary to a PWD? Try to modify the environment if any of these issues are present.
Reassure the PWD and try to determine if there is a reason for the hallucination. Could they have heard the doorbell ringing three hours ago and think it is still ringing? If the PWD is disturbed and anxious about the hallucinations, contact their physician.
WanderingBehavioral Challenges and Considerations
- Could the PWD be bored?
- Could the PWD need more activity
Coping Strategies
Enroll the person in the MedicAlert® + Alzheimer’s Association Safe Return® program by calling 1-800-272-3900. A Safe Return staff member can help you with strategies to encourage the PWD to wear the bracelet.
Remove visual cues that might stimulate wandering such as placing a drapery over the door. If the PWD doesn’t see the door, they may not feel they want to go outside. Also remove keys and coats from their sightline.
Create a wandering path inside the home. Change pictures, photos, and plants on a weekly basis to constantly stimulate the PWD. Take the person for a walk.
Anger
A family caregiver recently shared the following story with me. “My husband, a holocaust survivor diagnosed with Lewy body dementia, woke up in the middle of the night to go to the bathroom, tripped and fell. He broke two ribs and after a short hospital stay he was moved to a rehabilitation facility. We have no children and because of his personal history, he has a strong sense of attachment to me. The rehab facility is having difficulty dealing with him. When I arrived for a visit he was so angry that he punched me. I told him I would visit every day but it did not seem to make a difference. A few hours later he apologized for his outburst and promised it would never happen again. I have heard this before. What should I do?”
I asked the caregiver the following questions:
- What do you think is creating his anxiety? Is he receiving any medication for anxiety?
- Have you told the staff about his personal history and successful strategies you use to reduce his anxiety/anger?
- How does your husband react when it is time for you to leave?
- Is he someone who prides himself on his personal appearance?
I suspect his hospitalization and recent move to the rehab was very disorienting to him. His wife knew that her husband was anxious being there and missed her terribly. Whenever it was time for her to leave he became increasingly anxious. She would visit with him in an area near the elevator and realized her husband was not engaged in an activity when it was time for her to leave. She also explained her husband was a “ladies man” and his appearance was critical to his sense of self-esteem and identity.
After some creative problem-solving, his wife developed the following strategies.
- Share her husband’s personal history as a holocaust survivor— and the resulting need for attachment—with the staff at the rehab. Make sure all shifts on the rehab floor receive this information.
- Identify several staff members in various shifts that might be willing to give her husband a little extra TLC and pay attention to his personal appearance.
- Make sure not to leave during a shift change at the facility, which was a chaotic time at the rehab and a confusing time for her husband.
- Visit away from the elevator and notify the staff 5 minutes prior to leaving the facility so they could engage her husband in an activity or distract him in some other way.
- Speak to the physician about possibly prescribing a light dose of anti-anxiety medication.
After several days some of her strategies were working. Her husband’s anxiety and anger had diminished. He was still nervous when he sensed she was leaving but with the help of the staff his mood was improved and her stress was reduced.
It is critical to remember that caregivers must creatively respond to behaviors–reality and facts will not work. Changing your way of thinking is something that doesn’t happen overnight. It is a trial-and-error process that takes time. If you can remember to utilize (in the midst of a very emotional time) some of the techniques discussed in this guide, hopefully your stress will be diminished
