Dementia care requires a lot of time and effort, not to mention patience and love. For those of you who care for someone with dementia, or know a caregiver, you can appreciate that these individuals are unsung heroes.
While caregiving can be an incredibly challenging role, there are strategies that can be implemented to help ease the more difficult moments.
As dementia progresses, individuals often experience confusion and disorientation to the present moment.
This usually involves living in a past state of reality. For example, your loved one may express an urgency to get ready for work, despite the fact that he or she is retired.
Memory loss can impact orientation to time and situation, causing individuals to re-experience routines and events from their past.
These moments of confusion can be very challenging for not only the individuals with dementia, but also their caregivers.
This article will shed light on what I believe to be the most important strategy to implement initially with your loved one, as it relates to dementia care during times of confusion– leading with empathy and identifying what’s needed.
Dispelling a Common Dementia Practice
A common practice many do in these moments of confusion is to immediately reorient the individual to the present (I am guilty of this as well).
This involves correcting the individual when he or she states something inaccurate. For instance, when referencing the example above, a reorientation strategy would be to tell the person he or she is retired.
In earlier stages of dementia, this type of reasoning may work to help orient an individual to the present day.
However, in later stages of dementia, reorientation strategies are ineffective. This can also cause the individual with dementia to become frustrated by accusations that his or her reality is false.
When to Use Orientation Strategies in Dementia Care
Now, it is important to note that there are certain situations that orientation strategies are necessary for safety and participation. For instance, in the hospital we diligently orient our patients who are confused with verbal cues (telling them today’s date) and visual aides (showing them a calendar) to remind them of where they are and when they arrived at the hospital.
This type of orientation is used as a safety measure so they do not assume they’re at home and try to get out of bed and fall or wander off without assistance.
The key in these moments of confusion is to help orient the individual, while also maintaining his or her respect/dignity. It can be embarrassing and frustrating to an individual with dementia to be constantly asked, “do you remember… ?”
Take a moment and reflect on how you would feel if you were consistently being asked questions to recall something you could not remember. This is especially upsetting when the information is something the individual believes he or she should remember, such as the names of their grandchildren.
What’s a Better Strategy?
In order to avoid distressing your loved one, a more holistic strategy is to simply provide the information to the individual instead of asking for him or her to recall it.
For instance, an excellent strategy I learned from Dr. Katie that she uses with her patients who are confused in the hospital is to immediately provide orientation information while greeting them for their session. Such as, “Good morning, my name is Katie your occupational therapist today. You are in the hospital to get better with doing your daily routine after breaking your hip.”
Through this strategy, rather than questioning them, you honor the person by preserving his or her self-esteem and integrity without embarrassment.
Step 1: Leading with Empathy
In order to lead with empathy, the first step is to shift one’s mindset.
It’s very common in our culture to correct someone when he or she makes an inaccurate statement. This usually occurs almost automatically.
When communicating with your loved one with dementia the goal should be on connection and meaning, not accuracy.
Shifting this mindset from accuracy to empathy can be challenging initially, like learning any new skill. However, with time and practice, this strategy not only helps with deepening your relationship with your loved one, but also promote his or her emotional regulation and quality of life.
In order to foster a mindset of empathy, it is essential to approach each conversation with intentionality.
Instead of initiating the conversation with correction, lead with validating your loved one, and his or her experience. This can involve acknowledging emotions, thoughts, and fears.
For example, if your loved one presented with restlessness and angst about being late for work, you can lead the conversation with a statement like, “I can totally see why you are feeling stressed this morning, I know how much you value being on time.”
The key is to validate the emotions and feelings surrounding the reality they are experiencing. By acknowledging your loved one’s feelings, you are allowing him or her to feel heard and understood. This ultimately fosters connection and value.
Think about it. At the end of the day, does it truly matter for your loved one’s overall well-being to know the year or day of the week?
Think of these moments as opportunities to connect to your loved one’s vulnerability and offer affirmation. By shifting your frame of reference to how you interact with your loved one, you are opening the door to promote your loved one’s quality of life through the power of empathy.
Step 2: Identifying What’s Needed?
After completing the initial step of leading with empathy, the next step is to ask what is needed?
Difficulty communicating needs and regulating emotions are common challenges associated with the progression of dementia.
Internal emotional regulation requires cognitive awareness to determine what is needed in a moment/situation.
For example, when I am feeling restless or agitated, I have the cognitive awareness that I need to move my body. This usually involves some form of exercise to release this excess energy inside of my body to regulate my emotions.
With more advanced stages of dementia, an individual loses this insight. This is why individuals with dementia need a supportive environment in order to thrive and modulate their emotions.
As a caregiver, you have been given the unique opportunity to foster this loving, empathetic environment. You can nurture this environment by asking “what does my loved one need right now?” in moments of confusion and restlessness.
As you implement this practice, you will become more aware of what your loved one needs throughout the day.
Depending upon each circumstance, your loved one may require support in one of the aspects of wellness including physical, emotional, spiritual, or cognitive.
The following are some guided questions/suggestions in order to determine what to implement with your loved one during times of confusion.
Physical
- Has my loved one exercised today either through walking or completing household tasks?
- When was last time my loved one had a nutritious meal?
- Is my loved one tired and needing to rest?
- Has my loved one had an adequate amount of water today?
- Has my loved one consumed caffeine or alcohol today?
- Both of these can significantly impact one’s overall mood, and should be consumed in moderation under the regulation of a doctor.
Emotional/Cognitive
- Does my loved one need emotional support through physical touch, such as a hug or handholding?
- Has my loved one participated in an activity that stimulates his or her mind today?
- For suggestions on great functional cognitive activities to implement with your loved one check out this article.
- Does my loved one need social support, such as visiting with loved ones, engaging in a meaningful conversation, or participating in a social activity?
- Some examples of social activities could include playing a simple board game, having family dinner, playing with one’s grandchildren, reminiscing through old photo books.
Spiritual
- Is my loved one feeling a lack of purpose?
- Do they need engagement in an activity that provokes meaning and intention?
- For an individual who is perseverating (hyper-focused) on his or her work, attempt to give them a “work-related task” at home. For example, if your loved one was a teacher you can give them some mock papers to grade.
- Does my loved one respond well to music? If the answer is yes, attempt to implement their favorite songs or religious hymns.
This is not an exhaustive list, but by first leading with empathy then following with asking what’s needed you can help transform your loved one’s environment to promote emotional regulation and support during times of confusion.
Personal Application
In order to demonstrate this strategy I wanted to share with you a personal example.
Sarah (pseudonym) was a recent patient we had at my hospital with advanced stage of dementia. Sarah was the brightest soul you could ever meet. She loved interacting with everyone and we frequently gave her “tasks” to complete, such as organizing mock hospital papers.
One day Sarah appeared very depressed. When I wished her good morning, she began to cry, while expressing she was not doing well because her mother was dying.
In that moment, instead of saying, “Oh don’t worry, Sarah, considering your age, your mother has probably already passed!” I met her with empathy.
I acknowledged her feelings of sadness and grief. Then I intentionally asked myself what was needed—and decided to provide her support from the emotional realm of wellness.
I grabbed her hand and held it while she cried, and said, “We are here for you.” After that moment, Sarah requested to be alone and went back into her room to rest.
The next day she was back to her bubbling self, laughing and smiling at everyone who passed her in the hallway.
In conclusion, I implore you to try this strategy next time your loved one is experiencing confusion and dwelling on a past situation/circumstance.
I also encourage you to give yourself kindness and compassion in this process.
You may need to try different techniques in order to determine how to best support your loved one. Also, be sure to ask yourself what YOU need throughout the day in order to promote your wellness and resiliency during your caregiving journey.
