Strategies for Managing Care for Persons with Dementia
Reasonable thoughts from a Geriatric Nurse Care Manager & Daughter
By: Hildy Sheinbaum, RN
The Dementia Series: Part 2: Strategies for Managing Care for Persons with Dementia
Hi all! This month’s blog focuses on the strategies that my colleague Amy Burckhard (Director of Memory Care, Sterling Care) and I have found most helpful when managing care for persons with memory impairment. Hope it’s helpful to you as well!
Safety is of foremost consideration when managing care of an individual with dementia.
Two important things I want to highlight:
- Research has shown that people with even very early signs of dementia fall at an alarmingly high rate, averaging about four falls per year.
- People with dementia often have a drive to “go home,” even when the person is in his or her safe living environment (whether home is in a community setting or a private home setting). This can be difficult to manage and pose safety risks; very often caregivers look for strategies to address such situations.
Some suggestions to help manage day to day concerns related to the above include:
SAFETY:
- Remove scatter rugs
- In bathrooms, place grab bars in strategic locations for ease of use
- Place walkers or assistive devices in plain view of the person with dementia, as a reminder that it needs to be used when ambulating
- Remove potentially dangerous household items from plain sight and reach e.g., scissors, knives, household tools
- Place car keys in a secure, out of sight location to avoid the trigger of going out for a drive
TO ADDRESS THE URGE “TO GO” (i.e., I want “to go home,” “I want to get out of here,”), I suggest:
- Removing coats and hats from the line of vision— this eliminates the trigger and therefore the desire to “want to go out.”
- Closing blinds or curtains during the evening hours- times that often trigger the desire “to go” when sundowning occurs. “Sundowning” is a term that describes a state of confusion, irritability or agitation that is exacerbated as the day comes to an end. It is often manifested in persons with dementia.
- Disguising doors so that they don’t look like doors—so, for example, sliding a dresser or putting a chair in front of a door.
- Re-directing a person when he/she says, “I want to go home,” by gently changing the subject or engaging in an activity to take their mind off of the topic of “going home.” Typically, people with this need to “go” will often come back to this concept. The most helpful thing is to provide structure to the day so that the person feels safe regardless of where he/she is.
Tips for Managing Care for Individuals with Memory Impairment:
Structure to a Day
Providing structure to a day helps to focus a person with dementia on an activity and gives them a purpose. A daily routine is a comfort to those with memory impairment. Keep in mind that although memory might be failing, a person with dementia will often seamlessly revert back to the things he or she once loved. If you haven’t had the opportunity to see the Tony Bennett and Lady Gaga segment on 60 Minutes, I would highly recommend. Tony Bennett was seen unable to string words together while sitting in his home with his wife. When brought onto stage in front of a packed audience, he literally reverted back to the time he was a confident entertainer. He stood before thousands and came alive—introduced Lady Gaga, and proceeded to sing several songs without missing a word, beat or note. It was truly incredible.
Having a morning routine of shower, breakfast, an activity or two, followed by lunch, etc. does wonders for mood. That is precisely what Memory Care communities attempt to provide daily for their residents.
Tone and Intonation of Voice
Keep in mind that people with memory impairment are often extremely sensitive to noise. Studies have shown that loud music, loud voices, and noise in general creates an uneasiness in an individual with dementia and can lead to feelings of fear, anxiety, and agitation. The sense of hearing is heightened at all times. As a result, it is far more therapeutic to keep voices soft, music and television on lower volumes, and reduce stimulation whenever possible.
This holds true with any confrontational conversation. Remember that persons with dementia often lack executive functioning and things that may seem logical to us are not so to someone with memory impairment. Arguing is never productive in this situation. We typically advise to re-direct a conversation, simply change a topic, or gently offer choices that are more reasonable than the one the person with memory impairment may be focusing on.
So, for example, in the case of showering, which we know might be a challenging task, ask: “Would you like to shower at 10am or at 6pm?” rather than simply saying “Do you want to shower?” This can be helpful to get you to an answer that is more reasonable than a simple “No I’m not showering.” As difficult as it may seem in the face of frustration, the simple act of staying calm and quiet and re-visiting the challenging topic at a later time will heed a more agreeable result.
Understanding What is Behind Behaviors
Non-conforming behaviors can be a tremendous source of frustration to the family, caregiver, and the person him/herself. Behaviors exhibited in persons with dementia are typically a portrayal of an unmet need. While a primary cause of behavioral symptoms can be the progressive deterioration of brain cells, there are influences that can cause or exacerbate symptoms. It is incumbent upon us to figure out what the reason is behind the behavior observed. The Alzheimer’s Association notes that anxiety and agitation may relate to the person with dementia “biologically experiencing a profound loss of their ability to negotiate new information and stimulus.”
In early stages of dementia, people may experience behavior and personality changes that include irritability, anxiety, and even depression. In later stages of the disease, behaviors may progress to aggression and anger, anxiety and agitation, general emotional distress (can manifest as persistent crying), physical or verbal outbursts, restlessness, pacing, and hallucinations. While behaviors may be unpredictable, there can also be triggers. These can include:
- A move to a new residence
- Changes in environment— whether this is travel, a hospitalization, or the presence of different people
- Changes in caregivers
- Misperceived threats
- Lack of sleep
- Fear and fatigue resulting from trying to understand a confusing word, or simply not understanding a situation that can take time to process.
- An infection
So, how can we respond to behavioral symptoms?
- If the onset of a behavior is sudden, I encourage you to make an appointment to see your loved one’s physician. Urinary tract infections can often manifest with increased confusion, agitation, and unsteadiness on feet. And even further, any infection can result in changes in behavior in a person with dementia. I have taken care of patients who experienced hallucinations, unsteadiness with falls, and increased disorientation as a result of an undiagnosed pneumonia and UTI.
- If the behavior seems to be repetitive, for example, occurs every day at 5pm, it is important to understand what is taking place at that particular time and place. Perhaps there is unease as the sun is setting and the lighting is changing. Or, perhaps toward the end of the day, the person is feeling tired, and needs some quiet time but can’t express this. Look to see if there are any common threads, and make every attempt to get ahead of it. Remember, a person with dementia cannot always express his or her feelings, and frustration can take over and cause them to exhibit different physical and verbal responses. Someone who is hungry may pace throughout a house or a community, while someone who has to go to the bathroom may suddenly become agitated.
There are a number of things that can be implemented to address distressing behaviors, and this includes non-pharmacologic interventions, as well as initiation of medication therapy. While I am not a proponent of over-medication, I strongly feel that with proper physician oversight, medication does play an integral role in behavior management and should be considered when quality of life is compromised.
Non-pharmacologic approaches to managing symptoms can provide emotional and physical comfort and should always be implemented prior to beginning a medication.
Regardless of which course is chosen, it’s always important to have your own coping skills to manage what is taking place. The following pointers have been helpful to my clients:
- REMEMBER that your loved one is not intentionally acting out and does not have control of his/her emotions, so TAKE YOUR OWN EMOTIONS OUT OF THE PICTURE. Take a deep breath and understand that the behavior is not directed at you. Your anger will affect your loved one and will make the situation worse. I’ve observed people kicking and screaming and name calling caregivers. I always counsel the caregiver to remember that this is a disease talking— not the person, and it is not a reflection of YOU.
- If at all possible, identify the cause of the behavior, and ask yourself:
When was the last time the person went to the bathroom? When was the last time he/she ate? When was the last time he/she rested? Offer the bathroom, offer a snack, offer rest. - Think about what can be done to relax and quiet the behavior. Some peaceful music, or perhaps a quiet Frank Sinatra song? I had a client that would scream daily at 5pm. I would visit her and immediately turn on the CD player to Frankie’s “My Way,” and we would sing together in pure happiness.
- Avoid being confrontational. If a person is expressing the desire to call her husband who passed away years ago, do not argue. A better approach might be to “remind” her that her husband has a meeting at that time with his boss, and suggest she not bother him. Or perhaps even digress by saying, “your husband’s boss is a lovely person.”
Use of Therapeutic Fibs (“Fiblets”)
Most of us have been taught, and have taught our children, that honesty is so important in building relationships. YES! However, in the dementia world, my colleague, Amy Burckhard, and I, strongly recommend use of therapeutic fibs to cope (and avoid) behaviors. Become an actor! If the person with dementia is obsessing about something and getting agitated, or insisting that a person who died years ago is coming to visit, THERE IS NO REASON TO ARGUE. Individuals with dementia often do not recall who has died and when; trying to reason and explain this can re-open wounds and traumatize the person with dementia- almost as though he/she is hearing it for the first time.
So, instead of telling your loved one waiting for a parent, that the parent has died, consider saying, “oh, your mother is wonderful,” or explain instead that they are shopping, working, or vacationing, or anything other than that which will cause upset. If your loved one is intent upon driving the car that he hasn’t driven in 2 years, don’t argue; rather explain that the car is in the repair shop and will be back in a few days. And then talk about something else…. Quickly!
Understanding and Managing our Own Responses
Keep an open mind and realize that being “right” is not a competition with your loved one. Don’t let your ego get in the way here. Move yourself into their world, and understand that a calm, agreeing response will promote calmness in them.
Medication Management
As I mentioned earlier, I do believe that medications are a viable intervention when quality of life is compromised. It is important to seek the consultation of a geripsychiatrist who can carefully listen to what behaviors are manifested, and prescribe safely. When considering using medications, it is important to understand the potential benefits vs risks in order to make an educated decision on how to proceed. I have worked with psychiatrists to put into place small dosing for clients to correspond to their agitation times. In my opinion, small doses throughout the day achieves a steady state blood level that can optimize calmness without inducing a drugged effect. Realize that medications can have side effects that affect different body systems in addition to a person’s balance. So, it is important to start off at low doses.
Sleep is an important factor when considering behaviors. Often agitation will occur in individuals who have interrupted or not enough sleep. So, observe sleep cycles and speak with the doctor if your loved one is not getting enough.
Maintaining Quality Relationships
For as long as possible, it is important to nurture and maintain “sense of self” for an individual diagnosed with dementia. Persons with dementia should be assisted to find ways to engage in activities that bring meaning into their lives. And the same holds true for the caregiver, who is often a spouse or child. I stress not to immediately cast your loved one into the role of “patient.” Give them choices, make them feel respected and important.
Studies have shown that being active, both physically and mentally, can improve the quality of life for persons with dementia. As changes occur in the brain, learning new things becomes more difficult, if not impossible. But there is muscle memory—once your body knows how to do something, it often retains that. Keeping someone physically active will help with balance and agility for the future, even as the brain may be forgetting how to do these everyday tasks a little at a time. Regular exercise, walking, swimming, even strength training with a knowledgeable therapist can add to this. And doing this together can bring joy and fulfillment.
Support for You and Your Loved One
My colleagues and I refer to dementia care as a marathon…. NOT a sprint. It is not an illness that can be managed alone. While a person with a dementia diagnosis may need care, it is without question that the caregiver and family must be put into the equation and their wellbeing must be addressed. And it really doesn’t matter whether you are doing the hands-on caregiving, or you have an outside caregiver, dementia—whatever the type—is a challenging disease that can go on for many years. Put safeguards into place to ensure your own health and well-being. The analogy of oxygen on an airplane is quite relevant…. you must put your own mask on FIRST, in order to take care of the person next to you who might not be as capable as you are.
Reach out to others to provide often much needed support. More of this in my next and final blog in the Dementia series.
Stay well!
